No Chemo - Surgery only |
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outnumbered 
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Joined: Feb 02 2009 Location: New Jersey Status: Offline Points: 525 |
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 Topic: No Chemo - Surgery onlyPosted: 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?
Edited by outnumbered - Feb 04 2009 at 10:38am |
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~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 |
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outnumbered
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Posted: Feb 04 2009 at 5:07pm |
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chirp chirp (crickets)
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~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 |
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sibu
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Posted: Feb 04 2009 at 5:21pm |
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Christina Applegate? Are you there?
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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 |
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Tracy
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Joined: Jul 20 2008 Location: United States Status: Offline Points: 52 |
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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.
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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! |
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Paula F
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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? |
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Tracy
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Joined: Jul 20 2008 Location: United States Status: Offline Points: 52 |
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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.
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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! |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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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
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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 |
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kirby
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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.
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kirby
dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
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outnumbered
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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.
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~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 |
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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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
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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 |
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outnumbered
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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. Edited by outnumbered - Feb 05 2009 at 5:36am |
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~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 |
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peach
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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/, 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
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Dx 5/07 TNBC
IDC Stg.2, Gr.2, Sentinel node 0/1 BRCA- Lumpectomy,Chemo(AC-T DD)Rads |
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krisa
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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.  |
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Nancy
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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
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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 |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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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
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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 |
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trip2
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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. Edited by trip2 - Feb 05 2009 at 10:41am |
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Reggie24k
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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. |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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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
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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 |
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billie
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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
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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
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mommy2bigblueye
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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 |
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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 |
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