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partial hyst, found unfamiliar maliginancy -- another surgery partial hyst, found unfamiliar maliginancy -- another surgery

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  #1  
Unread 02-01-2004, 11:23 PM
partial hyst, found unfamiliar maliginancy -- another surgery

Hello Women! Perhaps one of you out there is familiar with this scenario -- have multiple fibroids, ovarian cysts, very LONG painful periods -- go to (male) gyn dr and he says, its okay, you'll go into menopause in 5 or 6 years -- it will slow down. Okay, maybe if he had to bleed 5 or 6 years two weeks out of every month he would think differently. I find new (woman) gyno dr -- she looks at fibroids (big) (many), sees slightly elevated (42) CA 125 -- see anemia, understands pain and the effect on my quality of life -- goes in vaginally to take out uterus -- finds tumor on left ovary, takes it -- leaves right ovary, but takes biopsy. Results come in, she's not happy, and she's baffled. Tumor is not invasive but is borderline malignant. Cell biopsy of ovary tissue (both ovaries) is serous cell carcinoma. I'm not sure why she's confused -- but she sent it off right away to the head of gyno/onco at Cedar Sinai -- he says, he's not seen this particular type of malignancy, so for sure take out remaining ovary, and omentum -- she sort of says the omenectomy is "precautionary" and a good diagnostic tool -- and they will do washing, etc when they get in there laproscopically. hmmmmmm. I'm frankly more freaked about the omenectomy that I am about the "c" -- my "second" hysterectomy isn't til 3/2/04 -- they wanted me to heal from 1st (vaginal) hysterectomy and, of course, getting the calendars of two doctors and a hospital to work pushed the date up. My question is -- is this worse than I think it is? Am I swimming the River Denial? Over or under reacting? Anyone have any thoughts, experience to share with this type of scenario? Appreciate input --
Blessings to each of you,
Janet
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  #2  
Unread 02-02-2004, 07:02 AM
Don't Panic

Never waste a good panic is my motto. I'm not sure of what they found either so that I can't comment on. Is the gyn/onc going to do your surgery--when there's cancer gyn/onc should do the surgery. The omentum is a layer of fatty tissue in the abdomen. I guess it sort of sits there. I wish you the best with your surgery and recommend a gyn/onc do it.
  #3  
Unread 02-02-2004, 07:11 AM
partial hyst, found unfamiliar maliginancy -- another surgery

Janet,

Here is a link to the Johns Hopkins Department of Pathology's website on ovarian cancer

http://ovariancancer.jhmi.edu/typesca.cfm

There are many different types of ovarian cancer, and the area of borderline tumors is quite controversial. Although most borderline tumors are not aggressive and have good survival rates, there are a few types that can be more serious. In addition, diagnosising borderlines can be a problem.

Getting a correct diagnosis of the tumor type is very important since it will determine what, if any treatment beyond surgery is needed. Many of us have elected to have a second pathologist read our slides to determine what type of cancer (if any) we have. Two of the best places for this are Johns Hopkins - there is a pathologist there who specializes in borderlines (send me a PM if you want the name) and MD Andersen in Texas. You need not go - all of this can be done via express mail.

I am a little concerned that the gyn onc you were referred to hasn't seen your type of cancer before. Ideally, you would want someone with experience.

Believe me - this is the worst part - I was dxed with early stage ovca and it took some weeks before the diagnosis was clear and my treatment planed.



Dorrie
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  #4  
Unread 02-02-2004, 07:24 AM
partial hyst, found unfamiliar maliginancy -- another surgery

Hi! For what it is worth, I went in January 6 for a laparotomy to identify and remove an ovarian cyst. It turned out to be premalignant, also (low malignant potential was the medical term), and so the docs did a complete hysterectomy as well as removing my cervix, both ovaries, my omentum, and some lymph nodes. I was told that the omentum (basically it's a layer of fat that covers the intestines) can often hide cancer cells that have spread, which is why they remove it and some lymph nodes for pathology.

Thankfully, mine had not spread beyond the single ovarian pre-malignant tumor. My gyn onc wants to see me for periodic checks, but said no other followup is required. Oh, one more thing - I was told that this was quite unusual -- apparently, these cells are usually either benign or malignant, not somewhere in the middle. Hope this info helps and encourages you.
  #5  
Unread 02-02-2004, 07:27 AM
partial hyst, found unfamiliar maliginancy -- another surgery

