Had my Radiology Consult - Aggressive

Hey everyone.  Entering Phase 3 now (chemo was Phase 1, BLM was Phase 2).  Met with the Radiology Oncologist today.   The RO was extremely thorough in his education to me today.  He is also going to be quite thorough (read aggressive) on the radiation plan as well.  I have decided to look at it as a positive indication that he gets how serious TNBC is.  

Got my post bilateral mastectomy (post chemo) path report today. The info on the right breast (the cancerous side) reads as follows:

Nipple - negative for malignancy
Stellate area of fibrosis -
post operative/biopsy related changes
negative for residual invasive carcinoma
focus of ductal carcinoma in situ - solid pattern, nuclear grade 2, with cancerization of lobules.
DCIS focus measures 1.3 mm
separate focus of atypical ductal hyperplasia

would this then not be considered pCR?

the surgeon said that though some people would get radiation, most would not

had seen a radiation oncologist before surgery and she felt that unless there was something glaring on the path report (more than a stray cancer cell or two) radiation would not be advised

had a hard time in getting a read from the surgeon as to whether this path report was good news or not (it was a telephone conversation) my follow-up appointment with him is on 8/19

did see an oncologist at Dana Farber in Boston before I started chemo and thought I should run it by her as well.

any thoughts from those senior (not in age!) members of our group on my situation?

Judy

Donna: 

Jude,
I don't think in your case, because you had lumpectomies before chemo followed by BMX that one would use the term pCR which is reserved for those who had neoadjuvant chemo followed by surgery. With regards to the presence of DCIS, there is some controversy as to whether its presence would preclude saying someone had achieved pCR (MDA says OK to have DCIS, the Germans have looked at this extensively and concluded pCR should be restricted to no IDC or DCIS in breast and no cancer in nodes). The good news is that chemo did seem to take care of whatever residual cancer that was still there.

Weekender,
How was the IM node initially found? by PET-CT? Did you have a followup PET-CT after chemo to see if it still lights up?  I assume that it was not surgically removed since it would require opening up the chest cavity. Most definitions of pCR require that there is no cancer in breast and nodes.  With regards to radiation treatment plan going forward, it does seem like there is a lot of variation. A second opinion would be a very reasonable thing to seek at this juncture. Radiation has a lot of downstream effects which could be quite debilitating. If it involves losing 30% of your lung capacity I would definitely try to get more input before signing up. 

One thing that seems a little strange to me is the inclusion of the supraclavicular nodes as part of the regional nodes.  These nodes do not drain the breast, rather they drain the lungs and abdominal organs. However they apparently can get involved although rather late in breast cancer at which point, mets to the viscera might already have occurred.  You might want to find out what the thinking is behind zapping the supraclavicular nodes.

Lee,

My recurrence was a regional recurrence so all 3 rad consults (MD Anderson too) recommended hitting all regional nodes, including the supraclavicle. I never questioned it as all 3 opinions included the same area. For me since my sentinel nodes from surgery were clear, we figured the tumor drained to other lymph nodes, not the sentinel nodes, which can happen though rare. I guess the thinking for me was since it had already gotten to a regional node (Stage 3 now) to hit them all. I didn't know enough about lymphatic drainage to question supraclavicle area.

Weekender,

When I met with the rad onc who did my tx, she gave me a sheet with statistics of possible organ damage from rads. It was scary as the lung had the highest percentage. Just like warnings on pill bottles, they have to caution you on all possibilities. If I had any damage, it's very minimal as its not usually noted on scan results. Ask about ways to reduce the effects. Do they offer IMRT radiation? Where I went they had 2 machines (only 3 in our city).

I think one long term affect from radiating my supraclavicle area is about a year after tx, my thyroid stopped working normally and now I'm hypothyroidism and take Synthroid.

Donna

Well update on my Lymph node involvement...my Radiology Oncologist is wonderful.  I think it is rare to find a specialist that is not only thorough in their field of study but also has a strong patient relationship skill. I went in for my Simulation and  I told the Dr. that after the consult Sissy and I felt very comfortable with him as his plan was to be aggressive.  He asked why I felt he was being aggressive.  I explained that since the lymph nodes under my arm were negative I was surprised he was doing sub-clavicle lymph system radiation.  To my surprise I was informed that my axillary node under my arm was indeed cancerous.  That the PET scan clearly showed it glowing and that was more accurate then the biopsy as they may have biopsy'd the wrong node or gotten inconclusive tissue.  That when they brought my case to tumor board they diagnosed all the results and concluded that the biopsy result was not accurate.