No Chemo - Surgery only
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Topic: No Chemo - Surgery only
Posted By: outnumbered
Subject: No Chemo - Surgery only
Date Posted: Feb 04 2009 at 10:35am
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I just wanted to find someone out there who may have been where I am. I had a mastectomy and it was felt since my tumor was so small, no chemo was needed. Now I am having second thoughts. Especially as I research TNBC. I wish I knew of this site 6 months ago and did more research then. Is there anyone out there who is fine after no chemo? ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Replies:
Posted By: outnumbered
Date Posted: Feb 04 2009 at 5:07pm
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chirp chirp (crickets)
------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: sibu
Date Posted: Feb 04 2009 at 5:21pm
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Christina Applegate? Are you there? ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: Tracy
Date Posted: Feb 04 2009 at 5:39pm
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Perhaps it's time to get a second and/or third opinion. I don't know the answer but peace of mind is priceless. That should be a commercial. Search for that peace of mind. ------------- Tracy San Diego DX 12/20/07, Stage 2, TNBC, Grade 3/2.5 cm Chemo start 2/14/08; rads ended 9/08; A/C - Taxol; Neg. Sentinol Node; lumpectomy; past 5 years! |
Posted By: Paula F
Date Posted: Feb 04 2009 at 5:43pm
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I am going through the same thing right now and am scared after reading that everyone that has triple negative has been through chemo. Did your surgeon recommend this? Did you go to an oncologist? |
Posted By: Tracy
Date Posted: Feb 04 2009 at 5:50pm
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First, no single cancer is us is the same. That's a very important filter I had to learn. Second, my surgeon is terrific but he is not an oncologist, and he thought I would only need radiation. Third, I did see an oncologist who taught me the first principle. I recommend, if you haven't, to see an oncolgost and then to also, if you haven't yet seen one, don't assume much with principle no. 2. Not alls surgeons are equal in terms of their experience with this disease. If you want to chat more, send me a private messang. ------------- Tracy San Diego DX 12/20/07, Stage 2, TNBC, Grade 3/2.5 cm Chemo start 2/14/08; rads ended 9/08; A/C - Taxol; Neg. Sentinol Node; lumpectomy; past 5 years! |
Posted By: Nancy
Date Posted: Feb 04 2009 at 6:04pm
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Tracy,
You are so right....the onc is the one to ask...not the surgeon. They no little to nothing about the treatment. They get the cancer out of your body, and the onc gets all the remiang cells...if the surgeon missed any.
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: kirby
Date Posted: Feb 04 2009 at 6:10pm
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SAra,
I think preffered treatment is a "window of time" in giving chemo after surgery. I would consult with an oncologist with your questions. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: outnumbered
Date Posted: Feb 05 2009 at 3:20am
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Everyone, thanks for your feedback. I have seen my oncologist one time and have been in touch with her via email. I kind of explained this on another string, but to clarify: My husband (not a doctor) has worked for 15 years with my oncologist. She is renown, involved in many studies and well published. So when she said no chemo, her tumor board said no chemo, and the 2nd opinion she recommended at mskcc said no chemo, I was feeling good. Although there has been this nagging feeling in my gut that something was not quite right. I chalked those feelings up to that "oh my God I am done" syndrome. I have since done tn specific research. Also last week I had a PET/CT and 2 4mm nodules were found on my right central lobe (not hypermetabolic tho, too small to light up). Between the research and the Pet/CT I am now pretty much in a panic and I have been trying to get in touch with my oncologist. My husband is calling her cell today. I have a feeling it is uncommon to discover tnbc as small as mine. Thanks again. ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: CarynRose
Date Posted: Feb 05 2009 at 5:22am
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Sara,
This is just my opinion. Given how quickly TNBC grows and that chemo is effective against it (for that same reason), I'd lean towards chemo.
Mucho hugs,
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: outnumbered
Date Posted: Feb 05 2009 at 5:35am
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ok, here is an update. My husband spoke to my oncologist.
#1 She is 99.9% sure that the 4mm nodules on my right center lobe are nothing. Re scan in 6 months.
#2 She and her colleagues are adamant that I do not need chemo regardless of my TN and BRCA status. I am cancer free
#3 I am normal in feeling the way I do
#4 She can recommend someone for me to talk to.
I WANT TO SCREAM!!
I did go back and read the Cristina Applegate string. I must tell you I was so naive. I was getting diagnosed and having my surgery right around the same time. I felt a kin-ship with her. Yippee we are cured and and cancer free!!!!!! Did we ever find out if she had IDC or DCIS?
By the way, although I am a newbie and am coming off quite psychotic, that is just this week. Normally I am not consumed by all this. Sure its always in the back of my head but I guess its easier to be positive when your head is in the sand.
I so want to be wrong about what my gut is saying, but I fear sitting back and proving I am right if you know what I mean.
My husband did say if I wanted to go to NC and see Dr Carey we will. I am toying with the idea. You gotta understand, when I first found my lump, they thought it was an infected lymph node - WRONG - I had no family history, couldn't possibly be BRCA positive - WRONG- I am not really trusing the crystal balls of the doctors at this point. I have reason to be cynical.
Thanks for letting me rant. ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: peach
Date Posted: Feb 05 2009 at 6:05am
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Sara,
I know this is a difficult time I question everything about my diagnosis and treatment. It would be so nice to be able to trust our Doctors and not have to question them.
There is a lady on here who has her own web site http://www.nosurrenderbreastcancerhelp.org/ - http://www.nosurrenderbreastcancerhelp.org/ , I seem to remember reading somewhere that her sister chose not to do chemo and was doing fine. But I don't think that seems to be the norm as far as chemo goes. Hope I haven't broken any rules posting the above website.
You're doing the right thing by checking out all your options. I feel like we have one chance and we need to make the most of it.
Good luck and let us know what you find out.
Pat ------------- Dx 5/07 TNBC IDC Stg.2, Gr.2, Sentinel node 0/1 BRCA- Lumpectomy,Chemo(AC-T DD)Rads |
Posted By: krisa
Date Posted: Feb 05 2009 at 6:20am
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sara, what a tough situation to be in. i will keep you in my thoughts and prayers.  |
Posted By: Nancy
Date Posted: Feb 05 2009 at 9:03am
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Sara,
Oh...the Christine Applegate thread!! Yeah...that was a real winner. We never did find out if she was TNBC either. The fact that her mother also had bc probably...but not positvely might point to her being BRCA+. She did a great disservice to many women. We stated that. So did the women on the TNBC Foundation board.
In our "Questions for your doctors", one of the points we made was asking if your doctors collaborated with others in their field. Meaning..was this with doctors from other hospitals, not only here in the states..but throughout the world. Some have their heads in the sand, and they just collaborate with those in their hospital.
You are not naive Sarah, and you certainly are not psychotic. Unless you are able to talk with other TN women, and are able to discuss what treatments they had, how can you possibly make informed decsions. Not your fault...as all doctors should be telling their patients of other resources. Their egos prevent them from doing so....not all of them...but a large percentage of them.
How sweet of your doc to tell you that you are normal
 Isn't that special. Look at the times they were wrong Sara, and if you have doubts...follow that gut instinct ...it is 99.9% correct. Lori's was 100% correct.
Many hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Nancy
Date Posted: Feb 05 2009 at 9:37am
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Pat,
There are no rules on this site...unlike many other bc sites. Nosurrender is a member of this site and even if she was not, we welcome all the resouces we can get. We are always telling members of other sites. With 186,772 women dx with bc (latest source was 2004), consider all the women that you could meet and talk to by having other sites.
You are also right as to having one chance to make the most of it. You need to question every word that comes out of your doctors mouths, ask them to provide hard copies for every bit of information they give to you. if their ego is too inflated for all your questioins...then fire them!!As we have said so many times...this is your body...your life.
Hugs,
Nancy
------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: trip2
Date Posted: Feb 05 2009 at 10:32am
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Sara??
She would reccomend someone you could talk to? Please, how insulting to you imho.
If she says she is 99.9% sure you are cancer free than I would like to know this doctor's name, you may PM me if you like, last time I looked there was no cure for breast cancer. I have yet to find information that I've read or read from another member that her doctor knows for sure it is gone, they may think/hope but they cannot know. If so we would all like to be treated by this doctor.
I believe it has been mentioned bc can not only travel through your lymph nodes but your blood stream. They cannot know if you have cells in there. That is what chemotherapy is for.
This is your decision and it is good you are trying to figure this out, many women have been in your shoes and have had experiences with doctors that would make you shudder but this is how we learn, by asking others who have been thru it and you are doing just that.
Good luck to you dear, I wish you well in your decision. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Reggie24k
Date Posted: Feb 05 2009 at 3:59pm
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Hi all,
I was diagnosed with breast cancer 2 weeks ago and after my MRI Tuesday night I was told today that it was triple negative cancer, I had no idea what it meant. I mean they try to explain it to you but nothing makes much sense or my mind was just not absorbing it all. (They throw so much at you so fast) Oh well, I researched some on the internet. I will be having surgery then chemo and then radiation.
