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Laparoscopic Hysterectomy Laparoscopic Hysterectomy

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  #1  
Unread 04-01-2005, 09:06 AM
Laparoscopic Hysterectomy

First let me say that I am a rare breast cancer suvivor. I was diagnosed in 1998 with adenoid cystic carcinoma of the breast. I was misdiagnosed for 3 years with a 'benign' lump (this is a very slow growing cancer). I finally insisted on having the lump excised when I saw that it was growing hands and feet. It was cancer and the tumor was large. I did research and chose excisional surgeries to remove the tumor and achieve clean margins. I tell you this for only one reason, to help you understand my reason for asking for aggressive treatment in my hysterectomy.

Three years ago I started having a few sharp pains on my right side and a weird discharge. My gynecologist checked it out and said we would watch it. It would come and go, but never stay very long. Two years ago he decided to do an ultrasound and found that I had a 3.7 cm cyst on the ovary, but no other changes. Once again, he advised waiting and watching.

This year, I had a very definitive ultrasound done by an excellent doctor. He found that my endometrial lining was thickened, the cyst was now 5.7 cm and had turned into a complex cyst, and the right ovary had expanded to 2 1/2 times it's normal size from the previous film. I am 56 and have been postmenopausal since 2000 when I was undergoing radiation treatments for the BC.

I am a cancer advocate who authors and operates websites and support networks for rare adult and pediatric cancers. I do a lot of medical research for those newly diagnosed. When I received the results from that ultrasound, I did the most natural thing for me - I researched my situation. I realized that this could very well be cancer. I have several members that have multiple cancers and it is more common for breast cancer survivors to have other gynecological cancers than the non cancer survivor population.

I asked to see a gynecological oncologist. After arguing with him about what I wanted done versus what he would like to do, and sending him supporting research to back up my requests, we have decided on a total hysterectomy. He still has not answered me on whether he will take the cervix and why. He does not offer any information and assume that what he says is gold and you should just shutup and do what he tells you (yes, ladies, he told me to shutup twice when I was asking questions). But, I am a good match for him and I will not let him touch me until I have all of my questions answered. His surgical credentials are top notch, that is why I deal with his arrogant obnoxiousness.

I am going to be having this hysterectomy on April 8th. It will be done laparoscopically. From what I have read, they remove the cyst by using a mesh bag to retain all the contents, then they remove it. I have questions and concerns about this procedure being done laparoscopically because of the size of the ovary and the fact that I would not want one cell sloughing off during surgery. So, it would sure help me if I could hear from others who have had this surgery done, with oversized ovaries, laparoscopically.

I thank you for any help you can give me. Take Care, Sharon
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  #2  
Unread 04-01-2005, 10:21 AM
Laparoscopic Hysterectomy

WOW--what a story it sounds like you have been through so--and congratulations on being a survivor, as I can not relate to the BC part I did also have cycts on both of my ovaries and had an LSH done 2/24--I had both ovaries-tubes-and uterus removed at the time of the surgery the dr said since all my paps came back normal he would leave my cervix since it helps support your pelivs etc.. however once he was inside and if he saw that it was damaged or effected then it would be removed--I woke up feeling good and still had my cervix.

I know this is a top notch dr that you are going to but you are a human who has feelings and deserve answers to your questions--next time he tells you to sut up tell him no answer me

I wish you the best of luck and you are doing the right thing doing research--I think I can say for all the princess's that we all did as much research as we could before going to the castle
  #3  
Unread 04-01-2005, 10:55 AM
Laparoscopic Hysterectomy

Is cancer suspected? If so, has a CA 125 blood test been done to get an idea of where that marker is? It is my understanding that if cancer is suspected, they like to do a TAH. They can do a frozen section and perform addtional biopsies if needed. This way they can be better sure cysts come out as one, do other biopsies and lymph node samplings and a pelvic washing to make sure they get all.

If cancer is not suspected, the laparscopic would be fine.

Now it is also my understanding that some doctors are moving towards laparscopic even when cancer is suspected.

It is not an easy decision to make when you can do either procedure.

s
Jane B
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  #4  
Unread 04-01-2005, 05:10 PM
Laparoscopic Hysterectomy

Forgive me for reposting, but the information I want to share is important. I am afraid that some of you have been given incorrect information. From a major study:
The use of cancer antigen 125 (CA125) test values to screen for the presence of cancer should be discouraged. A large Swedish study has shown that approximately 50% of women with stage I ovarian cancer have a normal CA125 test value. In addition, a very high false-positive rate can be caused by pregnancy, endometriosis, cirrhosis, and pelvic or other intra-abdominal infections.

That is not the only study that says this. From what I have read, if there is a confirmed diagnosis of ovarian cancer, the CA125 is very valuable to follow the effect of the cancer. But, doctors have recently found that if it is used as a diagnostic tool, it is not useful. Stage I ovarian cancer does not always show an elevated CA125. In fact, doctors are now reporting that the CA125 is not elevated until the cancer has progressed to a stage that may not be treatable. If I am going to have a cancer, I want it to be Stage I!

