Thank you for the information on the TNBC. I was diagnosed with TNBC in August 2009. I've gotten bilateral mastectomy (my decision even though the cancer was only found on one side). Mine was node-negative; it was considered to be at stage II A.
Up until meeting with the oncologist, I was very upbeat (as upbeat as one can get when was told that one has the big "C") about getting all the treatments. Then I met with the oncologist and learned what the Triple Negative meant. I felt very scared and even more devastated. My encologist is very straight-forward with the information and did not mince words. My understanding of this is I have a tougher battle to fight than other women who have "postives".
I've done 2 of my AC chemo treatments and 2 more to go. My regimen was every other week, plus 10 day injections of Neupogen in between treatments.
The first treatment was pretty bad for me. I got nausea & vomitting and flu-like symptoms for 4 days. Then the nausea & vomitting stopped, but I was still pretty sluggish for 2 more days. After that, the energy level increased more and more each day. Appetite was not good at all because of the metalic taste. I had to make myself eat and drank lots of Ensure. I also took an herb called Astragalus and it was helping to keep the energy up.
After the 1st treatment, my blood count was so low, I had to get a blood transfusion and delay the 2nd treatment by a week.
The second chemo treatment was better. I was given a drug called EMEND and this helped with the nausea and vomitting. I still felt like I had the flu for 4 days, but at least I could keep food down. The downside of EMEND (to me) was I had to eat something (even just a bite or two) every hour, otherwise I would get upset stomach.
I was told I have Taxol treatments too after the AC, but can't remember how many of those I will need.
I can't wait to get done with chemo. Time seems to be moving very slowly for me though.
Thanks again for the great info. I got really depressed about the Triple Negative and told my encologist that I read lots of stuff about this topic online and still felt helpless. My encologist said I need to find better sites to read. I think I found it. Your site has given me more hope about the upcoming treatments that will be available to help women like me who not only has DCIS, but got the Triple Negative too.
Thank you.
I think you'll find the Taxol is much easier that what you're doing now - it usually doesn't involve any nausea issues. So hang in there.... I'm glad you've come here - this is a great place to share your story, with other women who've "been there" and can relate to what you're going through. Please stay in touch as you go through treatment - we can help you through this! PJH
MY 55 YEAR OLD SISTER DISCOVERED A VERY LARGE MASS IN HER BREAST ONLY 3 MONTHS AFTER A NEGATIVE MAMMOGRAM AND EXAM. SHE HAS SINCE HAD A MASTECTOMY, SENTINEL NODE BIOPSY (POSITIVE), AND THEN 11 MORE NODES WERE REMOVED, ONLY 1 POSITIVE. STAGED SO FAR AT 2B AND HAS STARTED AGRESSIVE CHEMOTHERAPY. BONE SCAN SCHEDULED SOON. ANYONE OUT THERE WITH SIMILAR SITUATION? WE NEED SOME HOPEFUL INFORMATION.
Finding a lump, even a large one, not long after a mammogram is not at all unusual. If the lump started close to the chest wall, it might not have shown up on the mammogram. Or it might have been too small or too similar in density to the breast tissue to show up until it was large enough for her to feel.
Of course, it's scary and discouraging to find out that the cancer has already reached a lymph node. However, the chemotherapy can take care of any escaped cancer cells. I remember how scared I was when my pathology report showed 16 positive lymph nodes. That was 12 years ago, and I'm doing fine today. I hope the rest of your sister's test results are good and that her chemo goes well. As far as finding information, I'd suggest starting with the basic informational articles under the FIND and MANAGE tabs on our site or typing specific topics that interest you into the HealthCentral search engine at the top right of the screen and reading the articles. As you have specific questions, you can ask them in the question section of the site and someone will get back to you as soon as possible.
Debra, your sister's dfiagnosis sounds pretty straightforward. Lots of women have IDC, and the vast majority recover from and go on to live healthy lives. Only having a couple of lymph nodes involved is a positive, too. I'm assuming she's triple negative, as you've asked your question on this thread - which means chemo should be very effective for her. I was diagnosed stage 2B 9 years ago - and I'm doing just fine. And, being diagnosed after age 50, rather than before, is a huge positive. So - hold onto your hope, because there's every reason to believe your sister will come through this treatment and be with you for years to come. Good luck - PJH
Thank you for the wonderful information on TNBC. I was diagnosed with poorly differentiated invasive BC - triple negative variety around Thanksgiving 2010 and just completed my 9th chemo session today of taxol & avastin as part of an TAC protocol combined with Avastin every other week. There will be 20 chemo sessions before surgery which they say I will probably have to have yet under this protocol they said a couple of people they know have had their tumors totally disappear. I am hopeful. What I do not understand is why my oncologist did not have sentinel nodes tested - at this hospital they feel that regardless of the presence of cancer in the sentinel nodes, the protocol/treatment would be the same because I have this aggressive cancer. I wonder if it is best to know if it spread or npt too in this case. I also still go to work every day (except the day I have chemo) I find it helps me to still be active. being the mother of twins, fatigue is my middle name so I think I have held up well. I really believe in being positive. My job on earth is not over - I still have to get my kids into college and find a way to pay for this :-). Just wondering if anyone else had their dr say it doesn't matter knowing whether your cancer has spread given the therapy would be the same....it seems odd to me. Good luck to everyone - you re all my sisters
Helen, sounds like you're doing a tremendous job with treatment - I know how hard it is, trying to work, raise kids, AND have cancer. FYI, one of my friends with TNBC did what sounds like the same clinical trial as you - with Avastin. She has three young kids. This was several years ago, and she's doing fine...