 I found this site while researching. How is everyone doing with your treatments? I have no idea what to expect. I am trying soooo hard to be optimistic. |
Posted By: Nancy
Date Posted: Feb 05 2009 at 5:19pm
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Hi Reggie,
Welcome to the site. If you have to join a women's club....the TNBC foundation site is the elite among the elite
 I am Nancy and my daughter Lori was dx with TNBc June, 2007. I have been on the site for18 months now. When you are dx, as with my daughter Lori, you are in a state of shock, and as Lori says, she remembers very little of the first 5-6 weeks after dx. You really need some one to go to all your appointments, take notes....be your "cancer secretary" ...that's what Lori calles her hubby.
Be optimistic Reggie... but look at the reality of the situation also. They say that tnbc is aggressive, and that is why you will see almost everyone having chemo, and if they did not get clean margins during surgery, then they have radiation also. They call it insurance? That's what Lori called it.
Yes, the medical profession in most cases throw everything at you all at once. Take a tape recorder with you for all your appointments. There are many resources here on the site, much of which are from the gals here, who have been there...done that. I will send you a private message with my email address, so that I can give you directions for accessing the resouces.
Many hugs...and again we welcome you with open arms,
 Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: billie
Date Posted: Feb 05 2009 at 7:26pm
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Hi Sara,
I am so sorry that everything must be so confusing to you.There is a couple of things that I would like to chime in to have discussed.
If I am not mistaken,there was a young woman whose foundartions name is Kymmie.She has completed her treatments just recently.Actually a short time after my sister.I wish that I could remember the size of her tumor,but it was very small also.Somewhere around the size of yours or possibly even smaller.She lived and worked in Nevada and she would fly back and forth for treatments in Houston,Texas.MD Anderson.Cancer Hospital.MD Anderson is where some studies were done on triple negative breast cancer.
The point that I am making is this.She received both treatments,chemo and radiation.I know that she debated for a long time but she finally decided on the protection that the treatments do.
Maybe you should put in a call to MD Anderson for their opinion.Get on the internet to find some numbers.
Also Kirby could be right.You might need to ask them this question also.Is there a time element here.Believe me ,you will never rest easy until you find some answers. Lots of Huggggsssss Billie
------------- Billie posting for sis Betty/67/caucasion female/diagnosed 2-27-08/gradeIII/7mm/invasive ductal carcinoma/T N /clear margins/node neg/4 X's taxotere-cytoxan/36 rads/7-08 PET/CT double image/no cancer |
Posted By: mommy2bigblueye
Date Posted: Feb 05 2009 at 8:34pm
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Hi Sara,
as everyone else, i can only chime in with my opinion. If u have doubts, see another doctor. it doesn't mean that doctor is going to tell u something different, it just means that IT IS YOUR HEALTH, YOUR LIFE - and you have the right to go to someone else if your doctor is not making you comfortable with their care. honestly, your dr, should have recommended that if u were that uncomfortable with her opinion on not getting the chemo for you to get a 2nd opinion (and not from a shrink) A second opinion just gives u another perspective. I know people who have gotten 3rd and 4th opinions for lesser cosmetic things. this is your life and you have to follow your heart. if u have concerns and believe that something is not right, do not stop questioning and pushing until you get peace! now, as for my oncologist, she was very clear, anything over 1 cm at my age should get chemo and that was before they were sure that it was TN (they were still waiting for the her2 results at that time) Her explanation to me (which I have read in other books), at our age, our cells reproduce faster so once u get over 1 cm there's enough of chance for it to be other places, microscopically to make chemo worthwhile.. good luck! lots of hugs... Melissa ------------- Dx 12/9/08, IDC, bilateral mastectomy and lat flap reconstruction 2/9, Stage IIa Grade 3, 2.4cm, No nodes Finished Chemo 7/23- 4xAC , 12xTaxol plus Avastin; BRCA1+, OOPH 11/09 |
Posted By: caro36
Date Posted: Feb 06 2009 at 1:14pm
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Hi Sara, I've been where you are very recently. I know how you feel!! I was diagnosed with TNBC last august. Only a 6mm lump. I was told I didn't need any chemo. I was happy to hear this for about an hour and than I started to doubt this treatment plan. I went for a second opinion and got the same news. I went for a third opinion and again, same thing. Than I decided to look for a different opinion. The specialist cancer clinic was very clear. Based on the fact that it was TNBC and my age they thought chemo was absolutely needed. Since they do a lot of international research on TNBC I decided to do chemo. I've been through 3 rounds of TAC and have another 3 to go. Since I was diagnosed I was advised to seek mental help on so many occasions. They thought I was obsessed since I came packed into their offices with TNBC information, treatment plans, facts and statistics. A wise woman on this forum said to me "I used to be nice, than I got BC". I didn't need a shrink I needed docters to listen to me. You are a very strong woman that you went back in there and asked critical questions.
lots of hugs,
Caroline ------------- lumpectomy 9/2/08 6mm TN tumor 38 rads, 13 boost 6xTAC finished 04/10. BRCA1+ bill. mastectomy, imm. reconstruction using tissue exp 01/10 |
Posted By: billie
Date Posted: Feb 07 2009 at 7:43am
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Hi Caroline,Sara,and to all women out there that take a minute to read this post.
How in gosh name can we get the word out to all the women newly diagnosed every moment of every day that this subtype of Breast Cancer is not your normal breast cancer.This Breast cancer will kill you fast if you have not received the correct treatment and sometimes even if you have gone through every treatment that is available for triple negative you may still die,These treatments include,chemo,radiation,to begin insisting on a mastectomy..Oh yes,we all are very aware that there are lucky ones that have made it without some sort of chemo or radiation or a mastectomy.But to those that have made it without one of these treatments,you need to be getting down on your knees and thanking the man up above for the remainder of your life.We are not stupid women by no means,but after we read things that have happened to others on this foundation,it does not take us very long to realize that with this breast cancer,and as little as they know about it ,it is quite frankly ,THE LUCK OF THE DRAW.But with this one ,you also have to insist on useing every bit of arsonal out here.
I do not know how to do this,but somehow we have got to get the word out to all women ,not just the young,the middle aged ,the elderly,caucasion women,women of color,ALL WOMEN,that this BREAST CANCER ,will kill you and it will kill you fast.And while you are spending your time putting your trust in this little home town dr. that have know and you trust so well,or even a big upscale knowledgeable ,but very ARROGANT DR. who believes that his choice of treatment is the only choice for you out there,within a year,you could be DEAD.That is how aggressive this subtype is.It shows no mercy for anyone.
Some how we have got to get the word out to the women that have NOT been diagnosed with breast cancer yet, that it is sometimes up to them, if they want to live,to gather up every bit of knowledge they can find out here about triple negative.So often,the women that have been newly diagnosed ,never hear the words triple negative until they are way into their treatments.Or quite possibly the words were said ,but those words did not stick in their heads as it was with my sister and I.Her surgeon took the time to mention those words ,but our minds could not get past the word cancer.
I do not know the statistics of how many people have been touched by some one they know getting diagnosed with breast cancer.But this is just an idea.What if all of the active members on this foundation joined other breast cancer websites, and actually all cancer wibsites, and begin telling everyone how important that it is that biopsy,chemo,radiation,and if you feel that mentally you can handle it ,a masectomy,is the best known treatment at this time for the breast cancer sub type TRIPLE NEGATIVE BREAST CANCER.And how important that it is to know in advance what type of treatment you must receive no matter what the size of the tumor if the 2 words triple negative are ever used in your diagnosis on your path report.This is the only known treatment at this time for this very aggressive KILLER breast cancer.At this time my sister and I for loving my sister have been lucky that her choice of treatment has been working thus far.However both of us wish that we would have had a little more information at that time about choosing the lumpectomy verses the masectomy.That part there I am convinced that we would have changed.
Lots and Lots of Hugggggssss to anyone that has been touched by the word CANCER. Billie
------------- Billie posting for sis Betty/67/caucasion female/diagnosed 2-27-08/gradeIII/7mm/invasive ductal carcinoma/T N /clear margins/node neg/4 X's taxotere-cytoxan/36 rads/7-08 PET/CT double image/no cancer |
Posted By: cg---
Date Posted: Feb 07 2009 at 8:42am
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Dear Billie,
I believe, especially after reading the latest, newest, youngest members...we are targeting the wrong audience to tell them about triple negative breast cancer. We need to target the people who hold our lives in the palm of their hands! Just think about this for one moment...I went to an author of a book on breast cancer, head of the whole breast cancer program in the clinic, a decision-maker regarding protocols and policies...AND HE DID NOT MENTION the hormone status to me until I asked him he was talking about hormone negative breast cancer. Maybe he thought I was not intelligent enough to understand the concept of negative and positive hormone breast cancer...all he said was "yes" and then we got the famous "you aren't going to ask questions all the time...? because I have been an oncologist for 25 years and you have had breast cancer for 6 weeks speech" followed by the "once upon a time there was a breast cancer cell, and it grows and grows and sometimes cells break away and you get breast cancer in another part of your body".
