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Unread 10-23-2011, 12:46 PM

I have been schedule to have a LAVH coming soon... I'm very nervous with the findings. My family history of Ovarian Cancer runs very deep in the family it has proceeded to the third generation and how I am going thur testing and have been told that I should have a Full Hysterectomy, but to keep my Cervix, which I keep going back and forth on... "is that a good idea or not". I currently have a 7.1 cm, 5.8 cm, 3.9 cm, 3.0 cm with a ovary of 4.8 cm and my uterus is enlarged with endometrial 16 mm. How do you make a decision on if you should or shouldnt, especially when you think that this would never happen to you!!
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Unread 10-23-2011, 01:40 PM
Re: Nervous


I had to reply to your post.....because I am in a very similar position! My mom had endometrial cancer at 64 yr, about 9 mth after TAH/BSO, she had ca in the peritoneum.....did chemo for a few months but passed away at 66 yr. I had maternal aunt with br ca in her 50's. So...i have a family history. Plus, I have pcos. I have been screened with tvs and ca125 for the past 5 years. This year at my annual, they found a ca125 slightly elevated, repeated it and it was elevated slightly again.
Both my obgyn and hem onc recommeded a radical hystercetomy.
I saw 2 gyne oncs, who told me that this is a difficult dilemma for me. They said that I could either keep repeating tests to see what happens or I could have surgery...they left the choice up to me. They both said that the peitoneal ca in my mom was most likely a metastasis from the endometrial.
They both reassured me saying that this was most likely benign for me, but there was no way of knowing until surgery. I have decided on surgery (nov3rd), because I cannot take the anxiety of the increased screenings and worrying about the results. Oh, and they have all told me that Ca125 is a very poor test to use for screening in premenopausal women like me.
However, I am 47 yr old, close to menopause, and I hope the surgery I am having is simply prophylactic (ie, benign findings) or at worst, if something is there, it is caught early.
I am very scared of surgery, and the outcome, but this really is THE only choice for me. Knowing I have done all I can to reduce my risk with this surgery, will hopefully give me some peace of mind.
I dont know if I have helped you any, but good luck with your decision. It is such a personal one, that only you can decide for yourself.

Have you considered genetic counseling? I did but at this point have decided to not go through with testing at this point.
Unread 10-23-2011, 01:44 PM
Re: Nervous

Oh...forgot to mention....mine will be a LAVH BSO....done by a gyne onc (very much recommend that one do yours as well). He said hes pretty confident everything can be done laprascopically, but if he needs to, he may convert to a TAH, depending on whats seen initially and on frozen section.
I am having EVERYTHING taken out...cervix too!
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Unread 10-23-2011, 01:56 PM
Re: Nervous

If I'm not mistaken, with an LAVH your cervix is always removed. With an LSH there is an option to keep your cervix or not. I just had my LAVH with cervix removal on 10/19. The reason I decided to remove my cervix is my history with bad pap smears. I've had several bad paps, hpv, biopsies and cryrosurgery on my cervix and finally decided that I just didn't want to continue dealing with the cervix issues when the option to remove it and any risks was available during my hyst. Since I'm only a few days post-op I cannot attest as to whether anything is different in the sex department, but mentally I am very pleased with my decision. Physically recovering from the LAVH has been great too. I'm not in a great deal of pain and seem to be recovering very well. The biggest issues post op have been the bruising on my belly because my uterus had fused to my c-section scar tissue and it took a lot for my GYN to get the uterus removed from the scar tissue to remove it vaginally; and of course the gas pains. Other than those two things I actually feel pretty good. Very tired, but not in a lot of pain. I wish you a lot of patience, wisdom and luck in making your decision. It's a very personal one and what works for one woman doesn't necessarily work for another. Good luck and best wishes.
Unread 10-23-2011, 02:51 PM
Re: Nervous

First... I want to say Thank you all... for responding to my post!! Its great having other advise from people you really dont know and are going through the same thing "Thank you".

My GYN, has said that with me being 45 and not in menopause she doesnt feel that it should be removed but, I will still have to do my annual pap smears. I have, had both neg and positive results from the pap smears and she feels that keeping the cervix should not be a problem. Its really hard to decided on keeping it with all of my history and with the family history, but I have also been told that if you remove it, sometimes you can have other problems with other organs shifting after surgery since you dont have your cervix to keep things in place.

I have not considered genetic counseling.

