Triple Negative Breast Cancer

LadyParvati said:

Me, too.
I was diagnosed with triple negative on Sept. 30 of this year, so I'm just beginning my battle. Doctors have so hoped that it would NOT be triple negative that tests have been run 3 times trying to find an error, including the Oncotype DX prelims. Ah, well. I am where I am, and I'll deal with whatever I have to deal with!

I agree, reading all the research offers a more negative perspective, but we still have to remember that it is not a certain death sentence to be diagnosed with triple negative! I like to look at the other side of the coin all the time--when I'm told the risk of recurrence is higher, I look at the probability of it NOT recurring--which is still quite a bit higher than the risk of recurrence! So the odds are on our side. As several of you noted, there are many survivors!

I am determined and a fighter, too, so I'll be doing what I can to reduce my risks. I've reduced the fat in my diet as well as the alcohol (even through the holidays!), and I've started walking more, though our big snowstorm messed that up for the past several days. I'll get back to it, though!

So we're in a special sub-club of the big club--the Triple Negative Club!--let's fight together!

Hugs & prayers, Sandy

Triple negative breast cancer
I was diagnosed with triple negative breast cancer in September of 2009. My mother died in 1990 after her breast cancer metastasized so I have a family history. I was initially told by my surgeon that I would only need radiation based on the size of my tumor, the fact that it was non-invasive and there was no lymph node involvement. I thought "oh I can handle this; no chemo!. But I met with my radiologist and she wanted me to talk to my oncologist first based on the specs of my tumor. The oncologist explained that I had TNBC and the tumor was a grade 3 which meant it had a good chance of recurrence without chemo. I was so bummed... all I could think about was the way chemo affected my mother 20 years ago. The oncologist gave me a lot of information and I did research on my own and of course decided that I needed to complete the 6 rounds of chemo after reading that TNBC only responds to chemo. I'm part of a chemical trial which is trying to determine if adding the drug AVASTIN to other chemo drugs will decrease the recurrence and increase women's life spans. I've just finished my 3rd round of chemo. I experienced tingling and extreme tenderness in my feet after my 2nd round. It's only the second day after round 3 and so far so good. I've decided that the cancer cells found in my body were meant to be a wake up call to take better care of myself! I've stopped being afraid and opened my eyes to the REAL joys of life. I want to wish all of you a Happy New Year and New Life!

rugobraun said:

I'm a newbie too
Just read your post, this is my first time on here and we are pretty much in the same boat, I'm 43, with a size 10.2 tumor, and need to start chemo asap. I think on Jan. 12th. I am really scared about all this happening so fast for me. I was just diagnosed in November. It seems like all my options are now limited. I can't have surgery until after chemo (five months worth), and maybe even after radiation too. I have a daughter, 22, and she is just a blessing too. My son is in high school. I am still being staged. Had the lymph node biopsy last week to see if it has spread. I also did 4 more breast tissue biopsys last week too and have a bone scan planned as well.

Mr. Toad's Wild Ride
I think that all of us here can honestly say that from the time you are diagnosed until you completely finish with your treatments your life is just short of being on a Mr. Toad's Wild Ride. What amazed me the most about the process is how fast everything went. I remember feeling stressed about the diagnosis itself and exhausted from all of the appointments, tests, doctor meetings, etc. that needed to take place just to begin the process. No where in the book I received did it tell me to hang on for Mr. Toad's Wild Ride. Things do settle down a bit once all the important tests and appointments are completed. Having your family and friends around you will give you the strength you need to get through all of this. There is a light at the end of the appointment tunnel. Hang in there!

Hello fellow triple neg!
Nice to meet you! I was diagnosed with triple neg. Breast cancer. There isn't a lot of info out there about it. From what I can gather if there is no recurrence within the first several (3-5) years then the chance of recurrence is very little. I have been cancer free for 2 and half years now. I haven't had the opportunity to meet anyone with triple neg. yet. I was diagnosed at 38. I have no kids and no family history of cancer. I was under an extreme amount of stress when I got it though. I was considered stage IV. Some had spread to the lymph nodes and there was somehting suspicious in my lung. I had chemo, radiation, and surgery. So far so good!!