Billie - we should start a grass root movement educating oncologists to provide all information regarding a woman's pathology so that women can make INFORMED treatment decisions. We should petition medical schools to stress the importance of treating patients with dignity and respect and to talk to them like the intelligent human beings they are. They should be mandated to provide all information in a factual manner, reviewing ALL options. Quite frankly, I send a letter to one of our Member of Parliament suggesting that all oncologists take a mandatory course at the School of Veterinary Medicine to find out how to tell patients about their diagnosis, pathology, treatment options....I had a better understanding of my dear Max's (my dog) cancer, pathology, test results, treatment options, prognosis than my own - because the vet treated us like we mattered. My husband and I were treated with more respect and dignity by our veterinary oncologist then my own medical oncologist and we were astounded. My Max got far superior care and treatment than I had ever got at the first cancer clinic I attended. I prayed they did not kill me - since each new doctor at each appointment did not know my name, or my treatment or whether I had a lumpectomy or mastectomy, never entered a room with a chart...and did not know why I needed to know what my blood counts were other than "fine to go to chemotherapy". The vet took the time to explain all the laboratory values, concerns about Max's ability to have treatment based on test results. We had ongoing discussions, calls giving us updates, we called during the night to see how he was sleeping after surgery. Yup, Max definitely was treated better when he was diagnosed with cancer and in retrospect...I was treated worse than an abandoned dog.
We have to go after the white coats Billie to change how women are treated!
Just my humble opinion from my own experience and reading similar experiences of many, many other women.
For anyone wondering...I threw the book he wrote after the first appointment and broke up with him as soon as possible and probably through Divine Intervention (because in Ontario to change doctors is almost an impossible undertaking) I am at another clinic where I feel safe...just the fact they know my name raises the standard of care they deliver...and they actually have a chart and know what I had done and what is outstanding...I am reduced to tears to think what I endured when I was so vulnerable. In retrospect, I would never ever have taken Max to the oncologist nor the cancer clinic after the first visit I had for myself! Some of staff at the first cancer clinic I was treated at were more toxic than the chemotherapy I was getting. There were some really nasty, nasty staff that worked there.
Connie
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Posted By: billie
Date Posted: Feb 07 2009 at 10:04am
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Oh Connie,
How I agree with you.And I am sure that all of us if we knew the way would be glad to do what ever is needed.And I wish that there was a way to go after these arrogant white coat dr.s. and if some one can come up with a plan I am all for it.
But,if we are able to do anything at all,I believe that we would be able to reach a laymen just like us faster than we ever could ,someone who half way believes that they are God.
And before I get some of you ladies stirred up,I want to make it clear that I am in no way includeding all dr.s.To those that have had been fortunate to have found a fantastic dr. that does not treat you like a number,I am extremely proud for you.
And that is what I kinda meant Connie,we are not going to change what this arrogant, uncaring ,white coat dr. is telling you !!!!!!.We will never be able to do that.So we must get the word out to the women.
They have to get there selves well informed about this sub type and as some of the ladies have said that their oncologist said to them.If you have to get breast cancer then this would be the one to choose for yourself.Again ,we are not stupid.We all know what they say about this one actually responding to treatment (CHEMO) better than any of the others.But what sticks in my crawl is that some of these dr.s out here can not seem to get their game plan going right.When with this subtype time is not on your side.The right choices have to be made at the beginning of treatment.And that if you are informed with what is needed for you at the beginning of treatment ,you can then demand ,and if he does not listen,demand another dr. until they get it right ,but you will maybe have gained a little time by not going through unnecessary treatment.
Oh Connie when I read the posting of Guitargirls sis ,I can tell you that I lost it.In todays tecknowlegy such a loss should never have taken place.I am so much grieving for her sister Betty and the also for the 2 little girls that she had to leave behind.
Lots and lOts of Huggggssss to all of you beautiful ladies Billie ------------- Billie posting for sis Betty/67/caucasion female/diagnosed 2-27-08/gradeIII/7mm/invasive ductal carcinoma/T N /clear margins/node neg/4 X's taxotere-cytoxan/36 rads/7-08 PET/CT double image/no cancer |
Posted By: cg---
Date Posted: Feb 07 2009 at 10:14am
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Billie,
When I read guitargirl's sister's story....as I could think of was 2 little girls without a mother because the doctors Looked but did not SEE, heard but did not LISTEN. Can you believe this happened in this day and age in the United States of America? The most technologically advanced country in the world, that has some of the greatest scientists and minds in the world....It should not have happened and yet it did because they held the Betty's life in their hands and failed those two little girls.
Maybe you are correct that by educating and supporting the women that get brushed aside or do not have the care they need and deserve lives will be saved...but you know then we have to get the latest and best information about treatment available for TNBC - every time they get ignored, every time they get dismissed, or told to go for psychiatric treatment...we have a responsibility to be there for them...so another woman does not die the way dear guitargirl did...under medical care!!!
Love,
Connie
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Posted By: trip2
Date Posted: Feb 07 2009 at 10:37am
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'Since I was diagnosed I was advised to seek mental help on so many occasions. They thought I was obsessed since I came packed into their offices with TNBC information, treatment plans, facts and statistics. A wise woman on this forum said to me "I used to be nice, than I got BC". I didn't need a shrink I needed docters to listen to me. ' Caroline, I brought this quote above from your post, you are also a very wise young woman who had to learn the hard way and persist to find answers.
It is a shame but usually this is the way it works.
Someday soon this has to change for the sake of everyone with this diagnosis.
I also lugged in my copies of articles and studies and they didn't even want to look or listen. Once my ex-Onc took one of the articles I had brought to him and held it by the corner as if it too were diseased and might spread to him with the promise I might add that he would give it a look see, wanna bet if he read it? Nope, sure it hit the can behind my back.
This ex-Onc never suggested I see anyone for couseling but did suggest after a few years together and his look of frustration as I asked him yet another question or two that I "get off the internet and get a job".
Well let me tell you that did not go over well and I now have another Oncologist but will say it is not an easy job changing over in the middle of the stream it is better to continue to persist for the best of care you can find, any of you reading this, do not take nonsense from Dr. Whitecoat just because he/she says so, question them with all of your heart.
Take your copies of articles, study reports, list of questions. Persist.
This is our lives that are at stake as you all know and this touches something in me that obviviously hits a button. I do know that the women here are all figuring it out pretty darn quick, good for you and keep up the good work.
No thank you I don't need a shrink, or a job nor to stay off the internet, I am not obsessed I have TNBC and need a good Oncologist.
I will add to this post by saying there are wonderful Oncologists out there and some of us will be lucky enough to land in their office. They are all not to be trusted by any means. You will be able to tell by how they treat you and their demeanor/qualifications. Just so you know you feel you are in good hands that is what matters because the two of you will be spending alot of time together. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: CarynRose
Date Posted: Feb 07 2009 at 11:07am
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Even my doctors at CTCA sat me down and told me to trust them and get a hobby other than breast cancer. I know they meant well, but as I reminded them, of all those in the room, I was the one who had the most at stake and so, if I had a question or found something out there in the ether, I most certainly was going to bring it up. And that was especially if I weren' t feeling good or was noticing symptoms.
And then I remind them that it's the practice of medicine, not the perfect of medicine AND that treating and curing triple negative breast cancer is way out there on the skinny branches of cancer research. NO ONE has the answers and my ideas might be just as valid as theirs.
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: trip2
Date Posted: Feb 07 2009 at 11:28am
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Connie and Billie, I believe you both are correct. Information on TNBC needs to be out there to educate women even if they are never diagnosed. The fact that we are a small group by nature does not mean that our message should not be loud and clear, especially regarding the fact of it's aggressiveness and time factors involved. Loud and clear.
Then or so it appears to this woman who sits at home on her computer and reading that because of the newness of TNBC, even the tag TNBC may be a temporary name since they don't know what else to call it! They don't seem to be able so far to get a grip on exactly what is happening here and yes this is getting better. But meanwhile back at the ranch, with little material out there for doctors to go by they throw at us the same thing they throw at everyone with the hope it will stick.
We also are going to have the Oncologists who are slow or don't find the time to upgrade what little information there is out there for them to implement into their treatment plans.
So wouldn't targeting both areas, the public the Oncologists, Radiologists some of whom like to give out opinions to women I have read in this forum, primary doctors and even surgeons?
The reason I even mention surgeons is because how many times, mine included twice I might add, gave me the incorrect information which you take extremely seriously as you usually see them before the Oncologist unless going with a neo-adjuvant treatment plan. They like to throw out the ole 95% cure rate. Right, didn't even know there was a cure.
That is wrong for them to say in that fashion and instills hope and the wrong information from the get-go to a woman who needs told much more. I think also we might throw the media in the pot with the rest. This has to get out and if the public/medical field would realize what this is doing to young women maybe their heads would turn and they would listen.
This is agreed one of the things this Foundation is working so hard on and that is to get the message out there on how important it is to have the best treatments available to all women.
These are all of my personal opinions and not those of others nor this Foundation. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: caro36
Date Posted: Feb 08 2009 at 10:06am
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I think all the pink ribbon merchandise and events make people think breast cancer is some sort of a glamour party. It's like the new valentine's day! I had a very hard time convincing my family and friends that this is actually a very serious illness. And that TNBC is a very aggressive form. My best friend still has a very dismissive attitude, like "OH breast cancer, you'll be fine". (so far for being best friends...) Tomorrow I'm going to see my surgeon because I have a lump growing in my other breast. I saw him a few weeks ago and after an ultrasound he insists it's nothing. Yeah right! Next thursday I already have a MRI scheduled in a private practice in germany. Hope he agrees to have the MRI done otherwise I end up paying for it myself just like the first time.
