Calling all TNs

Hi ladies!

For those of you who only had a tumor in one breast, did your surgeon recommend BMX, or it was your choice to get a BMX?

My mom is getting mastectomy only on the left breast. Surgeon does not want to remove both breasts, he thinks it’s unnecessary. I’m scared of cancer escaping to the next breast.

Kkmay-My dr. gave me the option of mastectomy on the one side or lumpectomy with radiation. There was no discussion on the other side. My dr. made me feel like the mastectomy on the one side is on the "over-treating" side. If I was BRCA positive, then I think they would have recommended both. I was told that the chances of recurrence are the same, and that the risk of triple negative is not necessarily it coming in the other breast but to other areas of the body as well.

Is it possible for your mom to get a second opinion?

My Nat has the BRCA2 so the oncologist said a DMX is highly suggested. So we will be doing that. With BRCA2 the chance of recurrence is high but we were told with the DMX it would greatly reduce the chance to under 10%. Nat will also have her ovaries and Fallopian tubes removed when she is fully recovered. Hope that helps.

Thanks, PiperKay. This is the information I had, but you explained it much better. Thanks.

I thought originally i wanted dmx..my doctors suggested to do lumpectomy bcuz mx wldnt change reoccurrence. Also I needed radiation which wld weaken the skin. Less likely for complications in lumpectomy. The team said. 6 months after healing if I still want the dmx they wld do dmx. I havent changed my mind and I went with LX and Im almost 1 year out since surgery.

Jrominger, As you can see from my bio, my tumor was under 1 cm at 8mm, Grade 3, with no node involvement after looking at 6 lymph nodes. Given tumor size and other considerations, I went with the lumpectomy immediately followed by 4 chemo treatments and then radiation. Radiation wouldn't be necessary with mastectomy, but was presented to me as standard procedure and not really optional with lumpectomy.

I did a lot of reading about radiation while I was going thru the surgery, recovery, and chemo. At first, I was expecting a 6 week course, but as it turned out, my radiation oncologist had been recommending a shorter course of treatment for most of her patients for some years which is now also the recommendation of the American Society for Radiation Oncology (ASTRO). These guidelines supported a shorter course for me which was 16 regular radiation treatments (radiation of the whole breast) and 4 "boosts" (beams targeted just to the area where the tumor was) for a total of 20. I started on a Wednesday and finished up on a Tuesday so the whole thing was completed over 5 weeks, 3 full weeks and 2 partial weeks going every weekday, M-F.

In my reading, I learned about proton therapy, but my medical oncologist was pretty adamant that proton therapy was not appropriate for breast cancer. Some women on this website, though, have had that type of radiation and seem happy with it.

For me the treatments were very easy. Once the radiation therapists had done all the measuring and marking (I got stickers rather than tattoos) before the first treatment, all subsequent visits were quite short. Actual time spent get "zapped" in the treatment room was probably no more than 10 minutes. Most of the rest of the time spent was getting back and forth from the hospital and waits of varying duration in the waiting room.

As for side effects, I had minimal skin damage after using great quantities of Aquaphor lotion every day. It's greasy but very protective of the skin, and I came through without any burns, only some discoloration which disappeared after a couple of weeks. Of course, there can be more damage done than to the skin, and I am experiencing some of those like aggravation of my lymphedema and occasional pain and discomfort. I'm told that internal healing after radiation can take months. And I did experience some fatigue starting in the middle of those 5 weeks or so, but certainly not debilitating. I just kind of wanted a nap in the late afternoon most days, but again, that let up within a couple of weeks after treatment ended.

With this all said, everyone has a different experience and set of side effects, but I hope this provides you with some idea of what radiation treatements are like. I'm sure other women here can offer their own experiences or you can travel over to one of the threads in the Radiation category where there are lots of discussions going on.

Best of luck to you!

Anne

Piperkay and santabarbarian thank you so much for your insight and input!! I guess we will know more after BMX pathology. Right now MO is hoping for no radiation since there was no node involvement but it seems like it might be a wise last treatment. We have 2 friends who had TNBC at about the same stage as us IIB. One had rad and one did not. They r out 3 and 5 yrs respectfully. I’m sure we’ll get good advice when we have more info. But thank you for yours and we’ll use it!!

Great info Moth. Thank you. Sounds very similar to our MO. The reason for our BMX is due to BRCA2. So because of the BMX and hopefully still no cancer in the nodes we may not need the rads. Time will tell. Thank u all for the great info

New article about the possibility of Tamoxifen for TNBC.

https://www.healio.com/hematology-oncology/breast-cancer/news/online/%7B7d850666-5d23-49b5-b552-651490fb6fcc%7D/important-opportunity-identified-for-tamoxifen-in-triple-negative-breast-cancer

My team originally recommended a mastectomy for me based on my tumor sizes. When I expressed my wishes for a lumpectomy, my surgeon made it happen. Of course that meant that I had to had rads. It probably took more time to get undressed and redressed than it did for the actual therapy. I have four dottattoos, and my skin is still a bit more “tan" on that side. Nobody would probably notice, but I do.

my mom has her first MRI post chemo scheduled Monday then follow up for results Thursday. I'm so sad and stressed. Surgery the 19th w/o recon.

Hoping for a dead, shrunken tumor for your Mom, ufcknifgts!!

Curious if anyone knows their subtype of TN? I was never officially told, and I'm not sure it is something that I should find out.

Its very difficult to know unless you get a certain test panel that tests a bazillion things and looks for the cluster you fall into.

For example, LAR - which is Luminal Androgen Receptor-positive type TNBC, is usually low grade and slow growing. Basal-like TNBCs and are usually higher grade and have more mutations. (TNBCs in general have many mutations).

Me: High grade and fast growing, which suggests basal-like; yet AR+ (90%+) which normally indicates LAR. While my low mutational burden is atypical of all TNBCs. So go figure.

My MO treated me as 'basal like' due to my cancer's high grade and high Nottingham score. I had a good response to chemo so that might confirm his hunch. But it's weird to be so strongly AR+. They count it as highly positive at 10%+

It can be important as basal like BCs tend to respond well to carboplatin/ platinum therapies.

I didn't know either! I just met with the Radiation Oncologist and he said there are 6 subtypes of TN. I saw some subtypes in a couple of studies too, but I assumed I would have been told which one I had if it was applicable.

I have asked my MO twice about the subtype and he looks at me kinda confused. Subtypes are discussed often in articles I read. Seems like it would be good information to have.