TLynn0102 said:

Mr. Toad's Wild Ride
I think that all of us here can honestly say that from the time you are diagnosed until you completely finish with your treatments your life is just short of being on a Mr. Toad's Wild Ride. What amazed me the most about the process is how fast everything went. I remember feeling stressed about the diagnosis itself and exhausted from all of the appointments, tests, doctor meetings, etc. that needed to take place just to begin the process. No where in the book I received did it tell me to hang on for Mr. Toad's Wild Ride. Things do settle down a bit once all the important tests and appointments are completed. Having your family and friends around you will give you the strength you need to get through all of this. There is a light at the end of the appointment tunnel. Hang in there!

hanging on
I want to ask how you ladies managed your chemotherapy side effects. I have completed 3 rounds of chemo and I must admit that I am considering stopping after the 4th round; I'm scheduled to complete 6 rounds. I've had to have injections to increase my white blood count. The joint pain caused by the injections was horrible. I'm feeling like my body can't handle 6 rounds; the chemo knocks me out. I NEED ENCOURAGEMENT!!!

Triple Neg here too!
I was diagnosed in June 2009 and started chemo in July. I finished chemo on 10/30 and had a mastectomy on 11/30 with 3 nodes positive. I was Stage 3a, Grade 3 (a 5 mm. tumor). I should be starting rads the week of 1/18/10.

The best part of following this schedule is that you know whether the chemo is working or not. My tumor was 6 cm before starting the chemo. The nodes were also palpable before chemo and could no longer be felt by the 3rd treatment. Although we had hoped the tumor would shrink more than 1 cm, it didn't make a difference in the type of surgery that was required.

On my last visit with my oncologist, he said there is no reason that I shouldn't live the rest of my life cancer free! He gave me no statistics...and I'm glad. I only want to know that he is optimistic as is my surgeon. It makes me optimistic.

I still have a long road to travel, but I'm looking forward to graduating from rads and moving forward. I have a life to live!!!

Penny

lndsmom said:

Triple Neg here too!
I was diagnosed in June 2009 and started chemo in July. I finished chemo on 10/30 and had a mastectomy on 11/30 with 3 nodes positive. I was Stage 3a, Grade 3 (a 5 mm. tumor). I should be starting rads the week of 1/18/10.

The best part of following this schedule is that you know whether the chemo is working or not. My tumor was 6 cm before starting the chemo. The nodes were also palpable before chemo and could no longer be felt by the 3rd treatment. Although we had hoped the tumor would shrink more than 1 cm, it didn't make a difference in the type of surgery that was required.

On my last visit with my oncologist, he said there is no reason that I shouldn't live the rest of my life cancer free! He gave me no statistics...and I'm glad. I only want to know that he is optimistic as is my surgeon. It makes me optimistic.

I still have a long road to travel, but I'm looking forward to graduating from rads and moving forward. I have a life to live!!!

Penny

Continous feed chemo as opposed to push chemo
This is my first post. I have had a lumpectomy and radiation via mamosite. Surgery Dec 16 2009 and Radiation Jan 25-Jan29. There was confusion in my Testing so radiation was done first but now that I am Triple Negative I have been advised by one onc to have TC 4 times 21 days apart and by another to have TAC 6 times. 21 days apart. The first onc says the Adrianmycin part is too hard on the heart. The second onc says that is because the A is given in a short time and shocks the body but if given over a 4 day period is less damaging to heart and very helpful in avoiding the cancer returning.

I am confused and would appreciate any info anyone has on continuous infusion of the A (administered by wearing a pump over a 3 or 4 day period) as opposed to short term (one day)treatment.

Moopy23 said:

Hello, Heismyhope. I am
Hello, Heismyhope. I am aware of new trials suggesting that Adriamycin does not help as much as originally believed and that it may not be worth risking heart damage. But, the only treatments that are in standard use for TN are TAC as the one onc. has recommended; or, dose dense AC+T. At least, that is my knowledge.

I myself had TAC. Many of the triple negative women on youngsurvivors.org have gotten dose dense AC+T. You might visit that website for more info. Also, you might visit TNBCFoundation.org.

It is hard, isn't it, to make such an important decision when you are receiving widely different opinions?

For myself, if I had it to do over, I'd take AC+T, but TAC is proven successful against triple negative cancers as well.