I'm very fortunate that I can afford to pay for MRI's and second/third whatever opinions. But I think it's a disgrace to western society that proper health care is only available for those who can afford it and who are able to educate themselves.
So for now, I'm brushing the hair on my teeth. !(not any hair left on my head, so I have plenty of time!)
hugs,
Caroline ------------- lumpectomy 9/2/08 6mm TN tumor 38 rads, 13 boost 6xTAC finished 04/10. BRCA1+ bill. mastectomy, imm. reconstruction using tissue exp 01/10 |
Posted By: caro36
Date Posted: Feb 08 2009 at 10:17am
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Sara,
Since my posting went a bit off-topic I do want to let you know that whatever you decide, to have a second opinion or not, to decide for chemo or not, I'm here to support you. (as I know we all are)
hugs,
Caroline ------------- lumpectomy 9/2/08 6mm TN tumor 38 rads, 13 boost 6xTAC finished 04/10. BRCA1+ bill. mastectomy, imm. reconstruction using tissue exp 01/10 |
Posted By: cg---
Date Posted: Feb 08 2009 at 10:23am
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Dear Caroline,
We were just talking about how nothing is changed since I was diagnosed two years ago...a woman has to plead her case, pay for her own scans and PROVE to the doctors she has breast cancer before she gets treatment. For the record, it is no different in Canada....I paid for left and right breast MRI in the United States because they would not do one here!
And Caroline the reply the next time someone says "You'll be fine"...just turn and tell them "I'll tell my doctor you said so!"
Just imagine if they would buy pay for the tests we need and the chemotherapy drugs instead of all the pink propaganda marketing agencies....a lot more women would be saved.
I am hoping and praying it is nothing in the other breast....with 100% certainty.
Love,
Connie
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Posted By: billie
Date Posted: Feb 08 2009 at 1:07pm
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Hi Caroline,
I would like to apologise for jumping in on your recent posting and kinda changing the subject.As Connie explained,we were discussing the fact that for some of these arrogant dr.s that nothing seems to change.In stead of them politely saying,I am not really sure as to how to treat triple negative and I would like to send you to some one that is qualified to do so ,they themselves ,I suppose for money,start treating you and in some cases tell you that they can cure you(which we all know is crap).What they should be telling you is this,because we have not really figured out the standard treatment of triple negative. I would like to send you to an oncologist that is trained in treating patients that have been diagnosed with triple negative.
Again TIME is most important after the diagnosis of triple negative and making sure that you are getting the right treatment at that time is of the most importance.But again,please excuse me for jumping in on this posting.
You Caroline, are just as important in what you have to say as any of us.We certainly hope that everything turns out ok ,in regards to the lump in your other breast.We will be watching your future postings.
Lots and Lots of Huggggsssss Billie ------------- Billie posting for sis Betty/67/caucasion female/diagnosed 2-27-08/gradeIII/7mm/invasive ductal carcinoma/T N /clear margins/node neg/4 X's taxotere-cytoxan/36 rads/7-08 PET/CT double image/no cancer |
Posted By: trip2
Date Posted: Feb 08 2009 at 1:09pm
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Good luck to you and prayers you get your mri Caro and that the results are benign.
I will leave the debating over pink marketing to others. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: cg---
Date Posted: Feb 08 2009 at 2:28pm
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Billie,
I think I had a meeting of the minds in my reply to Caroline...we both had to plead our case to get the care we needed...we both had to pay for our MRI, we both had the occasion to have a dismissive "you'll be fine" mine came from my cousin, Caroline's came from from her best friend and we both feel the same way about the glamoritization of breast cancer by the pink marketing machine.
If I miss anything in my replies, please let me know in a private messenger and then I can post a retraction.
Connie
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Posted By: sibu
Date Posted: Feb 08 2009 at 2:38pm
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Caroline, I will be praying for you (picturing the faces of those beautiful little ones and your loving husband standing in front of the aquarium!) that the lump is nothing. Do you have the option of a bilateral mastectomy if you decide you want it and push for it? Billie and everyone else--may I also suggest that we start by making a pact to be forthright about our take on this, right here on this forum? I notice it took 3 pages and several days for anyone to come through with a direct, honest answer to this post. Certainly this has been a sensitive subject for those who had a lumpectomy or did not have chemo. I hope those people know that by advocating for mast. or chemo, we are not trying to put them down or second guess their decision. We are all just devastated by the thought of it coming back and are frustrated with oncologists who are not informed on TN and aggressive in their recommendations. ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: cg---
Date Posted: Feb 08 2009 at 3:49pm
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Donna,
I wanted to have skin sparing mastectomies 10 years ago because I had pain so bad from my fibrocystic breast disease I could not roll over in my sleep without waking up because of the pain. Because the "cysts" were "benign"....no one would do anything. I wanted bilateral mastectomies when the "cyst" in the left breast was a 3 cm tumor - my right breast is full of "cysts" just like the left and so I have the fear of it harboring another misdiagnosed "cyst". Three surgeons refused to do bilateral mastectomies because that is an overreaction.
I wanted and fought for the most effective chemotherapy at the time according to the studies.
I fought for radiation even though they did not radiate for under 4 nodes in Canada (although meta-analysis has found a benefit 5-6% survival increase with radiation following mastectomy).
I firmly believe women should have mastectomies and I further believe those studies comparing lumpectomy/mastectomy are misleading because they do not separate according to breast cancer types - triple negative and strictly hormone positive or HER-2/neu positive (which is another type of beast). I pray everyone who had lumpectomy never had a tumor hidden in the rest of her breast or the chemotherapy killed off any cells, or the radiation destroyed any remaining cells....but I see too many women have recurrences because of either residual tumor, close margins, or tumor in other parts of the breast that were not seen on scans or at surgery.
I firmly believe every woman should have chemotherapy for TNBC and radiation after her mastectomy.
I believe because our tumors are high-grade 3, high Ki-67, we should have weekly chemotherapy to make sure we interrupt all the cell cycle....dose dense is more effective than every 3 weeks (they have the studies to prove it)....now they are talking metronomic dosing being more effective - which is weekly chemotherapy.
Our tumors spread to organs through the lymphatics and blood stream and because our breast cancer is so aggressive we have to be just as aggressive and not putting on pink blinders is going to make us find a cure.....research, tailored treatment protocols to address the unique characteristics of our individual tumors.
I believe we may find out that the sentinel node biopsy protocol is the reason why a small tumor found at initial diagnosis and removed Stage 0-1, shows up again as a larger tumor than the original in the lymp nodes of the axilla. I had axillary dissection by choice not that I was looking forward to any of the potential residual impairment.
I would recommend everything and anything to stop the spread of TNBC and more....because the survival instinct is truly the strongest instinct of all.
I believe the hearts and minds of women are what defines them...not a few body parts that you can have replicated if you so desire after mastectomies........
In my humble opinion,
Connie
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Posted By: sibu
Date Posted: Feb 08 2009 at 4:12pm
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Well said (as usual), Connie! THAT is the post I would have expected right away in response to something entitled "No Chemo Surgery Only." :) ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: CarynRose
Date Posted: Feb 08 2009 at 4:32pm
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Connie -
You described my situation to a tee. BRAVA!
ALL THOSE DIAGNOSED WITH TNBC SHOULD TAKE HEED.
Please don't end up like me.
CAryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: outnumbered
Date Posted: Feb 08 2009 at 5:19pm
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All,
I was away with the family for the weekend. I tried skiing but only 6 months post mastectomy, it was a no go. My upper body is still shot. So I spent yesterday and today in a ski lodge reading your posts via my cell phone. Tears streamed down my face as I read them. Thank goodness I had a Jodi Picoult book in front of me to blame..LOL!
Caroline, I will pray for you that everything turns out ok. I know you will do whatever it takes. Thanks for your support please know that you have mine as well.
I read the thread from Guitargirl's sister and I am left with no words. I am more scared than ever. I am trying to get in to see two other doctors to get consults. I am waiting to hear if they will even see me. Even if they do see me and even if they say I am right I do need chemo, I hope its not too late. I found my lump May 26th. Thats a long time ago. The lumpectomy was June 24 and the mastectomies were August 5th.
So right now it is God's hands. I have done what I can do. Hopefully I will hear something next week about the other doctors seeing me. If I do not get to see them, I will find others. I know what my gut says and I will listen. I do not need a shrink and I really do not care if the doctors "like" me. I am not looking for a friend, I just need to save my own life and unfortunately I am dependent on them for that to happen.
Everyone who has posted on this, I thank you for your support. Although I do not personally know any of you, I feel like I really do, and you all know me. It is giving me the strength to move forward and do what I need to.
Thanks Again and Hugs to you all!!!!! ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: cg---
Date Posted: Feb 08 2009 at 5:20pm
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Caryn,
It would be a honor for any woman to be you....
"Adversity doesn't build character it reveals it"
Connie
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Posted By: CarynRose
Date Posted: Feb 08 2009 at 5:36pm
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Sara,
By hook or by crook, you will get in to see CTCA. Keep me apprised of the situation there and I'll work on my end. I'll be back there on Friday for my PET/CT scan and will have all day to bug them.... (it will take my mind off waiting for the results of the scan).
