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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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  #1  
Unread 12-22-2003, 07:38 AM
Im being made to feel like i was hallucinating in hospital

Ever since i was told by my oncologist that i had ovarian cancer not endometrial cancer (my gyn/ob did the operations and gave me my diagnosis) i have been trying to get to the bottom of this obvious mix up. Every time i go to my various doctors im told.........you misheard..........you were mistaken......you were half asleep......... BUT I WAS NOT ANY OF THOSE THINGS! I know what i was told and i wrote it down in hospital so when i told people i would get it right. I said to my onc .......where on earth would i get the word endometrial cancer from as ive never heard of it.......... Now to make matters even worse i also had written down that i had 8 lymph glands sampled and when i asked my gyn/ob were they negative as well the answer was 'yes' (although at the time i thought she was hesitant). I now find that even though i have been staged 1a NO LYMPH NODES/GLANDS WERE SAMPLED. My gyn/ob has lied to her teeth to me to protect herself and as i see it she is playing with my life.
My onc is being extremely cautious to say the least and to be honest i dont know who to turn to to follow this up. My questions to you are can i really have a stage without lymph gland/node sampling?? and what should i do?? I feel that my second operation was incomplete. Thanks for reading this.
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  #2  
Unread 12-22-2003, 10:51 AM
Im being made to feel like i was hallucinating in hospital

Hi Sheila,

Whoa! I'd be off the deep end about this. But first, take a really deep breath and try to relax (yeah, I know, easier said than done).

Okay, first off, I recall that you have obtained all of your medical records. If not , that would be the first thing to do, I would think. How do you know that they didn't sample any lymph nodes? I have to say that would be bothersome, though admittedly I don't know much about the procedures for ovarian cancer. I'm sure some of the very knowledgeable ovarian cancer survivors here might have some idea of whether lymph node sampling is always done, etc.

I'm sorry you are going though this. I would absolutely hit the roof, no doubt. Again, to be proactive, I would get every piece of paper possible that explains exactly what they did for your surgery. Then I would take the info. to another gyn/onc who hasn't been involved in any of this for review, to make sure you've gotten all the necessary care.

Good luck Sheila.

Beth
  #3  
Unread 12-22-2003, 12:31 PM
Im being made to feel like i was hallucinating in hospital

s Sheila

I agree with you. This is very upsetting. And yes, with ovarian cancer, lymph node sampling needs to be done for proper staging.
Beth has an excellent idea. Get copies of all your records.
This is your right as a patient. You may pay a small fee for copying. Then terminate your relationship with your ob/gyn.
Select another gyn/oncologist and take all of your info to this visit.
Let a third opinion make a determination in regards to lymph nodes.
You must be very assertive in this situation.
A gyn/onc did my debulking surgery. One positive lymph node was found. Other than my ovaries, all other pathology was normal. But that one lymph node brought my stage down to IIIC.
Hence, chemotherapy followed. My gyn/onc told me that if my surgery had been done by a gyn/ob, the one lymph node would have been missed. Hence an earlier stage and no treatment.
She said I would have been quite ill within a year.
I don't mean to frighten you, but this is sooo important.
Best wishes. Let us know.

karenann
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  #4  
Unread 12-22-2003, 12:41 PM
Im being made to feel like i was hallucinating in hospital

Hi, Sheila--

I agree with Beth that if you haven't already done so, you should obtain a copy of all your treatment records, including your surgical and pathology reports. Do you have these documents and is that how you know no lymph nodes were in fact removed? I would also agree that a consult with an experienced gyn-onc, not associated with any of your prior treatment team and at another institution, preferably a major cancer center, to review all of your reports is in order.

I'm out of my area on ovarian cancer, and I would suspect the ovarian cancer survivors who have a wealth of knowledge in the area will be along shortly. In the meantime, I did a quick search and found this link which will at least give you a little information to get you started:

http://www.ovariancancer.org/content/2-7-1.html

Take care,

MoeKay
  #5  
Unread 12-22-2003, 01:21 PM
Sheila

I agree with what the others have said. Get copies of ALL your records and ALL of the pathology reports. Read them over and if you still have questions/concerns take them to another gyn/onc. Have you talked again with the doctor who did the surgery?

Is the doctor now saying that you have endometrial, not ovarian, cancer? And that it is stage 1a? Staging can be done without sampling lymph glands, but it may not be as accurate. Could it be that the surgeon knew the cancer was confined to the uterus and therefore didn't need to sample any lmpyh glands? Or because he wasn't an oncologist he didn't know to sample lymph glands?

Why would your doctor have lied? Do you think she also lied on the reports? That certainly would be very troubling!

I am sorry that you are going through all this uncertainity! It's awful!

Many hugs and much comfort!
Janie
  #6  
Unread 12-22-2003, 02:52 PM
Hallucinating My Foot!

I think you were initially misled/misinformed--and let me just say you are NOT alone in that and I'm still steamed! However, follow everyone's advice--get the reports, get online with a good medical dictionary, mark them up, and ask questions and if not satisfied--change doctors and let yours know why!
  #7  
Unread 12-22-2003, 04:55 PM
Im being made to feel like i was hallucinating in hospital

Hi Sheila,,

Just putting my two cents in to tell you that I totally agree with the others.

Please let us know how things turn out.

Rosalie
  #8  
Unread 12-22-2003, 05:37 PM
Im being made to feel like i was hallucinating in hospital

As someone in the UK and therefore knowing the routine as it were... I'd say definitely ask for your records... I can tell you who to get these from if there's any doubt and the fee will be £10 plus copying charges plus an admin fee if they see fit. They can basically charge what they like.

I am also in the process of getting my lab reports and it is costing me a small fortune... seems wrong somehow that we pay so much for what ought to be ours by right.

Ann
  #9  
Unread 12-23-2003, 05:41 AM
Thanks

for all your replies. Firstly its difficult, almost impossible, to get hold of your records in this country. As the healthcare system is free we dont own our own records and i have tried to get hold of them but no luck so far. I will message AnotherAnn for advice on that one. To answer Denton56 questions my gyn/ob said i had endometrial cancer and it wasnt until i insisted on seeing a gyn/onc that i was told it was ovarian cancer. My gyn/ob was adamant that i shouldnt see a gyn/onc as all my notes were discussed at a weekly tumour board meeting. I became suspicious after this wrong diagnosis and kept thinking about her reaction to my asking her if my lymph nodes were negative. I wrote, after my meeting with the gyn/onc, to ask him how many lymph nodes were sampled. He replied none. I wrote to my gyn/ob twice but still no reply. Before my op she went through everything with me and told me that 8 nodes/glands would be sampled. I have to wonder a)what happened to make her change her mind b) did she forget c) did something happen on the operating table so she had to stop d)could she just not do it.
I cant get answers to this. I am seeing my gyn/onc on jan 14th to discuss the staging that he has given me. To Moekay i have read the article recommended. I have read it before and it makes depressing reading. I can only say if i had found 'hystersisters' before my operation i probably wouldnt be in this mess!! Thanks to all for replying. If any of you have any more ideas please let me know.

  #10  
Unread 12-23-2003, 05:49 AM
YIKES

My gyn/onc has just rung me and wants to see me now! My legs have gone to jelly. Wish me luck!!
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