Ellen update 08/27/06

Hi there!

A few details of how things are going around here. Surgery on Friday the 18th was quicker and easier, and I felt pretty good even Friday evening. Fewer painkillers, more energy, pretty much all better by Wednesday. The surgical margins this time were clean–so no need for more surgery. That was good. (We heard that was probably the case on Friday, but we only heard last Wednesday that the lab had confirmed it.) It was really great to not feel so injured this time around, so that has been kind of cheerful.

Last week’s visit with the oncologist began with the good news that the bone scan and CT scan I’d had 10 days earlier were fine–no sign of any cancer anywhere outside the breast. So that was also very good news that we were pretty sure we’d be hearing. The oncologist is energetic and straightforward and it is reassuring to have visits with him.

More lab results for the medically minded: the tumor was estrogen- and progesterone-receptor negative (as we had guessed) and HER2-negative (HER2 is a protein overexpressed by 25% of breast cancer tumors). Being positive for hormone receptors would have been better, but being negative for HER2 is good (HER2-positive tumors are more aggressive though they can be treated well with a drug called Herceptin, which is why they do the test at all).

So now, next comes chemo. I would feel less unsettled about this whole thing if my chemo schedule were decided by now, but it’s not. The oncologist is consulting with other breast-cancer specialists on the best chemotherapy choice for me. He is happy for us to get a second opinion, if we want, and suggested either Dana-Farber in Boston or Sloan-Kettering in NYC. I’m trying some people at both, but it turns out that the oncologist is the one who has to try to get me in to see the top guys–they don’t take walk-ins, only referrals. At least I am kind of an interesting case. So we’ll see if that works out in a reasonable timeframe (next 2 weeks or so). Chemo would start after that, if I decide to wait that long to get a second opinion. If not, it would start sooner–early September. I am not looking forward to that at all, mostly the baldness part, because it attracts so much attention and marks you as a Very Ill Person. If chemo makes me kinda sick for a couple of days each time (as it did in 1995) I will deal…I would just like to get started so I can get it over with.

And of course after that will be radiation (33 2-minute treatments over 7 weeks).

I am doing the genetic testing for the BRCA1 and BRCA2 gene mutations on September 22. Whether or not I have this mutation (which is the cause of 5% of breast cancers) won’t change my current treatment, nor will it tell the oncologist anything useful about the type of tumor. It will show a _reason_ of sorts for me getting breast cancer, if I have it (which I don’t think I do). It also greatly increases one’s risk of ovarian cancer, which is harder to catch and treat than breast cancer, and thus more dangerous–so there would be some decisions to be made about that. More later on this…I don’t want to be bored at my 90-minute genetic testing appointment, so I’m not doing any learning ahead of time!

It still isn’t clear how much of my “regular life” and regular work and commitments will have to go by the wayside this fall. I want to do my regular things because that makes life less weird and scary. But it’s also true that I have less time and energy for “regular” things and I am tentatively putting some projects aside so that I can read some fun books and some useful books and see more friends, as well as do all the other stuff like research cancer details online, read up on herbal remedies, go see a massage therapist, and visit a practitioner of Traditional Chinese Medicine for chemo support and cancer prevention strategies.

That’s the news…