Not sure about radiation.....

Carlazana · August 2015

This is my first time posting and not sure if this is the right forum to do this in. I was diagnosed with DCIS, Stage 0, Nuclear grade level 3, estrogen receptor-positive. I have already had my lumpectomy and just started Tamoxifen this week. My surgeon suggested that I not do radiation because there were no cells there when she did the lumpectomy. All margins were completely clear.The biopsy had already removed all the calcium cells. Out of the 5 calcification cores they removed in the biopsy 3 out of the 5 showed DCIS. These were very very small. Less than 6 ml total. I am in a quandary as to whether or not to have the radiation. Because of the minute size of the cells removed the radiologist oncologist is leaving it up to me. i am getting mixed feelings. I know it is grade 3 but they got it all. The surgeon feels it's overkill to do the radiation because there is nothing there to radiate. My oncologist was also ok with not doing the radiation as long as I did the hormone therapy. I don't want a reoccurrence because this was scary enough for me. My thought is that I am on the Tamoxifen to protect me and I will also be closely watched for the next 3 years. This was caught so early due to such wonderful clear pics that mammograms can give now and the great eye and observation of the radiologist. I would also like to save radiation for "future" use if I (God forbid) ever need it again. There is also no guarantee that it won't come back somewhere else or even on the other breast. I guess nothing is written in stone and everyone's journey is different. Thought I'd put this out there and see what your thoughts are.

KBeee · August 2015

Have you had a consult with a radiation oncologist? I would schedule a consult with one or 2 of them. If they do not think it is warranted, most will say so. Generally the choice is either lumpectomy plus radiation or mastectomy, but certainly there are exceptions to every rule. You probably need to decide how aggressive you want to be. Either way, another professional opinion is definitely warrented.

key46 · August 2015

Have you thought about the DCIS oncotype test? I was in your situation-, everything looked like I was at very low risk for recurrence (small lesion, great margins, low Van Nuys score, MSK nomogram etc), and I had been dreading the idea of radiation. When I learned that there was an oncotype test for DCIS that uses a sample of the lumpectomy or biopsy to predict the possibility of local recurrence, and the possibility of it being invasive, I thought that that would confirm my decision to decline radiation. Much to my surprise the score came back in the high range for recurrence. Although I think everyone thought I was crazy, I went for radiation. I'm sure that many people would consider it over treatment, but I wanted to do everything possible right from the start to avoid a recurrence. I did the three week "Canadian protocol" and it went very smoothly. Very little discomfort and I have quite sensitive skin. The oncotype test is expensive, but insurance covered it and I think it might be worthwhile talking with your doctors about it as an extra element to help you make your decision.

Carlazana · August 2015

I just spoke with my radiologist today about the Oncotype test. They are on the fence as to whether or not radiation is needed as the cells they removed were so very small and they got it all out. She brought it to the Tumor board today to discuss. The test is usually not given for a high grade diagnosis but because it was such a small size they decided to do the test. I have decided that if it shows medium to high risk I'll do the radiation. I'm just really concerned about the grade 3.

CAMommy · August 2015

I don't know what I would do, I'd probably do it since its grade 3 and there could be DCIS hiding out in other parts of the breast. If it was grade 1 or 2 I wouldn't. My DCIS was originally thought to be small but high grade and they recommended rads from the get go. After final pathology my DCIS was much bigger than expected so rads are an absolute must.

ruthbru · August 2015

If they recommend radiation, then I'd do it. You don't want to 'save' anything. You want to get this taken care of, and done with forever, NOW!

Carlazana · September 2015

My Oncotype test score was a 78 which is high risk. DCIS was 28% and Invasive was 18%. So it's now a no-brainer about having radiation. I have an appt tomorrow for the "planning session" and probably start radiation next week.

Meh527 · September 2015

As the others' said the oncotype test may help. But also consider another mammogram. My insurance paid for both. Against my radiologist soft objections (the oncologist basically talked me out of tamoxifen), I decided on radiation.

Me, stage 0, grade 2, 8mm, clear margins, ER and PR positive, iconotype 28, calcification return 15%, invasive 6%, do why would I?

Because I don't want to be one of the 15 or 6 of the 100 women in the room. Because even if they catch the same thing again, I still have to go through biopsies, surgeries, and talk of radiation and medication and maybe mastectomy.

Because based on the low percentage results of a return, I shouldn't have got it in the first place.

Because they don't know if they left a little bugger behind they can't see yet. After all, there was nothing to see a year ago.

Because I'm not a gambler.

That's why.

And guess what? The mammogram, post surgeries and clear margins, show shadows of what may be calcification and some other abnormalities.

Because I want to be DONE.

I go this afternoon for genetics testing results, which my rad wants to see before I go Monday to start. Trial run tomorrow. When she read my post mammogram report, she came on the same page with me. Grade 2 means those cells were dying, meaning they were growing.

And, yes, I do have concerns about radiation and my heart and lungs. my rad said mastectomy may come on the table if the genes are bad. I haven't been saving my belly fat for nothing!

Take care. DCIS is very hard when making decisions about treatment because we fear over treatment

Not sure about radiation.....

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