Monday, September 4, 2000
Basic Information On Tamoxifen - this is the hormonal therapy that I will be doing for the next 5 years to decrease the chance of recurrence of breast cancer.
posted by Karen Weber Monday, September 4, 2000
Tuesday, September 5, 2000
Well, I've reached the point where I am sick and tired of being sick and tired. We had a nice weekend with my folks, although we didn't do much of anything. And on the way home, we stopped and signed the papers for the pool because they were throwing in a free heater this weekend. So I should be feeling pretty happy. And I guess I am if I get past being so tired and dizzy.How are the hot flashes, you might ask. Well, the Paxil and the bellergal had really been controlling them pretty well. I started the tamoxifen Friday night, and one of its major side effects is hot flashes. So far, it seems to be good for one really good hot flash a day. Other than that one, I haven't noticed any difference in number or intensity of the flashes. If that holds up, I'll feel pretty lucky.
posted by Karen Weber Tuesday, September 5, 2000
Wednesday, September 6, 2000
I talked briefly to the radiation oncologist today. He's the one we met with back in March when we were trying to decide mastectomy vs. breast conservation surgery. I explained to him that, as much as we liked him, it was much closer to go to their east Valley office. So he gave me that number. I called them and they seemed to have some problem about scheduling me. They finally said they would call me back, but it's past 5 pm and they still haven't. I'm trying to schedule them for the same afternoon as my follow-up with my GP so that Rick doesn't have to take too much time off work escorting me around.I got a real pick-me-up in yesterday's mail, but I didn't realize it until today. I mentioned the great song I heard on my soap opera last week -- well, I went to the artist's website intending to buy the CD with the copy of the song. Looked around and couldn't figure out which of their CDs it was on, so I sent email asking. I also told them how much I had enjoyed it on the soap and why I wanted a copy. Well, the artist sent me his very own copy of the single. It is wonderful! I'll scan in the picture and note he sent me, but in the meantime, his name is Wally Kurth. He plays Ned Ashton on General Hospital, and his band's name is Kurth and Taylor. You can visit them on the web at KurthandTaylor.com. Here are the lyrics that caught my ear:
No, no, no, no, I won't surrender!
I won't go down without a fight!
Just say my name and remember,
I beat the odds by looking trouble in the eye.The song's got a great, driving beat to it. Just makes you want to get up and get fighting!
Celecoxib may be active against breast tumors
posted by Karen Weber Wednesday, September 6, 2000
Thursday, September 7, 2000
FDA approves Applied Imaging's device for detecting cancer cells - this device will detect micrometastases that can't be seen by other means.The radiation oncologist's office finally called me back -- this morning before I was out of bed. They scheduled a mammogram for today and a simulation with the radiation oncologist for tomorrow. The gal doing the scheduling never let me get 2 words in yesterday. I tried to tell her that I can't drive because of the inner ear infection and we needed to schedule around Rick, but she wouldn't let. I also tried to tell her that I didn't know if I could handle a mammogram right now, but she wouldn't let. I also tried to tell her I wasn't ready for a sim, that I wanted to sit down with the doc and talk first, but she wouldn't let me. In retrospect, I should have called back this morning and rescheduled them for a couple weeks from now, which is when my medical oncologist said to do them in the first place. But I let the mammo appointment stand and I changed the appointment with the radiation oncologist from a sim to a consult and pushed it back to late afternoon so that Rick can take me to see the GP and then straight over there instead of making 2 trips.
The mammogram was a disaster. The doctor's office didn't send the order (or they sent it and the mammogram office lost it) so that delayed things. Then they didn't give me the right paperwork to fill out. Then they left me in a dressing room for 20 minutes with only a tiny bench and no way to recline. By the time the tech came to get me, the room was spinning around and I was in a cold sweat. She gets me to the mammo room and gets me some cold towels. The nurse comes in and tries to take my vitals. They end up lying me down so that they can get my blood pressure up to measurable levels. Finally, they decide to try the mammo. We get the first 2 views shot just fine, but the tech was having trouble getting me positioned correctly for the third one. She's moving my shoulder and head around -- just as she gets me positioned exactly right, the room starts spinning, I black out and I'm back on the floor with the cold towels, but this time I'm topless. The tech decides to take the downtime to process the first two films, but my paperwork is lost. After looking around, she finds it behind a bookcase, which has to be moved to get it out. Finally, we get the 3rd film shot. I ask if I can get the results before leaving. The tech explains to me that the Director of Breast Imaging at their center is a breast cancer survivor and they always provide the results to breast cancer survivors immediately. At which point, the radiologist comes in and explains that he can't give me the results immediately because he has to compare it to the old films, which of course they didn't get out of their off-site storage facility because the doctor never sent the order. For the final embarrassment, they refuse to let me walk out of the facility because my blood pressure is too low and I'm still very dizzy. So I'm wheeled out in a wheelchair. Sigh.
