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Endometrial CA Follow-up:  Should I Fire My Doctor? Endometrial CA Follow-up: Should I Fire My Doctor?

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  #1  
Unread 12-20-2000, 11:37 PM
Endometrial CA Follow-up: Should I Fire My Doctor?

I was diagnosed with endometrial CA 5/17/00, which turned out to be Stage IIIc (spread to one pelvic lymph node). Had my first follow-up appt. (since completing radiation) last week. I came armed with a typed list of questions, one for myself, and a copy for the doctor (I'm going to do this all the time now - not only did I get my questions asked, but there is a RECORD in my file of what my concerns were). Anyway, I wanted to get CT-scans done because of some aches and pains I've had. I also asked him about this blood test - AMAS - that tests for antibodies to cancer in the blood. Supposed to work for all cancer and can detect cancer at an early stage. Supposedly, not a lot of docs know about this yet - don't know why.

Well, my doctor did a pelvic, and didn't feel anything abnormal. Did a pap - results yet to be returned. Did a CA-125, even though usefullness is questionable (see previous posts on this). But he did NOT want to do any CT-scans. I couldn't really pin down a good reason, except that he kept asking me how often I took ibuprofin for pain, and since it's not that often he deduced that the pain is not that great (it's generalized joint pain) and not due to cancer. As far as the AMAS, he promised to learn more about it, but expressed his skepticism about its usefullness specifically for ENDOMETRIAL cancer. I finally pinned him down as to why: if endometrial cancer RETURNS after treatment, the "prognosis is bad", as he put it, and early detection would just mean "you just know that you have cancer longer". I.e., he was telling me that there's no point in detecting it early - no matter what, if it comes back, you're going to die, so why live with that knowledge for a longer period of time!!!!

This really bothers me becuase 1) from what I read, if it came back it would behoove me to get into clinical trials, and surely, the earlier you catch it, the better the chance it might help? And by definition, don't "trials" mean they don't KNOW if it may help? And 2) even if it is definitely fatal if it returns, shouldn't it be MY decision as to how early I want to find out about this? Not his? This seems to be more of a personal/ethical decision, not medical. Finally, 3) If there's absolutely nothing that can be done if endometrial cancer recurrs, why bother even having follow-up appointments at all?! Yet he seems to think I should have them, every 3 months. So his views seem contradictory: get follow-up exams, even though nothing can be done even if we find cancer!!!

So. I sort of like this doctor on a personal level, and he came highly recommended, but I strongly disagree with his approach to this. Should I discuss it with him, try to let him know what *I* want (which is do everyting to detect a recorrence as early as possible), or just dump him? I would also be interested to hear from anyone else out there with endometrial cancer, and what your doctors have said about follow-up. Thanks.

Terry
[Edited by TerryJ on 12-21-2000]
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  #2  
Unread 12-21-2000, 06:17 AM
Endometrial CA Follow-up: Should I Fire My Doctor?

I didn't have endo, but if you really do like this doc then I would lean towards making sure he understands exactly how YOU feel about the whole situation. He is probably going by experience with other patient's and how they deal with things. If you want to know, then you have every right to know and he has no right to try to keep you from the truth. I am sure that some of the other ladies could give you better advice if they have gone through it themselves. Please know that I will keep you in my thoughts. Take care and stand tough!
  #3  
Unread 12-21-2000, 06:45 AM
Endometrial CA Follow-up: Should I Fire My Doctor?

While several sources say that CT scans are of uncertain value in endometrial cancer, the rest of what you report of what he said seems wrong (without knowing your case or being a doctor, of course). Here's a good website on the over view of survival rates and treatment options for endometrial cancer:

http://intouch.cancernetwork.com/han...al.htm#Staging

Apparently, recurrence is survivable, and it seems, the earlier it's found the better.

Given how strong a role psychological factors play in survival rates, it's really reprehensible to do what he did. Even when it seems certainly fatal, there have been cures. Most famously, Lance Armstrong. Though his doctor told him that he had a 20% chance, the doctor believed that he had no chance of survival because his cancer had moved to his brain. Since then he's won two Tours de France. Of course, Armstrong is an extraordinary person, but if he'd been told he had no chance, would he have had the faith to fight it out? I agree that it's the patient's right to know that there is cancer and it is serious.

I'm not sure how able you are to switch, but I'd certainly look into the possibilities of switching to a more supportive oncologist. I switched at my presurgical second opinion to the second opinion doctor because he was so soothing. I figured if I was in for a fight, I wanted him. Turned out afterward that he's one of the top gynecological oncologists in the country. So, being "tough" is no sign of being good.
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  #4  
Unread 12-21-2000, 09:21 AM
Endometrial CA Follow-up: Should I Fire My Doctor?

Hi Terry,

Although I don't have experience with endometrial cancer I do have experience with ovarian. I was diagnosed with stage III back in April. After completing the first round of chemo in August (once every three weeks for a total of six treatments), my blood work immediately went back up. There was a fluid buildup in my lung called a "pleural effusion" which contained cancer cells. The first chemo hadn't worked at all! When I went back to the Dr. to discuss my options, he really wasn't very optimistic sounding. I told him right then and there that I wasn't about to give up on this fight and told him not to give up on me. About the same time I went to see another Dr (as a hemotologist, but he is also an oncologist), discussed the newest development with him and was very relieved by his response. He is part of a large cancer treatment group here in CO, and said they tend to treat ongoing recurrances of cancer like a chronic illness that will eventually be beat. Very positive attitude if you ask me and just what I needed to hear. I agree that altough any recurrence isn't great but doesn't mean it is an automatic death sentence, that's bull-pucky if you ask me. I've decided that if I ever get the feeling my Dr isn't working with me 100%, I will switch immediatly. It's my life, not theirs!

