"When an affliction happens to you, you either let it defeat you, or you defeat it.." - Rosalind Russell

March 27, 2011

Menopause is a bitch

Lots more to talk about:

First and foremost = PET Scan = good!!! No sign of cancer anywhere

Now for the rest:

  1. Radiation: No go. The radiation oncologist said there was no reason to have it now because I don't have active cancer. It will always be an option to do it later however
  2. Chemo. Still not doing it. No poison today thank you.
  3. Genetic Testing: This one was interesting. While I was again told that there is maybe a 5% chance of having the BRCA mutation, there is another mutation that is linked to clear cell- Lynch Syndrome. It is the most common heredity cause of colon cancer, and is linked to ovarian, kidney, stomach,  intestinal and other cancers. I want to research this condition more, but it's definitely not something I wanted to hear. He said that he was going to possibly look into getting me tested, but that included a lot of paperwork as usual, considering it's not covered under insurance. And if I have that mutation- yearly colonoscopies. Yep. It seems things just keep getting better and better :( 
  4. Avastin: I just got a letter from the insurance company saying that I wasn't approved because according to the FDA, Avastin has yet to be proven to be beneficial in the case of ovarian cancer. This was expected however, and so I sent in my appeal to the company itself for approval. 
  5. CA-125. I had a blood draw at my last appointment but I haven't received the results. I don't think my numbers really matter at this point considering they were stable despite my last tumor. I guess it would matter if they were 400 again, but I expect it to be under 15 as usual. 
  6. PET scan: every 3 months. I'm curious if insurance will pay for it, but either way I expect to get charity care (application in process)
  7. Receptor testing. This was an important one. My doc order tests using a sample from the tumor that was removed: ERPr (tests if my cancer grows in response to estrogen or progesterone) and HER2/neu (a protein that cancers make too much of). And what was the result? My tumor is 50% positive, meaning that it IS affected by and grows in response to estrogen (it wasn't affect by progesterone however). WOW GOOD TO KNOW THIS considering that I have been taking a large dose of estrogen for the past 2 years. Way to go doc for never testing for this before. Was this the reason the tumor came back? Who knows, but it definitely didn't help. Unfortunately we didn't have the results of the HER2/neu test, because the clinic missed that order and didn't test the tumor for that receptor. WTF SCCA? Get it together!
  8. So what is the significance of the tumor being estrogen sensitive? It completely redirects my treatment plan...
    1.  Estrogen: I have to stop taking it. When I heard this I got a little teary. Hot flashes are awful! Now I am officially menopausal and all you older readers know what this means. Mood swings and hot flashes where you could sit in a freezer and still have no relief! And all the other lovely vaginal symptoms and bone loss which someone my age should not have deal with. This was pretty depressing news, considering I hadn't dealt with these symptoms since I started taking 2mg of estrogen every day. 
    2. Bone Loss/Osteoporosis: Now I have to take more Vitamin D and a drug called a biphosphonate. These drugs stop the breakdown of bone that occurs with menopause. I will probably start these after the next appointment. 
    3. Mammogram: as in I need to get one if my cancer is estrogen sensitive. BUT this is a pain- the receptionist spent 15 minutes with me just trying to find a place that takes my insurance. And then when I called them they told me that I had to sign a waiver that I will pay independently because my insurance won't cover it. Despite having a cancer related to breast cancer, you can't be 30 and get one. WTF? Why does everything have to be such a process? Now I have to go back to my doctor and figure out how to work around this.
    4. IUD: I had it inserted because I needed the progesterone to counteract the risk of uterine and breast cancer that is increased with unopposed estrogen. Luckily this is a pretty quick and painless procedure
    5. SERMs- Selective Estrogen Receptor Modulators- MORE TO COME....

1 comment:

  1. Check this place out. It may help. http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.joannacare.org%2F&h=4d10c

    ReplyDelete