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complex hyperplasia atypia - and I DON"T WANT A HYSTER complex hyperplasia atypia - and I DON"T WANT A HYSTER

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  #1  
Unread 06-27-2001, 11:35 PM
complex hyperplasia atypia - and I DON"T WANT A HYSTER

I had a D&C 3 weeks ago & they found CHA. Went to a 2nd surgeon because D&C surgeon wants to do a TAH. 2nd surgeon wants to do a TAH PLUS bladder suspension and rectocele repair!! Talk about freaking out!! I simply can't hadle all that. Have decided to go with conservative treatment with the rectocele and slight incontinence problem. But the major problem is the hyster. I do not want surgery. Even knowing the high probability that there could be cancer, I am looking at alternatives. I know in younger women who want to preserve their fertility they can be treated with progestin (usually Megace). But I am 55. Has anyone tried MGN3 and IP6 or genistein or COX2 inhibitor? ANY treatment other than hysterectomy! Have any of you had a supracervical TLH for this? I know most drs. won't even consider this an option, but that is as far as I can consider right now. Any help you ladies can offer will be greatly appreciated.
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  #2  
Unread 06-28-2001, 05:46 AM
complex hyperplasia atypia - and I DON"T WANT A HYSTER

Hi Betty, gee you sound so stressed What is the reason you dont want to have the hyster? You can always get a 3rd opinion, no one can force you to have the hyster , it is your decision . But if there is cancer involved and the hyster is the only alternative ..... well that is a different concern. Read, ask questions and then you will have all the information to make an informed decision. Dont forget we are always here to support you. Take good care x x x
  #3  
Unread 06-28-2001, 06:16 AM
complex hyperplasia atypia - and I DON"T WANT A HYSTER

Personally I think that if cancer is involved, you really need to think things through. What kind of life would you have if you are in constant pain or it is ended very soon because you did not want to have surgery. I agree that this must be your own decision because this is YOUR body and YOUR life..but I urge you to please talk with your doctors and find out everything before you set yourself so firm into NOT having a hyst.
I wish you luck on everything and hope that it all comes together for you very soon.
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  #4  
Unread 06-28-2001, 04:28 PM
complex hyperplasia atypia - and I DON"T WANT A HYSTER

Hi, Betty!

Sorry to hear you are faced with a difficult decision, but please take the time to get all of the information and all of the pros and cons before settling into a course of treatment (or nontreatment). Cancer is a very serious thing, but it can be managed so much more easily when it is found early and treated. It was not easy for me (or I doubt for many of us) to accept the fact that a hysterectomy was really my best option (I never thought I'd have one because my periods were always easy, I had great hormones, really no problems with that part of my life). And maybe that's not the best option for you, but before you decide that for certain, ask yourself why you absolutely don't want one. I was afraid of all the changes that would happen, that sex would never be good, that I would be a hormonal mess, that I would fall into a depression, and on and on. But during the time I've been here on the boards, the majority of sisters seem to think their lives are every bit as good as before (if not better). So talk to your doctors, get another opinion if you want, ask a lot of questions, and then decide. Please feel free to come here anytime with questions or concerns. We are to help, whatever you decide to do.
  #5  
Unread 06-29-2001, 05:47 AM
complex hyperplasia atypia - and I DON"T WANT A HYSTER

Hi, I had a complex atypical hyperplasia diagnosis and I felt exactly like you do. Although I was in menopause for 5 years after chemotherapy for breast cancer, I was very concerned about the side effects of hysterectomy. Complex atypical hyperplasia is pre-cancer and that's not cancer. Like you I researched the Megace. One thing I remember reading was an article that said it doesn't work as well in older women. There are side effects - weight gain and you need to have D&C's continually. I had had a uterine biopsy before the D&C. That said possibe carcinoma which the D&C was supposed to confirm, but it didn't. The doctor wanted to do a TAH/BSO. I went for a second opinion and also a second opinion on the PATHOLOGY. The D&C diagnosis was the same, but they said the uterine biopsy was definitely cancer. Of course I had the surgery. My new doctor did an LAVH/BSO. I had a 1b cancer. Still early but not an 1a. They recommended I have internal radiation which I did.
I know exactly what you're going through and how distressing it is. I'm absolutely fine. The surgery, recuperation, and radiation were nothing compared to DIAGNOSIS DISTRESS!
My doctor said that with a complex atypical hyperplasia diagnosis, they sometimes find actual cancer when they do the surgery. In fact, when I was in diagnosis distress a woman on this site (guest book) had that experience.
I've been there and I truly feel for you. keeping you in prayer.


SUSKI
LAVH/BSO 12/21/00
Endometrial Cancer
  #6  
Unread 06-29-2001, 04:12 PM
complex hyperplasia atypia - and I DON"T WANT A HYSTER

I agree with you 110% SUSKI. I was diagnosed with atypical complex hyperplasia and my doctor told me the same thing. It does not mean that cancer is not actually already in there. My uterus was as dry as a desert he told me and he could only get this biopsy from this one area. God knows what is in there?

