Toying With Tamoxifen and New Doctors

I do love the Thorvaldson Building on campus. I loved it when I worked in it and I love it still. Here it is on a sunny autumn day.

I felt kind of crappy today. My upset stomach is back and I think it must be because of the Tamoxifen. To tell you the truth, I gave myself an unauthorized Tamoxifen holiday. My upset stomach was so bothersome and when I talked to my oncologist about it he didn't offer any options. He just wrote it down on my chart and asked me some other questions (suggesting that perhaps it wasn't the Tamoxifen causing the problem), which distracted me and after I left, it occurred to me that we didn't actually discuss my upset stomach and whether or not there was some way to minimize it. So, I stopped taking the Tamoxifen and after a week or so, my stomach felt fine. It felt good to feel better. But, on the other hand, it has made me a little nervous NOT taking the medication that is supposed to improve my chances of NOT having breast cancer return somewhere in my body (not necessarily a breast - could be bones, blood, liver, brain ... *shudder*). I try hard to believe none of that will happen but, on the other hand, I have to balance that with knowing it's possible and doing whatever I have to do to prevent it. It's an "Expect the best but prepare for the worst" kind of attitude. Easier said than done.

So a couple of days ago I started taking Tamoxifen again and last night my stomach was upset all night and off and on all day today. I'm now going to try taking it at a different time to see if that makes a difference. Maybe that's all it will take. A colleague suggested this. It hadn't occurred to me and no doctor has talked to me about when I take it. In fact, my colleague pointed out that on the package it says "take with food". And yes it does say that but my first packages of Tamoxifen didn't and so I hadn't noticed the change in the packaging. All along I've been taking it at night because that is the easiest for me in terms of taking it consistently at the same time every day and, for some reason, I remember it better. If I take it in the morning I sometimes can't remember later if I actually took it or not. I know there are ways I can chart this so that's manageable. But before I start taking it in the morning, which is a less consistent time for me than evenings, I'll try taking it at dinner ... with food.

Last Friday night I had another messy and disturbing indication (blood involved and other stuff I really don't want to talk about and you surely don't want to read about) that something isn't quite right. No pain ... just ickiness. I saw my new doctor (yes, a couple of weeks ago I finally started seeing a new doctor) yesterday and she thinks it really is an indication of diverticulosis (the "itis" part is if there's an infection, the "osis" is when there's no infection but just "messiness"). That was reassuring. But, just to be sure, she's going to book me for some further tests.

Then today I saw a gynecologist as a follow up for the same issue (thanks, Syl, for your initiative) ... just to make sure that when I had that lower left abdominal pain it wasn't anything involving my womanly parts. The gynecologist feels that I'm not presenting for diverticulosis typically and that some additional tests to confirm are necessary. She also did an endometrial biopsy (ouch) while I was there just to make sure all bases are covered. Perhaps all this extra testing is overkill but I think I'll feel better being thorough and certain.

That brings me back to why I finally took the steps to change doctors. If you recall, this doctor ... a very nice man who I genuinely like ... is the one who for almost two years kept telling me that my lump was just a cyst and not to worry about it. He told me this 3 times and only when I asked him about it a 4th time did he send me for the ultrasound that immediately confirmed that it wasn't a cyst at all ... and this despite the several times I had asked my doctor if I shouldn't be getting a mammograms and him telling me to wait until I turned 50 after which I would get a screening letter. Knowing what I know now, I know he was negligent. And I know he felt just horrible about my diagnosis. He said he was shocked. I stuck with him all this time for a couple of reasons. One, because I felt he would bend over backwards for me after that HUGE error in judgment and two, because I didn't have the energy to look for a new doctor ... to start over with someone new ... to find someone I could feel good about who was also taking new patients ... and to try to build a trust relationship with another doctor after such a breach of trust with my previous doctor of 22 years. It takes an energy I haven't had to find the will to build a new doctor/patient relationship. What pushed me to try a new doctor was how disturbed I was when my doctor told me that he was "99% sure that my abdominal pain was diverticulitis". That "99% sure" part just kept playing over and over again in my head and I was scared. He was 100% sure the last time that my lump was a cyst and, as we now know, it wasn't. Is it any wonder I couldn't accept a "99%"? So, as chance would have it, I confided how I was feeling to someone who knew of a very good doctor who had recently moved to the city and was accepting patients. I jumped on the phone immediately and had my first meeting with her a couple of weeks ago. I'm happy to have a woman doctor again and I have a very good feeling about this doctor.

So, I'm being sure and that will, I think, give me peace of mind. But today, between feeling very tired from not sleeping well last night and from having a very upset stomach and some cramping and bleeding from the biopsy, I felt pretty generally crappy. I'm going to skip my Tamoxifen tonight and then start again tomorrow ... at dinner ... with food. Hopefully that will help.