Meeting with Dr. J

Since our last post, we have had some [more] time to think about our genetic test results, what it means for us, and what we can/want to do about it.  After getting some much-needed manicures together, we headed to the Windsor Regional Cancer Centre to meet with the genetic counsellor, Dr. J.  Rather than have two individual appointments, we requested to all meet together.  Today’s post is to discuss what was said at today’s meeting and our feelings about our respective preventative strategies.

Dr. J began by asking us how we felt about getting the news about our positive BRCA1 test results.  We both reported feeling simply “OK” with learning the results, since we both expected them to come back positive.  We said that while it isn’t what you WANT to hear, it is still better to know, than to not know (ya know?!).  Again, we were not shocked in learning this information.
Nikki:  About five days after getting “the call”, I had an ugly meltdown.  I did not tell Dr. J about this.

Heidi spoke first about what she wishes to do with respect to a preventative strategy:

  • Preventative double-mastectomy;
  • [Immediate, if possible] reconstruction;
  • Schedule surgery ASAP, preferably before winter;
  • Would rather have surgery during warmer months;
  • Removal of ovaries in future (around 35-40 years old); and
  • Do not wish to have children (at this time)

Dr. J’s response:

  • Not able to do both mastectomy and reconstruction in Windsor;
  • Will have to look at London or Toronto;
  • May not be able to book surgery before this winter;
  • May have to consider spring/summer 2017;
  • Will have office start making inquiries at both hospitals;
  • Ovarian cancer not likely before 35 years of age, risk higher each year after that; and
  • It’s possible you may change your mind about having children

Nikki’s turn:

  • Preventative double-mastectomy;
  • No reconstruction
  • Removal of ovaries after 35 years old;
  • No more children (tubes tied at 25 years old);
  • Mastectomy once school year is finished (late spring/early summer 2017);
  • Already on high-risk breast cancer screening program;
  • Want to stay on program and get mammogram and MRI;
  • If anything shows up, have mastectomy done right away;
  • Refuse to have “Dr. H” perform surgery if done in Windsor, based on advice from various sources (private and public); and
  • Prefer to have plastic surgeon perform surgery, based on advice from Aunt B’s and Aunt H’s personal experiences;

Dr. J’s response:

  • May not want to remove ovaries “too early”;
  • Do not want to artificially “estrogenize” body (counter-productive);
  • Mastectomy: removes breast tissue where breast cancer is found, also reduces amount of estrogen in body;
  • Preference of doctor? Male/female? [no preference re: gender of doctor];
  • Looking at 1-2 week recovery if working at desk job (everybody is different); and
  • Will have office start making inquiries at London and Toronto

So now it looks like we’ll be having our mastectomy surgeries around the same time, which is pretty cool, considering the circumstances.  At this point, we are just waiting to hear back from the Cancer Centre when they will report on their inquiries to the doctors in London and Toronto.

We both seem to like Dr. J.  He is understanding.  He listens well, and he respects our wishes.  He told us success stories from both sides of the mastectomy fence (i.e. choosing to or choosing not to).  He did, however, make an odd comment to say that sometimes breast feeding isn’t natural [for real, folks!].  Ummmm… WHAT?! LOL

For our next post, we would like to share some facts about the BRCA1 gene mutation, as well as a brief history on how our family has been affected by breast cancer.

garden sunflower

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