Connie -- you make me blush. But frankly, I still wouldn't want anyone to go through what I have.
Love,
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: Nancy
Date Posted: Feb 08 2009 at 5:50pm
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Sara,
You go armed with every post you can find on this site as to why you have questions. If you need any help retrieving information just let me know. It is the doctors who need to be educated....not the public....they need to see why they have to tell the women dx with TNBc that this is not your grandmother's bc....this is what is happening to women when they do not listen to them...and do not treat this aggressively.
Since Connie already posted that eloquent and from the heart post, I cannot add anything to it....except....she is 100% right. If we do nothing else ever on this site....please...let it be that we say....do everything in your power to live to be 100 and listen to Caryn also...she speaks from the heart.
Sara, if you have a problem with doctors not wanting to listen to you, please know that you can call the TNBC Foundation, and they will find you a doctor who will listen. The women of the foundation will go to the ends of the earth if they have to, to get you help. That is a promise!!
Sara...we are all here for you, and I know you through my daughter Lori's eyes......
Love and many hugs,
Nancy
------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: trip2
Date Posted: Feb 09 2009 at 6:20pm
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Sara,
We all give each other strength. You too also add to that strength in this forum thru your posts, being you and your show of persistance really matters. You go!
Let us know what you hear next week. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: outnumbered
Date Posted: Feb 10 2009 at 3:59am
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The Good news - I AM GOING TO BOSTON The Bad news - I can't get in until mid-March.
Thats actually not that big of a deal at this point since I am already 6 months post-op.
I also spent some time last night with my husband reading studies and he now sees where I am coming from. Its been hard for him. He has been so supportive and there for me every step of the way, but he views certain (not all, only those well published and actively involved in research) oncologists as "rock stars". He had a hard time with me questioning the opinion of one of these rock stars. However, if I have an opinion from someone even more superior in the hierarchy of "rock starism" that is ok. He is the son of a doctor (not oncology or anything related) so this is where some of this comes from.
I am still waiting to hear from CTCA and I will follow up with them later today.
I feel very hopeful since the wheels are in motion. Its easier to accept the waiting game when I am actually doing something pro-active rather than sitting and waiting for everything to happen TO me.
I can't go back in time, but at least I have some idea where to move ahead.
By the way, you guys are the rock stars in my book!!!!
 Hugs to all!!! ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: ChrissieD
Date Posted: Feb 10 2009 at 11:14am
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Hi Sara -
I am so happy to read you are going for another opinion!! I live near Boston and received my 2nd opinion at Dana Farber in Boston. Where are you going? You are closer to getting your questions answered so you can move forward. Mid-march will be here before you know it.
God Bless You.
Chrissie ------------- 39 from MA, Mom(8.5 and 6), Lumpectomy IDC 1.5cm Stage I, Grade 3 ACx4 Taxolx4 dose dense started 11/17; Bi-lateral Mastectomy with expanders scheduled for 3/24/09 God is carrying me through ! |
Posted By: Nancy
Date Posted: Feb 10 2009 at 11:26am
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Sara,
This is great news...and as Chrissie said, mid March is very close. Moving forward is the answer, as we can never look back. I have heard that Dana Farber is great, and read all the updates from them.
If you cannot get in to CTCA, CarynRose has a direct inside line to them
Perhaps you have already spoken to her.
Many hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: outnumbered
Date Posted: Feb 10 2009 at 11:40am
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Dana Faber it is...
CTCA does not feel that my cancer is "active" so I guess I am Christina Applegate...and need to have a bonafide recurrance since I am 6 months post op. Whatever. I will go to Boston and see what happens there... ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: CarynRose
Date Posted: Feb 10 2009 at 3:28pm
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Grrrrr..... Sara, just let me know if you want to me to do something with CTCA.
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: trip2
Date Posted: Feb 11 2009 at 3:47am
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Sara I am so happy for you.
It will come quickly and you have such a good point. It is very true, we feel better when we are pro active as opposed to waiting on things to come to us.
And in the situation we are in the harder we work the better. It definitely is to our advatange since we are our best advocate for our life! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: hummingbird
Date Posted: Feb 11 2009 at 10:59am
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This is only my second post--I've been a bit of a lurker.
I was diagnosed with TNBC on 10/06. I didn't do the research I should have, and had a lumpectomy, sentinal node biopsy, and radiation. My cancer returned this November exactly where it was before-- right along the scar line. Oh how I wish I had done chemo before. Basically, the oncologist said I could do chemo if I wanted to (my cancer was less than a centimeter, stage I grade 3 no nodes involved). She showed me some 5 year studies that had very good odds of being cancer free after doing radiation alone, and she said, and I quote "Those are petty good odds. If you were in Vegas would you bet on those odds? Maybe you should just roll the dice." And roll the dice I did. I guess I shouldn't go to Vegas. No one explained what being triple negative really meant. Had I known then what I know now, things might be very different. Finding this website has taught me so much, much more than any Dr. could tell me. I had a mastectomy on January 5th with a one step implant procedure at the same time. It's taken me a little longer to recover due to some unexpected problems in recovery. I also had a lymphnode dissection this time as well. Cancer was 1.6 centimeters no node involvement. I had my port placed yesterday and am starting dose dense x4 ACT next Tuesday. I also had my "chemo teach" with the nurse yesterday. I went in so confident with all of the knowledge I've gleaned from this wonderful website, ( and the help Nancy, she's such a nice person). Anyways, the nurse said I couldn't have a prescription for things like magic mouth wash until I "earn them" Basically, I have to suffer the pain of the moth sores before they'll give me the prescription. I left the appointment feeling unempowered and out of control. Is there any other way to get the magic mouthwash? I already get terrible mouth sores when my immune system is down, so I 'm almost positive I will get them with chemo. If anyone knows of another way to get it, I would really appreciate it. Thanks for letting me ramble. Karen |
Posted By: Nancy
Date Posted: Feb 11 2009 at 11:32am
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Karen,
Now....the nurse who told you that you have to "earn" your mouthwash must be a very sadistic individual. You will tell her that you demand the script for the magic mouthwash, and you want it before you start chemo next week. What a horrible thing to say to a person starting chemo.
GRRRRR!!! Who the he** does she think she is??Also, you demand that you get the script for Emend....that is the "golden" med for nausea. You tell your onc that you want these scripts. Not the nurse. This woman needs to get a job trimming bushes.!!! No, actually she does not need to work anywhere!!
Also, if I were you, I would report her to the oncology department, or the hospital where she works. We're not talking about earning badges for girl scouts, we're talking about the fact that you cannot eat or drink once the mouth sores appear.
Karen, if many of the women would have had the info that is now readily available here on this site....things would have been different for them also. Now you have it and you go armed, and do not back down!!
You are in control, and never think any differently....never. You tell this nurse for me that this is your body....your life....and you are not going to suffer even one second more than you have to. Or...perhaps she would like to take a treatment or two for you...and she can "earn" the mouthwash also.
Do you have the same onc that told you that you didn't need chemo in 2006? I hope not. Comparing the odds or betting on the odds when it involves cancer is inconceivable.
I don't know where you had this "chemo teach" but they did not teach you anything, except to be submissive....and sweetie, with the women on this site behind you you will not be submissive. Your body....your life Karen...take full control.
 Many hugs, and let us know how you make out.
Nancy
PS....
Oh and tell "Nurse Nasty" as Connie has well named her that you also will be telling the onc that you want the script for Neulasta.....that is one "golden" shot that you get 24 hours after chemo. If you get the Neupogen....which the stupid insurance companies will approve because it is cheaper....then you have to take many shots for many days...I can't remember how many. Neulasta is for your white blood counts. ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: outnumbered
Date Posted: Feb 11 2009 at 11:35am
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Hi Karen,
I am assuming the mouthwash you refer to is Caphosol. The website is careom dot com. (I am not sure if it is apropriate to post an actual link)
This mouthwash is approved for exhisting mouth sores, however off label it has been shown to prevent the sores as well. Doctors do prescribe it this way all the time. Go directly to your doctor, skip the nurse. PUSH!
Although I have not had chemo, I do know there is absolutely no reason why you have to suffer side effects if they can possibly be prevented. A close firend of mine (diagnosed within a week of me) took all kinds of preventative meds so she would not be sick to her stomach. When on Taxol, I think you get beanadryl to prevent allergic reaction, etc, etc.
Best wishes to you.
xo
------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: cg---
Date Posted: Feb 11 2009 at 12:45pm
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When they speak of Mary's Magic Mouthwash in the States - it could be made up of a combination of things.
Mylanta or Maalx - reduces acid.
Liquid Benadryl - (takes out any inflammation, allergic response)
Lidocaine - (freezing agent)- some places have it over-the-counter - others have prescription.
Liquid Tetracycline or Erythromycin - to prevent bacterial infection of sores in the mouth
Nystatin - to prevent thrush (white tongue and spots in mouth, tongue, thraoat)
sometimes glucocosteroid - reduces inflammation and swelling.
