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Unread 02-18-2003, 07:19 PM
hysterectomy for ovarian cancer prevention

I am new to this site and just posted once but it asked me for subject line and message disappeared, so I will try again. I may be posting twice??? Question: Has anyone had hysterectomy to prevent ovarian cancer? My mother died 8 years ago at age 72 with OC. I am 57 now and no gyn problems. I hate to "fix" something that isn't "broken". I have been putting off this decision, but am seeing doctor next Thursday.
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Unread 02-18-2003, 07:34 PM
hysterectomy for ovarian cancer prevention

s luvzlife

I was diagnosed with stage III ovarian cancer at the age of 49.
The cancer center where I am treated set up strict guidelines for my three sisters.
A pelvic exam every six months, including a recto-vaginal exam. This is the method used where ovaries are best palpated.
A vaginal ultrasound yearly.
A ca 125 blood test yearly.
Has your gyn followed you in this manner?
Also since my diagnosis I have learned there are other ways to increase prevention. For a premenopausal woman, taking birth control pills for up to five years. This is done to decrease the number of times a woman ovulates. You may want to share the above information with your daughters.
If you are truly interested in surgery, just have your ovaries removed. But even removing ovaries is not a 100% guarantee against ovarian cancer. There is always the slim chance you could develope primary peritoneal cancer. Which is the sister of ovarian cancer.
Hope this helps.

Unread 02-18-2003, 07:57 PM
Have been followed

Thanks Karenann. I HAVE been followed in this manner since my mother died. She, by the way, had no ovaries but got ovarian cancer, so I do know that this is not fool proof surgery. This is another reason for my reluctance to have it. I have seen several doctors over these years and always ask their opinion. ALL doctors have said get them out. I have held off, awaiting the new blood test to detect ovarian cancer early to be approved for screening, but had a light bulb moment and realized that even with that test I would already have ovarian cancer in order for the test to detect it. So, having hysterectomy MAY help prevent my getting it to begin with. Have your sisters considered hysterectomy or been advised by any doctors to have hysterectomy? I haven't quite learned to do the "smiles" yet....this is more important right now....sorry.
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Unread 02-18-2003, 08:03 PM
hysterectomy for ovarian cancer prevention

Hi again. I recently attended the Society of Gynecologic Oncologist Conference where I learned that unfortunately the new early detection blood test is still in a very early phase of the trial. At best still three years away.
My sisters have followed the advice given and are comfortable doing that. My youngest sister was found to have a moderate size complex cyst with a slightly elevated ca 125. She was 39 with three small children and opted for the radical hysterectomy.
Surgery is the only way to know for sure. Her cyst was benign. But I believe she is still relieved to have her ovaries gone for good. Even with the tiny risk remaining, it still improves the odds greatly.

Unread 02-19-2003, 07:06 PM
Preventative hysterectomy for ovarian cancer

Hi- I can really relate to your concerns. My sister was diagnosed with stage 3 primary peritoneal cancer two years ago at age 46. She had very minor symptoms- some pressure- until right before she was diagnosed. She suddenly became very bloated. All her tests were negative, except her CA125 was over 1000 (it's supposed to be under 30). She is currently on her 3rd round of chemotherapy, and will probably always be on some kind of chemo. She is very brave, and fighting for her life.
Her doctor said I should have my ovaries removed, since I had all my children. I had no gyn problems at all. My doctor, and a second opinion, agreed. After much deliberation, I had my ovaries, tubes, and uterus removed through abdominal surgery. I had no complications. Went to Europe on vacation 3 weeks later, and returned to teaching at 4 1/2 weeks (end of summer). It did take months- 6months- to feel 100%, but it didn't stop me from doing anything, AND it gave me peace of mind. I still have the CA125 every 6 months. EVERYONE should have it yearly. I also take hormone replacement- Premarin.
It is a silent disease. It was always on my mind. I felt I had to be proactive. I am happy with my decision, and I will recommend it to my daughter and niece when the time comes.
I hope this helps. ~Gail
Unread 02-19-2003, 09:24 PM
hysterectomy for ovarian cancer prevention

Hi Luvslife!

