I have a very painful tumor in my right breast diagnosed as Triple Receptor (ER-, PR- and Her2-) negative Invasive Ductal Carcinoma. I had the biopsies done and now will have surgery to get it out and check the lymph nodes. The tumor throbs incessantly and drives me nuts. It has vascularity as well, as the fluid drawn out in biopsy was bloody. I have a similar throbbing in my right neck and in my thyroid. I figure realistically, I am headed for chemo, body scan and such, but in all my looking, I can't find much information on the receptor negative tumors or their chemo type adjuvant treatments. Please advise on recommended chemotherapies...Thanks
Hi Susan - The choice of chemo will be based on the tumor's complete pathology, once it's removed. I'm sorry you're having such pain... Your doctor will use the pathology report to decide on chemo. Many women with triple negative BC get Adriamycin, Cytoxan, and a taxol/taxotere... so that may be a place to start your research. Please read our AC + T FAQS for more information. Good luck with your treatment- PJH
I am 42 and have jsut been diagnosed with the same condition exactly the same. My lump came up overnight. No joke. I even had a ultra sound after I found the lump, that came out normal. But I insisted on a biopsy and that came back as cancer. Anyone else in my same boat?
I am 48 and was diagnosed with Triple Negative Invasive Ductal Carcinoma on 9/21/2009. Today I found out the tumor is Triple Negative - mine came on overnight - exactly the same as yours. It was not small, felt like a ping pong ball. Now it is starting to change shape and it hurts a little. Where are you at in the process? I am at the starting line and overwhelmed. Hope you are doing well and on your way to recovery. SMK
It seems the treatment goes like, Surgery to remove tumor so it can't seed the body. PET/CT Scan to check for metastasis spread, margin check of tumor by pathology (my nodes were positive), then chemo (AC XT4) which lasts about 15 weeks or so, depending on whether it's doubled (dense) or not, then radiation of the area. Then PET/CT Scans every 6 mos to make sure there is no recurrence. I am waiting on the margin check after surgery and have the PET/CT scan the 13th. I found a website that has a lot of information on it and was helpful along with the oncology drug references.
You were very smart to insist on the biopsy!! This kind of diligence is needed to get on top of this type of cancer. I encourage you to get the lump out, ASAP. I had a lumpectomy and axillary dissection after the sentinel nodes were positive. It can spread so you will want to proceed with treating it, in a timely manner.
The outpatient surgery for lumpectomy was not that bad. I have to admit I hadn't had surgery in 25 years and I was pleasantly surprised and the "girls" look fine. :) There are scans, drugs and treatment for this, so I guess we are all in the same boat. There are apparently a lot of women that get this type of cancer, so I am a bit mystified as to why there is no targeted cure. This is something I am investigating to get the facts in order, to take it to those that use our tax dollars for research. it's time for them to stop piddling around.
I wish you the best in your treatment and recovery and do keep in touch!! Susan
Thank you so much for the Faqs sheet on the chemo treatment. It is extremely helpful to have this information. I understand that medical conditions often result in tayloring of the treatments, too. I have a science degree, so in my investigation, I have found a large percentage of women particularly in the premenopausal 40-50 age bracket, and African Americans are the populations primarily afflicted with this cancer, (according to scientific literature) yet there is no targeted therapy specifically for it, like the ER+, PR+ Her2+ receptor cancers. I hope that I can find a way to spotlight this type of cancer that will bring it to the forefront in cancer research. I would like to put my writing skills to good use!! --Susan
Susan, researchers are actually going at this fast and furious; I've got a triple negative post coming up in November, but here's an excerpt from it ahead of time, to get you started on your research...
The use of the drug Avastin in conjunction with chemo has had good results in clinical trials, and has actually been approved by the FDA for use in advanced breast cancer. Avastin, a co-called antiangiogenic drug, keeps tumors from growing the blood vessels they need to ensure a steady blood supply. In addition, one of the most popular diabetic drugs in the U.S., metformin (a.k.a. Glucophage, Fortamet, et. al.), has had extremely positive results against all types of breast cancer, including triple negative, when given at low levels with chemo drug Adriamycin. While still in Phase III clinical trials, the combination of these two drugs both eliminated tumors, and prevented their regrowth; while Adriamycin alone simply kept the tumors from growing, without fully eliminating them.Another promising treatment is a class of drugs called PARP inhibitors. PARP1 is a gene involved in helping cells recover from the natural damage they incur as they grow. If this gene is inhibited – prevented from doing its job – cancer cells are unable to repair themselves, and they die.Another possible future treatment, currently in phase II clinical trials, is the drug Tarceva®, an EGFR inhibitor. EGFR (epidermal growth factor receptor) helps cells grow and proliferate; when it’s “inhibited” (disabled), cancer cells can’t grow. A diagnosis of triple negative breast cancer, with its lack of multiple treatment options, may seem devastating at first. But researchers are making huge strides in discovering new ways, beyond hormone therapy and Herceptin, to stop the spread of all breast cancers. And treatment for triple negative cancers are definitely getting front-burner treatment.
Hope this helps, Susan - best of luck to you, and thanks for connecting here. PJH
i got my diagnosis of cancer the day before my 42nd birthday, I have had my lumpectomy, lymph nodes are clear, waiting for appointment for a PET scan my insurance co is fighting it...flying to vegas to get married on oct. 17th, then time for chemo followed by radiation...dont know all the details as of yet...
right now having issues with breast swelling (twice the size it was before lumpectomy) with redness, heat, and now horrible itching...was told fluid filling was normal the rest isn't? so they did needle aspitaion of fluid and sent to lab, so far what has come back is free of infection...very scared, lost several family members to cancer including my mom( different kinds) my fiance has been great but trying to always be positive for him is hard... kaly
i am 37 and have the same. i go today for a biopsy to determine whether i have it in both breasts. my tumor appeared on the same day i was in a very severe car accident, so all of my doctors told me to ignore it, and it would heal itself. after 2 months, i screamed until they sent me for US, where i was sent for aspiration biopsy (inconclusive), and finally for core biopsy (malignancy diagnosed).
the moral of the story: you have had your boobs your whole life. don't let someone who just met them tell you nothing's wrong, when you know very well something is wrong!
Hi Susan! The tumor removed from my breast was diagnosed as Triple Receptor negative Medullary Carcinoma. I went to my oncologist today and she will be giving the AC+T chemo regimen.
Melissa best of luck to you as you go through treatment. Have you read our chemo series? It might help... PJH
I hope that you are doing well! Good luck with the Chemo. I have to get it too and have a consult on the 13th for it, likely starting sometime in Oct. I have gotten contacts with several persons at various stages of the chemo and they are doing well and some are already through it. Please keep in touch! I wish you the best!! I'm with ya soon on the chemo...Susan
I was diagnosed with triple negative in August 2010. My was stage IIIa and because the tumor was large and at least one lymph node involved my surgeon and oncologist decided that chemotherapy before surgery was the best approach. After dense dose ACT for a total of 16 weeks, I had a lumpectomy and total axillary dissection. I then got great news, I had a pathologic complete response meaning some scarring was evident but the cancer was completely gone. Dancing and jumping around followed. I am now 4 weeks post surgery and will start radiation next week for 30 treatments and then done. Our only protection for reoccurance at this time is a low fat diet of less than 30 grams per day, exercise, and a healthy lifestyle. I have started this and find that it isn't as hard as I thought as long as I stick to lots of fruits and vegetables and keep a food diary daily.
Great news indeed, Judy! Keep up the good work with the diet and lifestyle changes; they can only help. Take care - PJH
I'm delighted to hear about your complete response to chemo. That is wonderful news and speaks well for your chances of staying well. Good for you for making the adjustments to a healthier diet and exercise routine.
Carol, I'm sorry that the Taxol didn't work on your tumor, but have hope that the AC might work great. Your doctor appears to be in the group of oncologists who like to give chemo drugs separately so that they can see which one works best for you. If you had surgery now, the doctor wouldn't be able to monitor which chemo is most effective. You didn't mention how big the tumor is. If it is very large, the doctor may want to continue with chemo first to make it easier to get clean margins during surgery.
We are not doctors here and wouldn't want to guess what is best for you. Your doctor has all your medical history. If you are feeling uncertain about whether his course of action is the right one, don't hesitate to get a second opinion at a comprehensive cancer center. I did that after I found out I had 16 positive lymph nodes. The big research hospital confirmed that my local oncologist's suggested course of treatment was the best, and I proceeded with confidence. I hope you see quick results with the AC.
That's interesting about the way two tumor got smaller, and one got larger. Sometimes tumors can actually be different types of breast cancer in one breast. I am sending hugs and hopes that the next tests show good results.