So, off I went to start my second (and hopefully last) round of chemo with a different drug that is working! My CA125 had jumped back up to 180 after the first round and is now down to 15 after just three treatments. I have three more to go and am positive this is going to take care of it for me.

Oh, by the way, I also was having problems with major aches and pains that just wouldn't go away. I can't take ibuprofen while getting chemo and tylenol doesn't do much. I also asked for a CT Scan - 1) scared that cancer had spread and 2) worried about the effects of chemo and lack of estrogen on the bones. Thankfully they agreed cause I wasn't taking no for an answer and it came back fine, it is just the effects of chemo and estrogen but it is not causing any major long term problems at this point. Whew!

Sorry ladies for being so long winded, one of these days I'll learn how to not be so wordy (yeah, right). Anyway, I wish you the best of luck and wishes for continued good health.

Vicki

  #5  
Unread 12-22-2000, 07:03 AM
Endometrial CA Follow-up: Should I Fire My Doctor?

Terry,
The fact that you are even questioning whether to change doctors is very telling. Dealing with the fear of spreading cancer is very frightening. I have heard and believe myself that your emotions play a big part in your healing and survival. Your intuitions should not be dismissed. If you have fears that something isn't quite right, get some straight answers from your doctor. Why can't he do something to rule it out? Isn't it better to find out you were wrong now than to find out later that you were right? Some doctors just think that we get too hysterical about every little feeling. If they had to live like this maybe they would understand.
Good luck!
  #6  
Unread 12-22-2000, 11:03 AM
Endometrial CA Follow-up: Should I Fire My Doctor?

Terri,I just read your post and find it disturbing,esp since I had endometrial cancer, stage 1. Since my surgery inAug, I have gone every three months for a pap test and my doctor feels my lumph nodes. I did ask him if there were other tests I should have and he said not at this time. I will now ask him about the ones you mentioned and see what he responds. He as always seemed hopeful when we talk. I still semiblock the fact I had/have cancer but when I stop to think about it, I am scared and depressed but if I had your doctor I think I would be depressed a lot more and that is not good for us--stress can cause this type of cancer, all cancers. Does your doctor belong to an HMO that just wants to cut costs? I have read some HMO's split the savsings from doctors not perscribing tests with the doctors. I agree that you should get another opinion, or at least find a doctor that is knowledgeable and optimistic. I have been on the cancernet site and found most of the information hopeful. I wish you a Merry Christmas. Think positive and follow your instincts.
  #7  
Unread 12-22-2000, 08:42 PM
Endometrial CA Follow-up: Should I Fire My Doctor?

Not much time to write, but thanks to ALL of you for your posts - it's very helpful as I decide what to do about this doctor. Trish - thanks for the web site.
  #8  
Unread 12-24-2000, 08:01 PM
Lymph node examination

Is it relatively easy for the doc to check lymph nodes? I was told that the only way you could find out if LMP recurs is by pelvic exam, etc. I am between visits (every 3 months) and have been having some deep left pain similar to ovulation. It can't be ovulation because I don't have my ovaries!
  #9  
Unread 12-26-2000, 07:57 PM
Endometrial CA Follow-up: Should I Fire My Doctor?

More time to post - thanks again, everyone. It's so helpful having this message board as a support system!

Vicki: thanks for sharing your story. Viewing a recurrence as a "chronic illness that eventually be beat" sounds like the right way to think of it to me - sounds like you found a doctor with the right attitude! And you've got the right attitude, too.

Cmoney: I'd like to hear what your doctor has to say on the issue. At Stage I, though, you should be in pretty good shape - survival rates are something like 96%; recurrence is unlikely.

Linda: What is LMP? I've had the left-side "ovulation" pain on and off since by surgery too; I don't know what it means. I included it in my list of stuff that was happening that I gave my doctor, but he didn't have anything to say. He claims my lymph nodes felt fine (he felt them with a pelvic exam).
  #10  
Unread 12-26-2000, 08:30 PM
Endometrial CA Follow-up: Should I Fire My Doctor?

Terry -
Just had to respond to your post - I had endometrial adenocarcinoma, stage IIIa - no spread to any lymph nodes but it sure engulfed all my reproductive parts. Had a TAH/BSO on Aug. 25, 1999 followed by 25 external radiation treatments and three vaginal brachytherapies.
If you really do like this doctor on a personal level - then be honest with him about how his responses to your questions made you feel. One thing my oncology surgeon (who I adore - a saint, an artist, and one helluva skilled sawbones) has always conveyed to me is hope. There is always a course of treatment...and the patient should be actively involved in deciding that course. I think Vicky's doctors' outlook that recurrence of cancer is a chronic illness that can be treated is extremely positive...and that positive outlook is so incredibly important for cancer survivors.
Read Lance Armstrong's book - it's incredible.
Hang in there...feel free to email me directly if you like.
You're in my prayers!
HUGS!
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