Endometriosis Associated Ovarian Cancer

Hi,

I'm wondering if anyone has been diagnosed with endometriosis-associated ovarian cancer as a result of having a TAH/BSO. I've had endometriosis for 20 years and have a family history of ovarian cancer (2 maternal cousins). I am planning on having a total abdominal hysterectomy (TAH) with bilateral salpingo-oophorectomy (BSO) by the end of this year with a tummy tuck to boot!

I would love to hear from other women who have had the same procedure. Did anyone have this done at a teaching hospital as opposed to a community hospital?

Thanks,
Impermanence

I have endometriosis for which I had my hysterectomy. Though female cancers are in my family tree, both sides, no one bothered to share the specific cancer types with those of us who need the information! Thus, my doctors and I made the decide to retain both of my ovaries and not assume that ovarian cancer was an higher of a risk for me than the general population. So I have both of my ovaries!

But aside from that, I wanted to ask if you are seeing an endometriosis specialist? Or are you seeing a knowledgeable oncologist? The more skilled your surgeon when it comes to endometriosis, the better. If cancer is a possiblity, an oncologist can have some valuable information and skills.

If you have specific endometriosis questions you might want to pop over to our Endometriosis Support forum.

Many best wishes to you! S

I had an lavh/bso for stage iv endometriosis. I had it done at a private hospital.

Thank you, Weiser & LookingforaSis, for your replies. I saw a GYN oncologist yesterday and she would like me to have the operation done at the teaching hospital where she spends most of her time. She comes down once a month to my area which is 5 hours south of the teaching hospital. One of my concerns about having my operation at a teaching hospital has to do with the fact that someone other than herself may be doing the surgery (e.g., residents). And, someone other than the Plastic Surgeon may be doing the abdominoplasty. I used to work as a nurse at a teaching hospital so, I've seen this occur. Then, there's the expense of staying at a hotel for one week with my husband and son...eating dinners out...boarding our dogs, etc. I've decided to make a list of Pros and Cons for having my surgery done here vs at a teaching hospital.

Hi Impermanence

Does your doctor suspect that you have ovarian cancer?

Here is a link with the risk factors for ovarian cancer:
http://www.mayoclinic.com/health/ova...N=risk-factors

I had my surgery done at a teaching hospital. My gyn/onc was in the operating room along with lots of residents and fellows. We need more gyn/oncs. I had no problems with having mine done at a teaching hospital and actually felt like I got better care that way. Yes, there were times I wished there were not so many people coming into my room. I looked at it this way, I was helping those doctors learn and since mine was early stage ovarian cancer, I was not your typical ovarian cancer patient.

Is there someone who could come to your home and take care of your son during that time. They could also take care of the dogs. I don't know how old your son is, but that may be too long of a time for him to be hanging around a hotel/hospital. That someone could bring him to visit you one of the days you are there when you are feeling more up to it too.


Jane

Hi Impermance,

I had my TAH/BSO at a teaching hospital, the University of Minnesota. There were a lot of people in the room at times but I felt I received good care. I had my surgery on Thursday afternoon and went home Saturday. Things went quite well. If there is any chance at all that there may be cancer present the onc./gyn is the one you want doing the surgery - even if a fellow assists the surgeon is there to guide them and would take over if something was beyond the fellows capabilities. I had two large endometriomas, no cancer My maternal grandmother died from ovarian cancer, my mom had endometriosis and breast cancer (at age 70). She's doing great.

I understand wanting your family with you when you have the surgery. Does the hospital have anything set up for out of town families? Maybe check if they have accommodations available or hotels that offer discounted rate. It's worth a shot.

I wish you well!

Teresa



I wish you the best!

Hi Jane & Teresa,
Thanks for your replies. There is a possibility that I may have ovarian cancer. I have two maternal aunts with ovarian cancer and, I have had thyroid cancer. I have seen a GYN Oncologist 3-4 times since 2002 for recurrent ovarian cysts. Also, I had genetic testing done (BRCA 1, BRCA2). I tested negative for these two breast/ovarian cancer genes. When I underwent additional genetic testing for PTEN, which links thryoid cancer with kidney cancer and melanoma....all of these are in my immediate family, I was recommended to have transvaginal ultrasounds every 6 months along with CA125 blood tests every 6 months. The CA125 blood tests were normal but, the ultrasounds revealed intermittent ovarian cysts, numerous fibroids, adenomyosis and intermittent thickened endometrial lining.

A big plus for having my surgery done at a teaching hospital is the fact that no-one at my hospital will know what I had done unless I choose to tell them. You see, I work as a nurse at our local hospital and I've been there for awhile. If I had surgery there, word would spread like wildfire that I had a tummy tuck and (possibly) liposuction in addition to a TAH/BSO. I know that I shouldn't care what other people think but it's hard to ignore 'nosey Nellies.'

My son is 17 and could stay at home, however, I would like him to be there along with my husband. The two of them can play in the city inbetween visiting me at the hospital, etc.

I really appreciate hearing from you and others on this listserve. It is very helpful and supportive!

Hi Impermance - I'm sorry to hear about your thyroid cancer. I hope you have recovered fully from that. Is there a connection between thyroid and ovarian? I hope not.

I don't blame you for wanting your privacy I totally get not wanting people knowing unless you want to tell them!

I have not had the BRCA testing and probably will not for a while. My mom would not do it and does not want to know and if I were god forbid to be positive I honestly don't think my mom could take it. I have a daughter so at some point I will want to find out if I carry the gene but for now ignorance is bliss. The thought of no estrogen doesn't make me happy..... My mom's oncologist however feels the risk is less than 5% so that's good news. My gyn/onc thought I should find out as knowledge is power. I am so glad that you do not carry the gene. I am ignorant of the PTEN gene testing. I have however had a high CA 125. Just before my surgery it was 122. At that point they referred me to a gyn/onc. Those were scary days but all turned out well.

Do you now have cysts that are not resolving? The thickened endometrial lining can be caused by where you are in your cycle mine went from 5 - 16 depending on what time of month the scan was done.

Take Care and try not to stress!

Teresa