Quick update

Val has made contact w/ the patient rep at CancerCare. A meeting will be arranged with both docs...at least that is the plan. We'll keep you posted as things progress. Just wanted to share this news of the steps made to date.

I had an excellent visit with Anne and Colin in Edmonton, where the weather was cool but the snowbanks were far less significant than they are here in Winnipeg. It continues to be more winter than spring. Sigh. Colin is settling in well at home, and Anne is running things like clockwork. Homecare is good morning and evening. Friends continue to help out. So far, so good.

Over and out for the moment.

A Blog Post by Val: Between a Rock and a Hard Place

If I have not clearly indicated the difficulties and uncertainties surrounding cancer treatment decisions in past posts, then let me make them as clear as possible now. If I have not made it clear in past posts that uncertainty is feared and hated by humans and “dogs” our existence, then let me be clear about that now. Unfortunately, the broader existential dilemma of uncertainty, disease and dying facing us all is largely hidden to us until we encounter something like a cancer treatment decision that unmasks the dilemma.

In my previous posts, I have discussed, at least to some extent, how far we have come in cancer treatment, but I’ve tried to do this without losing sight of how far we still have to go. And we have a long way to go. As my oncologist said last week, “We don’t have a crystal ball.”  As I wrote in my post last week, a team of cancer professionals struggled to stage my tumor, and there was dissention in the ranks.

Yesterday, I saw the “dissenter”, Dr. Cooke, my radiation oncologist. After several months, two CT scans of my chest and a “conference” of oncologists, radiation is recommended. But, here is the thing: Dr. Cooke strove to make it very clear to me that I will only have “modest gains” from the radiation. When I asked if he would rank those gains on a scale of 1 to 10, he said 3. He also repeated to me three times, that my most serious risk was that of distant occurrence (lungs, liver, bones) and he stated unequivocally, “Radiation will NOT reduce that risk.” Dr. Cooke is a strong believer in “informed consent”.

In a review of radiation side effects, we discussed lymphedema. I have a 7-10% chance of it occurring. How do I compare these two sets of probabilities: my risk of lymphedema with my chance of modest gains with radiation? How does this help me make a rational, realistic decision, i.e., to give informed consent? Dr. Cooke freely admits that statistics are fine but they don’t indicate to WHOM they will apply. If, the “modest gains” were, say 7 in 10, well, that might be a slightly different story.

There are two difficult issues for me. One is the risk of lymphedema, a risk I will come back to later. The other issue is the recommendation to discontinue Herceptin after one year. Herceptin is the treatment that has the best chance to reduce my chances of a distant occurrence. So, I’m offered (local) radiation, which will not decrease this risk, and I will be taken off Herceptin, the drug designed to decrease this risk. These recommendations are based on the staging of my tumor which, to be fair to all the docs, has been difficult. Clearly Cooke does not agree with how my tumor has been staged. Dr. Cooke says I should take this issue up with Dr. Brandes. Oh, so I am to go back and forth between these two medical professionals and, in the end, figure it out myself?

Lymphedema is not particularly pleasant and I have seen many cases of it in people who have attended my yoga classes for cancer patients over the years. It is often mild but I have seen many more extreme cases. It isn’t curable and Cooke admitted that they don’t know very much about it. He mentioned what he called a “fairly reasonable study” on the effects of exercise for lymphedema and said that the study concluded that exercise had no effect one way or the other. He said that he did not think exercise had any positive or negative effects. He called another study that examined the effects of flying on lymphedema “crap”. He said that only one study on this issue has ever been conducted, it was a lousy study and, yet, lymphedema patients are cautioned about flying because of the increased risks supposedly identified in it. Hmmm… I’ll say one thing about Dr. Cooke, he is very straightforward and honest.

Did I mention that I’m left handed and that my tumor was on the left side? That is where the lymphedema would be. Are there any yoga teachers reading this who have anything to offer about practice and lymphedema?

So here I am: Having to give “informed consent” on a crucial health issue when those asking me to make the “informed consent” admit to not really knowing or having “crystal balls”. On the one hand, I think it is terribly unfair, and on the other hand, I think it is the only way the decision can be made. But, in my experience, the doctors could be more helpful. For example, I don’t understand why they, Brandes and Cooke, can’t meet with me together. Perhaps they can. Perhaps I can request such a meeting. Perhaps it is time to call on a CancerCare Patient Advocate.

In the meantime, I’m between a rock and a hard place, squarely facing the uncertainty of the results of my decisions and their impact on the quality and length of my life. 

