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Considering Prophylactic Hyst and BSO Considering Prophylactic Hyst and BSO

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Unread 04-10-2003, 07:26 AM
Considering Prophylactic Hyst and BSO

Hi, I'm new here. I don't really have a question but just needed to talk to someone.

My mother had a hysterectomy in her mid-thirties that found she had severe endometriosis and endometrial cancer. I knew a bit about it but had no idea until recently that it increased my risk for both. I have been told that here in the UK her case was so rare (no risk factors etc..) it was perhaps one in two million. So rare they don't how at risk I am - could be very at risk maybe not at all.

On Friday, after having abnormal symptoms for only a couple of months I was surgically diagnosed with and treated for endometriosis. My uterus was also checked (all clear).

A few days before my surgery my gyn/onc said that if I was found to have endometriosis and at risk for endometrial cancer perhaps I might want to consider having my uterus and ovaries removed at some point. He will do it any time I ask.

Endometriosis on its own would not be a problem. Niether would being at increased risk for EC. But combined, I have the following problems:

1) Both have common symptoms. If I have ANY abnormal symptoms, I would have to go through full investigation again. Any endometriosis symptoms could mask onset of EC

2) There's the possibility of endometrial cancer developing in an endometriosis site OUTSIDE of the uterus anywhere in my pelvic cavity. If that happens I'm in big trouble. Hard to detect, hard to treat.

3) Endometriosis and cervical erosion/ectropion (also treated on Friday) both tend to occur when there are high levels of estrogen in the body, as does EC. So my body already has the conditions favourable to EC.

4) My peace of mind. I worry alot. If I don't, when will the sleepless nights and bad dreams end?

When he first suggested it last week I was shell-shocked, then completely against it. But as days go by I am feeling less and less attached to my 'bits'.

My follow-up appointment is in 2 months time when we will discuss options so I don't have an urgent decision to make.

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Unread 04-10-2003, 07:44 AM
To do it or not . . . .


It's a hard decision. You DO have risk factors. There's a lot to be said for peace of mind. (I have things going on related to breast cancer.)

Following is a link to a similar thread. Nancycarol's circumstances (type of cancer) are a little different than yours, but in the end she needs to make a decision on having hysterectomy as a preventitive measure.

Good luck with your decision.

Mary D.
Unread 04-11-2003, 08:44 AM
Considering Prophylactic Hyst and BSO

Along a different line, my TAH/BSO was prophylactic really. I'm a DES daughter, and I started to have abnormal paps-had a LEEP in 1999 due to CIN II. (when just one year prior was normal-DES daughters transit times for CIN is faster; I missed my 6 month check-up; I have to go twice a year due to DES) Continued to have "abnormal" paps, and then my cervix became impossible-clenched up. My GYN could not get into my endocervical canal anymore to get good paps that I needed-my cervix wouldn't budge. She anesthesized me and all. She even sent me to a oncologic gyn just to see if he could manipulate through the thing. He suggested a procedure that my regular dr had already done. The pap he took that day also came back CIN II. (of course a repeat one by my dr came back normal-it was so weird) Again, all of this was based on what area could be sampled. There was the great beyond that couldn't. So there would have always been a question of whether potential cancer cells were developing that couldn't be caught. Due to my DES status which has its own risk factor, I didn't want to take the chance. I'd already seen myself go from normal to II in a year.
I'm grateful to not have the fear anymore.
I also had underdeveloped, non functioning ovaries since birth, and I always feared cancer there too since they were atrophic "duds". So for me, the hyst gave me relief.
Good luck with what you decide.

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