Anyone not have radiation with Triple Negative

There is some good information on this website regarding when radiation treatment is appropriated:

www.breastcancer.org/treatment/radiation/when_appropriate

I won't know if I need radiation until the pathology report comes back from my bilateral mastectomy.



When in doubt, get a second opinion, maybe from a trusted and knowledgeable radiologist.



Trust your intuition after you've gathered and assimilated all the info you need.



Peggy

Jo Anne: I would get a second opinion.

I did not have radiation, I had 4 rounds of CT for chemo.

My medical team presented my case to the tumor board, and it was decided I did not need radiation.  About 4 months post-chemo, I discovered, through my own research, that I had a narrow margin.

I then went out and got 2nd opinions on whether I needed radiation.  I went before a 2nd medical board, and they felt overwhelmingly that there was not enough evidence to support radiation, even though I had a narrow margin.  We also discovered that my surgeon did remove a sliver of muscle at tumor location, and the 2nd independent lab noted that there was a rim of fat around my tumor.  They felt all these variables added to my narrow margin, making it much wider.

This 2nd board also felt surveillance was best for me, based upon the conditions of the diagnosis, and as for the question of at what point is radiation most effective, they didn't really even address that, as they felt I didn't need it.  So for me, they felt strongly it was best to keep this option available, if I ever needed it, rather than use it upfront without enough elements to warrant it. They said they could give it to me, if I felt 'that strongly' about it, but that they felt pretty confident not to use it.

I at first felt very aggravated that nobody had told me about my narrow margin, but it looks like both medical teams came up with the same answer - no radiation, in spite of things.  The 2nd opinion, the Radiation Oncologist, said if this was her, she would opt for surveillance.  I felt some sense of relief knowing that I still had that option available.

But I think with TNBC, you just don't know.  The newest research suggest that there are 4 distinct subtypes of TNBC - some are aggressive, some aren't.  It worries me some days, the thought of a recurrence, and then other times I can go for weeks without worry.  It's just hard to deal with, having a TNBC diagnosis, but I hear it gets easier day by day.  I'm a 1 year survivor. I think I would have worries whether or not I had radiation. 

In the end, you have to trust your medical team, if your gut feels that they are making the right decisions for you.  If your gut tells you something is not right, seek a 2nd opinion.  Don't feel like they will hold that against you, they know and even come to expect that patients seek additional opinions.  They just want to see you well and healthy, however you get there.

I'm Type A personality and it was so hard to give up control to my doctors, and not question everything.  I still do that ... but to a lesser degree.  

I wish you all the best with your decisions.

Many hugs!

- 2nd opinions / tumor boards / radiation

Missy, 

Did you do the mx after the lumpectomy?

Just to chime in I had BMX with 1.7cm tumor clear margins no positive lymph nodes and had 4dd AC and 12 weekly taxol no radiation. My BS said before my surgery if my tumor was more than around 4cm and/or any positive nodes I would need radiation but luckily I did not. Anyway hope that helps. Joann. I would def get a second opinion.

I had BMX no positive lymph nodes 4 cm tumor first go round.  Lymph nodes were only tested on the affected (left) side.    Radiation was not recommended so just chemo.    Recently diagnosed again with much smaller tumor (1.2mm) - discovered during a routine follow-up pet scan.   Since this one was not on the same side as the original tumor it was classified as a "second primary diagnosis" rather than a recurrance.   This time they are having me go thru radiation + chemo.   The pet scan did not show anything in the lymph nodes or anywhere else other than the tumor site, but they are being conservative in case there is a cell still floating about in there.   They are radiating the entire right breast as well as the lymph nodes on that side. 

I had tnbc, stage 1A, all 3 nodes taken were negative. 3 lumpectomies with fuzzy margins so had a mastectomy which finally yielded clear margins. I was not offered chemotherapy nor radiation since I had no metastasis and my tumor was tiny (>0.5 cm). Later, I found I had a 2nd tiny tumor which was er+/pr+ and was offered tamoxifen but I chose surveillance because tamoxifen's side effects seemed quite awful and would present a barrier to getting into shape. My joints are stiff enough and I struggle with getting enough exercise as it is.

Glad to be here,

Cynthia

TNmother: I found taxol much easier than AC, I felt pretty much felt normal. I had some blackened nails and toe nail loss; a slight rash on my arms; loss of eyelashes and some ankle swelling at the end. But my hair started growing half way through!   

Radiation is virtually ALWAYS given with a lumpectomy. Stats that show equivalent outcomes Mx versus Lx are based on Lx plus radiation, a standard of care now for over 20 years. And recent evidence suggests that radiation may have special benefit for TNs. See my post above.

Do you have a medical condition that contra-indicates radiation? 

Hi Missy,

What does uncertain significance mean?

I'm another one that didn't get radiation. They felt that at this point I didn't need it. I'm now six months out from my last chemo.