Please Help Sisters...I am freaking out...and need answers and support!!!

Hi Sisters!

I am so desperate and do not know where to post this...it is regarding cancer risk, but I have no Dx, and it may not be appropriate to post in the Cancer forum, and well, I am pre-op and loosing it. I am dreadfully sorry, it is long, but I need you guys!

Let me start off by telling you I am a long term soy eating vegetarian 3 days away from a LSH BSO and I am having serious second thoughts, about relinquishing my ovaries! ! I am in a quandry!

I have fibroids, a hemangioma on my liver (a benign but estrogen aggravated tumor) as well as 2 fibroadenomas, 1 node they cannot determine to be the same...and calcification that returned after a stereotactic biopsy 1 1/2 years before. I found out in the last couple of years about my DES (synthetic estrogen) exposure in Utero no doubt I have estrogen dominance!

Six months ago I went to a new gyn who said I had an enlarged uterus and fibroids, he sent me for an ultrasound as well as a routine mamography. The us confirmed the fibroids The radiologist (who knew I was a DES daughter and that my Mother had Ovarian Cancer at 44) knew I would be jumping out of my skin (at 45) until I got the reports. Even though she really was not supposed to she said "the ovaries look good although the left one is being pushed all the up to your ribs by the fibroid.

I also had blood work at the time originally looking to have a myo, thinking I'd try to conceive, once the troublesome fibroids were out. Bloodwork came back normal with working ovaries that were ovulating at the time!

The mamo showed 4 breast abnormalities that they did not want to remove until they determined my cancer risk through genetic counselling and testing. The gyn also recommended genetic counselling because of the link of Ovarian and breast cancer from Mother to Daughter, they wanted to see if I had that gene. Then I would be at risk for Ovarian and or Breast!

In the meantime while waiting to be ok'd for the test by insurance, I found out (if out of pocket) the test would be about $2300.00! I convinced My mother to get the test, her insurance covered it, they could not refuse to treat her for a pre-existing condition and just because everything was gone her genes had not changed. She was sent for the Brac1 and Brac2 and she was supposed to have a 3rd test that I can't remember the name! They only gave her the first 2. She came back *negative*!!!!!!!

I went for the counseling (that's free the test is not) and although there are female type cancers on my mother's side there was not enough of a cancer risk on my Fathers side to justify to my ins. co sending me for the $2300.00 test! The mostly "boys" family all died of heart disease. The only 2 women; My grandmother died of old age, and her sister (who had breast cancer at like 80) and then died of old age. I favor my Father exactly in looks, same allergies, and bronchial problems due to those allergies! My Dad had skin cancer on his nose from sun exposure on the job!

They apologized to me that I am in this Cancer risk limbo, but could not justify the test to the insurance co. We are assuming my Mom would have been negative in the 3rd test, whay did they not give it? Is it depenant on the first 2?

II went back to the gyn, Jan wednesday the 5th, after being bedridden for 2 weeks. My abdomen blew out!!! I was ready to tell him about my Mom's test, the results of my counselling (nothing) and to do the myo. I was fully prepared as he told me (6 mos before) that it may become a hyst as he could not determine if the fibroids were on a stalk or in the wall! There might not be not enough uterus left to save!

I told him my mother was negative, my fathers side has no cancer to talk about. He still said that he could not justify saving my ovaries due my mothers history and the DES. There may still be a gene out there that has yet to be discovered! Which kind of made sense to me at the time...he wanted to do LSH BSO and put me on estratest. Because I was devastated to lose the intimacy with DH! When I voiced my concern that as a DES daughter, I have read I should not use HRT. He told me he would use the smallest dose.

For 20 years I tried to get my mother off estrogen, she just recently weaned off. I have read about good soy, and progesterone helping with symptoms of menopause and I would always prefer the more natural methods if they work. I thought I'd attempt no hormones and if I lost libido, maybe some test, (but I think no estrogen) but you never know~! There are women who start out with HRT and go off, there are women who start off with none and go on! I figured I'd fill the Rx and take a wait and see attitude!