I am dreading the visit with the radiation oncologist. I have a fear, almost primal, of doing the radiation. Not the actual process of doing the radiation, but the damage it will cause to the heart. I realized last night that I have some suppressed anger about this. When we first saw the surgeon, he recommended breast conservation surgery. But because I'm large breasted, he sent me to consult with the radiation oncologist to make sure I was a candidate for radiation therapy, which can be problematic on large breasts. The radiation oncologist said he could work with me if necessary, but he highly recommended a mastectomy because he thought the tumor looked multifocal on the mammogram. He never gave us any other information about the difficulty of getting even coverage on large breasts or about the cardiac dangers. Nevertheless, we left there and decided on doing a mastectomy. Then when we got back to the surgeon, he totally pooh-poohed the multifocal concerns and really pushed the breast conservation surgeon. He never mentioned the difficulties of radiation on the left or the cardiac problems either. If someone, anyone, would have told us, I would have had the mastectomy so that I wouldn't have to do radiation. I'm angry that no one told me at a time when we were too overwhelmed to figure it out ourselves. I'm angry that I allowed the decision to be rushed, that I allowed the question of canceling our vacation to enter into the decision, that I didn't get a second opinion like I wanted to, etc., etc. I love my surgeon, but I don't think I really gave informed consent on the surgery because no one told me about the cardiac problems with radiation and I'm angry about that. The more I think about it, the angrier I get, mostly at myself because I should have known better. And then I'm angry about that because we were still shell-shocked from the diagnosis and we should have been able to trust the doctors to give us all the information we needed to make the decision and why should I feel guilty for this. I was awake in the middle of the night last night, thinking that I'd rather have bilateral mastectomy right now than go through the radiation and spend the rest of my life wondering if I'm going to die young from a heart attack. It seems extreme, I know. That's how deep this fear goes. I'm not under any illusion that life is fair, but it just seems wrong that a treatment meant to save your life from cancer has so much potential to kill you by heart attack.
I hope that the radiation oncologist will be able to set some of my fears to rest tomorrow. I hear that this facility has the latest equipment. The doctor I'm scheduled to see is female, so I hope she'll be more communicative than my medical oncologist. Most of all, I hope that I can get through this without an attack of vertigo and without crying. As miserable as I feel with this constant dizziness, I don't think we can count on either thing happening.
posted by Karen Weber Thursday, September 7, 2000
Friday, September 8, 2000
We had a very nice visit with the GP and radiation oncologist today. It is too late right now to write much about it. The big surprise today had to do with test results from May. I had asked my medical oncologist several times to show me the results of my MUGA scan, and he kept refusing. He said they were normal and that's all I needed to know. The MUGA scan measures cardiac function, and since the cardiac issue is my big hang up about radiation, I felt an urgency to see them. So I have to admit, I played a dirty trick, although the records are mine and I shouldn't have had to resort to tricks to get them. I knew he wasn't going to be in the office today and neither would the nurse. I called up one of the back office workers and asked her to fax it to me along with the log of my blood test results. She said sure and minutes later, I had them in hand. The MUGA scan is not normal. Neither my GP or the radiation oncologist could interpret it for me, however, so I am still in the dark about exactly what it means. This was done before I started chemotherapy with cardiotoxic drugs. Suffice it to say, I am uncomfortable making any further decisions without finding someone willing to sit down and explain this to me. And I'd also like a follow up test post-chemo to determine if there has been any change. This was the final straw in dealing with my current medical oncologist. I asked the radiation oncologist for a recommendation and she provided me with several names. I'm not scheduled to return to see the medical oncologist until November, so that gives me plenty of time to talk to some others and find one that I feel I can trust and work with more synergistically. I will write more about our meeting with the radiation oncologist tomorrow.
posted by Karen Weber Friday, September 8, 2000
Saturday, September 9, 2000
The radiation oncologist we met with was a very young woman. She was very patient with me. She allowed me to tell her about the fear I have about cardiac irradiation. She allowed me to tell her how angry I was no one had mentioned this when we were trying to decide on surgery. She did not judge me or make me feel badly for my feelings. She went patiently over my 5 pages of questions and all the research. She feels that, unless my heart is in an unusual place, she can use tangential radiation so that none of the heart is in the portal. They will do a fluoroscopy during the simulation to make sure the heart is where it is supposed to be. There will be some scatter radiation to the heart. She said this can't be avoided, but it shouldn't be enough to cause much damage. Which brings us to the results on the MUGA scan. I sent an email to the guide on cardiology at About.com because I was concerned about what I was finding when researching the terminology on my MUGA scan results. The guide is Richard N. Fogoros, M.D., a former professor of medicine, and a longtime practitioner, researcher and author in the fields of cardiology and cardiac electrophysiology, according to his bio. I didn't want him to give me a medical opinion, just to tell me if I'm overreacting to ask for a follow-up test and consult with a cardiologist before continuing with treatment. He sent me a very kind email, with the bottom line being that I'm not overreacting to request a follow-up and complete explanation. My GP indicated that he was willing to refer me to a cardiologist if the radiation oncologist couldn't answer my questions. Since she couldn't, I'll be calling him Monday morning to request that referral. I also meet with my surgeon on Monday. He's the one who referred me to the medical oncologist, and he is going to get an earful from me about that guy.
posted by Karen Weber Saturday, September 9, 2000