Dana and I drove to DC today to see the new oncology surgeon. He was not encouraging, but asked for more information. I have to call three doctors on Monday and request stuff be sent to him.
The main problem seems to be that they don't seem to know where the primary tumor is. The Frederick Drs. all told me that it was in the appendix, but this dr says that is so rare that he has a hard time believing it. If they can't establish where the primary tumor is, they won't operate.
Assuming I can get all the doctors to fax out the stuff on Monday, it should be a week or so before I hear from him again.
Since I cry at everything these days, I left in tears. However, we then drove to my brother's house to see how my new SIL has redecorated (very feminine) and then my brother took us all out for a wonderful dinner. So at least the day ended well.
The only advise I can think of for you, is to remember to love your body. Don't get angry at it or it will co-operate less. Loving yourself is probably the best thing you (not drs) can do to improve your recovery.
On Fri, 15 Oct 2004 22:49:28 -0400, Cheri2Star wrote (in message ):
Oh God, that is so darned frustrating. I am in awe that you're holding it together - I'm not facing anything like you are, but I flipped out when they told me that I was just going to have to suck up the pain permanently that one time.
Is that what he said? Usually, once they have the faxes in hand, they call you right away.
Who could blame you? That just sucks.
You're in my thoughts and prayers tonight, Cheri. We're all pulling for you.
I love you, Cheri. I am thinking about you all the time. {{{{{{{{{{{{{{{{{{Cheri}}}}}}}}}}}}}}}}}}}} ~~ Sooz To live a creative life, we must lose our fear of being wrong. ~~Joseph Chilton Pearce
Cheri, I've never heard what kind of cancer you have. Is it a carcinoid tumor? If so, your doctors are probably right - it usually starts in the appendix. Sadly, many people don't manifest symptoms of spread until long after they've had an appendectomy for other reasons so the doctors often aren't able to determine the primary site with certainty. Pat Caudle (wildpoppy1) also has carcinoid tumor.
I have a mucinous adenocarcinoma. So I think the answer is yes, that is the same as a carcinoid tumor. But all the drs have said that appendix cancer is very rare. To see it twice in a lifetime is remarkable. And the current onc has said no one really knows how to cure it because it is so rare. Which why I went for a second opinion. I'd like to find someone who thinks they know how to cure it!
Oh, of course they do. I never doubted that for a moment. But between that awful counselor and Dana's drug advice, I was feeling ganged up on. Plus, all
3 of my siblings, my mother, my aunt are all trying to manage my disease as well by giving me advice on clinical trials, and numbers to famous cancer centers, etc etc etc. Sure, it's all based in love but after a while it starts to feel like they think that cancer = dementia. You know what I mean? I'm sick, I'm not stupid.
I am thinking about talking to the PCP about an antidepressant. I know it's not normal (for me) to cry at every TV commercial. I literally cry at everything, which is probably why the girls are upset. LIke I said earlier, I think it would be insane NOT to be depressed with all this going on, but it doesn't help the disease to be unhappy all the time. I need to spend whatever time I have left (whether that be 1 year or 20) as normally as possible, and that doesn't mean crying all the time. I get that, really I do.
Not sure about a counselor. Besides the money issue, I feel kinda burned about it. I've been in marital counseling twice and personal counseling once and never really found a huge difference in my life. I thought maybe I'd see if there is a cancer support group in my area. The second opinion dr invited me to join the one at his hospital but its over an hour away through a very questionable part of DC, so that didn't thrill me. Something nearby would be infintely better.
So mostly what you heard earlier was venting. I'm a little calmer now, thanks to all your support. I still like that Bon Jovi song though. You think they would play that at a Jewish funeral? LOL - kidding, just kidding.
I hope that IF you decide you want to see if anti-depresents are right for you, you do NOT ask your PCP. They do NOT really have hte appropriate experience with them to decide correctly whether to perscribe, or to warn you about side-effects and monitor you as you go through using them.
Also anti-depressants really should be used in conjunction with therapy.
Sorry, this is just an oppinion too, and I totally understand your oppinion on the therapy part. But I hope that you can find a good psychiatrist if you want to be perscribed. Typically you can see them and get medication in one or two visits, with some light talking about your problem, it isn't hte same as being in therapy (other ppl do that).
not sure if I'm making sence here, hopefully Tina or someone can say what I am trying to say better....
Many PCPs are either too likely, or not likely enough to perscribe. They really aren't trained and don't have the experience to analyze your needs.
Also, they do not have the experience for instance to bring you up on dosage REALLY REALLY slowly if you need it. Or to know about obscure interactions with other things you are taking. Or to suggest you do therapy too if they feel it is warrented. They may be more likely to perscribe something like Lexepro (or whatever htey are trying now; the insurance companies don't like lexepro because there is no generic and it is really expensive). I don't know since I am not a doctor, but because you have a temporary depression (one caused by circumstance, not a clinical depression) you might need something else, such as a fast-acting drug taken or not taken daily (things like lexepro are meant to be taken over time and won't even kick in for weeks).
I understand your reasons both for and against taking medication and am not trying to convince you either way about that. I just firmly believe based on personal experience that PCP, geinecologist, and others are NOT the people who should be perscribing it.
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