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Newly diagnosed . . . lots of questions and fears Newly diagnosed . . . lots of questions and fears

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Unread 06-23-2002, 02:25 PM
Newly diagnosed . . . lots of questions and fears

Hi -

I just found this site today and I'm very glad I did! You all sound great! I am 43 years old and was diagnosed about three weeks ago with "Mullerian adenosarcoma," low-grade, which is apparently an extremely rare cancer of the uterine wall. I have been given a good prognosis by each of the two gynecological oncologists I have consulted with so far, both of whom recommended hysterectomy. However, one of them recommended removal of my ovaries as well, with no hormone replacement therapy for two years following surgery, while the second thinks I might be able to keep my ovaries, and that even if they are removed, HRT might be possible. I had an MRI two days ago, which I guess will give them a better idea of what stage I'm at. Both of these doctors are highly regarded, particularly the second one, who is a woman and whom I was told is "less aggressive surgically" than others but with "better results," and that she also is more "holistic" in her approach, that is, thinking about the impact on the whole woman. I have a consultation with a third doctor this week, who is also highly regarded. It will be interesting to hear what his opinion is - of course, I am hoping to be able to keep my ovaries, particularly given my age.

So one of my questions is this: Is there anybody out there who had her uterus removed but kept her ovaries? The second doctor I saw said that uterine and ovarian cancers are different, and that since I have no family history of ovarian cancer, that keeping my ovaries might be OK (pending, I guess, the MRI result). Also, and I feel stupid asking this, but I thought the ovaries were not connected to the uterus, but I just was browsing some sites on the web and saw some pictures where it looked like they are connected. So now I'm confused about that! And, what do people generally do about HRT after hysterectomy for cancer?

And more questions: If I have to have my ovaries removed, I am very fearful of the impact on my sexual functioning. Will my sex drive go down? Are there good non-estogen alternatives that will address vaginal dryness? What about a "shortening" of the vagina, which I read about somewhere? Also, if I go into menopause for two years without taking HRT, will it affect my skin elasticity and make me age more quickly? I think I can deal with the mood side effects, and the hot flashes and such, but I'm very scared about those two things (sexuality and aging) in particular.

Also, assuming I will be having my uterus removed: How does that affect orgasm? That doesn't seem to be an issue addressed very much, so I don't know if that means there's no effect, or minimal effect, or whether it's just a neglected area because it's a "women's health" issue and thus has not been attended to by the medical establishment.

I will ask my doctors all these questions, but I think it would help me to hear from women who have actually been through it.

This a very scary thing, having cancer! And having to deal with issues of sexuality and menopause on top of it makes it feel overwhelming sometimes.

Thanks for being there.

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Unread 06-23-2002, 03:38 PM
trying to help

Hi Leigh, hope I can help a little although I am not in same situation. I had LAVH Burch, cystocele, retrocele and enterocele all fixed on 27 May, keeping ovaries, and I am 41. 10 days later had report that cervix had CIN ll which was a huge shock, I didn't even know that it was pre-cancer, I thought it was the big C. I expect to have good outcome as all misbehaving cells have been removed but I know how panicky I would have felt hearing the C news with cervix still inside.

I hope I can ease some concerns, your cancer in the uterus will be tested to see what response it has to your hormones, if they don't affect growth, then there is a good chance they will leave the ovaries. If the tumour can be "fed" by hormones then ovaries are usually removed and hormone replacement is either not given or especially selected to give only the hormone that doesn't feed cancer cells.

The surgeons will also be checking to see if the cancer is encapsulated, that means no leaking "bad" cells into other areas, this will also affect their decisions. Your surgeon should be able to answer your questions so that you will know if he will go for option 1, or 2 or 3 if he finds a particular situation.

As far as orgasm without a uterus, well, there are opinions flying many ways. I am not cleared for intercourse yet but have had two orgasms from gentle stroking and although they felt a bit weaker, they lasted a long time. For me, no deep intensive orgasm was worth keeping my prolapse condition and awful back ache. As my vagina was stitched back and front, I can also expect a longer recovery time for those muscles to return to full strength.

I am sure you will get lots more helpful responses soon, never be afraid of any query, there is nothing too minor or major that can't be discussed and usually anwered through this site. Good luck, Linda
Unread 06-23-2002, 04:56 PM
Newly diagnosed . . . lots of questions and fears

s Leigh

Wow, you've raised alot of good questions!!!!!! I'm glad you came to cancer concerns. Great to see you've gotten numerous opinions from the doctors.
Since I had ovarian cancer, I can only offer a few answers to your questions. But others will no doubt be along.
I had a radical hysterectomy at age 49 which put me in instant surgical menopause. HRT was not an option for me. It was not as big a problem as I would have anticipated. A year later I still get occasional hot flashes. Emotionally, I've been pretty level. Libido is way low however. Vaginal lubrication is definitely needed. But when properly stimulated, all the body parts work as beautifully as pre hyster.
Hope you stay in touch with us.
Best wishes.