It occured to me yesterday, the followup appt. (to discuss the genetic test) with the breast doctor is in Feb, so not only does she not know I am having a hyst and taking the ovaries in 3 days, she does not know the Dr wants to put me on HRT. so I called the office yesterday and her nurse got back to me. She told me they do not reccomend HRT for Breast Cancer patients, and when I reminded her I am not a breast cancer patient she said "We have not ruled it out!" If the test had shown genetic link to ovarian or breast cancer, they recommend a routine bilateral prophylicatic mastectomy!

I mentioned the soy and she said "we do not recommend soy for Breast Patients, it has estrogenic effects and can encourage breast disease!"

Am I supposed to stop eating soy too? I mean... I am thinking, she is probably referring to women who have their uterus and are making hormones, and should not add to their own estrogen levels with soy (which is probably what I am doing now). But if you have no ovaries and eat soy that can't possibly be "dangerous" levels of soy can it? Especially if you are eating the good soy, and not the processed stuff like soy sauce!

It is one thing if I make the decision to not use HRT but to not have any options or alternatives if I changed my mind? Now they are telling me I can't do HRT or eat soy? I have No recourse should the symptoms go out of control! I am wondering if my risk for breast cancer is worse at this point then my risk for Ovarian cancer. If I lose my ovaries and go on HRT then I am at risk for breast and heart disease (which is what my entire dad's family died from!) if I keep the ovaries, not use HRT am I still at risk for fibroids, and female disorders because I still have estrogen? Do you lose any levels of hormone when you do the hyst and keep the ovaries. I seem to remember being told some hormone resides or settles into the uterus and then if it is gone there are lower levels in your body, but not drastic. I wouldn't mind losing some hormones, since all the soy and DES has probably given me high estrogen levels and encourged all these growths!

The nurse said she will call the GYN today so they are on the same page! I am wondering if I should go to my pre-op visit with my DH and tell the Dr I want to keep the ovaries and just go for frequent checkups. I think if I lose my hormones, I have no options at all, and I have not even been dx'd (knock wood) with cancer at this point!

Anyone regret keeping their ovaries?

What I mean is have any of you out there opted to take everything due to pain, fibroids, fear of cancer risk, whatever Dx...and left the ovaries...and were later sorry? Perhaps because there was still pain in the ovaries. Or because it deteriorated anyway? Or because of cancer? Is there still ovulatory type pain even with everything else gone?

Also has anyone kept the ovaries or ovary, then gone back in to remove it or them?

Does anyone here know if you retain one ovary does that mean you are producing 1/2 the hormones, or does it not work that way!

Please I am so overwhelmed I am scheduled for friday, I do not want to put off surgery, I am living with pain in my fibroids. I just need to make an informed decision on keeping the ovaries or one ovary or giving it up! I am guessing after a hyst they can always take the ovaries...but they can never give them back after they are gone!

It seems such a sin to keep what seems to be working ovaries1I know we have no idea what the Dr will find and if all this will change at the time of op...I almost wish I had *less* of my own hormones, just not all gone!

Thank you all so much ahead of time. I am sorry for how desperate and long this is!
Love & Light

Hi There!

It sounds to me like you're having a case of pre-op jitters. I know what it's like!

No one on this site can advise you whether to keep your ovaries, or have them removed. Generally speaking, most doctors probably recommend retaining healthy ovaries, unless there is a significant genetic risk of ovarian cancer. You really need to consult with your doctor as to the wisest decision for you.

Have some of us Hystersisters kept their ovaries and later had them removed? Yes. Have some of us had them removed and later regretted it? Yes. Have some of us had them removed and are happy with that decision? Yes. The experiences of the members run the entire gamut. Hopefully some members will come along and share their experiences and feelings about their decision with you. But, since we are all different, you really need to make a decision, in partnership with your doctor, that's the best for you.

Many s