Scans

I spent my day off yesterday in the clinic- getting scanned. First I had a CT scan, which includes of course drinking a quart of chalky berry-flavored contrast. It's not really that bad, but I have an hour to drink it. I finished it in 2 minutes and just sat there bored. The scan itself wasn't bad, I've done them so many times. I won't know the results until Monday, or when I schedule my next appointment. I'm not really worried though- I just had a PET and that was fine

Scan number two was a mammogram. This was new to me. First of all, everyone kept reminding me of the question "why are you here?" I'm under 30, with a weird cancer that isn't known to be linked to breast cancer. Plus, since Basic Health won't cover it, it would cost $700. I just figured, why not? it's on Swedish's bill anyways. Turns out my nurse was an ovarian cancer survivor too. She told me that she asked to scan me after reading my chart. We chatted about my experience and she encouraged me to go to one of the support groups, as well as an organization that promotes physical activity by planning hiking trips and offering classes in swimming, yoga, etc. She joined and now races dragon boats. Pretty cool. She also said that she still goes to the support groups and that there are a few younger women, and some others with clear cell. However, she said she always felt a little bad because she was a 8 year survivor and some of the women in the group had active cancer and were late stage 4. The survivors guilt often got to her but she assured me that it was still worth attending the group. In any case, I'm motivated to join a group.

The boob smasher machine itself was weird. It didn't hurt despite the fact that I had to put my boob between two plastic scanners. I had tO put my arm up while the nurse positioned me for proper placement. It was fast and I only had to wait for ten minutes before the doctor called me in to review the scan. As expected it was fine. However when I asked where the cyst was that I've had forever was located, she said that she couldn't see it. Then she said that this was an example of easy it is to miss early breast cancer, even with the most detailed scan

I wrote this a week ago so I did call for another appointment to get my results. The nurse said the CT scan was fine, which I knew was the case. And, I finally got approved for Avastin, and so I start next week!

in a rut again

I'm in a rut and I feel like I've been trying to climb out of it for months. I was doing so well with my diet and cancer tea and making treatment plans, but everything just fell apart. In the past month I have lost 5lbs and I'm down to 122- even less weight than when I was first having cancer symptoms. My pants almost fell off when I was coaching, and my boss even noticed and told me to fatten up. I've also been so tired and unfocused that I can't really get anything done. I'm run down emotionally and physically. Last week I went in to the doctor and ordered myself a blood count and thyroid test to see what was wrong. I was convinced I was anemic. Although fatigue and weight loss were the exact symptoms I had when I was first diagnosed, I didn't think it was cancer this time because my last PET scan had been clean. After explaining my worries to the doctor, he told me that nothing was wrong with me physically, and my diagnosis= stress. Stress from being tired and jobless, having to move, losing some of my support system, and all the other changes in my life. Stress that has caused so many emotional breakdowns and panic attacks in the past few weeks. I'm can't seem to regain control of my health.
It doesn't help that I'm full on menopausal. I have hot flashes every night which often wakes me up. I must kick my covers off (and my cat) at least 10 times a night. And as I mentioned above, I'm an emotional mess. It's getting embarrassing.

Luckily my entire doctor's office has been amazing. I had a breakdown at the last appointment and got the medical assistant and nurse all worked up trying to help me out. They set me up with the social worker who set me up with prescription assistance to cover the $150 copay for Effexor, an antidepressant that has helped in the past. I had to go off before because it was too expensive, but Swedish got it all worked out. Now I can get it dispensed directly from their pharmacy for free.

I also started Tamoxifen last week. So far I don't have any side effects. Unless you count hot flashes, but I had started to get those before. I'm not sure how long I will be on this but I'm sure it will be awhile. Apparently it interacts with a lot of other medications- including every other psych med that I could be on. It also interacts with most cold medicines. It's not a bad reaction- it just makes the Tamoxifen not work as well.

The social worker also got me approved for financial assistance for Avastin treatments. However, before I can start it, my doc wants a baseline CT scan and a full blood workup. The CT scan was scheduled for this afternoon, and so I didn't have breakfast. I got to the clinic and it turns out that even though the medical assistant gave me a little card with my appointment on it, my insurance company required pre-authorization first. And nobody told me. So I was hungry and crabby most the afternoon. I'n supposed to call tomorrow and get it rescheduled.

I think I may start making protein shakes. The idea of drinking smoothies again almost makes me gag, but I need some way to bulk up. My boss got his wife to bake me bread and cookies with lots of fiber and things like oatmeal and flax. It's pretty yummy and nice to walk into the gym and get a little secret snack. He keeps yelling at me for not eating meat though. Sorry but that's not going to happen!

So the plan is now to get fat and get myself back on track. Getting fat is going to be fun. How many people get to go on that diet? I can't wait. I don't think there is anything I enjoy more than eating (when emotionally healthy). The other day I had one of those bags of ravioli that you can steam in the microwave- I ate the WHOLE bag. Another day I at an entire large frozen pizza. Too bad neither of these things are that great for me, but they're a start. What I really need is a personal chef

Shannon Miller has ovarian cancer...

http://yourlife.usatoday.com/health/medical/cancer/story/2011/04/Exercise-is-springboard-to-recovery-for-cancer-patient/46289626/1

Angiogenesis- Avastin

I have no idea who this guy is or even what show this clip was from, but he does a good job hitting the key points. Beware... he talks really really sloowwwwwwwww.
http://www.hulu.com/watch/219298/tedtalks-william-li-can-we-eat-to-starve-cancer

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....