John Hopkins CA-125
  #5  
Unread 04-01-2005, 08:41 PM
Laparoscopic Hysterectomy

I have a diagnosis of complex hyperplasia with atypia, but the MRI showed that it seemed to be limited to the lining of the uterus. My gyn onc will do my surgery by laparoscopy, but remove everything intact through my vagina (rather than chop it up inside). He'll also sample lymph nodes and do a washing. I gather this is a a pretty new approach (it differs from a LAVH, in that none of the surgery is done vaginally, just the removal of what my doctor tactfully calls "the specimen"). My doc has been part of a clinical trial testing this for women with uterine cancer and it has had good results.

I'd be concerned with cells spilling, too, but I can't imagine your doc would be taking that risk. I hope you can get him to describe the procedure in more detail and tell you how it will prevent spilling of cancer cells, if there are any.

Wishing you all the best,
  #6  
Unread 04-02-2005, 12:15 PM
Laparoscopic Hysterectomy

He won't. I tried. But, when I read your post a light bulb went on in myhead. I am going to call his surgical scheduler and see exactly what procedure he has chosen to do. Someone in that office must know that other than him, or the OR would not be properly equipped. Once I know what he is doing, I can do research on my own. Thank for 'turning on the light switch'.
  #7  
Unread 04-02-2005, 04:57 PM
Laparoscopic Hysterectomy

Sharon

Let me clarify myself a bit. I did not mean to imply that a CA 125 was for diagonsis. From my personal experience and many other women around the world I have been in communication with the last year and a half, the CA 125 is used as a tool. The only definitive way to diagnose ovarian cancer is usrgery. CT scans, CT/PET scans and transvaginal ultrasounds are used to help determine the possibility.

Yes, there can be false positives and there are false negatives. I still stand by if cancer is suspected that one should be done before surgery and sometime following surgery. This way, it can be determined if it is a valuable tool for the individual. I have known women who had low CA 125's and had Stage 3 or 4 and women who have had higher numbers and Stage 1 or 2. The important thing is what it does following surgery and during any other treatment. If it goes down, it is probably pretty useful for that person.

Mine WAS elevated and I am Stage 1. I am basing most of my information from my oncologist (also at a major medical/cancer center) and the personal experiences of many women who have been diagnosed with ovca.

You asked for opinions regarding the type of surgery. I gave mine and asked a few questions. Did not mean to offend. Until a better test is out there, this is what is available as a tool.

Jane
  #8  
Unread 04-02-2005, 06:11 PM
Laparoscopic Hysterectomy

Hi, lanesharon


Yes, this is correct. The ca-125 is not recommended as a diagnostic tool when used alone, but is very good as a way to track treatment success.
Also correct: the only way to get a confirmed diagnosis is via surgery. "They" dont 'always know what they are dealing with until they get in there, and can look at the mass and the surrounding organs, and biopsy other tissues; thus being able to make an accurate diagnosis and properly stage the cancer.

I believe a TAH is in order for this to really be done thoroughly. When my surgery was done, they biopsied several lymph nodes, the omentum, 2 sections of the diaphragm, several sections of my abdominal wall, the paracardial gutter, and my appendix. I just am not sure that all that can be done with a LSH. of course, there was a STRONG suspicion that cancer would be found, which is why a TAH was planned for. Do they think your mass is malignant?
They were pretty sure mine would be, and were able to plan accordingly.

Have you checked out our cancer concerns forum? You might want to post your concerns there..I'm sure there will be many wonderful ladies who may be able to offer you their experiences.
check it out at : https://www.hystersisters.com/vb2/for....php?forumid=6
All the best to you, please let us know how you are making out with getting answers from your doctor!
Hoping your mass is VERY benign,
XOXO
K9

  Quote:
Originally posted by lanesharon
From a major study:
The use of cancer antigen 125 (CA125) test values to screen for the presence of cancer should be discouraged.
John Hopkins CA-125
  #9  
Unread 04-04-2005, 05:52 AM
Laparoscopic Hysterectomy

Hi Sharon,
I was dxed with possible endometrial cancer mainly based on symptoms and a vaginal ultrasound which showed a very, very thick lining. My preference was to have laproscopic surgery and I discussed this as an option with 3 gyn/oncs all highly respectable including one at a top notch cancer center; all three recommended a TAH/BSO and counselled against having the surgery laproscopically. Among their reasons for a TAH was to allow a good inspection of lymph nodes and to minimize possible cell escape. Just my experience for what it's worth and I am not talking about possible ovarian cancer.
I am glad to see you are so proactive and question your doctors. Please don't let that doc get away by telling you to "shut up", you have a right to an answer. BTW, I am presently having "discussions" with two dermatologists re the right course of action for a skin problem (after a biopsy mix-up) and the more arrogant one likes to "talk around certain issues;" this is maddening but I will continue to press him as his treatment will affect MY body not his.
Please let us know how you make out.
Blessings, peggiesue
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