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Im being made to feel like i was hallucinating in hospital Im being made to feel like i was hallucinating in hospital

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  #11  
Unread 12-23-2003, 06:37 AM
Good Luck!

Hi, Sheila--

Good luck at your meeting with the gyn-onc. I hope you get all your questions answered to your satisfaction and then confirm what he tells you with another gyn-onc.

Sorry if you found the ovarian cancer site I provided depressing. You had asked in your post about the need for lymph node removal to do surgical staging of ovarian cancer, and the site I provided answered your question.

It's a shame that they make it so difficult for you to get copies of your records in the UK. Thank goodness you got a referral to an oncologist who provided you with a correct diagnosis and set you on the course for obtaining complete and accurate information.

Please let us know what you find out.

Best regards,

MoeKay
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  #12  
Unread 12-23-2003, 06:45 AM
Im being made to feel like i was hallucinating in hospital

Hope all goes well at your meeting Sheila.

Hopefully all your unanswered questions will be put to rest.

Keep us up to date on your findings.

Rosalie
  #13  
Unread 12-23-2003, 12:13 PM
Im being made to feel like i was hallucinating in hospital

Sheila:

I know you're probably already at your GYN-oncologist's office. First off, I want to let you know that you're in my ers. Secondly, here's a strategy that I've successfully used to get copies of my information:

The Gyn-oncologist has copies of everything. If your rapport with him or her is good, just ask them (or the nurse) to copy their copies (you can always say that you might be travelling, and need to keep that information). It's easier than trying to get it from the original source, or from the hospital, and your odds of getting the information that you need are better.

Hope this helps! Good luck with this visit!



Audrey
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  #14  
Unread 12-23-2003, 02:17 PM
Im being made to feel like i was hallucinating in hospital

I had a very good meeting with my gyn/onc. I explained everything to him. He told me what he would have done if he had operated on me the second time and that i should have been handed over to him. He told me my operation was not done correctly and i have been put in a very difficult dangerous position.
We talked about this a lot and he said i was sharp and no fool! (how was i supposed to take that i wondered!)We talked about my follow up (cant believe this is happening to me when i thought it was all over). He is going to send over all my notes and reports to one of the top ovarian specialists in the country and he wants me to meet with her. He, in turn, will discuss with the Professor how we should proceed. He feels i have two choices.
One is to have the nodes removed laparospically (sp) and the other is to have a cat/pet scan which will cover the whole body. Im thinking i would prefer the scan but know nothing about it. Can anyone enlighten me on this cat/pet scan? It detects malignancy hot spots all over the body especially lymph glands and is used for patients with lymphoma amongst other illnesses. Not many places in the UK have one but i gather they are used more in the States. He hopes that nothing will be found and my chances are 19%. I feel relieved that i am not going mad but so terribly drained that my two operations have really been inconclusive. Thanks for all your support. Luv ya all.

Sheila
x
  #15  
Unread 12-23-2003, 04:24 PM
Im being made to feel like i was hallucinating in hospital

Way to go! It sounds as if someone is finally being honest with you. I'd go for the scan knowing that the other option is always there if needed. It isn't an either/or thing... you could do both if after the one you felt the need to do the other.

Good luck!

Ann
  #16  
Unread 12-26-2003, 05:18 PM
Ovarian Cancer

All our thoughts are with you Sheila, I hope you get some answers. Is there a special area for us gals with Ovarian Cancer? I was referred here from the American Cancer Society message boards.
I have to say my story is sadly similar. My female GYN tied my tubes in 5/2001 via laproscopy. The following year I detected an abdominal mass. Despite repeated calls to the office they informed us it would be 3/4 months before I could see the doctor; we settled for her nurse and got in a month or so earlier. During our wait my husband says he called the office every week to see about getting me in sooner (if there was a cancellation) but we live an hour away so it never happened. The nurse was afraid to touch me. You could see the growth portruding from my abdomen from across the room. She estimated it was 20 weeks (half the size of a normal pregnancy) and that it must be a fibroid and did an on-the-spot ultrasound confirming it could not be a pregnancy.
They sent me to a radiologist for a diagnostic ultrasound and he called my GYN within an hour to advise her that I had an ovarian mass. She got my blood tests and didn't think I had elevated CA125 so she figured he was wrong and that it was a benign fibroid and she could operate in SIX MONTHS. She advised me that even the people who "knew they had cancer" had to wait because the surgery center was backed up. She farted around, had me get this test and that CT and told me she was trying to get an oncologist to assist with the surgery in the event it was cancer. Months later when she finally DID talk to the oncologist he said, "GIVE ME HER CASE!" And he pulled every trick in his book and made my GYN assist him at his hospital instead and was able to operate on me THE SAME WEEK.
It was a 20cm leiomyosarcoma consuming my ovary and fallopian tube, they're not sure if it originate from a ligament or the ovary/fallopian tube. They took my perfectly healthy/normal uterus (okay, I had mild cervical dysplasia) and my other ovary as well because it was covered with cysts (though I still don't know whether I wish I still had it, menopause at 30 is not at all what I expected!)
It was really difficult for me to obtain my medical records because my GYN DIDN'T FINISH DICTATING HER NOTES, she actually called me on the phone to follow up and pump me for information so she could finish. She was kind enough to waive the fee for the copies though by the time I actually got them.
I also got varying information on how many lymph nodes were biopsied. The GYN/ONC did a biopsy on the tumor while I was on the operating table so he would know whether to go and sample all the surrounding tissue and lymph nodes. I read the copies of the lab reports and it says among all of the other things they sampled that 11 lymph nodes were biopsied. I KNOW they didn't tell me they took ELEVEN.
My husband now carries a recording device to ALL our meetings with doctors. And the testing never stops. They say I am Stage I with clear margins which is excellent. Except that they treat me like I'm ticking, the instant another sign of cancer shows that will automatically be changed to Stage III.
Also, GET THE 2ND OPINION at any cost. We had all kinds of delay with insurance but MD Andersen, Texas had different findings than Sutter and UCDavis and that means I would have had different chemo (if we had known in time) which could save your life.
Be well my sisters! Live well, laugh often, love much
Christianne
  #17  
Unread 12-27-2003, 08:16 AM
Im being made to feel like i was hallucinating in hospital