Your doctor sounds right - they would have done the same treatment anyway, given TNBC and its aggressive nature. But personally (and I'm not a doctor), I think it would have been good to know if the cancer had gone into a lymph node; if it hadn't, it would have been a positive for you to focus on. At any rate, you're doing all you can to beat it; and you WILL be around to get those kids into college! That was my goal, too; to get my son into and through college. I did; you will, too. Be well - PJH
Helen, when chemo is done before surgery, the lymph nodes are not usually biopsied. Doctors check the lymph nodes for most patients to see IF chemo is needed; in your case they knew it was necessary. While it would give you some peace of mind if the biopsy came back clean, a surgical complication like an infection might have prevented the prompt start of chemo. When the doctors check the nodes after surgery, they will have an excellent picture of how well the chemo worked.
Hang in there! I still remember how tired chemo made me, and my children weren't little at the time. I too was worried about their college and being there for their graduations, weddings, and the births of their own children. In the almost 13 years since my diagnosis with Stage IIIB inflammatory breast cancer, I've been able to see those milestones. Have hope that you will be able to do the same for your children.
Hi, Helen,
My medical oncologist also said it doesn't matter because the TNBC is so aggressive anyway that the chemo prior to surgery is there to prevent it from going further. I had a breast biospy following an ultrasound scan which also showed that a lymph node had become involved, so my surgeon biopsied the node too.
Believe me, having the biopsy is no fun!
Best wishes on the rest of your treatment plan.
Sharon - thanks for your comments. I have completed 5 months of chemo and am scheduled for surgery in 2 weeks. They say my tumor shrunk from 3.2 to 1.6 cms which is i guess good (I was hoping I would be one of those people whose tumors disappear given i am part of a research study for the protocol they put me through). I will also get sentinel nodes biopsy and depending on what they see, will or will not have a node dissection. some days are rough - its the fatigue, the nails, the neurapathy, EVERYTHING - but I will endure just about anything as long as i can get rid of this illness. I hope you are doing well yourself. best wishes.
I also had hopes that the tumor would disappear and that I would not have to have surgery, since it was in an inconvenient place for a lumpectomy, requiring mastectomy. However, I learned from my oncologist that once a tumor has been located, especially a N3, there will always be surgery. I wish you all the best with your surgery and recuperation.
My sister was diagnosed with tripel negative in July 2010. She found a lump in her breast. She had one breast removed and 13 lyph nodes. Two showed cancer. She has had 3 months of cemo and radiation treatment. The cancer has spread to her lungs,bone, eye and brain in just 6 months. She currently had eye and brain radiation and is on oral cemo. They have given her 1 year to live.
She is still working part time and looks good.
This is an awfull monster cancer! My hart is broken just to know what she is going through. If anyone can give us hope or new treatment ideas PLEASE let us know.
best wishes to all
Lesley, I'm so sorry for what she's going through, and what you're all going through with her, as well. Cancer is awful, plain and simple. It sounds like she's stage 4, and there's no cure for that; for her to remain comfortable for as long as possible is the goal. My only advice would be to make absolutely sure she's getting the best care possible; she might consider a second opinion at a Comprehensive Cancer Center, if she's not already being treated at one of these top cancer centers (as designated by the U.S. government). Other than that - I'm sure having her family and friends around her, and getting your support, is very comforting. Best of luck to you all- PJH
My 28 year old daughter has been diagnosed with stage 3 triple negative breast cancer in July 2010. Her mass was 14 cm x 14 cm, her lymph nodes 4 cms (matastacized to her brain and lungs). She tried 3 different types of chemo taxol, AC and FEC...none worked. Health Canada (Montreal) accepted her on a new experimental drug called Iniparib and carboplatin. Her mass is now at 5 cms, her lymph nodes virtually disappeared. The side effects are minimal, however, the cancer that matastacized to her brain and lungs are very difficult to treat. What is the survival rate of the TNBC
Anna, I'm so sorry you and your daughter are going through this. We're not doctors here; simply well-read breast cancer survivors. Since your daughter's cancer has metastasized to her lungs and brain, she's now stage 4; and only her oncologist can offer you guidance about what the future holds for her.