My best to you. Please let us know what you decide to do. You will find much support, wisdom, and friendship here.

heismyhope
Cytoxin and Taxotere X4 given three weeks apart is a very acceptable regimen for TNBC without the cardio-toxicity of Adryamycin. It is one of the protocols used by Sloan-Kettering (who also invented the AC-T regimen).

Skeezie said:

Agree wit Heide,
I'm TNBC and had a simple mastecomy, Sentinal Node Biopsy clean, no nodes involved and no cancer cells found in breast tissue after mast. I had 4 cycles of C/T three weeks apart. My onc. did not want to use A becaue of the possible effects on the heart. But I am 67 and maybe that made the difference. But C/T is also a standard cocktail used for TNBC.

It's really hard to decide when you have two doctors giving two opinions, but no two doc's agree about almost anything. So it comes down to your choice or even see a third onc. This is your body and someone else can only suggest but we need to know all the facts to decide.

TNBC is not the end of the world. Definitely go the the triple neg website that was posted. One great thing, once our treatment is over, it's over, none of that five year stuff that can cause side effects too.

Good luck with your decision and keep us posted. Google for info, I got tons of info when I was first dx.

Hugs, Judy :-)

A
Wouldn't it be nice if there were at least one guaranteed chemo regimen that worked every time, for every woman?

Guess the word for that regimen would be: CURE.

Kimberly Ann said:

Hello fellow triple neg!
Nice to meet you! I was diagnosed with triple neg. Breast cancer. There isn't a lot of info out there about it. From what I can gather if there is no recurrence within the first several (3-5) years then the chance of recurrence is very little. I have been cancer free for 2 and half years now. I haven't had the opportunity to meet anyone with triple neg. yet. I was diagnosed at 38. I have no kids and no family history of cancer. I was under an extreme amount of stress when I got it though. I was considered stage IV. Some had spread to the lymph nodes and there was somehting suspicious in my lung. I had chemo, radiation, and surgery. So far so good!!

Hello
Hi....I just signed up today and am learning my way around the site. I saw your post and I just had to respond. I am 36 yrs old and am also triple negative. I had a 4.7 cm tumor which had spread to 3 of my lymph nodes. I did have a double mastectomy and chemo and radiation. i am 2 weeks post radiation. I am so glad to hear that you are doing well 2.5 years later. Please take care and would love to talk with ya sometime.
MAY GOD BLESS US ALL

My triple negative story.
I was diagnosed with triple negative breast cancer in Jan 2010. I was 45 years old. I immediately looked at my husband and said "I won't see Trevor, our grandson (who was 2) make 5 or my daughter get married. My only personal experience with breast cancer at the time was my mother, who was diagnosed at age 28, had a radical mastectomy followed by chemo and cobalt treatments only to find it returned in her liver a few months later. She lost her battle at the age of 30. Naturally I assumed that the same thing would happen to me. I live two hours from Houston and was determined to go to M.D. Anderson. God had different plans as they could not get me in for 6 weeks and that would be to redo my mammo, ultrasound, and biopsy and then schedule an appt with a doctor afterwards. I knew it was aggressive, however, at the time I didn't know it was so rare or just how bad. A family friend called and told me about her experience and her doctor in Baton Rouge. He is a christian man, world renown, and specialized in breast cancer only. I saw him a week after receiving my biopsy results (which at the time said it was malignent but I was still awaiting the ER/PR/HER2/and Fish results). The day I saw him I had gotten my biopsy results showing the triple negative but still waiting on the FISH test results. At that time the tumor was .90 cm at the largest area. I had surgery 17 days later and opted for a bi-lateral mastectomy. By the time the surgery was done the tumor was 2.5 at the largest area, giving me stage 2A breast cancer. There were no nodes involved. I began chemo (Taxol and Cytoxin) three weeks after surgery. The day after treatments I received a shot of Nulasta which helps keep your immune system built up. Four treatments three weeks apart. My last treatment was May 19. I feel great and confident that I did the right thing. I was cleared to return to work July 1. (I teach elementary and the exposure to that many kids could have been dangerous during chemo) and I go back to the doctor in August for blood work (tumor markers). I was also genetically tested for the BRCA 1 and BRCA 2 mutations which I did have one of those. Since I don't have my ovaries or either breast now we will just keep a close eye on things. But as of surgery I was "technically" cancer free at that time. God knew what was best for me and I have the upmost conficence that he sent me to the best in the world.