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Unread 06-23-2002, 05:36 PM
Newly diagnosed . . . lots of questions and fears


I had a TAH/BSO just 6 months ago for cancer - I was able to go on HRT, but it is a very sticky issue and very good doctors can vary on the answer - and do vary on their recomendations for each case.

I post a lot on the Hormone Jungle, and if you do a search on libido, you will find a lot of ladies with problems. On the other hand, those with no problem tend not to post. I did find libido to be low, but with three kids (little one is just 3) and a full time job, it wasn;t in high gear anyway. Other aging issues have been non -issues - I'm in better shape now than I was at 40 - the health scare really turned me around.

Seems like you are asking the right questions - make sure at least one of those opinions is from a gyn oncologist though--

Unread 06-24-2002, 07:56 AM
Newly diagnosed . . . lots of questions and fears

Hi Leigh,

I, too, am 43 and from Massachusetts! I had a radical hysterectomy (everything removed) with lymph node dissection and ureter tissue dissection on April 3 of this year for Grade 1b cervical cancer. There was no spread to the lymph nodes, so my doctors told me I do not require chemo or radiation at this time.

I was put on HRT on Day 5 post-op. I was starting with hot flashes on Day 4 post-op. My doctor mentioned to me that because of my age, I should really be on HRT for at least a decade, and that although the overall incidence of breast cancer is higher, it is a slight increase in the overall population. I have noticed a few changes already, but my doctor told me to give it a few months and see how I feel/do. My skin initially was much drier, but it seems about the same now. I got acne after the first month, but use Neutragena facial wash and it does seem better now (hope that improves, as my 14 year old son and I are on the same skin care regimen now!!). Even on HRT, I do notice that I have to make a conscious effort to remember things or write appointments, etc. down. Other than that, I do not notice much appreciable change right now.

The only difference I can tell in orgasm is that I used to feel my uterus contract with it, and obviously that does not happen any more !! Otherwise, it is the same, but returning to that activity is just occurring, and I'm probably too early in my recovery to give you an informed answer! (I'm still afraid that I'll do damage to the vaginal cuff!! Guess that fear will lessen with time!).

I'm so glad that your doctors have told you that you have a good prognosis. Cancer is a scary thing. I was shocked and went through a grieving-type process for a few days, but then tried to get myself informed and educated about my disease. Keep up the positive helps! Are you having your surgery in Boston? I had mine at Mt. Auburn in Cambridge, though my GYN/Oncologist's main office is at Beth Israel in Boston. Will be sending you positive thoughts and prayers!

Unread 06-24-2002, 08:45 AM
Newly diagnosed . . . lots of questions and fears

Hi Leigh, just thought I'd throw in my 2 cents. My story is almost identical to Gail's. I turned 44 on April 30, one day before my surgery. Grade 1b cervical cancer, surgery got it all thank god. My Dr said I could keep my ovaries if I wanted, but the cancer had me so scared I wanted everthing out! Let me tell you, it was the best decision I could have made for myself. I suspect that my hormones haven't been right for several years now. I've felt better than I have in years. I'm on premarin and I've recently added progesterone cream and my libido is almost off the charts. I've had to cut the cream dosage in half.

I'm not pro-surgical-removal of ovaries or anything, it's just that like Dorrie said, people with no problems tend not to post. So I wanted you to hear from one person that's had great success with hrt, and I've got one less thing to worry about with the ovaries gone.

My Dr told me that cervical/uterine cancer were completely unrelated to ovarian cancer or breast cancer and since there were no breast cancer in my family, there was no reason I couldn't take estrogen.

