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Thank You & Question About Keeping Ovaries

kathijr
Posts: 11
Joined: Jul 2010

I want to thank everyone who has taken the time to respond to my posts about my newly diagnosed uterine cancer. It meant a lot to me that you shared your stories and messages of hope, health, and healing. I hope that some day after my surgery and healing are complete that I will be able to support others with the same needs. Right now, we are getting ready to go on a trip that we had planned (my surgery is not until August 20 and I feel absolutely fine, so there's no point in staying home!) so time is unfortunately very short to reply to posts.

Anyhow, I have been feeling so sad and uncomfortable about having my ovaries taken out if they are healthy. I have read that once the uterus affected by cancer and the Fallopian tubes are removed that the risk of ovarian cancer actually decreases by 40% (we actually have a miniscule chance of getting ovarian cancer with or without uterine cancer anyhow.) I have no history of ovarian cancer on either side of my family. Also, without ovaries, our risk of heart disease increases sevenfold (I do have heart disease on my Mom's side of the family and my maternal grandfather died of it), the risk of osteoporosis and Alzheimer's Disease is also much greater and the overall mortality rate goes up astronomically. Of course, this is not to discount the immediate symptoms such as lack of libido, vaginal dryness, hot flashes, mood swings, depression, etc. that taking the ovaries creates. Of course, everyone reacts very differently, but I still feel a high level of discomfort.

When I met with the gynechologic oncologist she and her assistant thought I was a hysterical woman (who happens to have a college degree!) who was just a worrywort when I brought up concerns about how the surgery would affect my quality of life (of course, I know that the uterus, which has the cancer in an early stage, and the cervix must definitely be removed.) They thought I was just worrying about getting old, but all I want is a good quality of life and to continue what I can do now. I felt very insulted, especially since this came from other women (it was almost similar to a male doctor telling me eons ago that menstrual cramps were all in my head!) They wanted me to seek counseling to accept this loss of all my body parts and they never did suggest any surgical alternatives that I might be more comfortable with. Iwas also not happy that they said "absolutely not" when I brought up using my bioidentical hormone therapy afterwards (nor did they ever tell me that my cancer cells would be tested for estrogen recepitivity and a decision about HRT could be made then, which I couldn't believe.)

Thinking about it more, I bet that most of their uterine cancer patients are much older with many more health problems and just do what the doctor tells them to (the preop people said I was one of the healthiest patients they had ever met with---I am very active and take no medications except for my bioidentical hormones.)

As I sat there in that office, I thought about how feeble my mother was in the last 20 years of her life and how many bones she broke and how desperately unhappy she was about the quality of her life and health (she did not have a hysterectomy, but had COPD and many other health problems, including heart disease.) I absolutely don't want to become that woman, but I want to beat my cancer too.

Tomorrow morning I will be speaking to a counselor from the HERS Foundation about this concern. They believe that my ovaries could be left intact and that the para aortic lymph nodes should not be removed.

Any thoughts? Thank you so much once again.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

We are so much alike it's scary. Same age, same extra-good health, same concern for our sexuality and quality of life. I take no medication except a calcium & multi-vitamin daily, and did 10 miles on the ellyptical at the gym 6 days a week; and never weighed more than 130 lbs. at 5'7" tall. I'd never had surgey of ANY kind except my tonsils out as a child. Like you, I was told prior to surgery, based on my D&C, biopsies, and sonogram, and the fact that I had absolutely NO symptoms (not even 1 drop of blood) that I had caught this super early. (My cancer was originally suspected following a routine annual PAP test at my general practitioner's office!) I was so SURE I was fine that my husband and I left for a 9-day hiking trip in Utah 2 days after my D&C, completely unworried.

After my hysterectomy the oncologist told my family that all my organs looked clean but that the cancer had spread down 1 fallopian tube and had penetrated over 1/2 way through my uterous. They took 25 lymph nodes and 1 of them had microscopic cancer cells in it, so I was Staged at 3-c. We were in SHOCK! So, although I hate to shake your confidence in your certainty of a Stage 1 diagnosis, I'm pretty sure that can't be known until after the hysterectomy pathology is done, and can't be staged conclusively without adequate lymph nodes being taken for sampling and disection, including at least one para-aortic node from each side. Without proper staging, your oncologist won't have adequate information for treatment decisions.