I'm very glad the experimental drugs worked so well on her breast cancer; and I do hope they find something that works equally well for the new cancers. I wish you both the very best- PJH
Anna,
I am so sorry that the cancer in your daughter's brain is hard to be treated... At least the new drug has helped her breast. It is good that Health Canada allows that. I am in canada too but I had to go to the USA for chemo in 2000 for my uterus cancer at swtage 3. Now I am cured thanks to the chemo.
About survival rate, I think you should ask her doctor who should know better about her case. Also do some research online and check on this kind of cancer. I hope you will find more info.
Good luck and best wish to your daughter and you!
Regards,
Nina
This article on types of metastatic breast cancer will give you some information about treatment options. While it is always devastating news to find out that breast cancer has spread, some of the new treatments are extending the life of metastatic patients. My heart goes out to you both as you make treatment decisions.
Hi! i hope i will be able to find this site again to see peoples responses to this . I was diagnosed with stage 2a tnbc in november. had sucessful surgery no lumph node involvement. tumor was 2.5 k1 67 score was 100. am about to finish my 4th chemo this week which will conclude my chemo. I am on the fence about radiation. They want me to do it for 7 weeks. I dont want to. Why? Cus I dont believe its as safe as they say it is and I dont like using my "one time" dose of radiation now when I feel like they got it all. I would rather save it for a reoccurance- which I am hoping will not happen. anyone else out there reject radiation? what were ur results like? Thanks, Donna
Donna, there are so many tough decisions we have to make around cancer, aren't there? Have they told you you can only have radiation one time? I'd not heard of this before. Radiation these days is so much safer and more targeted than it was in the past, I believe it's safe to have it twice - once initially, and again if there's a recurrence. But you'd want to double-check this with your oncologist.
Radiation is extra protection against a recurrence. So your decision would be, do I want the extra protection now, when I've just gone through chemo? Or do I want to "save" it in case I have a recurrence? Or am I OK with having it twice, if necessary? Your oncologist should be willing to descuss these three scenarios with you, and help you make this decision. Best of luck to you - PJH
Donna, talk to your doctor about your risk of recurrence without radiation. You may feel comfortable with that level of risk. However, I would not decline radiation now in order to save it for the future. If you were to have a recurrence, you would probably need chemo, not radiation, depending on where the cancer spread to. Most of the treatments for breast cancer recurrence involve chemotherapy or other systemic treatments. Radiation is sometimes used for breast cancer that has spread to the brain, but I don't think that the radiation you would have to your breast now would limit the amount of radiation you could have to the brain or other organ. I know lots of people who have had radiation for their first breast cancer and later had targeted radiation for a metastasis to another organ.
they didnt tell me i could only have it once just that what i ve read indicates they only like to do whole breast radiation once.i did see where sometimes they will do it again. anyone have an opinion on partial breast external radiation for tnbc? anyone out there who has done it? anyone out there who has done it and are a few years after the fact?PJ, do u really think radiation is "safe" in ur opinion?
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Thanks for addressing this topic, PJ. I especially appreciated learning about some of the new treatments available for triple negative tumors.
One point that I think is sometime overlooked is that while Herceptin helps many women with Her2 positive tumors, it doesn't help them all. Some tumors don't respond to it, and some women can't take Herceptin because of health issues like heart problems. Herceptin aside, Her2 negative tumors are generally less aggressive than Her2 positive ones.
The test for Her2 status was just starting to be done in 1998 when I was diagnosed. I had to specifically ask for it, and I was pleased when it came back positive because I thought I would be able to have the new "miracle drug" Herceptin I had been reading about. My doctor looked at me with a strange expression on his face and explained that Her2 positive was not a good tumor characteristic to hope for because those tumors are more likely to spread.
Interestingly, Phyllis, I manned a table at a fund-raiser at our local cancer center last night, and the fellow I was working alongside (we were selling bracelets - very cute!) is an oncologist, and a nationally known cancer researcher at Dartmouth Medical School. I asked him what he was working on, and he answered "New treatments for HER2." I asked him how it was going, and he got a real twinkle in his eye, and said, "Lots of good things going to happen, especially in the area of biologics." He mentioned pairing Herceptin with an antiangiogenesis-type drug (drug that prevents blood vessels that supply tumors from growing), and said several things in the pipeline are showing great promise. So it looks like Herceptin may have some company in the relatively near (hopefully) future. Thanks for your good input here, Phyllis - PJH