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Triple Negative Breast Cancer

emamei's picture
emamei
Posts: 146
Joined: Feb 2011

I was diagnosed last September with IDC Breast Cancer, Stage 2, Grade 3, Triple Negative.

I just had the 7th of 8 rounds of chemo last Thursday. I had my lumpectomy last October with axillary node dissection.

I will be having additional surgery approximately a month after chemo to re-excise the margins. Then radiation therapy approximately a month after surgery.

Being Triple Negative means I cannot be treated with hormone therapy. I feel terrified about life after treatment because I'm triple negative.

Is there anyone else diagnosed at Triple Negative out there? I'm sure there must be. I would like to hear your thoughts and experiences being triple negative. What have your oncologists and surgeons told you about long term prognosis post treatment?

MAJW
Posts: 2515
Joined: May 2009

I, too, am triple negative..diagnosed two years ago next month...I had IDC stage II grade 3...I had a 2.2 cm tumor...lumpectomy, no lymph node involvement...I had 4 rounds of chemo, Taxotere/Cytoxan then 33 radiation treatments...I am 17 months out of all treatment. ending treatment scared me, senseless...what was I to do then...won't kid you, it took me months to get over this fear... My oncologist told me I have a 80% chance of it NOT coming back...that means there's a 20% chance it will...I live with "what if's" like most of us do...BUT...since I had no control of getting bc in the first place, I can't control a recurrence...I pray hard it doesn't return, but there's nothing else we can do...I am trying to live my life best I can..I find joy once again in things that brought me joy before bc...Breast cancer alters our life to such a degree that anyone who hasn't had our experience can not understand...It's a personal choice how we live our lives after bc..
I understand your fear...believe me I do !!!!!!! I am hoping a fellow "sister" mimivac will chime in....she's a wealth of info on triple negative bc...
My oncologist also told me that the further out you are from treatment, the less likely a recurrence...you're still in treatment, with upcoming surgery...also my oncologist and surgeon told me that although triple negative isn't good ( there is not a god one!) it IS one that responds really well to chemo.

Wish I had words to relieve your fears...I don't, but hopefully you'll get to the point I have reached..acceptance...nothing more we can do...no hormone therapy, etc....we've done all we can do...BUT there is life and a good one after bc...there are long time survivors of triple negative . Keep posting...we understand and we care

Wishing you sunshine..
Nancy
Nancy

joannstar
Posts: 368
Joined: Nov 2010

I was diagnosed 8/5/10 with IDC Stage 1, Grade 2, 0/4 nodes, Triple Negative. I had 2 lumpectomies (8/5 & 8/19--to get clear margins). I had 4 rounds of Taxotere/Cytoxan and 2 rounds of Taxol/Cytoxan (switched because my ankles started to swell). I have only 7 of 33 radiation treatments left so I'll be finished on 3/31/11 if all goes as planned.
Just last night I told my husband that I was terrified of no longer being in treatment and he said that it will be time to let the meds do their work and for my body to heal, that I did everything I could and that it was out of my control. He also told me to stop worrying--easy for him to say!
My onc said that once I'm past 2 (or maybe it was 3) years, the statistics for a reoccurence dropped to match other types of bc. He also said that TNBC responds well to chemo and that he expected I'll die from old age, not bc (I'm 58).
I would like to have more assurance, but I don't think that anyone has a crystal ball to say how long our lives are. I have spent more time thinking about death and asking others about it. I am starting to realize how little control I have over my life--with no history of bc in my family, I certainly didn't expect this--so I can choose to just enjoy the time I have. This experience has certainly changed my outlook on life!!
I do plan to walk as a SURVIVOR on 4/1/11 in our local Relay for Life event. It will be the celebration of the end of my treatment and having NED (no evidence of disease).
At least we won't need to deal with side effects of hormone treatment. I guess we just have to be satisfied knowing that we are doing all we can.
Hugs,
JoAnn

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

In my case, the cancer is triple neg inflammatory BC, stage 3. I've completed 6 rounds TAC chemo, bilateral mastectomy with 14 lymph nodes removed, and am finishing 44 rounds of rads. Honestly, I worry more about the inflammatory part than the triple neg part. IBC likes to metastasize, and the stats aren't good.