But get that ER/PR assay done on your live tissue at the time of surgery (and HER2neu receptivity at the same time, while you're at it, to see if Herceptin is called for.) You can better decide on the hormone therapy if you know for a fact you are ER / PR negative. But don't be hoping for that, as ER/PR negative cancer cells are associated with more aggressive and recurrent uterine cancers. Better to have a cancer that is ER+ / PR+ with a high cure rate and give up your hormones. And you REALLY must give up your hormones if you test positive, as they very likely CAUSED you to get this cancer if that is the case and will FEED your cancer if you are hormone receptor positive. Over 80% of uetrine cancers are hormone positive, so please be HAPPY if you are, because that's such GOOD NEWS as far as achieving a cure.

I was more concerned about my CERVIX being removed than my ovaries. I didn't want a shortened vagina. But my surgeon wouldn't even consider not taking that out too. He said I'd be back in for MORE surgery if I didn't do 'optimal debulking' now. I wasn't given a choice; I'd have had to find another gynecologic oncologist to do the surgery if I didn't do his recommended surgery, and this guy had the most experience and best reputation in my state (and I already was driving 2 hours each way to get him!) Finding someone comparable would have lost me too much time. My current gyne-oncologist and husband both say I am not shortened; but I still thought I was, and use a vaginal dilator daily to make sure I'm NOT since I had so much radiation! You don't need your ovaries. If you are ER and PR negative, you can use a hormone cream that makes you just perfect inside. The photo here was taken in late May/early June 2010 when I was on a cruise. I've had my ovaries out 2 years now, and I think I still look pretty good for 57, and feel really GOOD for a woman who has had 21 rounds of chemo and 33 rounds of radiation to keep my recurremt cancer in check (as I am ER and PR negative). Please concentrate on staying ALIVE for now, then deal with the rest later. ((((hugs)))

kathijr
Posts: 11
Joined: Jul 2010

Hi Linda,

Thanks for sharing your experience and message of hope and inspiration. I have to admit though that your story was quite frightening to read. Everyone has been telling me that my cancer is most likely at a very early stage and your experience shows that things could be quite different. By the way, my ultrasound was very normal and my gyno was quite surprised that I had cancer. Had you been getting regular annual exams, pap smears, etc.? I'm sure that the answer is "yes", but I just had to ask. I was very regular in doing this and never had any Pap smear result of concern until now. After reading your message, I may be quite lucky to come out of this not needing chemo or radiation or maybe even living to tell the story. So, I guess I'm going to focus on that. Thank you again for bringing this situation into perspective.

I am thinking of you and hope that you continue to be well.

mmurcia2000
Posts: 27
Joined: Jun 2010

Having just been where you are- I know its scary. I think that the take away from some of the others posts is that they just can't give you definite answers about the stage, etc until after surgery.

This made the situation more challenging for me as well. I also had regular Pap smears and even more than that, I have had 4 surgeries (1 laparasocy and 3 hysteroscopies) in the past 10 months to remove cysts and to see if they could determine why I wasn't having a period. All those pathology reports came back fine, but the last one did not.

I know it is difficult to have to make decisions with so many unknows, but what my oncologist said was that if I did not want my ovaries removed, we had to have the conversation of what would happen if he saw anything abnormal once they were in there. I decided I wanted them out, so that wasn't an issue.

Keep reading the posts and asking questions. There is a wealth of information and experience on here. I have learned and given suggestions that only people who have gone through it can give.

mmurcia2000
Posts: 27
Joined: Jun 2010

Having just been where you are- I know its scary. I think that the take away from some of the others posts is that they just can't give you definite answers about the stage, etc until after surgery.

This made the situation more challenging for me as well. I also had regular Pap smears and even more than that, I have had 4 surgeries (1 laparasocy and 3 hysteroscopies) in the past 10 months to remove cysts and to see if they could determine why I wasn't having a period. All those pathology reports came back fine, but the last one did not.

I know it is difficult to have to make decisions with so many unknows, but what my oncologist said was that if I did not want my ovaries removed, we had to have the conversation of what would happen if he saw anything abnormal once they were in there. I decided I wanted them out, so that wasn't an issue.

Keep reading the posts and asking questions. There is a wealth of information and experience on here. I have learned and given suggestions that only people who have gone through it can give.

mmurcia2000
Posts: 27
Joined: Jun 2010

Kathijr-
I completely understand your concerns. I am 30 years old and had a radical hysterectomy 3 weeks ago. While I am new to the cancer world having been diagnosed about a month ago- my journey began 3 years ago when we started trying to get pregnant.

