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Diagnosed at 26 with cancer Diagnosed at 26 with cancer

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Unread 08-13-2001, 02:09 PM
Diagnosed at 26 with cancer

I have been actually viewing this web page periodically since I was 26. I am now 32 years old and have basically been "dealing" with my diagnosis of adenocarcinoma for 6 years. When I was diagnosed, I had only been married for a month, and the doctors had decided to change their treatment from a radical hysterectomy to a conization due to my age. Not to mention the cancer hadn't staged, it was still "in situ" and they felt their original approach was extremely severe. So I got the cone and everything came out great and was told I would have to go through ECC's and paps every 3 months until the age of 30 and then was instructed to get a hysterectomy. Well I am 32 and still haven't done it out of complete fear of the side affects. I have never wanted children so luckily that wasn't a hard decision but my biggest fear is will I gain weight, will my sex life suffer, will I go into a hormonal roller coaster (they are leaving my ovaries), will I go into a depression, etc...? I guess what I am looking for is if there is anyone out there that is my age (most seem to be much older than I), thats had a vaginal hysterectomy that can share their experience with me. I know I need to get it done and maybe if there is someone out there that can make me feel a little more informed about what my afterlife might be like I will get it done. This is a weight that I have been bearing for years and I am worried that the fear of the unkown could keep me from doing something that can have greater risk on my life. Thanks for any advice!
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Unread 08-13-2001, 02:32 PM
Diagnosed at 26 with cancer

The unknown is scary. But then, is it worth being scared to death?? I am older than you. I am 39. I had TVH on 7/16 for CIN3. As of today I am 4 weeks post op. I feel the exact same as before. I kept my ovaries..and they are working fine, PMS and everything. My husband is saying my complexion is radiant. I think it's because I'm not so worried about the big C anymore!! I have experienced no depression and I just can't tell you enough how wonderful I feel.

All of this is easy for me to say now....you should have seen my posts before surgery!! I was neurotic!! Everyone here is so supportive. Come with any and all questions and concerns you have!!

I am almost certain, that all the sisters here would say the worst part of a hysterectomy is the waiting for surgery!!!
Unread 08-13-2001, 02:41 PM
Diagnosed at 26 with cancer

Welcome Jules. I'm glad you have found this website helpful. Just to clear up our website's time table, we have only been online since August of 98 and added a message board system the following year in July of 99.

Time certainly flies here but we haven't been on the net for 6 years.

At any rate, I'm glad we are here now and the website can be of support to you while you make your decisions regarding your surgery.

Again, welcome!
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Unread 08-13-2001, 02:55 PM
Diagnosed at 26 with cancer

HI Jules, I am glad that you found this site.

First of all ,you dont mention how you paps have been these last 6 years. If the cone did the job and you have been having normal paps ever since , why the need for the hysterectomy?

If I were you I would talk it over with the Dr. and read lots. Ask questions here. Get 2nd and 3rd opinions. Maybe even have a consult with an oncologist. Then , make a decision. A hysterectomy is major surgery and I cant see the point in having one unless there is a very good reason. Find out if cancer or precancer is still evident. This is an important question .

I am 43 now, I was 42 when I had my hysterectomy. My sex life didnt change, I didnt gain weight and after surgery my ovaries kicked back in about 4 weeks later. Some people do have problems but these are few compared to the number of ladies who have hysterectomies.

Please let us know how you go and remember we are here always . x x
Unread 08-13-2001, 04:25 PM
Diagnosed at 26 with cancer

Hi Jules, I was diagnosed at aged 32. I had an abdominal hyst so I can't comment on how you feel after a vaginal hyst but I agree with Robynb. Does the doctor still feel that you need the hyst? Have you had some bad paps? I would discuss the reasons now for the hyst with your doctor. You said the conization worked great and maybe you can just continue with your annual pap which we all do anyhow even after a hyst. Good luck to you.
Unread 08-13-2001, 06:31 PM
Diagnosed at 26 with cancer

Hi, Jules! Welcome!

Robyn and hurriedh have brought up a good point. This definitely warrants a conversation with your doctor. It is a major surgery, so if you can avoid it, that would be great. Unless it's driving you crazy that it could possibly return in the future, and it's not worth it to be paranoid every day of your life.

I'm 6 months post. I had all of your same questions before I had my TAH. I'm happy to report that I feel pretty much the same as I did before (although I was exhausted the first 2 months, and very tired for months 3 and 4). I'm 38, so a little older than you, but I have sisters quite a bit younger than you, so we're close enough. My sex life is still pretty much the same. I was really concerned about orgasms because I'd read so much about them changing. At first, they were kind of on the weak side, but they really are pretty much the same as ever now. I haven't gained any weight--actually, I've lost 10 pounds due to my new health awareness. No hormonal roller coaster for me. My ovaries are working great and I feel wonderful.

Good luck, Jules. Please talk to your doctor and make an informed decision. We are here to support you in any way we can.

