A lot's happened since I last wrote here. #1- I unofficially "fired" my oncologist. Not because she was a bad doctor- she just didn't offer me other options besides chemo. So I sought out another oncologist- based firstly on who would accept my shitty insurance- and found myself at the Swedish Cancer Institute with Dr. Rivkin.
I did some research, and was happy to find that not only was he one of the few doctors outside of my former clinic who would take my insurance- lucky for me, he was an ovarian cancer specialist. The topping on the cake: he set up the Marsha Rivkin Center for Ovarian Cancer Research in honor of his 1st wife who had died from OC. While learning the fate of his wife wasn't happy news, it was indicative of a personal commitment to the cause- because he knows first hand the emotional and physical pain involved with OC.
As soon as the new doc stepped in I knew that I should have done this a LONG time ago. He was pretty much awesome. He's definitely pushing 70, but he came in joking with a smile. Actually he reminds me a lot of my highschool best friend's father with his corny "dad" humor. The first thing he said was "Wow, you shouldn't be here- your such an old lady!" I could tell right away that he really cared- this was refreshing because my first impression of my former doc wasn't as good. While she asked me about my medical history she had her eyes on the chart- this guy was almost the complete opposite because he barely looked at the chart and I had to repeat myself a few times (old age?). Either way I felt really good about him from the start- even before he told me his plan.
I didn't have any imaging studies for him to refer to, but he said that's fine- he wanted to get a new PET scan since the last one was over 3 months ago. BAM! He got it ordered for the next week and my insurance actually approved it!
I told him about my financial worries and he told me that Swedish gives the most financial assistance/charity of any other clinic/hospital in Seattle. BAM! He pulled in a social worker and we set up a time to talk about my options.
Things were happening so fast that I didn't know what to do with myself!
So here's THE PLAN
PET scan: Gotta see if anything left. The doc and I are both pretty confident that the scans will be good
Radiation Therapy: Rationale: The exact radiation fields of my previous treatments were not in my medical chart. My recurrent tumor was in my right lower abdomen, which may not have been given a good dose of radiation. From what I remember, most of the beams were directed at the paraaortic nodes near my kidneys- where the cancer had spread. And of course I had request minimal radiation exposure to my uterus (I realize now that this decision may or may not have been a greatest, but who knows why my cancer came back) Anyways, the idea was that more radiation in this possibly untreated area might help. Dr. Rivkin also mentioned that clear cell type is also known to be more receptive to radiation.
Chemotherapy: I specifically stated that I did not want chemo and that was why I was here. Why? Because I don't want to make my chemo brain any worse than it is. (I'm a certified NP for god's sake! I need my brain!) Here's the docs response to that:
The chemotherapy-sensitivity testperformed on my tumor? The one that I waited two months for the results? He told me that the test is a bunch of bs and all results should be considered inconclusive (I'm looking into what lab was used and studies on the effectiveness of these tests- so far mixed reviews...)
The Japanese have a different cycle for their chemo drugs than American's. I'm not sure what theirs is, but I did the American cycle (Paclitaxol/Carboplatin every 3 wks x 6 cycles). I don't know where he was going with this but I will research further...
Intraperitoneal Chemotherapy: Didn't I ask my other doctor why she didn't do this? Specifically during surgery when there was ready access to my abdominal fluids/contents? Well Dr. Rivkin wonders why she didn't do it too. He said that this could be an option but would require more surgery or other invasive procedures to allow the drug to access my abdominal fluids. Besides the possibilities of infection and complications from the procedure, the systemic side effects were mild, besides fatigue
The PARP drug: wtf you say? This I'd never heard of either, and so the doc got out a little diagram with a bunch of numbers and letters and arrows connecting all of them (I know a lot about body processes and enzymes but definitely not enough in oncology). Everything he said went right over my head, but basically the idea was that Taxol & Carbo fight the cancer cell using one pathway, and this PARP drug used another pathway. So far studies have shown that it works mostly in cancers linked to the two BRCA mutations, but it is also being tested on other resistant and recurrent ovarian cancers. The drug he was considering was called olaparib and it was taken in pill form and had minimal side effects, including fatigue, nausea, & loss of appetite (been there before). BUT this would require a little more information to determine it's effectiveness
Genetic Testing: I told doc that I had already been to a counselor and she said that I was low risk. I had considered it anyways, but it was at least $700 that I didn't have. Well....Dr Rivkin thinks that it would be a good idea, and affordable if the new clinic could offer charity care. He strongly stressed that "a 28yr old should not have ovarian cancer," despite my concerns that I was only low-risk and that clear cell typically afflicted younger women. Either way, I wanted to look into it. If I happened to have either of the BRCA mutations - it would make treatment a whole lot easier, as a therapies could aim at a known target. Unfortunately, it will also scare the crap out of any woman in my family. So good and bad :(
Avastin: Yep it's on the table again and I'm not opposed to it. I expressed my concerns that it wasn't an option financially and my doctor said she didn't have a compelling indication to request financial assistance. Dr. Rivkin says: "Don't worry about it. We'll get you everything you need. Money is not an issue" If that's true then I'm all for it.
That's a lot of information I just made you read, so if you got this far you are a true fan :) More to come!