Friday, June 26, 2009

Taking Advantage of the Cancer Patient

I am really disgusted with one of the message boards (Yahoo groups) I have been following. This particular group was developed for Stage IV breast cancer survivors.

One person... who lists variously as "nur said" or has no name at all but posts the blog of "idohealth" has a nasty habit of posting all sorts of things about how awful and terrible conventional medicine and treatment is.

Often what this self-appointed guru posts is complete fiction.

The person never identifies him or herself. Never says what his/her experience with cancer is, or anything personal.

The thing which is really maddening is that this person has taken over the group. There apparently isn't a moderator. The tripe does nothing but spew negativity and fear.

Granted, the poster may be thinking that he/she/it is doing survivors a favor by pointing out problems in the medical field or suggesting alternatives. But to my mind, he/she/it is doing nothing but unnecessarily scaring people.

Word to the wise: don't believe EVERYTHING you hear, especially on the Internet and especially from people who don't identify themselves (and yes, that includes me). The second word of wisdom is look for sites for survivors which have moderators who don't allow people overtake the site.

Wednesday, June 24, 2009

A New Possibility...the Silver bullet??? the picture is of Las Vegas, not fireworks, but it is the best I could do from my own shots.
According to the news tonight, they have determined that PARP drugs might have new application for those of us who are not BRCA1 or BRCA2 positive....I'm not. Apparently, the drug has been used for those who have these two gene abnormalities with good results, but it may also be useful for those who don't have the gene abnormalities.....
Supposedly, the trials will be finished and it will be approved in as soon as 3 years.
Maybe this is the patch I need. I don't know. We don't even know what is going on with me (although my tumor markers are up, there is no discernable sign of disease).
I remember about a year after finishing my treatment the second time around, and being on a ACS call in show with a question for a recognized oncologist. I asked if there was anything for those of us who went through treatment for stage IV but didn't know if it were successful or not. She laughed at me and said "So, you're looking for the silver bullet."
Well, duh. Of course I'm looking for a silver bullet. I also talked to a drug company and asked if there were any trials for people who were stage IV but had completed treatment. They said no, and that probably there would never be as they don't like to look at people who had gone through two treatments...because "success" may have been achieved with one of the earlier treatments.
I know that I can't get my hopes up, but for 11 years there has been very little progress in anything which might be able to help, I'm crossing my fingers that this might be the one.

Sunday, June 21, 2009

Scary week

Last week I had a really scary time. My teenage daughter came to me with a hard, swollen, very angry breast. There was no sign of an insect bite and I had never had such a thing at her age.
She said that it had been that way for several days. I tried to appear calm, while inside my head was spinning with thoughts of inflammatory breast disease. We decided to wait for a few days to make sure it was a full week.
Meanwhile, I got on line and started looking. Inflammatory breast disease can attack teenagers. Since I was so young when I had cancer (diagnosis at age 34, lump found in self exam six months earlier...), I felt that it could be a possibility, although I kept on telling myself it was a remote one.
I also started thinking about having some more testing done on me. I've never had any gene testing done, partly because my insurance wouldn't pay for it, partly because at present it wouldn't change any treatment for me, and finally, there is (or was) no protection that the information, if it were positive for gene abnormalities which could be hereditary that insurance companies couldn't use this against my daughter when she needed to be insured on her own.
As far as the need to know for her sake, well, we already know that she has to be careful. Not only have I had breast cancer, but so has my older sister. I'm hoping that the diet of food she has eaten will help, and certainly she is informed where I wasn't.
In the meantime, I'm hoping that they will make some breakthroughs in diagnosis and treatment. Thankfully, for the present, the problem went away this week...but it is just brought to mind at the most awful moments.

Thursday, June 11, 2009

I am more than Bits and Pieces

Sometimes I get a bit irritated with doctors and having cancer. Sometimes I feel like I am being seen as a bunch of bits and pieces...I am a whole person and it is difficult to remind people of that. Sometimes it seems like the doctors are so concerned with the cancer that they forget who I am and that there are other elements to me.

I suppose that it is only natural. After all, the most pressing issue I have is apparently the cancer one. It annoys me however, that many of the treatments I have had, or that I have done can impact the other areas which are just as pressing.

For instance, my dad had his first heart attack at age 50. He is still alive, but he has had two more. Now, at age 88 he has congestive heart failure. My great-grandmother on my father's side died of a massive heart attack at age 56. My grandfather died of a heart attack at age 68. My mother has IHSS, and her father had heart issues, and it is probable that the angina her mother had was really IHSS as well.

Part of my treatment was to have my ovaries removed at age 38. Of course, since I have had breast cancer, I can't have any kinds of hormone replacement therapies. Yet, estrogen protects the heart. In addition, there is evidence that chemo can negatively impact the heart, not just as a result of CAF. So...where does that leave me?

Looking at patients as a whole person, and indeed, looking at us holistically would be great...but going to a holistic practioner in addition to the regular chorus of doctors I go to now is not in the financial picture. Taking yoga lessons isn't in the financial picture either and neither is Wii fit ....So, I'll have to get some Yoga DVDs and work on this as I can.

Thursday, June 4, 2009

Radiation damage appears years later....

I've mentioned in earlier posts that I have been having terrific pain in my the same point where I had radiation in 1998 for the bone metastases. Needless to say, I've been a tad worried.

I had a PET scan in late November, 2008, which didn't show anything new. Over the winter, I haven't been as active as I usually am....instead, I've been sitting in a chair uploading books on Amazon....couch potato city.

The pain didn't seem to be any worse at one point of the day than at others....I was struggling to try to figure out if it were in the bone or in the muscle. When I ran my fingers deep along the area, I could feel the striations from the damage caused by the radiation 10 years ago.

I spoke with my oncologist about it and he didn't seem to think it was a problem. At that point, it wasn't a constant. Then it got worse. I went to my regular doctor (my primary care physician), and he recommended therapy and doing stretching exercises. There was no way I was going to do therapy again as I had done physical therapy for it soon after I had the radiation, and frankly, I couldn't afford the time or the money as we have had several large ticket unexpected expenses.

I went back to my oncologist a couple of weeks ago and told him that I was having this pain almost constantly. I did notice that it got better with heavy lifting and hard work which I have begun to do again with my working in the garden.

He explained that this was probably the radiation as it sounded very much like muscle issue and that because the PET scan came back with no change, he wasn't worried. I was completely flummoxed and asked him how that could be. The radiation was 10 years ago. Why would it show up now?

He answered that radiation damage is a very odd thing. He's had Colon cancer patients have flare ups years after having had the radiation treatment. It would then go away and periodically show up again.

That made me feel a lot better. Sometimes you wonder why the whole thing isn't explained when you first raise the question. The best idea is to question until you get an answer you can live with I guess.