Good luck,
Unread 06-24-2002, 04:53 PM
Hi Leigh

I am 4 months post-op from a TAH/BSO for endometrial cancer. I just turned 51.
Fortunately my doctor saw no problem with me taking HRT. I have been using the vivelle dot estrogen patch for 3 months and just started testosterone cream about 2 weeks ago. Both of those are bio-identical to what my body made.
I am doing real well in all areas. My skin and hair are the same as always. My mental functioning has improved since the surgery.
I have not had a problem with orgasm since surgery and they seem to get stronger all the time. We do have to go through the healing process and give things a little time to get back to normal. I am also doing kegal exercises which help.
The testosterone cream has given me back more of a libido and an increased since of well being, energy and enthusiasm for life.
I too was so concerned about how I would feel after the surgery in so many areas. I can honestly tell you I am feeling better than ever.
Good luck to you.
Unread 06-24-2002, 06:01 PM
Newly diagnosed . . . lots of questions and fears

I had Stage 1A cervical cancer. I had a hyster and kept my ovaries which are working fine. I have not seen any differences in my sex life caused by the hyster.
Unread 06-26-2002, 12:12 AM
Newly diagnosed . . . lots of questions and fears

I'm going to suggest visiting the Hormone Jungle and doing research on the different forms of HRT that are available. I'm a big believer in bio-identical hormones myself, although many women do fine on synthetics such as Premarin. The reason that I'm suggesting this is because even if you keep your ovaries, there is the chance that they could shut down after the surgery. I'm not trying to scare you or anything, but it's not uncommon for the ovaries to shut down within 5 years after having the uterus removed. It's as if they 'know' that the uterus isn't there any more. Of course, this doesn't mean that this will happen, but if it did you would be one step ahead of the game. I didn't want to know anything about my cancer other than "can you remove it" and "what are my chances of full recovery". That's not like me. I usually research things. Of course, there's no right or wrong way to deal with the 'C' word. But once the surgery was over, they suggested radiation that would kill my ovaries, along with any cells that may possibly be floating around. The doctor had left my ovaries, hoping I wouldn't need radiation, but had also prepared me for having them removed. Anyway, I was glad to have just those 2 months with my ovaries before they shut down, so that I could research HRT and NHRT and make my own informed decision. I chose NHRT (bio-identical hormones) and I'm doing great on them! Both my gyn/onc and radiation/onc wanted to put me on Premarin. Not to disrespect, but they deal with cancer, NOT hormones, and they're men so....... So anyway, sorry to be so long. Hopefully you can keep your ovaries and they'll last you for years and years, but if not you owe it to yourself to be as informed as possible. Good luck and let us know what happens!
Unread 06-26-2002, 05:59 PM
Hi Leigh

Hi! I had a uterine sarcoma-low grade. A bit like your dx. You were smart to get different opinions. My cancer -endometrial stromal sarcoma-low grade is also extremely rare. I saw two gyn/onc and like you have a good prognosis. That "low grade" is the magic word combination.
You may want to research carefully the fact that uterine cancers return to your remaining organs. So if you have a uterine cancer, If there is recurrence that's a place it could recur. At least with my cancer, that is the first place it would recur. So for peace of mind you may consider having the ovaries out. Also as someone mentioned here, if you have estrogen receptors in your tumor you must have your ovaries removed and have no HRT. (which was/is my experience)
I was incredibly upset with this when I found out. The hysterectomy was something I could handle, but thinking of no hormones and asking the same questions you are now, was a lot for this lady! Although-- if your tumor is estrogen receptive that is a very good thing as it makes your cancer that much more treatable.
It has taken me 5 months to get it all together, but I am coping and living well on no HRT and no natural estrogens either. There are things you can do. You can live well and happy. And in my case I take effexor. It handles the hot flashes and the mood swings. Effexor is an antidepressant and many of the ladies that post on no hormone jungle take it.
I had TAH/BSO with lymph node sampling (17 clear lymph nodes) but the tumor went over half way thru the uterine wall so I had radiation therapy --25 external. I'm glad I did it. Peace of mind is valuable to me.
When you have a rare cancer, there is no protocol. You may find many different opinions. You have to research all you can and make the most informed decision you can make. The best place I've found for lots of information in Pub/Med which is on line.
As for sex and aging....well I hope I don't look older! I do need to use more skin cream and drink a lot of water. I have always exercised a lot and that helps a bunch. I also watch my diet closely and eat lots of fruit and vegetables. I do have to tell you that I have to remove some hair above my lip but that's not a big deal.
As to sex. To be frank.... I have to use something for lubrication. It's still enjoyable. I feel closer to my DH because of what we went through together. There is sometimes some burning. But that may have to do with my radiation therapy. As for vaginal shrinkage, I think there may be some, but DH says it doesn't seem different at all to him. The Dr says I'm fine. Orgasm -- they are different- no uterine contractions, but I guess you forget about that after a bit of time because sex is still good. No libido problem for me but some women mention it.
If I can help you in any way, just ask!
TAH/BSO 1-29-02 lymph node sampling
25 external radiation

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