I am sure this is not the last time I will utter those words! I heard back from my surgeon about why only 1 tumor was tested for its estrogen, progesterone and HER2 involvement - because that is all the insurance companies will cover! That is so crazy because (1) more than person I have heard about with multiple tumors had different involvements in each and (2) the treatment protocols are a bit different based on these results. The hospital will now (on its own dime) test my other 2 tumors for the HER2 status.
I also spoke to my surgeon about inserting the port for chemo during my mastectomy and she does not recommend it. First of all, the port needs to be inserted in the same general area she is working on from a mastectomy perspective. Secondly, they are already introducing a foreign object into my body with the tissue expanders so better to wait on the second one from an infection perspective. I'll have the port put in during a second procedure later in March. I'll be getting a Power Port. The procedure takes about an hour and happens in the OR.
The last thing we talked about was the recent study that came out about the number of lymph nodes removed after a sentinel node biopsy comes back showing cancer. The study was based on women who were having a lumpectomy followed by radiation, which is obviously not me. The study indicated that the survival rates in women having further nodes removed was no different than those having no further nodes removed. This is great news because removing a lot of lymph nodes is not good for you and can result in lymphadema. At this point, doctors are trying to decide if the results can be extrapolated to women with mastectomies who are not planning to have radiation. This will not be decided in the next 2.5 weeks so IF my sentinel node(s) comes back with cancer, she will remove more nodes but not all (as often, the further nodes won't have any cancer in them). I am still praying the sentinel node(s) come back clear and she won't have a decision to make in the operating room!
well, what an amazing hospital that does things out of their own pocket! it sounds like you're in good hands.
ReplyDeleteThat totally makes sense! I hadn't thought to ask for the port til after my mastectomy otherwise I'm sure I'd have gotten the same answer. I wouldn't worry too much about the biopsy pathology since they have to test all the tissue that comes out from the mastectomy anyway and that's the test results they'll use to determine treatment plan (not the biopsy results which often are based on too small sample for such a major decision).
ReplyDeleteI read that recent study about nodes and wondered about that. For me since I had cancerous nodes and had to have radiation anyway I don't think it would have mattered either way because radiation damages healthy nodes not taken out surgically anyway and that ups the odds of lymphedema in a very big way unfortunately and as you know, I ended up with lymphedema. ;( I'm praying your nodes will be clean so they won't need to take anymore and you won't need radiation. xoxo Keep plugging along, you're kicking it's ass every day by gathering powerful knowledge and making decisions that will ensure that cancer never returns. xoxo
Just one more example of why health care insurance completely bites it in this country! But I am so happy the hospital stepped up and did the right thing. Can't agree more with Julie's thoughts around your knowledge gathering and logical approach...kicking it, baby! Judi
ReplyDelete