Suddenly, I Can See a Light

Me and My Mom who takes such good care of me!

"All set, let's jet!"  That was the last thing my new Oncologist, Dr. Anna Maria Storniolo said to me as I left her office today.  What a far cry from my former Oncologist who was...ahem...inappropriate and come to find out, addicted to meth!  The Indiana University Simon Cancer Center is quite a facility. My Mom and I were laughing as we watched all the hot, young, new "white-coats" walk by...it was like Seattle Grace!  Before I saw AMS (these are Dr. Storniolo's initials....same as mine....I'm weird about coincidences), I saw Dr. Satpute, who was on a Fellowship w/AMS and he went over my last year's worth of records to get everything straight.  I knew it would be confusing to get 90 pages of my cancer history over a fax so I got him up to speed.  He went over everything with me, but he stated that I could ask him questions, and ask her the same questions again, whatever made me comfortable.  I thought this was a great opportunity to get a second opinion in one appointment.  Interestingly enough, he did have different opinions about a couple of things (Lymphedema risk, and OncoType DX testing).  Because of the Stage 1 scenario, he definitely recommended a test called OncoType DX.  This test assesses the likelihood of recurrence in early-stage cancer with E+ tumor.  The test analyzes a panel of 21 genes within a tumor to determine the likelihood of recurrence and whether there would be a benefit to chemotherapy. I asked him additional questions about this test and some other questions too.  He was patient, kind, and explained things very well.

After Dr. Satpute finished up, AMS came in- WOW- she was such an engaging, enthusiastic, and informative doctor. First and foremost, she told me that she would not have done anything differently on how I decided to treat my cancer or how my Doctors approached my cancer. She told me that biologically, my scenario couldn't be better, as far as my tumor goes.  It was highly Estrogen and Progesterone receptive, HER2 negative, and was very low grade.  So low grade, in fact, that she said that it has probably been slow-growing for 10-12 years!  I asked her about the discrepancy in the HER2 tests and she said that they fight with pathologists all the time to just do away with the stain test (IHC) and just do the FISH test to determine the HER2 status.  It is the most accurate and she assured me that the tumor was indeed HER2 negative and to be sure of that.  Because of the early stage and great pathology, she recommended NO chemo and to stay on the Tamoxifen for 5 years.  Having gone through the whole OncoType DX testing stuff with the other Dr., I inquired about doing that testing and she said if I wanted "that number to hang my hat on" that I should do it for peace of mind, but that she didn't foresee an outcome that would mean I'd need additional treatment.  Being the worry-wart and nervous-nelly that I am, I told her to order the test and that I NEEDED TO KNOW FOR SURE!  Another test, more waiting, blah blah blah, I'm used to it all by now. She was truly fascinated by my case and told me that I had "old lady" cancer in a young person's body (which is a good thing). Having had Dr. Y tell me chemo was most likely in my future, all of my other questions for her pertained to just that. I'm 95% out of the woods on chemo.  Fingers/toes crossed.  I follow up with her in 3 weeks.

Another baffling issue with all of this.....the differing opinions about Lymphedema.  My God, can we get a consensus on this???  I've asked every one of my doctors and everyone has different opinions about whether I'm really at risk or not.  I've only had sentinel nodes removed, but even that carries risks.  All I can say is that I'm a firm believer that I have to be my own advocate for this and go with my gut.  What is the big effin' deal about getting my blood pressure taken on my leg if it means eliminating the risk at all?  So although I might go as far as doing just that, getting my BP taken from my leg, I may forgo the compression arm sleeves when I fly.

(KOURTNEY UPDATE): Mom and I cruised north to Fort Wayne in time for my "weekly" plastic surgeon appointment with Dr. S (suddenly I have 3 Dr. S's!!).  Having issues with my incision with my last mastectomy, I really tried to be careful this time and not take off my steri-strips until they just fell off in the shower.  Well, they did over the weekend and when I held the mirror up to take a looksy I said, "oh, fu**."  Only I didn't say fudge.  Lots of blistery spots that I remembered from the last go-around, only this time it looked worse.  I knew there was no fill-in in my future for probably the next 2 weeks and of course, I was correct (Dr. S is so predictable).  He said that it would be ok, and that it isn't infected so that's good.  I said to him, "So, can I run yet?"  He said, "Yes, but take it easy!"  I said, "I'm going to Vancouver next week, can I snowboard? (trying to keep a straight face)"  He doubled over laughing.  :(  BOOOO!  I know I was pressing my luck, but I had to ask.   Nothing spells disaster like an out-of-shape former bi-lateral breast cancer patient rupturing an implant in a foreign country.  Ok, I guess I'll concede that one.

Next up....my first work trip since surgery.  Vancouver next week.  I can't wait to see my industry friends and personally hug them for all of their well-wishes and cards from afar.  Going through cancer and everything that goes with it, has sure given me a new perspective on things. What a blessing!

As always, feel free to email me at amymariesmith93@gmail.com with anything, really.  If you have an opinion/experience with Lymphedema, I'd love to hear it.  If you want to share your opinion about the Keystone Pipeline, that's fine too :)  I just love a full mailbox.