A comment from Katy (by Amanda)

Tomorrow (Tuesday) Val will meet with Dr. Cook. Tonight, I just want to play a bit with my post on the blog. So, I am going to "leverage" and "repurpose" my sister Katy's comment, which she made in response to Val's last post about the radiation news. This leveraging is, after all, in the best of the new traditions of journalism, wherein the editors take readers' writing and fill the newspaper and website with it. No payment required. Space filled. It's all good. Well. Not really. But, certainly Katy's comment is worth reading and I have no faith that  (m)any of you go back to read the comments on past posts. I think she sums up rather well how we are both feeling about the radiation treatment that has been recommended. So. Here's Katy's comment, including photo to provide a visual reference for you: 

Blancmange

"Hmm. My reaction to your latest news is to try to find a photo of blancmange ... In English novels (as I remember them) it's a dessert presented at sick people's bedsides--or eaten in boarding schools with indifferent cooks. Please imagine a slightly unappetizing white wobbly thing on a plate instead of all these words. Unsatisfactory, supposedly good for you, vaguely disgusting, extraneous to the enjoyment of life, but you have to say Thank You for it anyway. Stage III is good, but let's decree a few more Special Celebration Dates so you can both have Amanda B'day Weeks several times a year to relieve the strain of good news. I open bids with: April 25 (1940 women got the vote in Quebec); October 24 (2005 Rosa Parks died). I WAS going to suggest the date of Morgentaler's victory but January 28 is too close to February 6. And of course I've already forgotten when Val's birthday is." [September 7]

I am off to Edmonton on Wednesday for a short week's visit with my parents. It will be good to see them. 

When I've not been shoveling snow, I've been fantasizing
about spending summer days in the gazebo at the cottage... 

...and enjoying warm sunshine on the deck that overlooks Lake Winnipeg. Oh yes! 

It ain’t over til it’s over…by Val

Yesterday at my visit with Dr. Brandes, the cancer treatment journey took a different turn from what I expected. I knew that the purpose of my meeting with him was to fill me in on the result of the Breast Disease Site Conference to which he brought my particular case for discussion. I knew that one of the issues to be discussed was whether or not it would be reasonable to stop Herceptin treatments after one year. Brandes had also said that Dr. Cook, the radiation oncologist, would have an opportunity to reassess the need for radiation.

The lead up to the Conference, as I understood it, was to recommend on treatment in view of my clear chest CT scans from November and February. In one of my posts, I had expressed surprise, tinged with some dismay, that after the November CT Scan result Brandes had said that I didn’t need radiation. The dismay came from what seemed to me to be such an abrupt shift from his former position, yet without any detail on how such a different decision could be made. I followed up by making an appointment with Dr. Cook and, sure enough, he said that he felt that radiation would give me only side effects, not substantive benefit.

So, I went to my appointment yesterday thinking that the primary topic coming out of the Conference would be the length of time I would be on Herceptin. That was certainly part of it, but the unexpected news was that they also recommended I receive radiation.

Brandes was pretty clear about how and why this recommendation came about. I had not understood the importance of the staging of my disease relative to the treatment protocol. I am quite sure that is because I was never told in a clear, straightforward manner and, also, because I just didn’t know the right questions to ask. This has led to an on-going confusion on my part since my first oncology meeting back in August.

From that initial meeting, to his credit, Brandes said that he did not really know whether I was advanced Stage III or very early Stage IV. Stage III is a local recurrence, while Stage IV is metastasized disease. He said that he thought there was a very good chance of some cancer cells circulating systemically in my body, even though nothing had shown up in my scans or blood work. The result was that he would start out treating me for Stage IV, which meant chemo, Herceptin indefinitely, radiation and anti-estrogens drugs.

But, since my first chest CT scan and blood work in November were so good, the question became could I avoid radiation and keep on only with Herceptin? When my blood work continued to be good and my second chest CT scan in February was clear, the question became should I be treated as Stage III, the protocol for which is a round of radiation, and Herceptin for one year.

The conclusion at the Conference was that I should be treated as a Stage III and, therefore, should receive radiation.

Out of the five radiation oncologists present, only one had a dissenting opinion, even though, ultimately, he said he would go along with the majority. The dissenter was Dr. Cook, my radiation oncologist. I see him next Tuesday at 11am. He is a very good communicator, so I hope my understanding of all this will continue to improve.

For better or for worse, my case illustrates how individual each case of cancer is, how many variables there are, and how treatments, in the end, are still partially based on judgment calls. Informed judgment, yes, but judgment nevertheless.

No, it ain’t over yet, and it won’t be over until it is over.

Monday meeting

Still winter here, though temperatures are beginning to moderate; we now think that minus 15 or so is warm. Sheesh!

Val has a meeting booked with Dr. Brandes on Monday afternoon, March 10. She will learn the results of the consultation between him (he?) and Dr. Cook, the radiologist. So far, she has escaped radiation. We are now on tenterhooks to learn what the latest thinking is about her treatment options.

I am heading to Edmonton in a couple of weeks for a week to visit Anne and Colin. It will be good to see them.

Tonight is my last class for my current night course. In the end, I've really enjoyed the learning - if not the time slot of this course.