USE BIOTENE products of toothpaste, mouthwash, gum, toothbrushes, etc - the BEST for chemotherapy mouth -
I, also, was exposed to Nurse Nasty.... and Nancy gave you good advice...when a door slams in your face - find a window!
One of us becomes intimidated when we are going to ask for something at the oncology clinic and are refused, dismissed, ignored....but when you are in any situation again you are not alone....we are there right beside you in spirt giving you support, encouragement and strength to get what you NEED for a positive outcome.
Love,
Connie
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Posted By: Tracy
Date Posted: Feb 11 2009 at 2:07pm
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This nurse is not tuned-in. I did not get these prescriptions in advance but all I had to do was ask for them and they were filled asap. If you know you are prone to those sores, you have a legit. reason to get some of them in advance. I ended-up with severe mucositus - not mouth sores (well maybe one at the end of chemo); my throat problems presented like a sore throat, no sores so it was hard to know if it was sore throat or the more serious thing. I started on 2/14 last year and that cold/flu was going around. I caught it one day before I started chemo. All of these will help with the mouth and/or throat issues:
Lidocain (likely the first grade) Gelclair (the second line and more effective) Triamcinolone Acetonide - Dental Paste (the best for any mouth sore and probably very easy to get) Not all insurance will cover the second one - I gave almost all extras back to my oncologist so others could benefit as I know some insurance companies won't cover them. Keep your throat and mouth moist - using non-sugar candy so you don't get cavities - and drink water. I like the non-suger Werther's - different flavors now. Very soothing. I brushed at least 3 times a day and I gargled with walm salt water and baking soda, off and on during the day and sometimes at night. All of that helped keep bacteria from forming. I used a little flash light to always look in my mouth and in my throat to check for those sores - looking in the mirror while I did so - great way to stay on top of it. I was also "allowed" to take Metagnics brand Ultra Flora IB; it is a high grade probiotic and that helps with the stomach and with any mouth sores. Kick some chemo bootie! ------------- Tracy San Diego DX 12/20/07, Stage 2, TNBC, Grade 3/2.5 cm Chemo start 2/14/08; rads ended 9/08; A/C - Taxol; Neg. Sentinol Node; lumpectomy; past 5 years! |
Posted By: Nancy
Date Posted: Feb 11 2009 at 2:16pm
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Tracy,
Lori also gave any meds she had left over to her onc, for anyone who could not afford them. Lori had everyone of her scripts filled before every chemo. She didn't even have to ask for them, he wrote the scripts and told her what they were for, her appt. before staring chemo. She already knew, as she is a nurse.
Karen needs to "kick the nurses booty"...give me the number of that "chemo teach" nurse...I'll kick some booty. I just don't have any tolerence any more for nasty people.
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: sportress
Date Posted: Feb 11 2009 at 3:38pm
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Hello
i had a lumpectomy and radiation, i refused chemo in any form. It will be 6 yrs this coming august so for over 5.5 yrs i have been just fine. I still thank the stars everyday that i did refuse. But that is me. My surgeon told me no chemo, my GP said no chemo, Mayo Clinic, Univ of Washington and Univ of Virginia said no chemo..oncologist said chemo and LOTS OF IT. the oncologists opinion was lost out to the majority of others.
not only did i have triple neg i have ACCB adenoid cystic carcinoma of the breast--salivary cancer in my breast. I am one of 200 documented cases. I was lucky that my surgeon had seen it before, and that i have the Univ of Washington here in seattle who has seen it before.
I think you have to make your own decision in this, if you want to have chemo i am sure you will find a doctor who will be more than willing to do it. You cannot listen to anyone, family, parents, friends, people placing a guilt trip on you, doctors, etc...you cannot listen to anyone but yourself.
Cece
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Posted By: Nancy
Date Posted: Feb 11 2009 at 3:50pm
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Cece,
Where have you been? It's been a long time...am I right? Do you sneak in when we are all sleeping and lurk?
 Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: hummingbird
Date Posted: Feb 11 2009 at 5:15pm
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Thanks to all that have responded and been soo supportive and full of great information! Nancy, YOU ROCK!!!
I was feeling pretty low today, but after reading the posts I feel like I can do this nasty chemo and I DESERVE anything that can help to alleviate any unnecessary pain or discomfort. Thank you fellow warriors and I will let you know how everything goes. Karen |
Posted By: cg---
Date Posted: Feb 11 2009 at 6:07pm
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Dear Sportress... Please do not compare apples and oranges...your cancer may be rare but it also RARELY metastasizes anywhere else and not often found in a lymph node. Removal and radiation makes for an excellent recovery and survival with your type of cancer and you are proof of that...but other women have far different breast cancers with more aggressive characteristics that require chemotherapy....they don't willingly want to poison themselves...the will to live is so great that they do! If it was hormone positive - they would have just put you on a antiestrogen.
Unfortunately, Cece, the average person does not have an extensive data base of breast cancer-related material so an intelligent person would go on a fact-finding mission and gather all the facts from all sources and make the decision that best suits their needs. Connie
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Posted By: ChrissieD
Date Posted: Feb 12 2009 at 4:19am
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Hi Karen -
I am sorry for what you are going through and your chemo teach nurse was not nicer (That is JUST WRONG!!). I just wanted to let you know that often the anxiety leading up to chemo is far worse than what you will muster to make it through once it starts. At least it was for me. I was nasty the week before my treatments started - yelling at everybody, crying for no reason, etc. I am happy to say I had my 7th of 8 treatments this past Monday and wrap up on 2/23. It was tough but I am making it through. I did not get mouth sores (got hemroids instead - and there is no mouthwash for that!).
I would like to think the nurse thought she was being funny. I am hoping it was wishful thinking and you won't need the mouthwash because you won't get the mouth sores! Don't think twice about mentioning it to your oncologist too. The nurses where I am are GREAT but sometimes they do need to check with the oncologists. I have NEVER asked for something and been told no or to wait.
Best of luck to you! Hugs -
Chrissie ------------- 39 from MA, Mom(8.5 and 6), Lumpectomy IDC 1.5cm Stage I, Grade 3 ACx4 Taxolx4 dose dense started 11/17; Bi-lateral Mastectomy with expanders scheduled for 3/24/09 God is carrying me through ! |
Posted By: CarynRose
Date Posted: Feb 12 2009 at 4:57am
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I'm shocked that they let this chemo nurse continue to be that. In my 6 year cancer journey, without exception, my infusion nurses have been angels. Maybe she's been doing it too long.
Something that I tried during my first round of chemo was fudgsicles. It closed off the blood vessels in the mouth and I got no mouth sores. The BIOTENE suggestion is good too.
I wonder if that nurse has ever had chemo?
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: Jackie
Date Posted: Feb 12 2009 at 11:11am
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I had a small triple negative. HOWEVER, my oncologist said my particular tumor had a "nasty biology" and she recommended chemo. She said there was no way to know if some cancer cells had gotten into my bloodstream and were starting in my liver or lungs or brain or bones. She said it took @ a million cells together before they could see the tumor. I had 4 rounds of Taxatere and Cytoxin and am glad that I did.
Jackie
Grade III on three different measures of growth (mitachondria, nuecleus and one other that I can't remember)
plus a 9 on a scale of 1-9 rating invasiveness
Dx 9-07
CT 11-07 through 1-08
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Posted By: Jackie
Date Posted: Feb 12 2009 at 11:12am
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I had a small triple negative. HOWEVER, my oncologist said my particular tumor had a "nasty biology" and she recommended chemo. She said there was no way to know if some cancer cells had gotten into my bloodstream and were starting in my liver or lungs or brain or bones. She said it took @ a million cells together before they could see the tumor. I had 4 rounds of Taxatere and Cytoxin and am glad that I did.
Jackie
Grade III on three different measures of growth (mitachondria, nuecleus and one other that I can't remember)
plus a 9 on a scale of 1-9 rating invasiveness
Dx 9-07
CT 11-07 through 1-08
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Posted By: outnumbered
Date Posted: Feb 12 2009 at 11:13am
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Jackie, Just curious, how small was it?
Thanks! ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: thinkpositive
Date Posted: Feb 12 2009 at 2:39pm
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Karen - what city are you in or close to? There is an excellent one day program called Chemoflage - http://www.chemoflage.com - www.chemoflage.com The director is one of us and covers everything from stress management to diet to side effect management. ------------- dx 3/06 stg II 0/7 lymph bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08 Brca neg Avastin Xeloda 10/08 Curagen 2/09 Ixempra 6/09 Lung Mets Gemzar/ Carboplatin 9/09 |
Posted By: hummingbird
Date Posted: Feb 12 2009 at 3:49pm
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I live in the Seattle area. I would love to attend a one day program to help with the chemo facts. I definitely feel extremely anxious about the first chemo and every bit of advice will help immensely.
I have a quick question about the port o cath. Is the pressure on my esophagus normal? I feel like someone is pressing on my chest when I sit just so, and when I swallow. I had it put in yesterday, and it is still very sore and this heartburn pressure thing is driving me crazy. Does it ever go away? Any input would be appreciated Thanks Karen |
Posted By: thinkpositive
Date Posted: Feb 12 2009 at 4:01pm
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Missy,
Sorry Chemoflage is just in Ga. and DC. I'll be glad to contact her and see if she knows of something similar in Seattle but check her website and reach out to Cookie on the contact page. She's great.
