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Don't doctors know? Don't doctors know?

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Unread 07-22-2004, 11:51 AM
Don't doctors know?

Hi Sisters

Perhaps I just need to vent for a moment. As many of you know, I have been on a long road of recovery. Still have alot of problems. I have alot of pain, I'm rarely pain free these days. Even the morphine does not help anymore. I also am leaking urine and have to wear a diaper all the time. Yuck! You would think at my age I would be poddy trained, but nooo.........

I have checked with my doctors about my post op complications and also to see if I am 'C' free. My doctor told me there is no gyn test in my case. It's only for ovarian or colon cancers. He told me that they only think they could do was do a complete CT scan but that would be pointless since I have so much scar tissue and am going through a major healing process. I ask when he thinks I will get better and stop leaking... I'm told they don't know in my case. I ask about the pain. The same answer. They have not even mentioned reconstruction to me. That scares me. I'm healing slow and they say just the healing from the vaginectomy will take 7 months. I imagine if I have reconstruction next year, it will be the same all over again, a long healing process.

I know with 'C' there are no cut and clear answers, but I'm so tired of being told 'I don't know', 'my case is a very extreme one'. etc, etc. I don't have any type of prognosis. The only thing I hear is that I'm healing from surgery. Does anyone else have this type of experience?
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Unread 07-22-2004, 12:11 PM
Don't doctors know?

I know that Dr's don't have all the answers, but I had the same cancernand a similar surgery. I also leak urine, but have learned to control this by jumpimng up and down about 20 times in the bathroom to get out every drop. My dr said this is caused by scar tissue and probably some nerve damage. I had my colostomy reversed and scar tissue keeps forming on the colon, needing to be scraped off every month to prevent a blockage. Sometimes I leak from that end, and wear a pad, always on the look out for the closest bathroom. I am leaving tomorrow to lead a teen retreat in Oregon for a week and hoping, trusting God, not to have any accidents. I just can't let these problems turn me into a recluse!
Next month I will have surgery to cut away this scar tissue and widen the colon a bit. I don't have pain, but my husband and I have not been intimate because of the bowel and bladder problems. We will tackle that issue after the surgery.
As far as monitoring the cancer, I have PET scan every 6 months and in April had a combined PET/ CT which is the best way to tell the difference between scar tissue and cancer. I think you should ask your Dr about a combined PET/CT. It helps to have some idea of what is going on inside of you. Hang in there. I pray things get better for both of us.
Unread 07-22-2004, 01:12 PM
Don't doctors know?

Hi, Debbie and Maria,

I know you both have had pelvic exenterations and found this information on the Oncolink (Univ. of Pennsylvania) website concerning your type of surgery. The information I have in quotes was the response to a question a woman with recurrent cervical cancer sent to the Chief of the Division of Gynecologic Oncology, who is a nationally-recognized gynecologic cancer expert:

"Pelvic Exenteration is a radical surgical procedure used in just the situation you describe, when lesser surgery and radiotherapy have not been successful in controlling cervical or uterine cancers. If the tumor is confined to the central pelvis, cure may still be possible with exenteration. Because the tumor will be in close contact with the bladder and rectum, removal of one or both of these organs will be a part of the surgery. The urinary and/or intestinal tract can be reconstructed, as can the vagina, if its removal is needed. If there is any evidence of spread of the cancer beyond the central pelvis, the operation should not be performed.

Although pelvic exenteration involves a lengthy and difficult surgical procedure and a prolonged recovery, many patients have been cured of recurrent cancer by this means, and have gone on to live relatively normal lives. An operation of this type should only be performed by an experienced gynecologic cancer surgeon at a major cancer center."

Prayers and best wishes to both of you for a full recovery.

Take care,

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Unread 07-22-2004, 02:25 PM
Don't doctors know?

Maria Coo

First off huge s

I am sorry that you are having the problems that you are having, I wish that I could help. Although doctors have all the schooling that they have does not mean that they know everything. And although they would like to be able to give you the answers that you would like to have, it would be better for them to say "I don't know" than to give you the wrong answer.

I know that when I had to have my surgery to form me a new bladder, I was thinking that I would recover like I did from the hyst. WRONG. It took me a month and a half to feel human again and 2 to 3 months to feel normal.

I just wish you wasn't in so much pain, that is the part that bothers me. I wish I had a magic wand that would take the pain away from you, and make you feel better.