Dear Janet,

I'm glad you found a second Dr. who is caring and compassionate. Ovarian Cancer is not just one strain. It can be one of over 30 "strains" of cancer. Serous cells produce a thin, watery fluid. Serous growths may be benign (serous cystadenoma), or malignant (serous cystadenocarcinoma). Fifty percent of such growths are malignant. Women between the ages of forty and sixty are most likely to develop serous tumors.
The omentum is the thin tissue that covers the peritineum ,intestines. It is a highly vascular tissue, which means it has a strong blood supply. I believe they are being cautious to remove this to avoid yet another surgery should your tumor prove to be cancerous. If it were me and they were in there and doing the pelvic wash I would want it removed as well.
I had an extremely rare tumor. It was examined by more than three pathologists before a final diagnosis was made. It was malignant. How lucky for me that my GYN made a judgement call while operating and "removed everything", otherwise I would have been back in Surgery .
Hope this helps you.
  #6  
Unread 02-02-2004, 09:42 AM
partial hyst, found unfamiliar maliginancy -- another surgery

Wow - you are all amazing -- thanks for your good wishes and your intelligent well informed feedback -- there is nothing more comforting or reassuring than connecting with others in the same situation and sharing experience, strength,hope, anxiety, etc etc. Since my second surgery isn't until 3/2 I think now that I've been digesting this for a couple of weeks, getting information, learning new words -- (nothing like a disease to build one's vocabulary, huh?) I'm going to call my gyno for a meeting just so she can say it all to me again and perhaps I will hear a little more of what she says and understand a little more about what is going on inside.

Your stories and the links are incredibly helpful -- and I cannot thank you enough for reaching out. Each of you are now in my thoughts and prayers.

Janet
  #7  
Unread 02-02-2004, 04:05 PM
partial hyst, found unfamiliar maliginancy -- another surgery

Janet, wow. Sorry to hear this. I agree with what everyone else is saying here. First, I assume your next surgery will be done by an gyn/onc. That is a MUST. It would also be good if you can find one with experience with your particular kind of cancer. He/she will know what to look for and what to do when they find it.

Yes, we all have a new vocabulary. But personally, I'd rather have just perfected my French!

Hugs,
Janie
  #8  
Unread 02-02-2004, 04:49 PM
partial hyst, found unfamiliar maliginancy -- another surgery

Hi Everyone -- the second surgery will be done by a Gynocological Oncologist and my Gynocologist. My Dr says he's a great guy and a great doctor of onc, so hopefully, she's right. He looked at my slides, and shared them with his brainiac colleauges and I guess all the kings horses and all the kings men were scratching their heads....so they will not know more until they go in a poke around. Can those of you who've had the omenectomy tell me about that....I had a major abdominal surgery (5 hours long) a couple of years ago (abscessed gall bladder - that was fun too) -- and the pain and recovery were horrible -- still hurts after two plus years. I think that's why I'm so nervous about that part. I know its probably the least of my worries --

I have made an appt to see my dr next week to talk to her again ... so I can hear it again, maybe clearer this time. Get more info.

You're right - the waiting in between stuff is frustrating ..... I'm not good at this whistling in the dark.

Thanks for being there and for being so responsive --
  #9  
Unread 02-02-2004, 07:40 PM
unusual stuff

Hi, I had a TAH/BSO after a fibroid was removed and found to have some unusual cells. The local pathologist didn't know what they were except unusual, so slides were sent to MD Anderson. MDA sent back this memorabl quote, " cells with accelerated activity of unknown malignant potential" !!!! So, not even definately precancerous but my Dr. and I agreed that safety was best and I had the surgery. Fortunately for me there was no problem with odd cells any where else except the spot on the uterus where the fibroid was attached and that is gone. I had my regular Dr. and a gyn./onc. assisting just in case there was an unexpected problem. They sampled the omentum and 2 lymph nodes just to be thorough.
My sister had a TAH/BSO as well as 28 lymph nodes and may omentum samples because she had a malignant uterine tumor, contained in the wall luckily. She had more post surgery discomfort than I did, mainly gas, and needed her full 8 weeks off to feel better before she went back to work. She said that the first day was the hardest so make sure you have enough pain meds agreed on before hand. I don't know if she has a gyn/onc.
I hope it all works out well for you. Best wishes, Barbara
  #10  
Unread 02-03-2004, 02:02 AM
partial hyst, found unfamiliar maliginancy -- another surgery

Taking out the omentum is usually part of a hysterectomy, especially when cancer is involved. Mine was taken out during my cancer surgery, so I don't know how it did or didn't feel pain-wise compared to a surgery where it hadn't been removed. All in all, surgery hurts. It took a good while to recover from the surgery, but I also started major chemo three weeks after, which definitely slowed down the healing process and created a few unexpected minor (but painful) complications.

I wouldn't worry about the removal of the omentum contributing to extra post-surgical pain. The most important thing is that you have a team of doctors conferring on this baffling cell type. It's wonderful that the head of the Cedars-Sinai team is involved, and I'm thrilled that you are having a gyn/onc perform your surgery. They really are the experts.

Are you in LA? I'm actually about one mile from Cedars.
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