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Don't want the surgery Don't want the surgery

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Unread 10-19-2003, 04:34 AM
Don't want the surgery

hello been here before but it's been awhile. Last April I got this result from a biopsy. " Complex Hyperplasia with atypia and focal areas suggestive of adenocarcinoma. DR reccomended Hystrectomy. I went to Baltimore to a GYN/Onc. for a second opinion. she had her pathologists read the report and they agree with the first. Between the time I got the results from the second DR, I received a newsletter from HERS foundation. Have no idea how they got my name and address. Well any way it talked about the horror of a Hyst. and about stuff your DR doesn't tell you before the surgery. Well, after I got the report from the second DR I told her I wanted to try Hormone TReatment cause she said I had 2 options. So i was on Megestrol for almost 4 months and had another biopsy it still showed growth. but she didn't say if it's more the same or what. Plus she reccomends a Hyst. Someone told me inorder for this medicine to have worked I should have had a D&C before I started taking it. I wrote a bunch a questions for the DR in Baltimore to answer before I make my decession on what to do. It just really honkerblonkes me off that I'm going thru this and all I can think about is if I do go thru this surgery It's going to change my life as I know it and I'm afraid not for the better. You see I feel fine now no hurting no bleeding nothing. Haven't had a period in almost 3 yrs. But I did occosionally tinge my toilet paper when I peed in the morning but, I haven't done this in like 6 months. Thanks for listening I hope this all makes sense and not a bunch of jibber jabber. I don't really want this Hysterectomy.
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Unread 10-19-2003, 06:44 AM
Don't want the surgery

I commend you for making your own descion and not solely doing what is recomened. I was wondering what are specific worries, maybe we can help you by telling you how many of us have expirenced what you are concered about.I can imagine how not being in pain would make it very hard to elect major surgury,from what I have been reading on this site, most of us agreed to the surgury because we had a lot of pain, but not everyone.Personally, I would be scared to not do what the doctors say, but they are not the ones who have to have the surgury.
Unread 10-19-2003, 07:28 AM
It's possible . . . .

It's possible not to have any problems due to hysterectomy. I had TAH / BSO going on 14 years ago at age 43 due to fibroids and heavy bleeding (no pain at all). For a number of years after at my annual gyn check-ups, my doctor would ask if I'm having this problem or that problem. "No." No pain or problems. No pain or problems during surgery, recovery, or years since. Am happy I didn't have to worry about gyn cancers in all these years.

Mary D.
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Unread 10-19-2003, 09:25 AM
Don't want the surgery


It's so nice to hear that you are being pro-active in your healthcare! You owe it to yourself to get all of the information out there so that you can make the right choice for yourself. If you still aren't sure about things, request yet a 3rd opinion and even a 4th. Your body, your health, your future.

I would have to say that I would never have even considered a hysterectomy had it not been for the possibility of cancer (mine was cervical). I asked for all of my choices, and thought about them all, and then tearfully agreed to go forward with the hysterectomy. I wept for days. But I knew that for me, that was the best choice--I have a family to raise and didn't want to mess around with the possibility that there could be serious consequences in the future if I didn't have it done. I went on the internet and cried even more. There were so many stories about how women are adversely affected by a hysterectomy. I explained to my husband that our relationship was over as we knew it--that I'd never have another orgasm, probably wouldn't want sex, would be mean and grumpy. And in his wonderful way, he assured me that he would stay with me whatever happened. Well, none of it came true. I've been on this site for almost 3 years now, and while there are women who do have bad effects from their hysterectomy and their lives are changed forever, I would have to say that the vast majority do well with their surgery and go on about life in the same manner as they before their surgery. The only difference I see in myself (and my husband agrees) is that I need an extra hour of sleep every night (instead of 6, I need 7). I feel the same. My sex life is the same. I'm just not aware of any differences. And I don't have the nagging fear hanging over my head that I may have cancer growing inside of me. Now, I still need PAP's every 6 months, and I still worry that one day one will come back abnormal, but I'm optimistic about my future.