Have you considered getting a consultation with a Gyn Oncologist by any chance? They may be able to shed more light on what your risks may be than a regular Gyn since this is their specialty.

I was also wondering if anyone had recommended checking into Gene testing. This test may also be able to shed some light on your risks. I know that the BRCA 1 & 2 gene can also be related to Ovarian as well. The thing is that I'm not sure if this would come into play in ALL cases.

My old oncologist after my surgery wanted both of my sisters to get checked every six months due to both my age and my mom's age when we were diagnosed. I had my surgery when I was 38 and my mom's cancer most likely began around the same time, we lost her at age 44. So, while my Dr wanted them both to be rechecked every six months, neither really has followed up very well and not completely their fault, their other Drs don't see the need.

Anyway, I hope you'll be able to find as much information as possible and be able to make a decision that you are comfortable with.


Unread 02-19-2003, 10:16 PM
Prophalactic Hysterectomy

Hi Vicki-
I read your complete story. You've put up a brave fight.
Please encourage your sisters to be tested regularly.
I was talked out of the BRCA gene tests. First, they are very expensive. Second, if it was positive, I would have had the surgery. If it was negative, I would still worry, because it is only 80% accurate. Therefore, I opted for the surgery. I know I still can get peritoneal cancer, but I'm hoping my chances are better this way.
My second opinion was with a GYN/Oncologist, and he did the surgery.
The one thing I learned through my surgery, and my sister's illness, is that you must be your own advocate. You must educate yourself, and make the doctors listen to you. Luckily, some of my friends are doctors, and guided me through the process. But I, also, read everything I could on the internet.
This is a great website.
Stay well and good luck with your sisters! ~Gail
Unread 02-20-2003, 06:47 AM
hysterectomy for ovarian cancer prevention

Hi Luvslife

My mother had breast cancer many years ago. In August 2001, she was diagnosed with ovarian cancer. Her gyn onc suggested immediately that I start ultrasound/CA-125 screenings and consider genetic testing. As I was getting around to all the appointments, my CA-125 test came back elevated. Nothing unusual showed up on a CT scan, MRI or PET scan. I opted for what we assumed would be a preventive BSO (ovaries only), done through an abdominal incision so that a complete inspection could be performed.

My gyn onc prefers removal of the ovaries only when the surgery is truly preventive, but did tell me that it is not uncommon for women to be anticipating preventive surgery and then find out they do in fact have ovarian cancer. As luck would have it, I has extremely early stage ovarian cancer and had a complete hyst done.

Hereditary cancers account for only a small percent of ovarian cancers, but when they do occur, they can be devestating for a family. Good luck in your decision process.

Unread 02-21-2003, 07:40 PM
hysterectomy for ovarian cancer prevention

It was good for me to see your posting and to read all of the replies. I just met with a gyn/onc who also recommended TAH as a preventative measure. It makes it a harder decision when there is no pain or discomfort. It seems for so many, the surgery is a relief of years of suffering. In our case, a TAH relieves worry.

I had breast cancer as well as colon cancer. I was on a website on ovarian cancer recently and there were about 4 or 5 risk factors associated with ovarian cancer...one was breast cancer and another was colon cancer. I am currently coming to terms with everything.

With a family history of ovarian cancer, it can certainly mean an elevated risk for you. Have you gone through genetic testing? I tested negative for the BRCA I and II, but my Dr. said that he thinks I may have a mutation of that gene or some other. It is unusual for someone of my age to have had 2 adenocarcenomas.

I will continue to look for your posts to see what you decide. I am aiming for surgery this summer. It will be nice to take the summer months off of work.
Unread 02-22-2003, 05:56 AM
hysterectomy for ovarian cancer prevention

Because I am new to the site I only looked back when I got an email saying that I had an answer to my post. I had no idea that all of these other posts had come in. Gosh! They were so helpful. I have read and read all week on the Internet medical sites, but your posts are more educational because YOU have been there. I do have appointment with gyn-oncologist this coming week and may be able to join a clinical trial as well because he is one of the doctors on the trial. It will be exciting to not only get MY problem solved, but also contribute information to other generations of our daughters. Thanks to you all for your stories and help. Luvzlife

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