Wednesday, November 10, 2010

Decisions, Decisions

The trip to Dana Farber did not make any of this easier. Instead of down-to-earth, plain-spoken doctors confirming the course of actions prescribed by my local docs, I was presented with yet another option: a clinical trial involving an experimental drug not yet approved for early-stage breast cancer, a drug that is actually probably about to have it's FDA license revoked for use in late-stage breast cancer. It's an expensive, politically controversial drug at the forefront of emerging science, a new way to attack cancer by compromising it's blood supply. Doctors and scientists are very excited about it. This drug, Avastin, seems to be adding to the lifespan for folks suffering a variety of other cancers.

If I do this trial, I'll have chemo before surgery, basically the same exact chemo I would have had closer to home, plus Avastin. Apparently there is no statistical difference between surgery first or chemo first in terms of how long I might live. Though this isn't true for everyone, I'll lose my breast either way.

The Dana Farber docs confirmed that the course of action prescribed by my local docs was perfectly good.

I spoke to my Dr. Z (my local surgeon) and Dr. R (my local oncologist), and they say they wouldn't discourage me from doing the clinical trial.

Here's the thing: it's a risk. There are a lot of unknowns.

But I'm already at risk. "High risk" says Dr. R.

Dr. Z says "No pressure. You can cancel surgery Monday morning, five minutes before we start. It's fine."

I need a month to think this over. But a month to think it over is a month where cancer has the reins. Not an option. So instead, I will decide in four days.

Of course, this all assumes that the PET scan I'm getting Friday doesn't raise red flags about metastatic disease (cancer spread in other regions of my body). If that's the case, everything changes again.

9 comments:

Shannon said...

Wow. Big decisions.

As someone who has worked for the pharmaceutical industry for many years, I have to ask why this drug so controversial and in danger of being recalled from clinical trials? Was there any opportunity to review at a high-level a summary of the patient data? If it was described as "controversial", I'm concerned what the side-effects have been thus far. It would be be useful for your difficult decision process. And coming from Boston, I also know how respected Dana Farber is, also.

Big, sucky decisions.

I hate it for you that these are now the kinds of things you need to think about. It's completely shitty. You must be exhausted.

I hope you find peace in your own contemplation and in your discussions with loved ones about your path forward (in the next 4 days). No doubt your strength will humble everyone around you.

Keep updating, we're reading and thinking about you.

Sam said...

Just wanted to offer support, let you know I'm reading every word even if I don't comment on each post. Make the decision that feels right to you.

Tash said...

I can't say "go for it" because I don't have all of the information ever published on it. However I know there has been a big hoo-ha over here about Avastin (our "National Institute for Clinical Excellence" NICE has deemed it not financially viable to continue its use) and I know they say it's a pretty amazing drug.

If I was in your shoes and I had any inkling that I might want to try it, I'd go for it. I'm not saying you should (I'm skeptical about many things), but I would. I would hate to ever wonder whether it could've made a difference. If you're not happy with it for whatever reason, then don't do it and don't wonder. You don't need the stress right now. That probably sounds obvious, but when you've made this decision, forget about it forever.

From the little bit of searching I've done on the 'net, it seems that it doesn't have many side effects: a few of them are stomach problems and not healing after surgery (because of the effects it has on the blood vessels) and possibly contra-indicated in those with coronary heart disease (for the same reason).

I would be asking specifically whether it is more effective on certain 1)kinds of cancer (lung vs breast etc) and 2) the effect on the exact type of breast cancer you have (you mentioned it was a hormone-sensitive variant), whether genetic variance had any bearing on it etc.

Other than that, just HUGE hugs for you because you don't deserve this and I'm sorry you have to make decisions like these. I know you're a very pragmatic person and I'm positive that you'll make the right decision for you.

gycif said...

Amy:

Somehow I believe you're going to come up with the right decision. You've done a lot of research and awaiting more news. We're All behind you.

with Love

Old Wood Workshop, LLC said...

I saw my friend Judi, breast cancer survivor, on Tues morning. She told me that for her fear of the unknown was the worst thing. Once everything is in the open: how bad it is, the full extent of the cancer... it was easier. That, of course, was for her.
I don't think she needed to make a choice about her own treatment. It sounds like that is your great challenge. I haven't known you that long, Amy, but you have an extraordinary sense of self. A healthy, smart, vivacious sense of self. I think you just have to listen to that & trust you will make the right decision. You will.

Old Wood Workshop, LLC said...

hey amy, just realized my google acct is under my husband's biz (old wood workshop), for which I write an occasional blog. so if you're wondering... it's me, Cris :-)

Melissa Garvey said...

Hi, Amy. I recommend looking into the National Breast Cancer Coalition. They have a guide to quality breast cancer care here: http://www.knowbreastcancer.org/resources/quality-care-guide/. They also encourage women to ask their physicians how quickly they really have to move. Perhaps you could take a couple weeks instead of a couple days? It's worth asking to see what the doc thinks just to be sure it's not an option.

Anonymous said...

You have likely seen this url: http://blogs.forbes.com/robertlangreth/2010/09/17/why-the-avastin-breast-cancer-controversy-roches-own-news-release-tells-you/

But there are pros/cons if read the article and also click on the links on that page. The research doesn't show that Avastin helps. The counter-argument would be that statistically it may not help but if you're the one person it does, then it should remain approved and you should be able to have access to it.

It would be more helpful if your oncologist and/or surgeon would make some strong suggestions one way or the other vs. leaving it up to you. I get giving the patient options but come *on.* I would ask my doctor, "If this were your wife/sister/daughter, what would you recommend?"

I am so sorry you are going through this. I am sure part of you is staying focused and strong. Another part must be wanting to curl up in a ball and be nurtured and held.

We are thinking of you in cyberspace--keep posting--we are here.

Paula said...

I'm sorry that you have so much to consider in such a short time. It sounds like you have doubts about the clinical trial and perhaps you should go with your gut.

Would it also mean a longer trip for you for chemo treatments? Would J- have enough time to always accompany you. These are practical thoughts, too. Exhaustion and travel are factors.

I have a friend who had surgery, then chemo and radiation for a similar breast cancer and is doing very well 2 years on and is back to all the athletic things she does.

Two members of my family did clinical trials for different gastrointestinal/pancreatic cancers. Something to ask about: Chemo treatments can be interrupted because of low blood cell counts and for other reasons, so is it better to have the surgery first and remove as much of the cancer as possible in case you encounter these stumbling blocks during chemo?

Just my uneducated opinion as a loved one of those with cancer.

I know you are clear-headed and will decide what is best for you. My thoughts and prayers are with you.

An uncle of mine who had terminal cancer was part of a clinical trial a number of years ago to test dosage and the use of a pump to deliver chemo. Early stage trials testing dosage can be especially dangerous, but he knew he did not have long in any case and he contributed to science, which was remarkable.