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  #1  
Unread 07-21-2003, 05:20 AM
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I have not been to any follow-up appointments since the one immediately after radiation. I have a lot of questions, but I think some are probably gonna seem really dumb. I feel like the rest of you-all know so much more medical stuff then I do, I don't even understand what half the tests people are having ARE!

1. I still don't understand where they expect this cancer to recur, other than at the same place (lungs are high on the list though). No-one explained to me what tests they would be doing each 3 months other then the gyn. and blood tests. My family doctor (who also had cancer a year ago) says they always must do some kind of "picture-type" follow up (x-ray, CT, etc.) but I've not heard of this yet.

2. Everytime anything "strange" happens I have this fight between the "old me" who always said its nothing and the "new me" - who is scared to leave it (that's how I got into this mess in the first place, by saying all that bleeding was nothing...)
Like last week I had diarhia for 2 days, and I'm like "oh my god somethings wrong" instead of just saying - well I ate too much watermelon, you know?

3. I would really love to hear about the follow up plan of anyone else who had a similar diagosis to me (see signature).

Thanks to everyone for listening!

Esther
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  #2  
Unread 07-21-2003, 08:57 AM
For myself...

I am in a learning process. Where I have learned much is from the postings and replies on this site.

And let me say this - there are no 'dumb' questions, so get that out of your mind, and start asking away - to your doctors, to fellow hystersisters. I even asked my gyn/onc where the removed organs went! They were mine and I wanted to know. You need to empower yourself!

Re: concern about whether it was the watermelon or not causing diarrhea - has your doctor, like mine, said that you can call him whenever you need to, and given cell phone/home #.

Big to you
  #3  
Unread 07-21-2003, 02:54 PM
Esther, I feel the same way as you do.

I am a stage IIIc endo. My thing is, if it traveling to the lymph nodes (no matter how little) wasn't seen on a scan, what use is the scan for follow up? How do they follow up for sure? Everyone asks me what they do to be sure. I still don't know.

I agree with the cancerhead. I had a terrible backache - I mean, I could barely stand - and then my dr. says! Oh, you took a pilates class! Your back and stomach were not ready. (by then the pain had gone away) Now I have the pain again - after days of lying in bed from bone pain, from chemo. So now I have cancerhead again.

It is a tug of war between the old way and the new way. If I had even for a minute thought that my symptoms - heavy bleeding, pain, on HRT, diabetic, etc - put me at risk for this cancer...I would have screamed my head off. But the old me said, I told my gyn, and he said it was nothing....

Maybe I didn't help but your post gave me pause to think, and complain! sorry!
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  #4  
Unread 07-21-2003, 04:49 PM
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I sure can relate to the cancerhead. I have been experiencing back pain and a pain in the butt that comes andf goes. My negatibe Eyeore self says that the cancer is back and my positive Tigger self says that it is because i have been walking 3 miles and rollerblading another 3 miles every day and recently had surgery to reverse the colostomy. My Dr is also very good, encourages me to e-mail him any concerns and he always answers quickly, but no Dr. can guarantee the cancer won't come back. No ones knows for sure where my cancer originated, and said the tumor may have been a mestasis from a primary site that they can't find. My own immune system may have gotten rid of the cancer at the original site, but not before it had a chance to spread. CT scan in Nov didn't pick up my cancer, but the PET scan showed it in the upper abdomen, pelvic cavity and a spot on the liver. CA 123 doesn't work for me because they do know it is not ovarian. My only follow up is PET scans every three months.
I am trying not too worry too much. If I am living on borrowed time I want to live it well, not waste it worrying
  #5  
Unread 07-21-2003, 05:07 PM
This Too Shall Pass!

While the CT scans aren't perfect, if there is evidence of new tumor growth beyond a certain size, they should show it. Some patients' gyn-oncs don't require the scans because they don't deem them to be at an elevated risk for recurrence like I was. I believe the chest, abdominal and pelvic CT scans, in combination with the pelvic-rectal exam, and the CA-125 and pap, was the testing combination my gyn-onc felt best for me given my particular risk factors for endometrial cancer recurrence.

Yes, cancerhead (a/k/a the "cancer crazies" as I call it) is difficult. For me, dealing with the psychological aspect of the disease was much more difficult than the physical part. I literally drove my doctors nuts thinking certain aches and pains or bumps were recurrences in various parts of my body. Even my dentist did not escape without having to listen to and see me. I had extra CAT scans because I had pain in my back, and thought an inflammed underarm hair follicle was evidence of a recurrence in a lymph node under my arm. Now in hindsight it seems funny, but wasn't funny when I was going through it.