My first suggestion would be to find a doctor that you like and addresses your concerns. This is going to be crucial considering that you will need to see the doctor for follow up too not just for surgery. You have to be your own advocate. I was seeing a reproductive endocrinologist whom was not proactive. He kept sending me to my ob/gyn and the ob/gyn was kept sending me to him. This went on for a year until I switched doctors and was ultimately diagnosed. Trust your gut instinct.

My doctor discussed leaving my ovaries, but I have had a total of 3 surgeries in the last 2 months including the hysterectomy. While everyone is different, make sure you make an informed decision. What my oncologist discussed with me was that if I wanted to leave them in, he could biopsy and wait to see if they were cancer free. If they weren't, he would have to go in and remove as well. For me, this was not a risk I wanted to take. My decision was also based on my mom's experience- she has a partial hysterectomy and then had to have another procedure to remove her ovaries a year later. I was just ready to be done with all of it.

I have begun to have hot flashes,but an opting not to take hormone replacement. My oncologist said it was ok for me to try an over the counter herbal supplement called Estroven and we would reassess in a month. I will keep you posted. I am not sure how I will feel in a month, but today I dont feel like an old woman. Quite the contrary- I feel young and full of life to be cancer free.

bea-mil's picture
bea-mil
Posts: 106
Joined: Jun 2010

Hi
I had my total hysterectomy March 23rd this year and I don’t have any menopausal symptoms, at least nothing visible (no hot flashes, no night sweats etc)I call them "diet dependent symptoms", for the later one (Alzheimer, Osteoporosis etc.) I guess I have to wait few years. It won’t be an overnight occurrence. I hope I will have time to deal with these problems later on. There are easy ways to prevent them from happening in contrary to cancer.

My advice: read as many posts on this network as possible, search the internet, read books, talk to the doctors, your family, friends and please, please come up with your own conclusion otherwise you will regret any decision made with the influence of others (even if they are doctors). No one can tell you what to do because you are the only one who will be dealing with the consequences.
Bea-Mil

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I'm sorry to have alarmed you, Kathi ((((Hugs)))), because ignorance truly is bliss in this journey, and I truly hate to inspire worrying in anyone. But I couldn't just let you make decisions based on an assumption that I PRAY is true, but may not be. Dozens of other women posting here with the rarer forms of uterine cancer (cancers that don't have symptoms) could tell you similar stories, and probably held back hoping to leave you feeling safe. Maybe I should have done the same, and I'll feel horrible if I've caused you sleepless nights. PLEASE don't worry; it does no good. I just didn't want you to make a decision about any of this other stuff until you have a real prognosis in hand. Hopefully, probably, you will be Stage 1 with the more common ER+/PR+ very curable uterine cancer, and surgery will be all you need. You'll be so happy to hear that, that you won't mind giving up your hormones and ovaries!

I also feel I should have said that, if you end up with the very curable "ER+ / PR+" type of uterine cancer, your hormone treatments may have "CONTRIBUTED to" you gettung cancer, instead of saying it "CAUSED" your cancer. Risk factors for this type of curable uterine cancer are:
* high levels of estrogen
* endometrial hyperplasia
* obesity
* hypertension
* polycystic ovary syndrome[citation needed]
* nulliparity (never having carried a pregnancy)
* infertility (inability to become pregnant)
* early menarche (onset of menstruation)
* late menopause (cessation of menstruation)
* endometrial polyps or other benign growths of the uterine lining
* diabetes
* Tamoxifen
* high intake of animal fat[citation needed]
* pelvic radiation therapy
* breast cancer
* ovarian cancer
* heavy daily alcohol consumption (possibly a risk factor)

I had NONE of those risk factors, and neither did most of the women posting here that ended up with the more deadly rare aggressive types of uterine cancer. But exposure to unopposed estrogen is a recurring theme in the more curable common type of uterine cancer.

Again, I'm so so sorry if I have introduced fear into the darkest parts of your nights. I can't tell you how bad that possibility makes me feel. Knowledge is power, but sometimes knowing stuff sucks.

In answer to your question, I always religiously had a compete physical every year including PAP, mammogram, even colonoscopy once after turning 50, and this was my 1st abnormal PAP. I never got sick and so never saw a doctor; and I worked out aerobically so hard at the gym that I thought I'd better annually make sure I was healthy enough to do such physical exercise. I was expecting the typical "Wow! You are in amazing shape!"; not the "We think you might have cancer."

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