<p>My mother passed from endometrial uterine cancer and gastric cancer. It was thought to be Lynch syndrome and I was tested as well. Lynch puts people at increased risk of multiple types of cancer.</p>
<p>Turns out I had a genetic variant of Lynch…but I got it from my father. Doctor feels that my mom had Lynch but did not pass it on to me OR that I may have an increased risk of cancer - but at this time medicine does not know enough to be able to test for this.</p>
<p>It has been recommended that I have a preventive hysterectomy…to be “safe not sorry.” I am so torn and conflicted as to whether or not to have it done. The hysterectomy would be done laparoscopically and robotically so less incisions and easier healing.</p>
<p>Any suggestions/feedback is much appreciated. I value the strength and wisdom of parents on this site and am looking for some clarity in my decision making. Thank you!</p>
<p>Do not make a hasty decision on a surgery that will prevent you from having children. Get a second or third opinion. Find out how long you can safely wait.</p>
<p>questbest, please answer three questions first:</p>
<p>You’re a parent, correct? So your childbearing years are behind you??</p>
<p>Have you met with a genetic counselor, or has your doctor explained how this will reduce your risk of cancer? When I googled Lynch syndrome, it focused primarily on colorectal cancer, with uterine and ovarian cancer being a “side effect.”</p>
<p>If you had the hysterectomy and your ovaries removed, obviously that would eliminate the possibility of having cancer in those organs. Has it also been recommended that you undertake a more frequent colonoscopy schedule?</p>
<p>I’m sure the discussion here will evolve, but if it were me, I would reduce my risk of such a serious disease as much as possible. Otherwise you’ll be worrying about the possibility of ovarian cancer everytime you get a stomach ache.</p>
<p>I had a total abdominal hysterectomy (and ovary removal) one year ago today. Due to very large fibroids. No regrets but there some things to keep in mind:</p>
<p>1) although the robotic surgery leaves you with a much smaller scar, you still need a full 6 weeks to recover because the internal healing is the same regardless of the type of hysterectomy you have. </p>
<p>2) If you have your ovaries removed, you will likely experience unpleasant menopausal symptoms (hot flashes, brain fog, dryness, etc). This means you will probably need hormone replacement therapy. Even if you keep both your ovaries, there is a risk you will be thrown into menopause because there is a chance that the hysterectomy will disturb blood flow to the ovaries. Ask your doctor now if you would be a candidate for estrogen replacement. Even if you plan to keep your ovaries, they sometimes have to remove them during surgery due to excess bleeding (happened to me).</p>
<p>Some women manage with no hormones after this type of surgery but a lot end up taking them. There are studies that show removing one’s ovaries without replacing estrogen results in a decrease in lifespan (just a year or so). So it is better to know going in what your hormone options will be.</p>
<p>3) Go over to Hystersisters dot com. All the information you could ever want on hysterectomies plus a very active forum. There are women over there have had prophylactic hysterectomies. </p>
<p>4) Don’t let all the negativity around having a hysterectomy scare you off. I haven’t experience any of the so-called ‘frequent’ side effects. Everything my GYN told me was right on. In fact, she had her own hysterectomy a week after she did mine. </p>
<p>The question really should be asked of the practitioners who know your disease. You need to hear more about, and from folks who have dealt with this syndrome. Have you found a Lynch information or support group on line? I found a great deal of information on one site. </p>
<p>I was the support for a friend with a rare genetic disease that also led to tumor formation. There were screening protocols, and physicians at major medical centers familiar with the disease who could advise. They are the folks you need to guide you. Best wishes! It is not easy to get this news.</p>
<p>If it would reduce my chances of getting cancer by a relatively significant amount and my child bearing years are behind me, then yes I would have a hysterectomy. Going into menopause is a mild side effect compared to getting cancer. I now though that it is not so clear cut and I think meting with a genetic counsellor would help in your decision making process.</p>
<p>Thanks so much for all your responses. I am past childbearing years and have gone through menopause. The doctors believe my mother may have had Lynch but my genetic testing is inconclusive and, at the present time with what medicine knows, there is no way to tell if I have any increased chance of having uterine cancer or not.</p>
<p>I have met with 3 doctors who are known in this field and all offer what they call an “educated guess” of maybe. They feel that “because my mother had aggressive uterine cancer it makes sense to have a hysterectomy” but nobody can tell for sure if I have an increased chance of developing uterine cancer or not. </p>
<p>It is a guessing game and its very tough for me to make a decision that I feel 100% comfortable with!!!</p>
<p>Since you are past child bearing, there are more pros than cons to having the surgery. I had surgery eight years ago where petty much everything was removed, with the exception of one ovary. I’m still waiting to go through menopause and can’t say I’m in any hurry for it. At the time of my surgery, I also had my colon removed due to family history of colon cancer and the definite genetic markings to get cancer. </p>
<p>It was a huge refief knowing that that piece of me that would cause cancer was no longer inside me. I hadn’t realized how stressed I was subconciously until after the surgery. If they can do your surgery via laproscope, I would do it.</p>
<p>Hello. Unusual set of circumstances. You get tested for a rare gene based on one parent and are told that you happened to get it from the other. </p>
<p>It might help to know of there is unusual cancers on your f side as that is where they are saying it came from. Fwiw hysterectomy tends to be a very safe surgery in any case. </p>
<p>I will say that I think I am seeing some financially based robotics enthusiasm unfortunately in my community.</p>
<p>I guess the question I am struggling with is, is it a good decision to have surgery to remove my uterus to prevent a possible uterine cancer (because my mother had that). Tough decision given that I am completely well now.</p>
<p>Have any doctors you consulted been able to give you anything more definitive then maybe? Is it a 50%/60%/70% probability that you will develop uterine cancer? Are you a candidate for the minimally invasive hysterectomy procedure? </p>
<p>I had a hysterectomy 10 years ago. Never had estrogen replacement therapy, never had a hot flash; I was lucky. I had had no problems following the surgery. I suffered through 9 years of fibroids with periods so heavy that I was anemic and had to stay home for the first day of my period each month. I kept putting off the surgery in the hopes that menopause would happen and the fibroids would shrink. Honestly, I should never have waited.</p>
<p>questbest, I’d go for it. Without a uterus, you are 100% certain of never getting uterine cancer. With a uterus, you’ll either get uterine cancer or spend your life concerned that you’ve got it.</p>
<p>When I was trying to decide whether to have my hysterectomy due to very large fibroids, my GYN told me the most common thing she heard from her patients post-hysterectomy was ‘I wish I had done this years ago’.</p>
<p>There * is * a sense of relief knowing you will not get cervical and/or (in my case) ovarian cancer. Every woman I know who had a hysterectomy told me they were very glad they did it. But no one can tell you that you should do it. Only you know if the threat of cancer is going to cause you stress on a regular basis. Removing an organ (any organ) is not without risks and potential side effects but those are the exception not the rule. However, I read somewhere that hysterectomies are the 2nd most common surgery in the US (after C-Sections), so you would be in good company. :)</p>
<p>you will certainly have the surgery if you do get it, so anythig you can do to prevent it ,is worthwhile. especially since yiou have some genetic componet and your mom’s was aggresive. i had breast cancer in both breasts and wanted a propholactic in the second breast to avoid it but was too late I already had it. Cancer stinks if you can avoid it, do it.</p>