Re: the port. My first port was more bothersome than my second one. If it is pressing on your esophogus it must be higher than mine - mine is just below my collar bone and is not a problem. Voice your concerns - don't assume you have to suffer any more discomfort than absolutely necessary. You have to be your own best advocate. The last thing you need right now is to experience any more pain. Take good care of yourself and insist on answers to your concerns. Let us know how we can help......you are special. ------------- dx 3/06 stg II 0/7 lymph bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08 Brca neg Avastin Xeloda 10/08 Curagen 2/09 Ixempra 6/09 Lung Mets Gemzar/ Carboplatin 9/09 |
Posted By: mommy2bigblueye
Date Posted: Feb 13 2009 at 3:51am
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Hi Karen,
it looks like a lot of people have already filled u in on how to deal with Nurse Nasty. I will tell u that all of my drs assured me when I met with the oncologist that she would proactively treat me for any potential side effects to try and stop me from even having to experience them and they would taylor them as needed after they saw how I did first round and my oncologist concurred. there is no point in this process to suffer for the sake of simply suffering. not sure if u posted but when r u actually starting chemo? mine starts in a few weeks...we can be chemo buddies... Melissa ------------- Dx 12/9/08, IDC, bilateral mastectomy and lat flap reconstruction 2/9, Stage IIa Grade 3, 2.4cm, No nodes Finished Chemo 7/23- 4xAC , 12xTaxol plus Avastin; BRCA1+, OOPH 11/09 |
Posted By: ChrissieD
Date Posted: Feb 13 2009 at 5:05am
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Hi Karen - Call the surgeon about the port just to be sure there are no issues with placement. I had a lot of discomfort with my port and the area around it for weeks. We think it was from being strapped down when they put it in. I am nearly done with 16 weeks of chemo (8 cycles every other week) and I am still bothered by my port sometimes. It bothers me when I sleep sometimes too. My onc told me it is because it is so close to the skin and there are a lot of nerve endings in your skin. I will say I am looking very forward to having it taken out!!
All the best to you -
Chrissie ------------- 39 from MA, Mom(8.5 and 6), Lumpectomy IDC 1.5cm Stage I, Grade 3 ACx4 Taxolx4 dose dense started 11/17; Bi-lateral Mastectomy with expanders scheduled for 3/24/09 God is carrying me through ! |
Posted By: Nancy
Date Posted: Feb 13 2009 at 9:32am
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Karen,
I just had a call the other day from Tai, a gal on the site. She was having her port removed as not only did they place it too deep, it was sideways. From the first chemo we all knew there was something very wrong, as she was in so much pain. Just last week when the onc was trying to flush it, he had a very difficult time doing so, and called the surgeon.
Perhpas I can get Connie to post who should be putting your port in. It is not a surgeon. It is a person trained exclusively for that procedure.
As our chemo tips state, you should be in an upright postion when they are marking for the port placement, and that way it will assure it is placed where it is supposed to be.
Nancy
------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: cg---
Date Posted: Feb 13 2009 at 11:44am
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Dear Sisters,
You would like your port put in by an INTERVENTIONAL RADIOLOGIST.....
What is an Interventional Radiologist?Interventional Radiology is a medical specialty that uses image-guided, minimally invasive diagnostic and treatment techniques that are often an alternative to surgery. Interventional radiologists are highly trained in imaging, radiation safety, the performance of medical procedures, and patient management. Interventional radiologists treat diseases using small catheters or other devices and tools guided by radiologic imaging. Procedures performed by interventional radiologists are generally less costly and are less traumatic to the patient, involving smaller incisions, less pain, and shorter hospital stays. Your interventional radiologist will work closely with your primary care or other physician to be sure you receive the best possible care. These are the best people for the job of installing ports.....or PICC lines. I had a wonderful female interventional radiologist who put in my PICC line...I never felt it going in...I never knew it was there the whole time I used it for chemotherapy.
Many times they will suggest a nurse (apparently trained to do it for chemotherapy patients) put them in DON'T let them....Surgeons also do usually a bad job putting in the ports at the time of surgery.
I had a consultation with the interventional radiologist...we discussed what would be best...usually ports are recommended for chemotherapy up to a year or more...PICC lines do well for 4-6 months of chemotherapy.
Get the right person for the job to ensure getting the best care ....
I bet you will find the vast majority of the problems with ports were installed by the surgeon not an interventional radiologist.
Connie |
Posted By: hummingbird
Date Posted: Feb 13 2009 at 7:52pm
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Hi Melissa,
I am starting chemo on February 24th. I am doing ACT dose dense every 2 weeks x4. After that I will have taxol every week for 12 weeks. You wrote on your post that you were having a bilat mastectomy on the 9th of this month. How did that go? I hope you are healing well. I had a mastectomy on the 5th of January, but just the right breast. I had something called the "one step" procedure where they put in an implant at the same time as the mastectomy. It doesn't look perfect but it will do. I would love to be your chemo buddy--this is going to be a difficult time and it would be nice to have someone to commiserate with. What is the date for the start of your chemo? Hope to chat with you soon, Karen |
Posted By: Paula F
Date Posted: Feb 14 2009 at 12:46pm
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Jackie, You said you had a small bit of TN. Can yu tell me how big it was? Did you have DCIS and they found that a portion was invasive? I go to the oncologist on the 18th. My surgeon told me she thought chemo would be overkill (invasive was 1.2mm) and was not going to set me up with an oncologist, but after reading about TN I requested to see one. Thanks, Paula |
Posted By: lisae
Date Posted: Feb 14 2009 at 2:57pm
| I am in your shoes also. No chemo and stage 1. I have researched it thoroughly and it is the right decision. Chemo increases survival by 5% only in a stage 1 TNBC. I have found it in multiple articles including verbatum from my oncologist. It is not worth the side effects for 5%, atleast not for me. Good Luck, LisaE |
Posted By: sibu
Date Posted: Feb 14 2009 at 3:09pm
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LisaE, If you can put a finger on those articles, it would probably be most helpful to many others if you would post them here and/or the resources section! ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: outnumbered
Date Posted: Feb 14 2009 at 4:33pm
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LisaE,
I would like to see those articles as well. I have been looking for studies that include us stage 1'ers. Were they specific to our sub-type or BC in general? ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: CarynRose
Date Posted: Feb 15 2009 at 4:06am
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Sara,
I informally asked my oncologist about your question and he told me that he feels that one should be as aggressive with even early stage TNBC. Therefore, he suggests chemo - we didn't discuss which kind.
Hope this helps.
Hugs,
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: outnumbered
Date Posted: Feb 15 2009 at 5:36am
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Thanks Caryn, How was your PET? ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: lisae
Date Posted: Feb 15 2009 at 5:47am
| My favorite article is called "Finding your Compass" by Katy Human in The Cure Fall 2008 issue. I found this one sitting in my medical oncologist's office. I understand we need to be very aggressive, however if the can not prove chemo can give us more than a 5% increase, I am not interested. My oncologist is from Cooper in New Jersey and specializes in just breast cancer, and that 5% was told to me by her and her associate. This article helped confirm it for me. Good Luck. I think it is a personal decision just like everything else we are being faced with. Lumpectomy vs. masectomy, saline vs. silicone etc. I know it is all very overwhelming!!!! I am doing alternative treatment vs chemo to help increase my survival. I get IV vitamin C treatment. I am on an alkaline diet, and I am still contemplating mistletoe/iscador and looking into graviola. Good Luck to everyone. I pray for everyone on this website. LisaE |
Posted By: CarynRose
Date Posted: Feb 15 2009 at 5:50am
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Essentially STABLE. No new hot spots seen, but some of the ones seen appear to be 'hotter.' So, as a preventative, they are putting me on Xeloda by mouth for 18 weeks. We'll see where we are from there.
In the meantime, I'm also looking into some CAM practices (habanero peppers/ginger and garlic every morning for breakfast -- OH I HATE SPICY!!), among other supplements.
Overall, I'm relieved that things are stable enough where I can recover from the radiation treatment.
Hugs,
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: krisa
Date Posted: Feb 15 2009 at 5:53am
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LIsa, Is it 5% over your life time? The percentages are confusing to me and I know there is a way to interpret them.. From what I have read this last year, any breast cancer, positive or negative, that is a grade three, should be treated aggressively. Unfortunately, there are never any guarantees about any treatment. |
Posted By: outnumbered
Date Posted: Feb 15 2009 at 6:02am
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Hi Lisa,
I do appreciate your information, and it has been the same information that I have received up until now. I read the article, and unfortunately, this article is not specific to TN, so I am not convinced that no chemo is the right choice for me. Especially since there is something suspicious on my lung now. It could be nothing, but I feel I need to be proactive.
Best wishes to you.
I also wanted to add that Cure is a consumer magazine, not a peer reviewed medical journal ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: lisae
Date Posted: Feb 15 2009 at 6:06am
| According to my oncologist and the article in the Cure it is over a lifetime. LisaE |
Posted By: trip2
Date Posted: Feb 15 2009 at 6:09am
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Lisae,
Can you give me the specific Cure mag? I do get them or can pull it from online.
