The Assertive Cancer Patient

More on Cancer Treatment in the UK

I'm always interested to hear about cancer treatment in the UK because they have a national health service--something I so wish the United States would put in place. And also because most of what I hear from my UK readers is positive.

A woman who is getting treatment for breast cancer in the UK e-mailed me yesterday. This is what she had to say: "People here moan and moan about the NHS yet personally I've had good treatment, free at the point of contact."

But she went on to say that there were pretty long wait times to get radiation therapy--something I haven't experienced in the U.S.

Of course, we DO have people being denied treatment because they don't have health insurance. I'll be putting up a post on this shortly.

However, one serious issue here is the lack of capacity for radiotherapy. (Insufficient radiographers. Historical lack of capital expenditure: strategists believed radiotherapy would be outmoded by drug therapies. Government cancer treatment targets mean that when radiotherapy is the primary treatment in a slow-growing cancer like prostate, it still takes priority over a cancer like breast which has already had primary treatment, i.e. surgery.)

It's not untypical to wait thirteen weeks post-surgery for radiation treatment to start. The increased prospects of local recurrances are obviously worrying for patients who aren't being treated with chemotherapy in the interim.

I've asked her to ask her doctor if the long wait times might affect the outcome of her treatment, and I'll post her answer when it comes. I'll also ask my own radiation oncologist--I owe him an e-mail anyway.

Interesting to hear that prostate cancer patients get priority over breast cancer patients at the radiation machines! That would probably start a riot here.

@ Jeanne Sather 2008.

Radiation: One Problem I Forgot to Mention

One question I brought up with Dr. Lee yesterday that I forgot to write about: since my latest round of radiation therapy, my body temperature has been LOW, between 96 and 97, and I've been having chills.

When I first mentioned this to Dr. Lee on the phone a week ago, he was more worried about my running a fever as the result of getting an infection in the wake of the latest round of radiation--possibly one I wouldn't be able to shake off.

So he told me to take my temperature every day, and to call him if it went up.

I sent Younger Son to the drugstore to buy me a new thermometer, because I thought mine might be broken, it was reading so low.

But no, between 96 and 97, always (98.6 is normal). It was 96 when I saw Dr. Lee on Friday, and at first the nurse kind of shrugged it off, telling me that her own temperature was often low. But this was new for me, and it didn't feel right, so I persisted.

New information: Dr. Lee said something that I had never even considered, and that my radiation oncologist had never mentioned as a possible side effect: my thyroid may have gotten "scatter" radiation exposure during this latest series of treatments.

Oh, boy. So he had my blood drawn for a thyroid test. Call in five days for results.

I do not yet know what this means. I don't know if the thyroid can repair itself, if it is indeed damaged, or if this is yet another thing that I will have to live with.

To be fair to my radiation oncologist, Dr. Eulau, I don't expect my doctors to mention every possible side effect before they treat me. I do understand that these treatments come with side effects and after effects, sometimes very serious ones.

I will e-mail Dr. Eulau about this, though, although I believe he is on vacation.

This brings up another topic that I will be blogging about in the new year:

A new oncology specialty. We need specialists in the care of cancer patients and former cancer patients who are knowledgeable about the side effects and after effects of cancer treatment.

I'm hearing this more and more from the people who read my blog, because many of us have been in cancer treatment for a long time, and we have odd side effects that no one seems to know much about, or, sadly, to take seriously, in some cases. And that rankles, of course.

If you know of a doctor or cancer center that is doing work in this area, please write and let me know. Thanks.

@ Jeanne Sather 2007.