Cancer Survivors Network

I was diagnosed last September with Triple Negative, Invasive Ductal Carcinoma, Stage 2, Grade 3, with two out of eighteen nodes positive.

I had a lumpectomy in October last year. Then 8 rounds of chemo, 4 AC and 4 TAXOL. I had re-excision surgery to further clear the margins in April this year but the pathology came back positive for residual cancer that survived the chemo. I had a mastectomy to remove the breast on June 1st. The pathology came back to show that there was some additional residual cancer cells in the breast 3mm worth, but all my margins are now clear. I will be beginning radiation therapy in a few weeks.

With Triple Negative breast cancer the chances of recurrence is greater in other parts of our body than it is in the breast area where it originated, thus the need for aggressive treatment - chemo, surgery, radiation therapy. Where I live, the cancer doctors encourage patients to look into integrative medical services offered that look at treating the whole patient, body, mind and spirit, through supportive treatments, such as nutrition, meditation, acupuncture, exercise, yoga, meditation, etc.

You and I and the other ladies on the forum with the Triple Negative status are a rarer breed for sure.

Keep in mind the chemo your doctors are recommended are in your best interest. The chemo will treat the whole body and will better your chances for survival and lessen the chances of recurrence. I know it sucks, chemo can be hell, but I highly recommend that you do it as it is the best medical intervention that can be offered at this time.

Hope this helps...

I'm not sure triple negative is so rare anymore. There are quite a few of us on this board as you will probably discover. I wasn't thrilled about getting chemo either, but it's my understanding that we have no other option for preventing the spread of our cancer. My cancer was Grade 3 Stage 3A triple negative. I had a mastectomy in Dec '09 followed by 8 rounds of chemo (4 AC / 4 Taxol) and 33 radiation treatments. I understand your desire to seek alternative treatments but if you don't do chemo and your cancer returns, can you handle the "what if's"? Only you can decide what is best for you and I'm sure the bilateral mastectomy was a difficult decision to make. Unfortunately no matter what you do, you will probably always worry about recurrence. That is a permanent side effect of cancer. I'm glad you found this site and I'm sure you will hear from other members. I wish you luck sorting through your thoughts to reach whatever decision is best for you. We are here for you, whatever you decide to do.

HUGS!!!
Jamie

In Dec. 2009 I was diagnosed with TNBC - Stage IIa, Grade 3. 2 of 22 lymph nodes removed were positive for cancer. I had a right mastectomy followed by 4 rounds of A/C (Adriamycin/Cytoxan) and 12 rounds of Taxotere. My last infusion was in 8/2010. I had my reconstruction surgery done on June 13, 2011.

TNBC responds very well to chemotherapy from everything I have read. I would suggest that you go to the website for the TNBC Foundation for more information. Since chemo is a systemic treatment I was all for it. My theory was that the drugs would seek out and kill off any cancer cells that remained after my surgery. There is no way I would not throw everything in the arsenal at this disease in order to eradicate it. I could not live with the "what ifs" if the cancer recurred and I had not given it my best shot.

Good luck with your decision.

IRENE

Diagnosed 7/10 Stage 2b Grade 3. I had 4 A/C and 4 Taxol, bilateral mastectomy with lymph nodes removed on right side--7 of 15 were positive and then radiation. I am cancer free and will finish reconstruction with exchange surgery 9/20/11. LISTEN to what your oncologist tells you! TN does respond well to chemo and killing any stray cells may help prevent recurrance. Listen...listen...listen, but remember you do play an important part in your recovery--yes, treatments seem scary, but really aren't as bad as we (I) imagined. I believe a "I can beat this" attitude helps! I missed 2 days of work during chemo other than 'chemo days' but that was becaue I picked up a bug.
Good luck, prayers headed your way.
Cindy

I am triple negative as well. Stage 2A no node involvement. I had a lumpectomy in February. My treatment plan is 4 A/C and 4 Taxol every two weeks. I have completed the A/C and have two more Taxol. I will get 6 weeks of radiation after chemo.
I have tolerated the chemo fairly well. The A/C was rougher than the Taxol has been. With A/C I had light nausea but the anti nausea drug took care of it. I never threw up. With the taxol I do not need to take anti nausea meds and I am less tired.
I have been able to continue mostly all of my daily activities. I have two children and have not missed any of their activities. I usually have one "bad" day where I have to rest more.
It has not been as bad as I anticipated. It is not a walk in the park, but it is doable.

I was dx in Aug last year...triple neg inflammatory bc...automatically stage III. This is even more rare and more aggressive so my treatment was chemo first (six rounds TAC all together), bilateral mastectomy with 14 nodes removed (12 positive), and 44 rounds of rads (22 days 2 times per day).