When I got a second opinion - I wrote my Gyn/onc. and surgeon explained that the second opinion was different from his and that the second opinion doctors thought I should have radiation. I called my Gyn/onc and waited by the phone for 2 days. Then I faxed him a letter asking for his explaination. He never called and I could only speak with the Nurse. Also on my first Pap test after my radiation treatment the Nurse at my second opinion doctor office called an told me the report was normal. I asked for a copy of the report and when it came it said abnormal. When I questioned the Doctor she said she thinks it is because of radiation but I should have colposcopy. The point is - get reports, question and hold doctors accountable for what they say or do not say.
  #18  
Unread 01-06-2004, 07:33 AM
Hi everyone

Tomorrow i have an appointment to see a Professor of Cancer who specialises in ovarian cancer. My gyn/onc wanted me to have a third opinion to which i agreed too. Im trying to write down all my questions but as soon as i try to put pen to paper it gets so confusing i cant do it. My gyn/ob wrote me a letter which all i can say was a load of 'old tosh'. She said she had no intention of removing lymph glands so why did she say in another letter to me that my kidney ureter was in the way of the lymph glands?? Im also waiting for an appointment for a PET scan. Can anyone tell me if this procedure is claustrophobic and how you all reacted. Thanks a lot. One day i wont have to worry anymore! Thank god for all you ladies out there. Take care.


  #19  
Unread 01-07-2004, 12:00 AM
PET and CT scans

If you are claustrophobic you may need to ask your Dr. for something to calm you. When the PET people call to make the appointment they will take the time to explain everything, make sure you ask if you can take an herbal remedy (like valerian or kava kava) and make sure you tell them what you took and at what time when you show up. You will be asked to lie still on a sliding tray inside a approx. 2 foot deep tunnel. I find I kind of trance out and found I even fell asleep once and woke up right when they were doing my head, so I wake up and there is the wall of the doughnut I'm in some few inches from my face. ha ha I had a hot flash and wondered how it all looked from their end.
I prefer the PET scans to the CT scans, though they take much longer. It used to be: the shot, a 45 minute wait lying back in a comfy chair with a blanket, very quiet, no distractions, and then a 45 minute lay on the table during the scan. Now it's an injection an Hour and 15 minute wait and then the 45 minute scan, though my next will be longer next time since they'll be including my feet too as I apparently have neuroma in the ball of my foot.
I had 3 PET scans and 6 CT scans in 2003. I much prefer the PET (though they show different things so they often use them together, i.e. they are happy to ignore something on either report if it's not confirmed by the other). I can't stand drinking barium, I've even gotten so sick I've thrown it up and had to start all over. And they seem to have trouble getting the "contrast" through an IV, I think they shoot it through you at high speed. I'll refrain from telling my horror stories.
I appreciate the information the PET can glean. It identifies where your body is focusing it's energy, it makes pictures of tissue metabolism. It found a cyst I had grown after surgery and we were concerned it was a recurrence but followed it's progress (it got to approx. 6cm) and then miraculously resolved itself (burst most likely) it can identify which lymph nodes had increased in activity or size and it could see the excess fluid in my abdomen either from the cyst bursting or excess lymph fluid from all the nodes they excised. All that info about what's going on inside my body from PET scans, no surgery. The only really sad thing about all the injections is my veins are getting tired and scarred. And they inserted a port-o-cath, which is like a button in my chest inserted under my skin that they can easily hook an IV to... but no one uses it. NONE of the tests will use the cath, I don't know why I had it installed and even though I finished chemo 6 months ago they won't talk to me about having it removed.
I hope that was helpful and not too much.
Christianne
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