has anyone kept ovaries against advice? or have HNPCC?

Hi,

this is my first time on this site. I am 44 years old and have just been diagnosed with endometrial cancer. They are recommending i have a total hysterectomy including ovary removal.

I learned that I do not have ANY of the normal risk factors for this cancer, and am younger than most who get it. There is a family history of colon cancer, though, and I have been told that I probably carry the gene for Hereditary Nonpolyposis Colorectal Cancer cluster, (HNPCC) which can manifest as endometrial cancer in women.

There's no cancer in the ovaries as far as we know, and at 44, I am just not ready for menopause. I am thinking of telling the docs that the ovaries have to stay. It's bad enough enough to know that I have cancer and that even after the hyst, I will have to be tested for colon cancer every year...on top of all this, to go into surgical menopause with no hope of HRT at my age is just not something I think I can live with.

Did anyone here keep their ovaries with a dx of endometrial cancer? Any one else have HNPCC?

Hi,

Welcome to Cancer Concerns. I was diagnosed with endometrial cancer in August after a hysterectomy for what was supposed to have been for the removal of a large fibroid. It turns out that the "fibroid" was cancer that had invaded up to 75% of the way through the muscle of my uterus. I was 39 at the time, and prior to my surgery, cancer had not been mentioned; I also did not fit the "usual" profile. I had asked my doctor to leave my ovaries if they looked OK, but once cancer was found, he removed them.

Endometrial cancer is known to be estrogen dependent, which is why the ovaries are taken. Also, the cancer can spread from the uterus to the ovaries, which may not be found until histopathology has been completed. This information is needed to help determine the stage of your cancer, and will determine whether a TAH/BSO is all the treatment that you wil need, or if radiation and/or chemotherapy will also be required. My own cancer had spread from my uterus to the cervix, and was also found in one fallopian tube.

I asked my doctor about hormone replacement therapy, and he said that I should not take it. However, some doctors do give their patients HRT-yours might. I have only had a few hot flashes, and in general feel better than I have in years.

I would strongly urge you to follow your doctor's recommendations. In the big scheme of things, the loss of your ovaries is a small price to pay in exchange for a long and cancer-free life. Also, is your doctor a gynecological oncologist? They are really the experts when it comes to cancers of the female reproductive system.

Finally, Fran Drescher has written a book about her experiences with endometrial cancer called "Cancer Schmancer" that you might enjoy. She is best known for her TV show The Nanny, and was misdiagnosed for years before her cancer was finally diagnosed.


I wish you the best of luck,

Jan

Thanks for your reply. If you don't mind my asking, what effect did losing your ovaries have on your sex life? I think this scares me more than cancer.

Hi,

Although every woman's reaction to the loss of her ovaries is different, in my own case, my sex drive, if anything, is much greater than it was before surgery. I have had no problems with either arousal, lubrication, or the "Big O." I think that if your sex life is great before surgery, than there is a very good chance that it will be as good or better after surgery.

Even though your doctor may not allow systemic HRT, there are hormone creams that can be applied vaginally that are of a high enough strength to help with vaginal dryness or elasticity, but not so high as to enter your circulation.

Jan

I didnt have cancer but before I had my op I tormented myself as to whether to let them remove my ovaries or not. In the end although they thought the ovaries were healthy I let them do a TAH/Bil Oopherectomy. At the post op check they told me that they had found a solid mass in my right ovary!! It didn't show up on the scan. Turned out to be just a cyst. I am now on Premarin 0.625mg and feel great. I was lucky. Be lucky.I'm wishing you well!!

With cancer, a gyn/onc is the person to have do your surgery. If he/she recommends removal of the ovaries, you certainly can ask why but I'd never go against a doctor's advce at this point.

I could relate to your post. Although I have not been tested for the HNPCC gene, I am pretty sure I have it.

I am 43 years old and am scheduled for a TAH BSO on April 9th. At the age of 36, I was diagnosed with colon cancer. My follow up for the colon cancer included annual mammograms as well as regular pelvic ultrasounds. Thankfully, these tests found my breast cancer at an early stage and also showed ovarian cysts. Neither of these would have been detected until it was too late without these diagnostic procedures.

I have the same concerns about not producing the hormones, and how that may effect me. I am not a candidate for HRT. I will, however, be relieved to not have the fear of ovarian cancer hanging over me. These glandular cancers can show up in the colon, breast, ovaries or uterus. I am not a Dr., but I would heed his advice. Ovarian cancer is so difficult because it is normally not detected until its later stages.

Good luck! I can really relate to what you are going through!

Hi Skygarden,
I was diagnosed last year with endometrial cancer and was scheduled for a TAH/BSO. The ultrasound and CT scan showed the ovaries to be normal. My CA125 pre-surgery was 18.

I hestitated about having my ovaries removed after a friend who is in alternative medicine went on about it being unnecessary and harmful. She said I was letting my fear influence my decision. So I talked with both my gyn and the gyn onc, but they were firmly against leaving them in, so I finally agreed.

Well, two days after my surgery the path report came back showing a Stage 1C/Grade3 ovarian cancer in my right ovary! My doctor was as shocked as I was because she said the ovary looked perfectly normal. If I had insisted on keeping my ovaries........... close call.

I don't tell you this to frighten you, just to urge you to take your doctor's advice. They know what they are talking about. And my "friend" who urged me to keep my ovaries? After I told her the diagnoses, I've never heard from her again.

s and best of luck.

s Skygarden,
A Dx of cancer is no fun and it sounds like you're high risk. I also was Dx with uterine cancer and I had my ovaries removed.

I went through natural menapause prior to the Dx. Knowing I was high risk for estrogen receptive cancers, I did not take any HRT. When you know HRT is not an option, you tend to deal better with the symptoms.

As for sex, having a new lease on life also gives you a new lease on sex. Your euphoric feelings from beating cancer extends to the rest of your life.

Good luck and be sure to keep posting.
Laura

Hi there: I know your message is over two years old but I wanted to email you because I, and my two sisters, have just been diagnosed with HNPCC. We are told that hysterectomies might be beneficial for preventative reasons. I am scared about bringing on "surgical menopause". If we have HNPCC, are we even allowed to take Hormone Replacements such as Estrogen? Thanks for any help you can be. I really want to know how you are doing.

Sincerely, Karen Amlin