Here was my thinking when I had a choice in treatment options...this cancer is nasty and aggressive. So if I want a chance to beat this thing, I have to be more nasty and more aggressive. In every case, in every choice, I chose the more aggressive route. (I even asked about more chemo post surgery since the pathology report was pretty mixed.) I never want to look back and think to myself 'I should have done more.' I am also changing my diet, exercising more, and using some stress management techniques because I want to use every tool available to live a long life and see my children grow.

Was it hard? Absolutely. But what you should know is that now that you are here, if you choose to do the chemo so you can kill every one of those damned nasty aggressive cancer cells, you automatically have a great support system. We can't be by your side, but we will give you advice, encouragement, emotional support, answer questions, and more. If you choose not to do the chemo, you get the same support.

I hope this helps in making your decision, and I wish you peace with whatever you decide.

Hugs,

Linda

AS you can see, there are a number of us TNBC sisters on this board. I had it first as DCIS, with a lumpectomy, then mastectomy b/c margins weren't clear, sentinel nodes all clear - followed by reconstruction - no chemo or radiation the first time b/c it was considered Stage 0-1. Then it recurred 2 years later at Stage 3 - first I had 4 A/C, then 4 Taxol, dose-dense (every 2 weeks), tehn had implant removed along with more tissue, 14 lymph nodes (1 was positive), followed by 32 radiation treatments. This seems to be the typical treatment for TNBC as far as I can tell. I think that if I had chemo or radiation the first time, that maybe it wouldn't have recurred. I would do everything the Dr. recommends; you don't want to fool around with TNBC because of its aggressiveness and propensity for recurrence. Just my thoughts. Take care, Linda

Hi Beachlovernh

I was diagnosed This January at age 37 with Triple Negative, Invasive Ductal Carcinoma, Grade 3.

I had a Lumpectomy on February with tumour 4.5cm (size of tennis ball), 2cm Centennial Node and 14 Lymph notes removed.

Then scheduled 8 rounds of chemo (16 weeks total) 4 AC and 4 TAXOL. I am in the middle of treatment, today had my first Taxol treatment. With A/C I had mild discomfort , never ill to my tummy. But with today Taxol I ended up with allergic reaction - rash/redness in my face and pain in my arm during infusion. They gave me more Benadryl (antihistamine), so I slept during whole infusion. But I managed.

I am also getting NEUPOGEN injection 7 days/daily after chemo to increase White Blood cells (increase your imunity). Neupogen give me on day 3/4 huge bone/joines pain BUT somebody on this side recomended to take REACTIN (or Clariti) on daily basis and this seems to help.

I have scheduled also a re-excision surgery to further clear the margins in early fall.
After that I am opting for Double mastectomy even my surgent set that it is not necessary, but I desided that I will do anything in my power to lower chances of reoccurence.

Look I did lots of research on Natural Cure, but I have not found anything convincing, so I decided to go medical (Chemo) way. My Onco told me that Triple Negative is very AGRESSIVE fast growing (my tumour was growing 1cm /0.5inch/ per MONTH).

They also told me that if I will leave it as it is chances of reoccurrence are 45% which is a lot (at least to me).

If you want I would be gladly to share pages which I would in regards of Natural cure, interesting Books and special Diets/Protocol, that you can educate your self.

Information is knowledge and you need to find as much info as you can to make educated decision. This is your life and your decision.

Take care & good luck

Helen

I too have the dreaded triple neg. I was dx Dec. 28th 2010 and started chemo 3 weeks later. Yes it is a very aggressive cancer. I was very shocked when my Drs said chemo first! I had 4 A/C and 4Taxol dense dose. It was not easy, yes it sucked but...... I also saw the tumor go from 6cm to ( get ready) NOTHING! I just had surgery on june 8th. Instead of a dbl. mas. as originaly planned, I had a section around where the tumor was and 9 lymph nodes removed. The Pathology report reads... no residual carcinoma ----significant chemotherapy effect! Not only did it reduce the size ( to nothing) I feel We can be pretty sure that it is not hiding anywhere else waiting to come back. I guess I was lucky that I got to actually see the chemo working. I am now on a 6 week rest , then on to rads just to be sure I have done everything possible to fight this. I also had the genetic testing and that was neg. It is a long road and I just took it 1 treatment at a time. My prayers are with you. P.S. Remember these ladies are here 24/7, I have found so many answers just by reading. I hope I helped even a little.
Tami

Another of the triple negative clan. Chemo is the best chance of beating tripple negative bc. I wouldn't give it a second thought as I know I have a lot more living to do. The nausea from chemo is a lot like morning sickness to me. If I have to have morning sickness as a side effect of chemo but I get to live for years to come I'll do it.

I have metaplastic (which is rare) and triple-negative cancer. I had a mastectomy and then I had 33 rounds of chemo and 33 rounds of radiation. All in all, none of it was too bad and if it works to keep the cancer at bay, it was well worth it.

Judy