Unread 08-14-2001, 05:48 AM
Diagnosed at 26 with cancer

I had my hyst at 35, due to cervical cancer. My ovaries were healthy, so the doctor left them and performed a tvh. I am doing great!! No problems with my sex life and dh can not tell that anything is missing! My ovaries seem to not have gone back to their normal functions, but once I started taking some herbs I was fine. I only take 2 pills a day, just like vitamins and I feel like myself without any problems!!
Please discuss everything in great detail with your doctor. If he feels as though this surgery is not even needed, then there is no need to put your body through this. A hyst is major surgery, and should not be taken lightly. Your doctor will know best, since he is familiar with your past medical history and your family history as well. Best of luck to you!!
Unread 08-14-2001, 07:45 AM
Thanks for the encouraging words

Once I put on my post that I had been looking at it for 6 years I realized that I started looking at it about two years ago when I was in the same dilemma I am now, after my mother had a mamogram show something suspicsious (happy to say everything was fine!).... The stress must just make it seem like 6! To answer some of your questions, My paps and ECC's have come back perfect for 6 years. The hysterectomy by 30 was a recommendation by my gyn onc since he was extrememly concerned that the type of cancer I have (adenocarcinoma)is hard to detect and they are afraid it could reoccur but may remain undetected until too late. You would not believe the research I have done on this cancer. I know it's very slow growing and is considered hard to detect and from the studies I have read oncolologist seem to be either one side or the other... Either they recommend a hyst for preventative measures due to the fact it's hard to detect, or they say if it hasn't staged (like mine ), the leision was small (like mine), and all apex's of the cone when the biopsy was done were clean (like mine), they consider that treatment along with ECC's and thin prep paps every 3 months for 5 years then down to twice a year after that. My current gyno isn't necessarily pushing me for the hyst but she recommends it since I don't want any children. And feels that since I am doing TVH the post op recovery will be minimal compared to abdominal.

So what it really comes down to are mostly selfish and vain reasons as to why I haven't done it. I work out very hard and have a very active life. I am afraid of the "swelly belly" thing I heard mentioned so much, I am afraid of the weight gain, the possible loss of orgasm, etc.... So part of me says "you are being very precausious so if it hasn't been detected don't do something so invasive and severe to your body" but there is also the fear I have every day that it will return. My Grandmothers on both sides had breast cancer. My Mother's Mom died 4 years ago when it came back in her back and spread to her brian and my Fathers mother was just diagnosed with Ovarian cancer after having her breast removed last year to cancer. So it's very prevolent in my family. Although I must add both were two pack a day smokers since about 15.

I will have to say that the replies I have read so far have been very encouraging! My fear has been based a lot on the unknown so I am very happy that I finally decided to post on this web page. I have seen a total of 3 gyn onc's trying to get more comfortable with a decision one way or another but I have to admit I just don't trust them. I know in this day and age most doctors fear lawsuits etc... so I personally think it affects their opinions and insurance affects their treatments. So who better to go to than the people that can give you advice from personal experience. I know that no one can predict the outcome but these responses can definitely help me to decide how I want to deal with it and the risk I finally choose to take one way or another.
Unread 08-14-2001, 06:57 PM
Diagnosed at 26 with cancer

Hi Jules, I understand a little better now how you feel after your last post. I also had an adenocarcinoma. You are right. The reason so many people develop invasive cancer from this type of cancer is because it is up high in the cervix and often doesn't show itself until the tumor hangs outside the cervix. It is a rare form of cervical cancer and more agressive than the squamous cell. But since your doctor knows your history and you know your history you can follow it well. Have you talked to your doctor recently about the hyst? Is he still leaning toward the hyst? The "swelly belly" feeling goes away after a while. Since you are having a TVH you won't have the lovely scar down your abdomen and I had to have a vertical one due to complications. I actually had my vagina removed and a new one built due to complications with radiation and my sex life is fine. I was diagnosed on the day I gave birth to my daughter and I am still trying to GAIN weight to get back to my prepregnancy weight so weight gain wasn't a problem here. Everyone is an individual and will face different "challenges" as they recover from this surgery. You are not faced with the cancer today and so you have a little time to talk with the doctors and make the best decision for you. Good luck to you on your decision and keep us posted.
Unread 08-23-2001, 05:15 PM
Diagnosed at 26 with cancer

Hi Jules,
WOW! I can really say I know how you feel. 5 years ago, at age 25, I got married in June, in November I had a radical hysterectomy due to cervical cancer. What a way to start out your marriage, huh? We had just got married and didn't have time to think about a family.
Well, after surgery, I began to gain weight. I didn't like it, so I went to a nutritionist.
I am happy to report that 5 years later I'm cancer free and I have just lost almost 20 pounds in the past year and a half. I am watching what I eat and have maintained my weight for over 6 months.
My husband and I have a beautiful Jack Russell Terrier, Sadie and two great cats, Dutchess and Chloe.
Don't let the surgery get you down. Go for regular check ups and watch your diet and you should be fine.
Good luck to you!

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