Tuesday, October 14, 2014

Radiation planning

Sorry for the silence but we are mostly waiting right now so there hasn't been much to report. Today we met with the radiation oncologist (Dr. Lingos) at Dana Farber to start planning for my radiation.  We ended up being there for almost 3 hours which we did not expect.  We accomplished the following:
  • Confirmed my implants are ok as is to radiate around, although there is always the possibility of issues down the road
  • Discussed likely side effects (skin issues - sunburn, tenderness, peeling - and fatigue) and more rare ones (lots of scary stuff I won't think about now)
  • Discussed what to radiate (just the breast or breast and lymph nodes).   She is of the mind to radiate both and we agree to be more aggressive here.  The risk of additional side effects is low so if it gets me any benefit, I'll take it.   She said a lot of doctors would leans towards not radiating but she is of the school that would.   She's still thinking about it but we'll confirm before the process gets started.
  • Discussed soap/deoderant considerations as you need to be careful what you use
  • Set up a schedule which starts on November 5 for 28-33 treatments.  If I go 33, I will end on December 23.  If I end up needing chemo (which is now dependent on some further testing), the schedule will change as I'd have chemo first.  My treatments will be at 1pm each day, which I scheduled forgetting how many half days and days off we have in November in Hopkinton!!!   Any neighbors reading this... I'll probably ask you to get the kids off the bus every now and then and might be looking for some help on days schools is closed! ;)
  • Chatted with another radiation oncologist who works there that was in my class at Holy Cross.  I noticed him when I was researching Dr. Lingos and he happened to be in today.   It was nice to see a familiar face (even though I did not know him well during college).  We Crusaders stick together!
  • I have been really impressed with how much the Boston area doctors, across hospitals, work together.  This was not the case in NJ.   In Boston, they all know each other (or at least of each other) and are happy to consult with each other to get you the right answer.   Egos seem to not be an issue.   (I am not saying egos were an issue in NJ, just that the doctors seemed to stick within their own hospitals when it came to consultations.  It was up to you to get your own second opinion if you wanted one.)
  • I now have 4 tattoos - small blue dots that look like freckles which mark where they will radiate.   This will help them position me each day and will provide a reference should I ever need radiation again.  I will be given the lifetime maximum dose for my right breast so they'd need to be careful in the future to not radiate the same spot.  
  • Everyone at this facility is SO nice - doctors, nurses, techs that administer the radiation.  I am very comfortable there.
As for the chemo question, we think that my tumor will be sent out for the Oncotype DX testing I had last time to see if my "score" has changed at all.   The score is an indicator of the likelihood of "distant recurrence" or metastates later on.  Hopefully, the sample was sent out today and we'll hear back within 2 weeks.  We are still hoping that the risk is low given my ER/PR+ (estrogen, progesterone) status but we'll see.  Craig and I want to be as aggressive as the medical community will allow/recommends as I cannot go through this again in 3.5 years.  (Having chemo 3.5 years ago would likely NOT have prevented this recurrence so I know we made the right decision at the time.)  
We'll also do the consultation with the medical oncologist at Dana-Farber (Dr. Winer).   Every time I mention his name to anyone, they talk about how great he is.    He clearly is very well-respected in Boston!

1 comment:

  1. Sounds like you are getting the best care possible and it was fate that had you move back to Boston...I am happy to know that the docs are focused on YOU rather than each other - very encouraging that they work well as a team! Keep up the positive thoughts and I know you'll kick this!

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