second opinion rollercoaster

Ulster57

The story so far:

Area of microcalcs in each breast on screening mammo 7/30

 bilateral core bx 8/13 Path report atypical hyperplasia bordering on DCIS

Needle loc  8/24 Path report showed only "normal" breast tissue

Breast surgeon sends out core bx slides to Mass Gen and path comes back DCIS 3mm, nuclear grade 1, ER+, PR+

Sounds pretty straight forward, however the way all this was communicated was:

1. Core bx results called by LPN in radiology who told me it was NOT cancer, just atypical cells  which the breast surgeon would probably want to remove.  Saw breast surgeon 2 days later who said although path was atypia, he wanted to do a needle loc to see if anything else was "lurking" nearby.

2. Had needle loc, received call from nurse practitioner in surgeon's office that path came back clear, I did NOT have cancer. 

3.  Four days later, received a call from "breast program coordinator" that although the needle loc showed no ca or atypia, surgeon wanted second opinion on core bx path slides.  I was definitely not nice during this phone call.

4.  Met with surgeon who immediately said time for radiation.  I had done some research (including info from you ladies, thanks!) and wanted to discuss treatment opinions based on low grade, 3mm, no margins on needle loc as no abnormal tissue seen.  Surgeon stated these are the NCCN guidelines for DCIS--radiation or mastectomy, period.  Due to me having small breasts, recommended mastectomy.

5.  Researched and found breast specialist at Sloane Kettering who had published extensive work on low grade DCIS and arranged appt  for 9/23.  Sent all images, path slides,etc.  The day before the appt got a call from her office stating needed to cx my appt as since there was no further surgery needed, I did not need to see her.  Although I explained that I wanted  to talk about her research, they would not budge.

So much for second opinion, so now the surgeon sends me to oncology where the MD can only talk about tamoxifen as gold standard, then to rad onc who said if I was "only" concerned with what my breast would look like post rads,  get it cut off as he was not clairvoyant and could not guarantee that my  B cup breast would not shrink, swell, pucker, etc.  Nice.  Also said that there were no breast specialists who would entertain close observation in a 53 year old with DCIS, it was mastectomy or whole breast rads, period.

Sorry so long, but let me get to my real question,  I live in rural upstate PA, not a lot of choices for care here, NYC and Philly 4 hours from here.  Since Sloane "dumped" me am now thinking about Fox Chase as their web site states they have a "Breast Evaluation Center" for second opinions.  Anybody go there for second opinion?

Any 50 somethings, B cup out there who had whole breast rads?  I am worried about cosmetic outcome, maybe mastectomy a better option if my only options are rad versus mastectomy? 

dsj

I am early 60s with a B cup.  I had lumpectomy plus whole breast radiation with concurrent boost for 5 weeks (DCIS in R breast).  My two breasts look exactly the same except for the scar.  I would definitely do radiation over mastectomy if they were presented to me as equal options.  Mastectomy is major surgery which changes your body for the rest of your life.  Radiation is a 4-6 week interlude which, while not fun, doesn't in the vast majority of people lead to any long-term negative consequences.

Anonymous

Ulster- I had multiple areas of DCIS, so different DX than you, so I did go with MX.  Just wanted to say that should you choose MX I would try to see if you are a candidate for nipple sparing MX.  Since you are small breasted, as long as there isn't cancer close to the nipple, the results should be highly successful.  Had I been a candidate for lumpectomy, though, I think I would have chosen that.  I understand your fears about cosmetic outcome with smaller breasts, radiation, etc.  I think that some of these issues can be resolved, though, with fat grafting so you may want to look into that.  For smaller women who have divots in their breasts from lumpectomy they can fill those in by harvesting fat from else where on your body.  And if the skin is thinner from radiation they can do the same thing just over the entire breast.  Just wanted to let you know you do have options either way.  You may just have to travel farther to find a surgeon who does nipple sparing for fat grafting.  But, like dsj said, this is something you will live with the rest of your life so it may be worth the inconvenience.  I had to travel 2 hours from my home to find a surgeon that did the nipple sparing but am so glad I did.  Good luck!

SJW1

Ulster,

Although most people with DCIS have a lumpectomy plus radiation or mastectomy, some doctors feel radiation is not necessary for patients with low and intermediate grade DCIS.

I was a 50 something B cup DCIS patient and the only options out there are NOT rads vs mastectomy. I chose not to have radiation after my lumpectomy in 2007, after I consulted with Dr. Michael Lagios, a world-renowned DCIS expert and pathologist, with whom anyone can consult.

He used the Van Nuys Prognostic Index which he co-authored with Dr. Mel Silverstein to calculate my recurrence risk at only 4 percent. It is based on your age, the size of your margins, plus the grade and size of your DCIS.With such a low risk, it did not make sense for me to go through radiation to get its approximate 50 percent reduction in risk. Dr. Lagios also did not think tamoxifen would be of much benefit to me.

If you would like more info about any of this, please feel free to PM me, or check out my website (or both):

https://sites.google.com/site/dciswithoutrads/home

For you it could be a perfectly reasonable decision to omit radiation. However, you might also decide that it makes sense for you to have it or you might choose a masstectomy It is your decision and you must be comfortable with what ever you decide.

The good news is that because DCIS is non-invasive cancer, you can take time to research your options. You don't need to rush into any thing. 

Hugs and best wishes,

Sandie