A hysterectomy is a major surgery. No one should jump into in blindly. Continue to ask questions, do your research, make a good choice--one that will hopefully bring you years of health and peace. That choice may differ from one woman to the next, but you're the only one who can make it for you. I will keep you in my thoughts and 'ers. Come back and let us know what you decide!

I will
Unread 10-19-2003, 11:42 AM
here's my worries and concerns

I'm scared the DR will do something to my bladder when she does the surgery, I will have trouble holding my urine which i'm having trouble with now. I'm afraid I'll have problems with my bowel movements, which aren't that great to begin with. Afraid it will change my personality to where I'm no longer a nice or caring person. I'll be hard to get along with. My desire or longing for sex has gone and I'm afraid the hyst. will make sure that will never come back. Plus I feel I'll not be a woman anymore and no one would find me attractive. yes I'm married but it's still kinda nice to have another male take notice but i'd never do anything with someone else cause I don't believe in that but it's nice to still be noticed. do you all kinda know what I mean. I sure hope so. I afraid, what if they find cancer when they do the surgery. I'll think, I caused all this by having the surgery, if I left well enough alone I wouldn't be going through this. I'm have a big belly had has dropped cause of some weight lose plus i've had a hernia repair a few years ago and the DR put in a mesh. The OBG/Onc. wants me to get an operative report of the surgery so she know where the mesh is at and how big. that's got me worried. I also asked if she could do a tummy tuck on my lower belly and she said no wait til you have lost all your weight to have that done. I was losing and following a good food plan and with all this crap going on I'm slowly getting back into the food, I find it a comfort to me. THat's another thing that bothers me after surgery will I get bigger or will it be harder to lose weight? Here I go again just rambbling on. Thanks for letting me. Pam
Unread 10-19-2003, 01:06 PM
Don't want the surgery


I want to make sure I understand your current status: You've had an endobiopsy that's shown complex hyperplasia with atypia, and is suggestive of endometrial cancer. You've had two doctors, one of whom is a gynecologic oncologist advise you that you need a hysterectomy because you may have cancer. You've tried Megace, and it didn't work to eliminate the abnormalities, but you don't want a hysterectomy because you got a flier in the mail that said some women have problems after surgery?

Of course, there is risk associated with any surgery. I believe there is a much greater risk of not properly treating cancer early and effectively enough to prevent its spread to other organs such as the lung or brain at which point it can no longer be effectively treated or cured.

Endometrial cancer is relatively curable if caught early and treated effectively. For example, a stage 1A, grade 1 endometrial cancer has a survival rate of more than 95%. However, once endometrial cancer spreads to other organs, the five-year survival rate is around 10%.

If you do opt for the surgery, make sure to have it performed by a gynecologic oncologist. They have several extra years of training in surgery and treatment of women's reproductive pre-cancerous and cancerous conditions. An experienced gyn-onc will be your best insurance against any longterm surgical complications.

I had a gyn-onc perform my radical hysterectomy in 1999 and I was lucky, because although I had no pain whatsoever prior to surgery and was exercising daily, it turned out that my cancer was much more advanced than anyone thought before surgery. I had to have internal and external radiation because of the extent of the cancer.

However, I have virtually no long-term complications and I am having more fun in life now than I ever could have imagined before cancer! I do everything physically I did before cancer and then some including but not limited to rollerblading, bike riding, aeroboxing, step aerobics, weight lifting, yoga and lots of walking.

I weigh about ten pounds less than before my hysterectomy and cancer diagnosis and my skin is still wrinkle-free at 56. My husband insists that I look much better now than I did when he met me at 19, when I was a little overweight (at that time I used to smoke, drink, not exercise and my diet was not nearly as good as it is now).

Of course, Pam, it's your decision, but if I had opted not to have surgery, I know I would certainly not be here healthy and happy over four years later writing this message to you.

Oh, one more thing--the number of deaths from endometrial cancer has more than doubled over the past 15 years, but the experts are not sure why. I've been convinced for a while that the recent trend away from doing hysterectomies is a major factor in the increased number of endometrial cancer deaths, because hysterectomies are the first-line treatment for endometrial cancer and are usually all the treatment needed by the majority of women.

Good luck and please let us know what you decide.

