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caro36
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Posted: Feb 06 2009 at 1:14pm |
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
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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
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billie
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Posted: Feb 07 2009 at 7:43am |
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
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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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cg---
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Posted: Feb 07 2009 at 8:42am |
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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billie
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Posted: Feb 07 2009 at 10:04am |
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
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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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cg---
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Posted: Feb 07 2009 at 10:14am |
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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trip2
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Posted: Feb 07 2009 at 10:37am |
'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.
Edited by trip2 - Feb 07 2009 at 10:53am
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Stage 2 2003
Stage 1 2007
BRCA 1+
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CarynRose
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Posted: Feb 07 2009 at 11:07am |
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
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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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trip2
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Posted: Feb 07 2009 at 11:28am |
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.
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Stage 2 2003
Stage 1 2007
BRCA 1+
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caro36
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Posted: Feb 08 2009 at 10:06am |
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
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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
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caro36
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Posted: Feb 08 2009 at 10:17am |
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
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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
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cg---
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Posted: Feb 08 2009 at 10:23am |
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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billie
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Posted: Feb 08 2009 at 1:07pm |
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
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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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trip2
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Posted: Feb 08 2009 at 1:09pm |
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.
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Stage 2 2003
Stage 1 2007
BRCA 1+
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cg---
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Posted: Feb 08 2009 at 2:28pm |
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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sibu
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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.
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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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cg---
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Posted: Feb 08 2009 at 3:49pm |
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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sibu
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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."
:)
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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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CarynRose
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Posted: Feb 08 2009 at 4:32pm |
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
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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 08 2009 at 5:19pm |
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!!!!!
Edited by outnumbered - Feb 08 2009 at 5:20pm
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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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cg---
Senior Member
Joined: Jul 20 2007
Location: Canada
Status: Offline
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Posted: Feb 08 2009 at 5:20pm |
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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