I am not sure what your initial post said but that 5% sounds suspiciously like the figure my surgeon threw at me twice, 95% curable. That is for all breast cancer. Just a thought.
I might add I hope this has changed and hope they or whomever are giving out these figures to patients are being specific that it applies to them and their individual pathology and not a general number. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: outnumbered
Date Posted: Feb 15 2009 at 6:13am
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Pam, if you google the article by name, it comes right up... ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: CarynRose
Date Posted: Feb 15 2009 at 6:16am
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It is so frustrating that the figures we see do not talk specifically to TNBC and it seems easier to throw out 95% cure numbers. (My first onc said 85% to me.) Yeah, IF I'd had a double mastectomy and IF I'd had full on chemo and IF I'd had a full lymph dissection instead of an SNB, and IF I'd had full on radiation, then there would have been a good chance of no recurrence. If a bullfrog had wings, he wouldn't bump his behind..... Now, this was in 2003.
They should have come up with more by now, but lots of the studies you see are research from 5 years ago, only being published now. We're on the leading edge here and our docs haven't caught up yet.
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: hamburger
Date Posted: Feb 15 2009 at 6:31am
| I've just told I have TNBC and am thinking about not having surgery. I also would like to hear from others who went this route. |
Posted By: krisa
Date Posted: Feb 15 2009 at 6:33am
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no surgery? |
Posted By: outnumbered
Date Posted: Feb 15 2009 at 6:36am
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Hi hamburger,
Surgery is the first line of defense against this agressive form of breast cancer. I can't tell you which to choose lumpectomy or mastectomy, but I had the mastectomy and I have no regrets. But you have to have some surgery to get it out. ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: hamburger
Date Posted: Feb 15 2009 at 6:40am
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I had a lumpectomy in Dec. My mother has been battling ovarian cancer for 4 years with chemo every month. I've seen the side effects. Her health is getting worse and I'm an only child.
I've gotten 2 opinions both say chemo, radiation.
PET/CT show no spreading. lymphs OK. bone scan and blood work OK.
I'm looking for someone who only had the surgery. How long ago and what is happening now.
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Posted By: outnumbered
Date Posted: Feb 15 2009 at 6:45am
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Hamburger, You must have had a typo, you said no surgery, not chemo. You said your Mom has OC. Have you tested for BRCA yet?
Please know that everyone handles chemo differently and if both docs say you need it, you probably should. This is your life here...
Best wishes
------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: trip2
Date Posted: Feb 15 2009 at 8:45am
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Hamburger, I am very sorry to hear of your mother's hard time with chemotherapy. It can be horrible for some to tolerate. Although they are coming up with meds for us to use with our treatment to help us ward off some of those side effects.
My mother had ovca, many years ago. I do not know what chemotherapy she had and am not familiar with what they give those like your mother for treatment.
But I would like to say your Onc might have an entirely different chemo plan for you so what you see or hear isn't always what happens to you.
This disease is very aggressive and it is usually advised to hit with all you can right off the bat. If you decide against chemo that is your choice. There have been some women post on this forum who have chosen not to have chemotherapy, I hope they will contact you.
I wish you luck and also would like to ditto getting the brca 1/2 testing done. Please talk with a genetic counselor.
Best wishes, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: ChrissieD
Date Posted: Feb 15 2009 at 11:21am
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I am not sure where the 5% number is coming from but it may not be specific to TNBC. Most of the BC statistics that were thrown at me when I was first diagnosed were generalized to all breast cancers. From what I have read and what my onc told me TNBC responds better to chemo than hormone breast cancers. I was diagnosed stage I and had a small tumor (1.5 cm) with no node involvement and am almost done with 8 cycles dose dense every other week AC then T. It was not presented to me as a choice but rather that is the standard for TNBC. Was / Is it scary? Yes, but I think the alternative is more so.
Best of luck to you with your decisions. They are never easy in this battle. ------------- 39 from MA, Mom(8.5 and 6), Lumpectomy IDC 1.5cm Stage I, Grade 3 ACx4 Taxolx4 dose dense started 11/17; Bi-lateral Mastectomy with expanders scheduled for 3/24/09 God is carrying me through ! |
Posted By: kirby
Date Posted: Feb 15 2009 at 3:51pm
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I think there are more factors than just tumor size in consideration as well. I went thru tx in 2001, when it wasn't even known what TN was.In addition to my tumor size, considered stage 1, my age and grade were all part of the equation. My onc and surgeon said bottom line it was up to me but they both recommended chemo. Note; chemo regime has changed tremendously with TN knowledge.
Hamburger, so sorry about your mothers oc. My mother too had oc for 3.5 years and passed away 2 weeks before my dx. I tested negative for BRCA. I chalk it up to luck of the draw ! I was age 45, she was just shy of her 65th b'day. Some of us tolerate chemo much easier than others. My mother went thru it 3.5 X and didn't make it look that difficult. It is unfortunate that it is sometimes looked upon that if you are not one to drag along, that "your chemo wasn't that bad !" ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: hamburger
Date Posted: Feb 16 2009 at 9:01am
| Where can I get more stats about the cancer? Everything I have found has info for breast cancer in general. I'm seeing a rad oncologist on Thurs. |
Posted By: gerriesue
Date Posted: Feb 16 2009 at 10:36am
Hi, I was diagnosed in Oct. 2008 with TNB, my tumor was only 1.7 cm.no nodes, I had a lumpectomy and am getting chemo. 4 rounds of A/C and four rounds of Abraxane ( a taxol type drug- I had an allergic reaction to Taxotere). Followed by radiation, 30 rounds. I was wondering if your doctors recommendation was based on the fact that you had a double masectomy? I tend to agree that I don't know if I would be comfortable not doing chemotherapy. From everything I have read it lowers the risk of recurrence by almost half. So why wouldn't you do it? Sounds like you might need another opinion. Supporting you in your quest for finding some answers and a doctor who listens to and addresses your concerns. Love,
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Posted By: Nancy
Date Posted: Feb 16 2009 at 10:49am
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hamburger,
I had 3 links and when I posted them, it said page expired. Will try later to post them again. Our TNBC News, Resources & Tips forum has many articles that Pam has posted and she finds the ones realted to TNBC in particular. It may take you a while to go through them, but well worth your while. What exact "statistics" are you looking for? For rads?
Nancy
http://www.medscape.com/viewarticle/569483 - http://www.medscape.com/viewarticle/569483
http://www.cancerhelp.org.uk/help/default.asp?page=26093 - http://www.cancerhelp.org.uk/help/default.asp?page=26093
http://www.medscape.com/viewarticle/569483 -
http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/ - http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/
this one is from 2006...not sure how relevant to todays treatment
http://www.ufscc.ufl.edu/Patient/cancernews.aspx?section=cancernews&id=38618 - http://www.ufscc.ufl.edu/Patient/cancernews.aspx?section=cancernews&id=38618
------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: asinglerose
Date Posted: Feb 16 2009 at 10:51am
OH DONNA.....
LOL!!! ------------- Aleida dx 8/22/08, TNBC, IDC, Lumpectomy/10/6/08 right breast/ 8mm/ clear nodes/ clear margins/ Stage1/ TAXOTERE/CYTOXAN every 3 weeks X4/ 45 RADS! PRAYING FOR THE BEST!! |
sibu wrote:Posted By: outnumbered
Date Posted: Feb 16 2009 at 11:07am
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Hamburger,
If you google triple negative breast cancer research you will get a lot of hits. I do not now how deep you want to get into the science, but you will find several studies. I am still learning the forum etiquette. I dont know if it is ok to post links I have saved for specific articles and stories. Also, if you have some time, go to the home page here, then go to events, past events and then click on 2008. Listed is a teleconference entitled TNBC research and development update teleconference. I found it quite informative.
Best wishes! ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: trip2
Date Posted: Feb 16 2009 at 11:11am
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Hamburger,
Kirby is right, size doesn't always matter when it comes to this nasty aggressive disease. there have been articles recently come out suggesting even the smaller tumors may be more deadly. Women with
TNBC can progress to Metastasis with no nodes involved. It can pass thru your bloodstream also. I will give you some links to look thru, there is alot of TNBC information in our Resource section, articles, studies, news, good stuff.
http://findarticles.com/p/articles/mi_6795/is_3_4/ai_n28461387/pg_1?tag=artBody;col1 - http://findarticles.com/p/articles/mi_6795/is_3_4/ai_n28461387/pg_1?tag=artBody;col1
For learning about genetic mutations and familial cancer
http://www.facingourrisk.org - http://www.facingourrisk.org
http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/ - http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/
http://www.medicalnewstoday.com/articles/134622.php - http://www.medicalnewstoday.com/articles/134622.php
These will give you an idea of how this disease performs. So besides reading these links, plus going thru our Resource Section, you can also go to google or any good search engine type in TNBC and you will get pages and pages of information. It is aggressive therefore we must be more aggressive.
Also make copies of any articles that you find pertaining to you and take them with you and ask questions. There is a link above called Resources. If you click on that, then items will drop down, click on Take Chare of Your Care and read that list of suggestions which was compiled from the members of this forum.
Ask us anything. We will try to do our best.
Good luck to you. It is not easy we understand that but it is your life! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |