Triple Negative Breast Cancer: What treatments are you having?

Posted by thielmann1 @thielmann1, Dec 9, 2021

I have just been diagnosed with Triple Negative Breast Cancer after having Estrogen Positive Breast Cancer for 21 years. Is anyone familiar with this diagnosis and treatment that you are having for it?

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I'm TNBC but I'm also BRCA2+ so my treatment is somewhat different. I completed all my chemo; had bilateral (going flat) and just completed 15 sessions of radiation (lymph node evidence in pathology after bilateral). I'm now waiting to meet with oncologist to see I need to be on Lynparza as a maintenance med for a while.

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I had TNBC 3 and 1/2 years ago (lumpectomy, chemo and radiation) then reoccurrence for TNBC 1 year ago ( dissection, chemo and radiation) - the 2nd time was horrible for chemo ( Gemzar and Carbo) - put me in the hospital twice. Praying there won’t be a 3rd time 🙏🏼🙏🏼

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@rahrah6263

Yes, please! Tell me more.

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👍we were pretty under-educated for my diagnosis since I was 8 1/2 months pregnant when I found the tumor and it took a while for my midwives and UCLA to coordinate.

When we finally got rushed through we had 3/4 meetings and appts a day to get to chemo which was a week out.

My husband and I were both thinking just regular mastectomy like my grandma has had in the 1970s, but we took the meeting with the plastic surgeon.

I tested negative for the genes and though the cancer had spread through on the right the left was clear so my team chose a mastectomy that was only on the right, given my young age and the added full course of radiation, Keytruda, and xeloda that was already targeting the cancer.

The plastic surgeon has a chart of life satisfaction post-surgery. Obviously all of us feel great once the cancer is out, but 5, 10, 15 years out people with reconstruction using their own tissue are more satisfied. That argument won me over.

It sounds like you won't have radiation so I'll skip my details about having interm reconstruction (expander/implant).

Actual deip flap surgery was 8 hours with four days in the hospital after, since he had to go in and disconnect/reconnect my blood vessels when transplanting the belly fat. Every hour they would monitor the vessels and a lot of interns stopped by since UCLA is a teaching hospital, lol

Drains were like when I had my mastectomy. The abdominal scar went right over my C-section scar, but way longer. Scar wise the boob looks good.

The one thing I didn't know about was that they started out going in through my bellybutton so now I have this weird looking scar around the slit that used to be my regular bellybutton. For some reason that's the hardest.

Recovery was tough, another 3 months of lifting restrictions, and a lot of bloating. No one tells you it's basically like gastric bypass surgery (at least that's how it felt to me) because I would eat a big meal like I normally do and it was so painful because the food didn't have the space to expand in my belly. The first five or six months I regretted having it done.

Now I am a year and a few months out and I am so glad I had it done. I like not having an implant to worry about, and the radiation shrunk my skin so I am very happy to have some fat between the skin and chest wall. My plastic surgeon did go in and do a lift on the other side to make them match a little more, but the left is bigger than the right which I don't mind.

Hope this helps!

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I was very relentless when it came to my mammogram appointments. I called them before they called me. In August 2022 they saw a little speck, they called me back in for a second exam. The radiologist said it was gone. Six months later it turn into a 1,7 tumor. I should have insisted in August but I was so relieved that it was nothing. I will never make that mistake again. Always stay vigilant regarding your health. I know it’s scary but early detection is the best you can do for yourself.
Take care and stay strong!

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TNBC in spring of 21. 2 cm no lymph nodes. Chemo, then double mastectomy (chosen due to ATM gene and my perceived better peace of mind). I had another round of taxol/carboplatin because I was given an initial chemo that was incompatible with Zeloda (the usual after surgery drug. They now test all TNBC for genes. I have no family history, so I was not initially tested. Knowing this informed my second chemo combination. Don’t hesitate to get second opinion. It is not disloyal and you may learn something useful. I now get a scan every 6 months.

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@lnlowe70

I agree that a virtual appointment would leave me feeling even more alone than I feel now. Somehow it seems like just listening to my heart and lungs is such a minimal checkup, but at least we are in the same room! I am 18 months out from my surgery, and seeing my oncologist every three months with a Zometta infusion every six months (my 3rd infusion is in three weeks, and then there'll be one more next fall.) My oncologist said the Zometta will reduce the chance of a return cancer by 1%--!!--but I'll be glad to take any lower risk, however small!

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I agree about the zomeda. I have been on it every 6 months for almost 2 years, my oncologist said we may continue to 3 years or stop at 2. I had left side masectomy no reconstruction. No lymph nodes involved. 3 weeks of radiation and xeloda for 9 months, I had to stop twice and restart lowering dosage. Had peeling feet and bad diarrhea.
I alternate between the surgeon and oncologist every 6 month. Diagnostic mammo every other year, MRI the other years.
Best wishes to all of you on this journey.

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@cmdw2600

I am 3 1/2 years out from completing treatment for TNBC (chemo, lumpectomy, radiation). Wondering how your recurrence was detected. We’re you suspicious? I wish I didn’t worry, but since I feel lumps and have tenderness, I do!

I am sorry you are dealing with this. No one wants to go through it once, let alone a second time.

Best wishes to,you, Cindy

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My reoccurrence Tnbc was found when I, had my 6month mammogram. At first they said it was nothing and 6months later it turned out to be stage 1 Tnbc.

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@rahrah6263

My reoccurrence Tnbc was found when I, had my 6month mammogram. At first they said it was nothing and 6months later it turned out to be stage 1 Tnbc.

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I am sorry to hear this. I am four years out from diagnosis of TNBC. 2019 was my (almost) year of treatment, with good results. I only get mammograms yearly based on my oncologist’s recommendation and must say I do worry quite a bit about recurrence. I try to take one day at a time and live in the present, but it’s difficult when I feel changes or discomfort in my affected breast. My oncologist did not prescribe any follow up drugs because I had a complete pathological response.

Best wishes to you, Cindy

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@cmdw2600

I am sorry to hear this. I am four years out from diagnosis of TNBC. 2019 was my (almost) year of treatment, with good results. I only get mammograms yearly based on my oncologist’s recommendation and must say I do worry quite a bit about recurrence. I try to take one day at a time and live in the present, but it’s difficult when I feel changes or discomfort in my affected breast. My oncologist did not prescribe any follow up drugs because I had a complete pathological response.

Best wishes to you, Cindy

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Curious as to your treatment plan with such good results.

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@drummergirl

Curious as to your treatment plan with such good results.

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I had chemo first (4 Adriamycin-“red devil”), 12 Taxol, then lumpectomy, then 30 radiation. I didn’t have lymph node involvement from the beginning. TNBC is tricky because we don’t get follow up treatment like our estrogen positive sisters unless oncologist recommends. Mine did not because these drugs also, of course, come with side effects.

I also saw an integrative medicine doctor during my treatment and I feel he was a big help with regard to diet, exercise, supplements (he did not try to sell me anything) even acupuncture, meditation and therapeutic massage. I did not avail myself of the last three but may in the future.

Hope this helps. 💌

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