Here's my thought, the cancer is aggressive, so I've been aggressive with my treatments and surgery. I am changing some things in my life...I'm working on how I handle stress, trying to exercise and eat better. Beyond that, there's nothing I can do. Mets or recurrence will happen, or it won't.

But do I worry when I get an ache or a pain? Yes. Hester Hill said in her book "After Breast Cancer" to use the 4 week rule. If an ache or pain persists for 4 weeks, then it's time to worry and contact your doctor. So I'm trying that. It does give me some relief, I can say to myself "It hasn't been 4 weeks, too soon to worry."

Also, I'm just finishing treatment and will be going back to work in about a month. So I'm in the earliest part of finding my 'new normal'. Like getting through treatment, I expect it will be a roller coaster ride too. Thank goodness I found this place, to keep me sane and help me work through the challenges.

Hugs,

Linda

jessiesmom1's picture
jessiesmom1
Posts: 744
Joined: Jun 2010

After extensive diagnostics I was diagnosed with TNBC in February 2010. No tumor was ever found in my breast tissue but 2/22 lymph nodes were positive - Stage IIa, Grade 3. I had an excision biopsy, complete axillary dissection and a right mastectomy. I then had 4 rounds of A/C (adriamycin/cytoxan) and 12 rounds of Taxotere. No radiation. Of course, no hormone treatment as I am triple negative. My last chemo treatment was in 8/2010.

I went to the oncologist about 10 days ago armed with a list of questions. He assured me that tnbc responds well to chemo. I specifically asked about the risk of a recurrence. He said that a person with tnbc is 6% more likely to have a recurrence than any other person with breast cancer. He does not believe in doing tumor marker tests as they are, in his opinion, unreliable - too many false negatives and false positives. I was told it was OK to color my hair (now that there is just about enough of it) and to go ahead and get the breast reconstruction done whenever I feel like it.

Personally I am grateful that I do not have to take any drugs (ie. Tamoxifen, Herceptin) on a long term basis. In my particular case radiation was not indicated either and I cannot say that distresses me either. I have done everything I can do to get rid of my cancer. While tnbc is a little out of the ordinary, I have no reason to believe that it is not completely gone. I plan to have many more birthdays including the one coming up this Saturday. I saw my daughter off to her 1st year of college this past September 5 weeks after I was done with chemo. 6 weeks later I visited on Parents Weekend and climbed the steps in the football stadium for the game. My oncologist says the trajectory is going upwards. I am grateful for every day I am here.

linpsu's picture
linpsu
Posts: 736
Joined: Mar 2010

I was first diagnosed in 2008 with DCIS, but Triple negative. I had a lumpectomy, margins weren't clear so then had a mastectomy with no radiation or chemo. (4 nodes taken out were clear.) I had a mastectomy due to the large size of the DCIS. I had reconstruction. Then 2 years later, it recurred, under the mastectomy scar, as IDC, Stage 3, Grade 3, 8 cm. I had chemo first to shrink it (dose-dense, 4 A/C, 4 Taxol). The chemo did shrink it from 8 cm. to 1/2 cm. Then I had another mastectomy (sort of) to remove the implant and lots more tissue than the first time. I did have 1 positive node out of 14 this time. Then I had 33 rounds of radiation. I completed treatment in October and am doing well. As my oncologist said at my 6-month appointment a few weeks ago when I expressed my fear about being triple negative and the fact that there was no hormone therapy for me to take, she said that everything possible was done - she treated my disease very aggressively. That doesn't really make me feel a whole lot better. I was very depressed for a few months, but that is easing up a little bit after reading some wonderful posts from ladies on these boards who stressed that we need to live well each day and appreciate today and not focus on what tomorrow might bring. Those words have been very helpful, and I've really appreciated the wisdom from some ladies out there who have much more serious situations than I do.
Hugs,
Linda

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