It will take time for you to find a happy medium between running for testing for everything and making sure your not ignoring things that could truly be indicative of recurrence. For now, if you are worrying about something, my advice is to get it checked out! From my experience, doctors are good about understanding the mental component to a cancer diagnosis. So what if you run to the doctors several times and it turns out to be nothing? I've become much more of a hypochondriac since my diagnosis four years ago, but it does lessen with time. I too thought my endometrial cancer symptom (spotting between periods) was an indication I was starting menopause, not cancer. And so did my gynecologist at first! The upside is that I've built up some great relationships with all of my fabulous medical providers (all ten or so of them!!)

Remember: this too shall pass. What you're experiencing is quite normal.

MoeKay
  #6  
Unread 07-22-2003, 08:59 AM
Thank you guys for your posts, shepherdpal and MoeKay!

I just left a message to speak with my dr. I know this will get better in time, but right now I am guilty of worrying without getting the dr. involved, which would be so much better (for me). Then I would at least have a basis to go from: this is a worrisome issue, or it isn't.

I don't know what I would do without you.
  #7  
Unread 07-25-2003, 12:30 PM
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ShererdPal, now your post has me spooked all over again. I was asking my chemo doc these questions just yesterday - how will he know if it comes back anywhere in the future and all that. Before we even start chemo he is giving me a chin to bottom CT scan as he said that would be the best way to know if anything else is developing. I asked about the PET scan, but he seemed in favor of the CT. But now I read your post where they found it in the PET and not in the CT. Egad. I want a PET! I want this stuff out of me.
What did the doc do after finding it on your liver and stuff?
  #8  
Unread 07-25-2003, 01:45 PM
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Dear Polly,

I didn't mean to scare you. I am so sorry. I believe that CT scans are very good at detecting cancer most of the time and my case has defied statistics from the start. Read some of my posts in the archives to see what a strange journey it's been.
When I had the bad PET in November the DR told me my cancer could not be cured and that the chemo would not destroy the cancer, but at best it would shrink the tumors, slow their, give me remission for about a year. At this time I was very anemic, having low grade fevers, and down to 88 pounds ( from my normal 102)
I had many people praying for me including a Catholic priest who has been a close family friend for many years. I also have a strong love for St Therese and Mother Teresa. In Dec, I read that the wat for Mother Teresa's beatification was opened by a woman in India who was healed of terminal abdominal cancer by praying with a medal that had belonged to Mother Teresa. I have a photo of Mother Teresa thaken with my priest friend when he worked woth her in 1997, 5 months before her death. I placed it on my stomach and said a quick prayer. A few days later I noticed the fevers were gone and my energy back,, despite the fact that I had had 2 rounds of high dose chemo. The PEt Scan a few weeks later showed no cancer and so did the one in April and the surgery last month also confirmed the cancer is gone. Will it come back? I don;t know, but I do know that I feel great, am leading a teen retreat next week and leading the youth group of Half Dome in Yosemite next month. I feel it is a miracle, but my Dr. says " Not a miracle. These things happen and we can't explain it." I hope my being too religious doesn't offend anyone, The other list I used to subscribe too had a rule about keeping religionj out of our posts and I had to quit, that list, found it too depressing. I also want to say that another woman in my parish was healed of breast cancer after praying to Mother Teresa, but another one was not healed and is very close to death right now. It's not about the picture. It's just God's mysterious ways, which are wonderful, but beyond fathoming. Whether we have cancer, or are cancer free we all have a terminal illness, because we all have a human body that is going to die. During the worst part of my illness I became very aware of what St Thomal Aquina taught "The body inhabits the soul, not the soul the body. I realized that my body had cancer, but my soul didn't and never would. Our souls can't age, die, break, have a heart attack, catch a cold, or any disease except sin, and Jesus paid the price to set us free from sin, make our souls pure, beautiful and strong.
  #9  
Unread 07-26-2003, 10:56 AM
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I believe in miracles. And I talk to God daily, either about helping the women on this board, or about continuing to heal me.

My mom says something that's kind of interesting. And that is, "It's not the thing. It's the belief in the thing." She is a big believer in the power our own minds hold with respect to healing. Dr. Bernie Seigel's book "Love, Medicine & Miracles" has some interesting examples of this.

There's a lot to be said for thinking postive, healthy thoughts. If I let myself succumb to fear, my health may suffer for it. I certainly have my moments of fear or dread. But overall, my story is that they got all the cancer, the chemo killed off anything else, and my revised diet and exercise changes are keeping me healthy. And I'm sticking to it. :-)
  #10  
Unread 07-27-2003, 07:39 AM
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I read on the site of the American Cancer Society that follow-up for uterine cancers doesn't regularly include any kind of scan, only if there is some suspicion after other checks are done.

Has anyone else heard anything like that?

Esther
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