I dredge deep in my soul to try to find the words to comfort you but alas they just wont come. I just wish I could jump over the "pond" and be with you and help you thru this, but alas all I can offer is cyber s.

I will continue to for you.

God Bless
Unread 07-22-2004, 02:55 PM
Maria, I Wish You Felt Better

I'm pleased to see your post but I wish that things were going along better. I thankfully haven't had your surgery, but I will keep you on my prayer list and the church prayer book. The "I don't know" must be so totally maddening! Love from Ellen
Unread 07-22-2004, 03:05 PM
Don't doctors know?

I have heard that a PET scan can show cancer that may not show up on a CT scan. Do they have this scan in Holland? Have you seen a GYN ONC? If so, have you had a second opinion with another GYN ONC? Good luck!

Unread 07-22-2004, 04:18 PM
Don't doctors know?

Dear (((Maria))) While it is good to hear from you, I am sorry to learn of your current problems. Unfortunately doctors many times cannot give us answers and IMHO the best ones will say they do not know rather than lie to us. I just wish you were not in so much pain. I suppose they have tried different pain meds with you; I do know that some pain meds work better on some than others.
Maria, you have undergone so much physically and emotionally in a relatively short time and few would be able to hold up as well as you have. You already have shown such great inner strength and resolve and I know that this will continue to help you through all your new difficulties. Please remember someone is always here when you want to vent and please let us know how you are doing when you can. I am keeping you in prayer that the Great Physician may guide your doctors and watch over you as you continue to heal.
s, peggiesue
Unread 07-23-2004, 12:31 AM
Don't doctors know?

Thank you sisters, you are all quite right, the doctors don't have all the answers. I guess I was just hoping for one.... and of course the magic words "YOU ARE WELL"

Debbie--- Thanks for sharing with me, I don't feel so alone now. I think it's the scar tissue that is causing most of the problems, and I imagine it's also hitting against things and shifting alot. My DH and I have not been intimate either. I feel very unsexy, what all with a stoma bag and a diaper. I am just like a big baby in bed. Still I like being physical, just touching my shoulder, cuddling helps so much. Fortunately, my DH is the best at cuddling!

Moe Kay -- thanks for the info. It all sounds quite familiar. Thanks for checking into it.

Peggy Sue, Margaret, and all --- please keep the prayers coming, for all of us. God, He is the One in whom I get my strenght. I'm still here. When I was in the hospital for so long, I kept saying that I was never going to get out alive. Each and every surgery I was so afraid that I would never wake up again. One of my lowest points was laying in the hospital with 10" of intestine laying (attached to me) on my tummy for 2 weeks! I kept asking 'how long?' and I was always told 'We don't know, we will wait and see'. Everyday, I felt I was at deaths door. Praise God, I'm out!

Many hugs and much love to you guys as we continue on in our journeys!
Unread 07-23-2004, 12:58 AM
Don't doctors know?

Dear Maria,

Being a Dutchie in Canada, I always read your posts. I recently lost a brother to cancer, and i guess, it makes me a little more aware of the mountainess issues some of you very brave women face each and every day.

I wish I had a magic wand, Or at the vey least, had all the answers....

But, in the words of Job, I too am only a miserable comfortor.

Wish I could hold your hand for a moment, or bring you some flowers....

Please hang in there, do you notice how everyone takes notice when you post??
Obviously, you have a roll to play on this website.

Take time to smell the flowers that grow along this particular patch of road that you are made to travel.

Even though I do not have cancer at this point in time, I have issues facing me that are far greater than I am.

It is so wonderfull to read your posts, it gives me courage for the future.


PS I am born in The Hague, I believe that is where you live??
Unread 07-24-2004, 03:06 AM

Hi, yes indeedy, I live in Den Haag, well a suburb, since you are from here you most likely know it... Leidschendam.

I'm so sorry about your brother. It's not easy to have family members ill and then to lose them. I have an Aunt, she has leukemia. She is really amazing. She is 84 and has had leukemia since 1999. So far she is doing quite well except for some side affects. It's amazing, there are so many different kinds of cancers and even leukemias. My grandfather, my aunts dad, was diagnosed with leukemia and died a few days later! But she tells me its a different kind. But my aunt has such a postive nature, I really think that it is that positivity and her faith in God that are helping her.

Feel free to write to me (right now my email is down but you can always pm me)

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