Cancer Talk

I've decided to put off writing about Vegas to talk about cancer.

Today, I was at the physiotherapists. I did my whole program and went over to the front desk. I made sure I had my appointment for next week and then the receptionist, Kathy, introduced me to two of her friends who were standing there. She said they had come to talk to me and did I have time to chat. I said sure. I thought maybe they wanted advice on insurance. We went into a private room and they shut the door. Turns out that all three of these ladies (ages 42, 43 & 45) have found lumps in their breasts and all three were told by their doctors that it was probably hormonal and nothing to worry about. All three were told that because there is no dimpling in the breast and that the nipple isn't "inverted" that it's nothing. Well, I gotta tell you, I didn't have either of those things. I ended up actually feeling two of their "lumps". I'd say that one is definitely suspect. It's the size and feel of a frozen pea. I told her that if it was me I'd be getting a mammogram. I also told them that my particular cancer didn't even show up on the mammogram so they should ask for an ultrasound, too.

This got me to thinking. How many women out there wait for a long period of time to get checked because their doctor said it's nothing? I have to tell you that we all have to be our own advocates. We have to say "I want........." and follow up with it. Stick up for yourself as though it's life or death because it just may be.

I also have an issue with my Herceptin treatments. As I've explained before I will be on Herceptin until January 2009. It is a chemo drug that specifically targets HER2 cells. My tumor was positive for that so I get Herceptin to target any lingering cells. That, in itself, makes me nervous. What lingering cells? Didn't they get it all? I have to calm that part of my brain and just go with it.

Anyway, my doctor told me that I needed to do Herceptin every 3 weeks for a year. There were no other time periods mentioned. So for the past six months I've been doing as I was told. Now, that doctor has left and I have a new doctor. The new doctor says that I'm supposed to do Herceptin every week and asked me why I had chosen to do it every 3 weeks. I explained that I wasn't given an option. This is how it was prescribed for me. He explained that all his patients do it every week because that's what the American Medical Association says to do. He said there weren't enough studies to warrant doing it every three weeks. He also said that I can continue to do it every three weeks if I want to because, as my doctor he can only give me facts and then it is up to me to make the decision as to my treatment. I am so confused by this. So I started looking up and asking around. How often do other people do Herceptin? I sure as hell don't want to risk my life by doing it every three weeks. Of course I'll do it every week if I have to. So I asked the chemo nurses. They said every three weeks is fine. That, yes, all his patients do it every week but most other doctors prescribe it every three weeks. Then, my friend, Shelley found out that at Princess Margaret in Toronto do Herceptin every three weeks. Other people online (Cancer patient message boards) seem to do both. Some do every week others do every three weeks. I just don't know what to do and my doctor wants an answer next time I see him - which is Tuesday. Anyone got a suggestion?

I also want to talk about what it's like to have had cancer. First off, it's scary. You're always thinking about whether they got it all. When I tell people I had cancer and went through chemo they always ask "Did they get it all?". I'm never sure how to answer that. I always say "They think they did. I hope they did." Only time will tell, right?

I have to tell you that I don't think about it as soon as I wake up in the morning. I'm not sure when this happened but it used to be that I'd wake up and think "Oh shit, I have cancer." I don't do that any more. Sometimes I don't even think about it until noon or later. That's such a good thing and a big relief. I was told that this thinking about it every minute of every day would eventually go away. It took some time but I seem to be getting there.

I should also update everyone on my hips. I seem to be having quite a bit of pain in the right groin area, which is a sign that the hip is deteriorating. I'm going to go to my orthopedic doctor and see whether this is happing a little quicker than I had hoped. The frustrating thing with it is that there is no timeline. You know, like when you break an arm or something they tell you that you'll be ok in 8 weeks. With this, I could end up with hip replacement in a year or in 15 years it just depends on how quickly the bones deteriorate. They also don't really know when this started. I took a lot of prednisone for a lot of years and that could be why I have this. Of course it could be the chemo. Then again it could be the combo. They don't really know why this has happened. So there's a lot of things that are just up in the air. It's a little hard to mentally accept that. I'm a planner. If they could say "You will need a hip replacement in 5 years and 7 weeks and 5 days and 8 hours" I would be much happier. This "not knowing" is hard for me to deal with.

I think that's all I have to say, right now. I just thought people would be interested to know where my brain is right now.

ttfn