Today was my appt. with the medical oncologist at Fox Chase. A. went with me, which was helpful not only for emotional support but also for helping me remember everything that was said. In a nutshell the med onc thinks that the radiation is enough for now. He feels that we should wait for “if and when” the cancer returns before doing any chemotherapy or hormonal therapy. His reasoning is that now (meaning after my radiation is finished) there is no measurable disease and there is no way to know that doing chemo will do any good. Weighing the toxicity of chemo and also keeping in mind that if we do it now and the cancer comes back anyway I will have a lot less options, not only with what chemos I could have, but also it might prevent me from participating in a future clinical trial (currently there are no clinical trials going on that would be appropriate for me). Since chemo works on dividing cells and we don’t know if I have any (he says even if there are cells they could very well be dormant currently and chemo would be useless on those) he doesn’t feel there is any justification for doing it. Same for hormonal therapy, except that it is a less toxic approach then chemo. If I felt really strongly that I “had” to do something or I would go crazy then he said he would be fine with me doing hormonal therapy. But he didn’t really see a benefit otherwise to doing it now. He felt that I didn’t need to continue seeing him at this point, seeing my gyn onc was enough, but if I need him in the future to call him. He also gave me a pamphlet for the Fox Chase Family Risk Assessment program for breast and ovarian cancer (since my sister died from breast cancer).
Honestly, I was relieved. He basically said what I had hoped he would say. I really didn’t want to do chemo and I had mixed feelings about the hormonal therapy. It does leave me with uncertainty of course, but as I said to A. when we left, so I’ll finish the radiation and then we’ll get on with our lives and just keep watching. I did ask the dr. point blank about the “if and when” comment, I said that all I had read was very negative about recurrent endo cancer. He said that the odds were that it would come back, but it wasn’t 100%, so you just don’t know. The fact that it is an isolated recurrence and not anywhere else is a good thing though.
Now it leaves me with what to do about drs. I’m feeling kind of torn at this point. On the one hand, I can just stay where I am, the medical care is good (even if one of my drs. lacks any people skills) and it’s easier than trying to change drs. while in treatment or even right afterwards. While my gyn onc needs a personality transplant, his nurse is really wonderful and in some ways at least in terms of the personality thing that can be more important since she’s the one I really deal with most of the time (things like getting test results fast and questions answered quickly). I’ve dealt with difficult nurses before and believe me, the dr. can be the nicest dr. in the world but if you don’t get along with the nurse, forget about it! The thing is my gyn onc wasn’t always this way, he’s never been Mr. Personality, but he was much better than this. In talking to the med onc (who used to work with him when my gyn onc was at Fox Chase and now they deal with each others patients a lot, he was the med onc that my gyn onc called when I was diagnosed) he kind of confirmed that my gyn onc isn’t very happy right now. So who knows, he might leave and a new dr. take over, or maybe he’d get a partner again. Gyn onc’s (and med onc’s) around here play musical chairs a lot. I’m also going to think about whether to go back to my med onc at my current hospital again too (technically I am due for an appt. this month, but I had never scheduled the appt. since their calendar wasn’t ready and I forgot about it). He is really easy to deal with and I can work with him too (plus I want to hear his opinion on what he would want to do or not do). So lots to think about, but I don’t have to make any decisions right now.
Sigh, I’d really rather ignore all of this and see no doctors at all thank you very much, but guess that’s not in the cards for me, especially if I’d like to stay alive. The whole hospital/medical/drs. thing can be depressing. While everyone at Fox Chase was very nice, very friendly, etc. I still found it kind of depressing being there. Maybe it was the fact that every patient in there had cancer. It really struck me for some reason. Or maybe it’s because I’m tired, especially in the afternoon, and sitting around a cancer hospital waiting was not where I wanted to be (I’d rather have been curled up on my living room couch with a blanket). Oddly, I have not found the radiation dept. at my hospital too depressing though. I breeze in and out of there feeling fine, have met some very nice people, although my heart does break for what some of them have to go through. The lady who is on my machine before me gets radiation to the throat (she also has a trach) and she is almost done but her skin is totally breaking down and it’s pretty awful. The techs were hoping the dr. would let her stop, but suspected the drs. would insist she finish the last few treatments.
So 8 rads done, 23 to go! I spoke to a fellow rad patient as we walked through the building on the way out after treatment today, a very sweet Asian woman who was maybe around my age (or younger, I have such a hard time judging people’s ages anymore). She spoke pretty good English and told me that she has cervical cancer and has to have 40 external rad treatments (and also internal rad, like I had a couple years ago). 31 didn’t seem so bad all of a sudden! When I explained to her that I had had similar treatment initially (only 25 external) but now was dealing with a recurrence she rubbed my back and told me that it was going to be all right. Very sweet! She’s farther along than I, but since she has more treatments than I do I’ll probably see her for at least a couple more weeks. There’s another young woman I talked to yesterday (breast cancer, it runs in her family) who has a 9 and a 12 year old, who wears her bald head proudly, taking off her winter hat as soon as she gets there. I always admire women who can do that (there’s another woman there, older than I, who also does the same thing), I could do it at home and in front of family and close friends, but not in public. I needed a bit more hair to feel comfortable without a hat or wig. Anyway, it’s interesting all the people you meet in the rad waiting room 🙂
Okay, enough, the recliner chair awaits!
I think this is good news. You don’t need to become a Superfund site again…at least for a while.
I’m glad you’re making friends in the waiting room. I never saw the same person twice in mine for some reason.
Hang in there, and think negative 😉
Barbara in Maryland, with cat Z. and daughter S.
LOL about the Superfund site, that is so true!! Kind of reminds me of the recent Gray’s Anatomy episode where the woman’s blood is toxic from cancer treatments and sickens everyone who comes in contact with her. Yikes!! (apparently it was based on a true story, but thankfully it’s not a common problem).
So glad to hear from you! Hug the girl and the kitty (and you too)!