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Surgical Menopause

Tash3
Posts: 11
Joined: Mar 2005

Hi,
I have been recently diagnosed with ovarian cancer following removal of a cyst which was originally thought to be related to my endometriosis. Following surgery, the tests showed that I had ovarian cancer.

I am now going through my chemotherapy of taxol/carboplatin which will be broken up by surgery. My Gyn/Oncologist recommends to have fully hysterectomy, removal of lymph nodes, ovaries and fatty tissue. He thinks I am stage 1c or 2 but can't be sure until he does the surgery.

I am 37 years old and I am really fearful of the surgery and early menopause.

Did you have the full surgery and how did you cope with the consequences?

Natasha

HusbandJohn
Posts: 4
Joined: Mar 2005

Tash-
I am not an expert in here, but my wife was 21 when she was diagnosed with ovarian. She opted against the full hyst. because of the same reasons and she wanted to have children. It came back and unfortunately her fighting efforts were unable to conquer the disease. My advice is to be safe. Realize there are things they can give you to reduce the effects of early menopause. I only know because of the research I did for Marty. Whatever you do, be sure you put lots of thought into it. I know how hard these decisions are. Best of luck to you.
John

Tash3
Posts: 11
Joined: Mar 2005

Dear John,

I am so sorry to hear about your wife. Thank you for your words of wisdom.

Natasha

jamilou's picture
jamilou
Posts: 202
Joined: Mar 2005

Natasha
I was 40 when I was diagnosed with stage IIb ovarian cancer. I underwent surgery for the removal of a "nasty looking" cyst and it came back as cancer. My surgeon immediately called in a 2nd surgeon and did a de-bulking (they clean and look at everything) they removed the ovaries, uterus, and tubes. They did not remove lymph nodes that I know of. As soon as I left the hospital I started on Premerin for hormones. I am glad that I had everything taken out...I don't have to worry. Taking hormones is not bad, in fact it is good to go on them to help your bones stay healthy since you are so young. I am now coming up on my 5th year anniversary without a relapse! That is something to think about. Good luck on your decision...if you want to talk or need support you can email me.
Jami

joanna's picture
joanna
Posts: 15
Joined: Nov 2000

Hi Natasha, I was diagnosed with ovarian cancer stage IIIc in 2000 at the age of 29. The cancer in the right ovary was the size of a small watermelon, and it spread to my left ovary (peanut size there). Well, my doctor removed my right ovary, some lymph nodes and only 1/2 of my left ovary. He made this decision under the knife and decided that he did not want me going into instant menopause. I will be honest with you, at first I was upset that he did not remove everything, but now, I am glad that he chose to leave 1/2 of my left ovary. I can't tell you what to do, but I am happy that I did not go into instant menopause. Good Luck to you, and please email me if you want more info about the results of having only 1/2 an ovary and/or if you want to chat. Peace ~ Joanna Siefert

Padawan60
Posts: 13
Joined: Feb 2005

Hi Natasha,

I recently had a large ovarian tumor that prompted a total hysterectomy. (FYI, I'm 44.) In my case, I was downright eager for the surgery, since my tumor was getting painful and I wanted it the heck out of there.

The first week of recovery was fairly slow, but within six weeks I was feeling almost 100% again. I can't tell you not to be scared of surgery, but in my own experience, it really wasn't that bad.

However, I never thought about surgical menopause beyond the dual advantages of not having periods anymore and not having to worry about birth control... that is, until I started getting hot flashes shortly after my surgery. Whew! Granted, I'd much rather have hot flashes than a tumor, but that said, they get bothersome at night and tend to interfere with my sleep. I have an appointment with my doctor next week, and will see if there's anything I can take to alleviate the flashes. So far, however, that has been the only downside of the surgery. (Well, that and a not-so-lovely 7" scar, but it should fade in time.)

In short, I'd say that I wasn't scared of the physical surgery at all -- my fear was on how serious my condition was. (They eventually staged me at 1A which, all things considered, was a relief.)

As for the consequences, so far the good greatly outweighs the bad, and I hope it will be like that for you, too. Feel free to post back or email me if you want to talk some more. :)

Tash3
Posts: 11
Joined: Mar 2005

Thank you everyone for your support! It has been a relief to read your messages and your stories. When you read the Internet, it can get really depressing because you read about all the possible consequences that can happen. I am worried that I won't be able to function normally, be depressed all the time and generally be a wreck. Meeting you who are coping with it all right has given me strength. Thank you.

I am also concerned that there have been reports about HRT increasing the risk of cancer. So, I do not know yet if I should be considering it.

I think I will opt for the full surgery just to be safe. My doctor says that with the full surgery, I will have a 95% chance of being cured. I have also heard that surgeons can decide for whatever reason not to go for the full thing when they do the actual surgery.

I still have a few weeks to decide because I have three chemos before the surgery and then will meet with my Gyn/Oncologist to discuss the details.

mopar
Posts: 1948
Joined: May 2003

Natasha: My situation is very similar. I had a uterine fibroid which was quite large. My ob/gyn said it needed to be removed. But when he took a CA-125 blood test it was somewhat elevated (normal is 0-35, mine was 48). He said it 'could be' from my endometriosis, but felt better if I consulted an gynecologic oncologist. I'm so glad he suggested that. The oncologist did surgery, removed the fibroid, found a growth on the one ovary, had pathology take a look at it, it was cancer. He removed everything, including a lymph node and the omentum. Unfortunately, the tumor ruptured as it was being removed, so I was considered a Stage 1C. I had 6 rounds of carbo/taxol and today, 5 years later, I am cancer free! I do have a lymphocele that they are keeping an eye on, but I am so blessed that it was caught when it was. I had NO symptoms other than the fibroid, which in itself was not really a symptom of ovarian cancer.

I understand your fears, but I agree with the other replies - I'd rather be safe. You are correct to be concerned about the HRT. It is NO-NO, especially for those of us who had endometriosis. I cannot take estrogen in any form. After the surgery, my doctor had me on Megace which was intended to minimize the hot flashes and other hysterectomy related side affects. But he only had me on it for one year. It can also be dangerous. Then he prescribed a progesterone cream, due to the fact that the vaginal tissue starts to atrophy (shrink) and can become very dry and uncomfortable. However, he cut it down from 3 times a week to once a week, since my CA-125 was fluctuating too much. Now I use it once a week, sometimes not at all.

If you choose to have the surgery, don't fret too much about the side affects. Visit us again and I'm sure we all have some suggestions for you. Your doctor should also be able to guide you in this. I have a wonderful oncologist. I can honestly say that the surgery was not as bad as I thought. I was so thorough, especially with the pre-surgery prep. And he had me in the hospital for 5 days afterward, when most people would have been booted out in 2 or 3 days. They used staples instead of stitches, and I'm amazed at how well I healed.

Yes, you are quite young, all the more reason you want to nip this thing in the bud right now! Again, it is your decision. I know what you mean about the internet. It can be a blessing or a curse. Sometimes, too much information is overwhelming. So, now with the knowledge you have just make the best informed decision that you can. We are all here for you. Keep us updated. You are in my prayers.

Monika

Mary303
Posts: 15
Joined: Jan 2005

Hello Natasha my name is Mary. 2 years ago I found out that I had ovarian cancer. Stage3c. I was 38 then.They did surgey and the debulking. Took everthing along with my spleen, apendix(sp) and some of the small intestent and large. The tumor was the size of a basketball. I do deal with the hot flashes and night sweats. I've asked my dr about taking anything for them and they say no because of the cancer. But I guess I would much rather deal with them than the tumor. Right now things are at a stand still. I've been dealing with an infected abcess. But right now they say things look okay.
Don't be afraid to really talk to your dr. and ask as many questions as you can. Don't know if I've made any sense here or have helped any? I'll be keeping you in my thoughts and prayers.
Let us know how you are doing.

Tash3
Posts: 11
Joined: Mar 2005

Did your body shape change after the surgery? I know it sounds silly but I feel like I am going to age overnight.

And it is a very personal thing to discuss, are you still able to enjoy sex after the surgery?

I just fear that after the surgery it will be really difficult to enjoy life, of being a wreck, getting old overnight, not ever being able to have sex again. And do you get a foggy brain like they say? Can you concentrate?

Thank you for your support.

jamilou's picture
jamilou
Posts: 202
Joined: Mar 2005

Hi Natasha
My body did change but then I started to walk 3 miles a day 5 days a week along with some weights. Now my body is in good shape and I just watch what I eat. I am not sure if it was the chemo or the change in hormones that caused the weight gain. Instead of losing weight on chemo, I gained each week.
Now for the sex question...I do take a hormone pill Premarin 0.9mg. ...but my sex life has never been better. It was hard to get it back though after the surgery and the chemo but once I started to feel good about myself and I got my hormone pill straightened out it all came back. You have to be patient and everyone is diffrent. I hope I have given you some hope. There are so many things on the market now that if your doctor is good I am sure he will work with you to find what will work for you.
The foggy brain that I had came from the chemo. I had a hard time remembering words at times or forgetting things. It is much better now. Now I forget because life is so busy! Good luck! Talk to you soon
Jami

suemumf
Posts: 2
Joined: Mar 2005

Hi Everyone-
My name is Sue (age 36) and I will be undergoing a hysterectomy as a result of my cervical cancer (adenocarcinoma Stage 1B) in 2 weeks. The surgery will involve taking my cervix, tubes, uterus, ovaries and performing a biopsy of my aortic lymph nodes to make sure they are cancer free. I have already finished my chemo and radiation therapy. Did anyone of you have a similar type of operation where the scar is actually vertical and runs from below your belly button to above? I am trying to understand what to expect. Thanks. Your messages were so helpful to read through. I have already started to experience hot flashes thanks to the radiation killing my ovaries - not fun.

Tash3
Posts: 11
Joined: Mar 2005

Hi Sue,

I will be having a similar operation after I finish three rounds of chemo. I understand how you feel and is also interested to hear other people's experience with such operations. It is my biggest fear at the moment.

Natasha

Padawan60
Posts: 13
Joined: Feb 2005

Hi Sue,

My surgery involved the removal of a large tumor and a total hysterectomy, so I have a scar from about 2" above my belly button to about 5" below it. It's not the prettiest thing in the world, but it is slowly starting to fade from red to pink, and is now more of a colored line in my flesh rather than a stiff ridge. My operation was in December, so I'm sure the scar will fade even more over time. I don't really feel it anymore, although I'm more comfortable wearing pants that are slightly looser in the waist now.

(Oh, and I hear you about those hot flashes -- sheesh, they're annoying. I have a checkup tomorrow and will ask my doctor if there's anything I can take to alleviate them, as I haven't had a decent night's sleep in a quite a while now.)

Hope that helped... :)

Padawan60
Posts: 13
Joined: Feb 2005

Hi Sue,

My surgery involved the removal of a large tumor and a total hysterectomy, so I have a scar from about 2" above my belly button to about 5" below it. It's not the prettiest thing in the world, but it is slowly starting to fade from red to pink, and is now more of a colored line in my flesh rather than a stiff ridge. My operation was in December, so I'm sure the scar will fade even more over time. I don't really feel it anymore, although I'm more comfortable wearing pants that are slightly looser in the waist now.

(Oh, and I hear you about those hot flashes -- sheesh, they're annoying. I have a checkup tomorrow and will ask my doctor if there's anything I can take to alleviate them, as I haven't had a decent night's sleep in a quite a while now.)

Hope that helped... :)

Padawan60
Posts: 13
Joined: Feb 2005

(Sorry if my duplicate message is still showing up - I tried to delete it, but it didn't work.)

jochan
Posts: 19
Joined: May 2001

Almost 4 years ago when I was told I will be getting a hysterectomy, I started to research on hot flashes. I didn't even know I had cancer then. Only 2 things stands out in my research: soy and flax seeds. I didn't want to take premarin.

I had not heard of flax seeds then, so I took 2 servings of tofu daily. 2 years back I added flax seeds to my diet. I can honestly say it works because if I stop taking either of them for a period of time, say 3 weeks to a month, the hot flashes comes back.

I really dislike the hot flashes because for me it comes with a little something else, the closest I can put it is mild depression, just for that few seconds or 1 minute, but it always frightens me. When I started taking flax seeds again, it takes the hot flashes about 3 weeks to go away completely, although I usually feel I am suffering less from it after a week or so.

I take about 2 rounded tea-spoon of grounded flax seeds ( I ground them myself and then put it into the freezer) with peanut butter and lately I added in whole sesame seeds. Sometimes I spread it on wholemeal/ multi-grain bread and sometimes I just eat it as it is.

Hope this helps.
Jochan Ovarian cancer stage 3 diagnosed in May 2001

mopar
Posts: 1948
Joined: May 2003

I used to use flax seed before I found out I had cancer (great source of fiber and Omega fatty acids). I love grains, nuts, seeds, so I really went to town with these. However, keep in mind that soy and flax seed support estrogen production. That's why the hot flashes go away. But while it's been encouraged for women because they claim it 'fights' cancer, it's also a no-no for women like me who's cancer is spurred on by estrogen. I don't have a better way to word this, so I hope I'm not confusing you. Just look into it a little more. Once I found this out I nixed the flax seed from my diet. Too bad, because it has many other healthful benefits - just not the best choice for me.

I will tell you what I have done to help the hot flashes - resistive training! I've worked out with weights in one form or another for years. However, I stepped up my program to increase testosterone production and lower estrogen. There are many testimonies to support this, and it is a proven fact. Don't worry, you won't get 'muscle bound' or 'overgrown'. But when I am diligent with my program hot flashes are non-existent. It helps many other areas also.

Hope this helps. I'm glad to see you are getting so many responses, hopefully it's not too overwhelming. But at least you have a lot of good, positive information. God bless!

Monika

Tash3
Posts: 11
Joined: Mar 2005

Thank you all for you replies. This has been very helpful. I love the idea of exercise. I do miss goind to the gym (I am still recovering from my laprascopy).

I have to say that your positive responses have helped me to put my mind to rest and to stop being scared so much. I am still apprehensive of the surgery but it is only natural. It is good to hear all these positive stories!

Natasha

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