Today was my rescheduled visit to the oncologists. I'm afraid it is deep going, just like Lemmie found when he went outside on Saturday before we got an additional 13" of snow. I swear, today my doctor and I simply weren't communicating. While I feel better than I did last year at this time and my pelvis doesn't hurt unless we're getting a big snow storm, I was taken aback when he said he wanted me to have another PET scan before I come to see him at my next appointment in June. That means, 2 pet scans in six months. When I asked him about that, he said "You know, I want to keep an eye on that one area which showed some suspicion the last time, on your acetabulum." Yeah. Right. Needless to say I was startled as I didn't even know what the acetabulum was.
I also asked him about the fact that he wanted me to take Zometa infusions but that I hadn't started. We talked about Zometa, which was a little scary....but yet he didn't set up any treatments for me. I'm not thrilled, as going in for monthly doses, even if it is 20 minutes rather than the 4 hours that it took for the Aredia that I used to take, doesn't leave me feeling too good...especially since they took my port out two years ago and my veins stink after all the chemo I've had. In addition, Zometa has some pretty steep side effects, which I guess aren't common but still.....
When I got home, I ran to the computer to check the acetabulum. Hmmm. Very interesting. When I was in Montana and he told me about the pelvic fracture, he told me it was on the pelvis in the area where my previous cancer and radiation was. According to this, the acetabulum is at the top of the hip socket, and my previous problem was much higher at the illiac crest. I'm also not liking what they had to say about acetabular fractures. Crap. Just when I think I'm doing OK and I'm just going to be putzing along and that this was all as a result of the previous cancer location and treatment, I find that it is actually about 8" or so away.... I'm going to have to call him again and ask some more questions and find out when I need to start taking the Zometa. In the meantime, I'll continue taking calcium, vitamin D and Arimidex. Pooh.
I was also a little irritated today when I got a "call for volunteers" for an Army of Women study involving Yoga and breast cancer survivors. Yee Haw! I thought....I can participate in that one! Nope. Not on several counts. They wanted people who were 2 years out (I'm 13 years out); no recurrences (strike two!) and stages 0 through 3 (oops, STEEEERIKE 3! You're outta here!). What irritates me is that if you have recurrences, and if you have significant involvement, they don't want to look at you. I suppose part of it is that they figure if you have stage 4, you're a gonner anyway. If you've had a recurrence, then they don't want to look at you either for about the same reason, and if you are out for as long as I have then it would be hard to tell if it was actually a permanent fix from the previous treatment or that yoga (or whatever) is actually working for you. Still, I say POOH! (Or if I was from the 18th century or earlier "FIE on it!).
I suppose most of you have seen the somewhat humorous column by Sandra Fish which appeared on February 6. If not, look at it here. Ms. Fish, who has had a left mastectomy with reconstruction, recently had extra attention paid to her by the FSA. Apparently, the new scanners don't particularly care for her silicone implants. Since then, I've seen some other spots on the internet saying that female suicide bombers are using breast implants which are actually explosives.
I don't know what to think about this one. Certainly it would probably make sense for us to be treated pretty much the same as people who have pins, hip replacements, etc. and have excess metal in them, but I do wonder. I can see myself now whipping my prosthesis out and flipping it on my head or other some such nonsense. I don't call it my sillycone for nothing.
Even so....it does give one pause.... and pretty soon, I can feel like I'm the car treads frozen in the slush....
Stay tuned...I'm going to have a tutorial and converting standard bras to mastectomy bras within the next couple of days. :)
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I wish more long term stage 4 BC survivors would post. I live in the UK, and was diagnosed with stage 4 BC in Feb 2010- mine has spread to the bone (skull). My Oncologist told me the average life expectancy is 2-3 years, and basically I have been crying ever since. Because my cancer is oestrogen receptive, I have been put on Letrozole (Femera), and monthly bisphosphonate infusions to help keep the bone intact. Other than that I have been told that the only monitoring will be 6 month sessions to see how I feel - so no further tests unless I report feeling unwell.
ReplyDeleteWell Lesley, I'm glad you've found me....according to the statistics, I've been dead for several years....so keep your chin up.
ReplyDeleteFemara is an interesting drug, my husband's cousin is on it and has been and is doing well. Essentially, you and I are on the same treatment as Aromisin (or Aromasin...however you spell it) is just one level below Femara. Zometa is the biphosophonate infusion. I had my first treatment a week and a half ago, and according to my oncologist, you can stop it using the combination of drugs.
Here's hoping you have a VERY hard head. :)
Many hugs to you. Lisa