I also wanted to hold my surgery off until January, February of 2002. My doctor said no way, 3 months at the most. I freaked like you because I feel fine. A little pain now and then. Nothing major and do not want this surgery! So I thought about my options, alot of the sisters here said these treatments did not work anyhow, so to protect myself from cancer I am having this hyster done. On my dad's side of the family is cancer all around. Grandmother had breast cancer. My Uncle had bone cancer. Nope not taking a chance...

Hugs,

Michelle
  #7  
Unread 06-29-2001, 08:38 PM
Atypical Hyperplasia

I was told last year that I had complex atypical endometrial hyperplasia. What a mouthful, huh? That was in April. I had surgery in early June and by then I already had early stage uterine cancer and early stage ovarian cancer! (The ovarian cancer diagnosis was changed to Low Malignant Potential.)
I thought about waiting until September so I wouldn't have a bad summer, but I thought, "What kind of summer can you have with heavy periods? You never know when they are coming or how long they will last! Also, my mother died from colon cancer and I thought I better get it done sooner rather than later. Boy was I glad I didn't wait. Who knows what the prognosis would have been.
I went for a second opinion and wound up having the second doctor do my surgery.
If you live in an area where there are gynecological oncologists, ask your doctor about consulting with one. My gyn coordinated his schedule with one so that if I had problems and they found cancer, the other doc would be ready to step in. The initial impression was that everything was ok. A couple of days later, the pathology report came back: "Stage Ib uterine cancer and Stage Ic ovarian cancer." I thought, "Great, I get two kinds!" It wasn't as bad as initially thought, but I am glad that I got that second opinion soon after the first and that the surgery was done within a short period of time. I really didn't have a lot of time to worry about the anticipated surgery.
I was 52 when I had my surgery, I have no children and am not married. I don't feel any differently without the uterus, ovaries, tubes and cervix. I had wondered if I would feel differently.
Take care.
  #8  
Unread 06-30-2001, 08:45 AM
complex hyperplasia atypia - and I DON"T WANT A HYSTER

Hi Betty,

I wanted to see how you were doing and offer some {{hugs}}. I can't imagine how hard of a decision this is, my cancer was a different flavor (ovarian) and for me was a no-brainer! I think I actually had it easier than some, I had no decision to make, no options to think about. They said the chance of it being malignant were very high, I said get it OUT!

I had lost my mom at a early age (44), dad (61) and aunt (@55) all to cancer. I was 38 at the time of my surgery. Although I am also unmarried with no children, there was NO WAY I was going to tempt fate with my family history.

Please do get as many opinions as necessary to make a decision that you can live with. I, too, think a Gyn Oncologist would be a very good idea to consult with. This is your decision and only your decision, but please don't close any doors before you explore all options.

Please let us know how you are doing when you can. My prayers are with you.

{{hugs}}

Vicki
  #9  
Unread 07-04-2001, 11:18 PM
complex hyperplasia atypia - and I DON"T WANT A HYSTER

Dear Betty,

How I feel for you and what you're going through! You didn't state why you're against surgery. Are you afraid? Have you had any surgeries before?

I know how frightened I was! Complex hyperplasia atypia, and I had to have a D&C and a hysterectomy! I have a very rough time with general anesthesia - causes severe depression that can last for more than a year. I chose to have an epidural and sedation. Had to change DD and castles in order to have it my way, and boy was I glad. Totally different and almost a wonderful experience! I truly thought I was going to be in so much pain afterwards, but here I am, 8 days post-op, and I'm doing great. I was off pain meds as of Sunday except for Ibuprophen, and have only taken a half pill twice since then when I overdid it and had a headache.

Prior to surgery, I was feeling so good - after bouts with 40 days of bleeding, and feeling so weak I was in tears - that I asked the DD if I really needed surgery. Of course, this doesn't go away. I researched my options, really asked LOTS of people LOTS of questions, and felt the power of "sisterhood" for the first time in my life. I take water aerobics, and all the women there, including the instructor, helped to really empower me.

I'm 50, have no children, and I'm married. The DD said I was "amazing" to have done so well, however I really believe that it was due to the anesthesia that I chose, and the fact that I'd really gone over all of this. I put my surgery off for a month, and my frame of mind was great when I went in. Also started taking Celexa about six weeks prior - this is an anti-depressive, and it worked great. I continue to take it, and probably will thru the Megace and chemo. Instead of feeling like a victim, I felt like I was in control, and placed myself in the professionals hands with prayer, knowing the Divine Physician would be there as well.

My epidural was kept in place for thirty hrs after surgery, and I was given my pain meds thru it. Made getting up the next day, showering, dressing and taking a walk so much easier. Once up, I didn't want to sit too much.

Please feel free to contact me individually if you like. My email address is [email protected]. I know you're frightened, but honestly, the fear is millions of times worse than the surgery. We've got a lot of living to do!!!

Hugs, MindyLee
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