I have done all the testing the ca125, and TVS... my ca125 has come back different each time and the next test, they have recommend is the Brac 1 and 2 which I dont have a problem of taking but... who really wants to pay $3,000 if your insurance doesnt cover it... and how insurance companys pick and choose now days... why put myself through that....

I do feel this is THE only choice for me is to have the hystercetomy, but yet I do question it over and over....

Again, "thank you" for all you repiles
Unread 10-23-2011, 05:18 PM
Re: Nervous

The BRCA 1 and BRCA2 are the gene mutations that may predispose, or increase ones risk of getting cancer if they have the mutations. It is a blood test.

To get genetic testing done is a HUGE decision. Please seek genetic counseling before you agree to these tests. They will go through all the pros and cons of getting tested. At my counseling meeting, I was told that one model states I have a 5.3% chance of inheriting such mutations and another model said a 0.6% chance. I am not sure if insurance will pay for docs and the genetic counselor can ask them to based on their professional and medical assesment of me, but its no guarantee.
Also, we did not test my mother for the mutations...that would have been a much better way to go in terms of getting more conclusive results.
The way I figured it....regardless of whether I was positive or negative, I would still go through with this surgery. The only reason I may get tested later on down the road is for the sake of my teen daughters.

And yes....I have questioned my decision for this surgery MANY many times. I have been really close to just not going through with it...but as it gets closer, I am feeling resigned to it, and trying to think of all the pluses that surgery will bring me. Focusing on the negatives (which is only natural) will make you doubt and second guess a lot.
Just keep coming to these forums....all the ladies here are just wonderful......with their support and advice, and especially the fact that they know exactly what this whole deal is about! I can only talk to friends and family so much...but unless they have been where I am or are in my situation, they cannot really understand the real fears, emotions etc that go along with this surgery.
Unread 10-23-2011, 06:06 PM
Re: Nervous


I understand that the BRAC 1 and 2 are gene mutation and only give you results of maybe having the gene, the only reason why I thought about doing it was because I have two wonderful girls, and that way I would atlease have some idea for them, but I have decided not to go through with it...

I have decided to go with the surgery to get everything over with and move on with my life and hope for the best, but just thinking about the whole thing makes times very hard... because your always thinking should I or shouldn't I.... its hard at times because friends and family really don't know how you feel deep down inside, all they can see, is the out come and say just get over it and do it and you will feel better, but as a woman you really think... you would'nt have to give up some of your womanhood... (if thats the correct way to say it)!

I wasnt going to put my information out here, but after reading other's and seeing how they responded in a positive way, made me do so.... I appreicate your response and the positive comments.
Unread 10-24-2011, 06:30 PM
Re: Nervous

Yes the brca1 and 2 are the two main ones involved in br and ovca.....but there are (as my genetics counselor) told me , other genes that have not yet been identified that may also have a role in familial cancers. Also, sometimes results come back as "uniformatative".

It really helps to come here and talk....before I joined this site, I would never have thought that there was someone out there going through the same heart wrenching decisions and emotions because they are also in the same position.
I have had well meaning family and friends who say "just yank everything out....what do you need those organs for anyway? Your done with kidds....etc..etc..."
But, thats where the true lack of understanding comes in.
Its great that you have made a decision, just like I have, but I still scour this site trying to find answers to so many doubts and questions I have about this surgery, and I am still wondering if I have made the right decision.
I know that increased surveillence, adversley affects my quality of life because unfortunately, there is NO good screening for ovarian cancer. That is what made my mind up for me.
I hope that we can continue to support eachother through this journey we are about to take! Do you have a surgery date scheduled yet? I for one cannot wait to put this awful pre op period behind me, and move on and enjoy my life and family. I am sick and tired about worrying about my health all the time...and just want a release from this. Having a family history has always hovered over me and haunted me at every TVS and CA125 blood test I have to take Heres to a much better, improved life for us post op!!
Unread 10-25-2011, 10:01 PM
Re: Nervous

I must agree with you about the site, I would have never thought that there are so many question's, answer and someone thinking the same as you on what to do... and looking for someone to talk with that may feel, like you do. It's great to be able to communicate with those, like myself.

Looking at my history with fiborids and previous surgery and now with a very enlarged uterus, It seem's as if I have no other choice, but to have the surgery and be able to move forward with a free mind and no longer pain and suffering as I do on a daily basis now.

I have been told a date for mid Nov, but that plays part of where exactly I will be having it, my doctor would like to do it at this surgerical center and the insurance is questioning the main hospital, so now I'm on hold until they decided... go figure!! When is your date set for... Look forward to more support on our journey together.!!

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