Unread 10-19-2003, 05:33 PM
Thanks for being here

thanks for being here and talking to me it really helps. But making this decession is the hardest thing I've ever done. All the folks that I feel I can talk to have passed away or moved out of state which makes it harder. I can remember when I was lil and I was sick I'd ask my mom am I going to be alright and she'd always said yes. For some reason that always made me feel better. Of course my mom's not here any more cause she passed away in 1997. I'm just plain scared.
Unread 10-19-2003, 07:05 PM
Don't want the surgery

Pam, If you look at my earliest posts on hystersisters, I too was seeking a way out of the op. Moekay's post to you is an excellent reality check and remember that two doctors have already told you they believe you should have a hysterectomy.
Now our similarities: In late July I was diagnosed with complex hyperplasia with atypia, cannot rule out possibility of cancer. For me a vag. sonogram and a D&C showed thick uterine lining and a possible very tiny cyst/growth. Here I am with no pain and never under the scaple so my immediate reaction was no operation, no way, I will try anything else. My gyn told me to please get a second opinion and do it quickly and so I did. The 2nd doc, a gyn/onc, said I could try hormone therapy for 3 months and then check results. He added that if a member of his family had my dx he would strongly encourage them to have a hysterectomy. You can guess what I focused on. So off I go to a 3rd doc (gyn/onc) who says hormone theray was a possibility but why take the chance when it is impossible to rule out cancer without the operation. After doc 3, it finally hit me that I might be wasting time and possibly even giving cancer a chance to grow so I got on the phone and called my gyn and asked her to please operate. She set my op up for the next week, and said a gyn/onc would be present too. I am so thankful I had this op since once inside they found stage 1 endometrial cancer, and the nasty thing was already trying to penetrate the muscle. I also am doubly thankful since my two docs said the operation got it all and I did not need radiation and/or chemo. BTW for about 5 /6 months the only indication something was wrong, was some tinges on the paper after urinating.
FYI, after all my worrying, I had a very easy surgery, pain was completely controlled by meds, and am having a non complicated and quite rapid recovery. Also, have not lost my libido and everything is working just fine for DH and me. Weight gain or loss will probably greatly depend upon you - you will be less active for some time, so if you let your appetite get the better of you, you most likely will gain weight. I am watching my diet fairly carefully and while not losing (and I need to) am maintaining my pre-op weight.
Pam, please weigh all your considerations very carefully and let us know what you do. It's very normal to feel afraid, this is major surgery and we all were scared. Just keep coming back to hystersisters and venting, asking, etc. This group offers tremendous support . My ers are with you. peggie sue
Unread 10-19-2003, 07:15 PM
Don't want the surgery

Hi, Pam. I'm just going to share my experience. Not the whole story, just part. I, too, had an endometrial biopsy prior to my surgery that came back negative but with complex hyperplasia. When I had my hysterectomy, not only did they find cancer in my ovaries but there was also cancer in the uterus which spread to the cervix. Not all the tests that they do are completely accurate. You'll hear this a lot on this websit: No matter what tests they do, they still won't know the whole story until they actually open you up.

And by the way, a hysterectomy is major surgery. I've followed instructions and have recovered well. I do, of course, experience hot flashes from the menopause but I'm still the same person I was before. The only thing we got rid of was the cancer and a lot of organs that I had no interest in keeping.

Good luck to you and God bless.
Unread 10-19-2003, 08:15 PM
Don't want the surgery

Hi Pam
I too was scared, Oct D&C Hyperplasia, was put on progesterone 14 days of the month, Feb biopsy showed Hyperplasia with atypia, put on progesterone daily until surgery, could not have surgery right away due to other medical problems. Had hyst on 6/10/03 Endometrial CANCER stage 1A. I was feeling fine with no pain, so to make the decision to have the surgery was a hard one, but by having the hyst quicklyI was able to catch the cancer early so I needed no chemo or radiation.

We read of all the things that can happen and yes surgery is never easy, but I keep thinking if I did not trust my doctor and had the cancer growing in me without me knowing, mine turned fast.

I will pray that you make a decision that you feel is right for you. If I can answer any questions you have I'll be happy to try to answer them.

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