what to do???

I am 28 and have two children, my mother and maternal grandmother both died of ovarian cancer very young. I have cysts on both ovaries that love to burst, which is awful pain and I have alot of cramping. I have a yearly ca125 and transvaginal ultrasound to be on the safe side. Now my GYN is recomending a hysterectomy, I have been asking for one when I had my tubal but they said I was to young. Now I'm scared, I know I will have to have a total hysterectomy with my ovaries removed and being in my twenties I am concerned about HRT and would like to know about keeping my cervix. I have always had a normal pap so I am wondering with them taking my ovaries, fallopian tubes and uterus what is the benifit of keeping the cervix??? Help, I am so confused about this!

Nicole

Hi,

Some benefits to saving the cervix would be; that the surgery would be less time on the table because the cervix would not have to be detached from the bladder. Less chance of bladder complications. The cervix may help stablelize the uterus within the pelvic cavitiy. There may less of a chance of a uterine prolapse. You will recieve hormone from the cervix. You may keep your internal orgasms, ( I don't believe this can be proven ). The vagina would not be shortened.

Yearly paps are a must. You still run the risk of cervical cancer. You may still have mini periods and or develop polyps in the cervix. Remember, 1/3 of the uterus is the cervix, it's all one continuous organ. The cervix I've read, can be a site for endo to continue to grow.

I'm so sorry about your Mom and Grandmother. With that kind of heartbreaking medical history, I would break that chain and have it all taken. It is not proven that the cervix helps with orgasms, most likely you will never prolapse (something that could be repaired), you won't need the small amount of hormone from it because you will be on hormone therapy, and a shortened vagina will soon enough stretch and accomodate your husband.

You would still have yearly exams and tests but the major threat of cancer would be gone. I would not take any chances by keeping the cervix. In your case, there would be no benefits. (just my opinion) I know you really are scared. Most of us are scared of the surgery or scared we aren't making the correct decision. In your case, I believe the decision has been made for you and now you just have to pass through this time and look forward to a healthy future with your family.

Take care Nicole...

Nicole,

My mom died of ovarian cancer and also had breast cancer. Before having an abnormal CA-125 (which quickly lead to a total hyst and dx of early ovarian cancer), I had been contemplating prophytactic surgery. I would highly recommend that you talk to a genetics counselor before having any surgery. Some points to ponder

--Is your family history random bad luck or does your family carry one of the BRCA genes or LynchII syndrome genes, both of which are associated with increased risk of ovarian cancer (BRCA with breast too, Lynch with colorectal)? A discussion with a counselor will plot out your family tree and then they can assess your chances of having one of these genes in your family.


--There is no consensus on whether a hyst is best. Some doctors are recomending removal of the ovaries alone as a risk reducer for BRCA cases. One still has the HRT issue to contend with (and doctors disagree on whether to provide it in these cases), but it is significantly less surgery.

--You should strongly consider a consult with a gyn oncologist before making this decision. There are a few centers that have special consultation programs to help women at risk of ovarian cancer make these decisions. One is at Hopkins, another at MD Andersen in Texas and one at Fox-Chase in Phila. I'm sure there are others.


I am so sorry you have to deal with these concerns. You are in my thoughts and prayers.

Dorrie

Thank you for your response, I have been begging for gene testing since I heard on the news that it was being done. But...my husband is in the military and our insurance (throught the government) will not spend the money on the testing. Every doctor I have been able to see has told me it would not help my situation and what would I do if I had a positive result. Well, my argument is always, what if it is negative. So my only option is have the surgery and not take the risk or keep the CA 125's and ultrasounds and wait for the bad news (if there would be any). I would love the gene testing and unfortunatly I could never afford to pay for it on my own. I had looked for some clinical studies to participate in but there were none that I could find that would involve gene testing for ovarian cancer.

Thank you again for your help. The cervix issue was kind of confusing for me, this website is awesome for women faced with this decision.

Nicole

Even if you don't have the gene testing, a visit with a medical genetics counselor and/or a gyn oncologist can be very helpful and clarify your risk and what you can do to reduce your risk.

Nicole:

I am so sorry that you find yourself in this situation, wanting testing to avoid possibly unnecessary surgery and not being able to access that level of care because of the finances of it.

As far as supracervical hysterectomy goes: Your cervix provides only about 10% of overall vaginal lubrication. The issues with keeping your cervix mostly relate to keeping the pelvic floor "stable" in that fewer ligaments are cut during the surgery, which in theory is preventative of vaginal prolapse (it couldn't be uterine prolapse, as after hyst, of course, the uterus is gone ). Theoretically, also, a supracervical hysterectomy reduces your chances of cystocele afterward, as the ligaments that suspend the bladder are not interfered with.

Would supracervical vs total hysterectomy change your chances of ovarian cancer? Probably not; however, for those of us with endometriosis, or those who have hysterectomy while keeping their ovaries, there are some implications to keeping it. If they're taking ovaries, then the concern about "mini-periods" is much less, as you'd have no "cycling" to cue your body to even have a period. I did keep my cervix, did not keep my ovaries (my surgery was for possible ovarian CA) and have had no bleeding at all.

Endometriosis is another concern with a supracervical hysterectomy. There is still endometrium left after surgery, which could theoretically proliferate and migrate just like before, especially if you do estrogen replacement therapy.

Please really research your HRT choices. Although you would probably be urged to stay estrogen-free to avoid the chances of the ovarian cancer, you may still be able to take some progesterone (NOT progestin) preparations to help with the surgical menopausal symptoms.

Also, have you checked the NIH or ovarian cancer websites? There are still centers, I think, that are trying to collect gene information from family members in order to study things further. I would, if I were you, ask about the ovarian cancer websites over on our Cancer Concerns forum, where there are a number of sisters who are quite active in ovarian CA circles...one of the Hostesses there just got back from a big advocacy meeting, and maybe she or someone else can point you in the direction of someone still researching the genetic link who'd be able to help you.

I hope you finally get to break the chain, and live to a ripe old age and see your grandchildren...or great-grands...healthy, and cancer free.

Audrey

http://www.cancergeneticsnetwork.org...an/ovarian.asp

Hi Nicole,

I am so sorry about your Mom and Grandmother! My mom died of ovarian cancer this year & her sister died of it in 1996. My sisters and I are involved in a study at a teaching hospital that is sponsored by the NIH. We are closely monitored & the purpose is to find a reliable means of early detection. Genetic counseling was a part of the initial entry into the program. Our mom had the testing done and was negative. The genetic counselor informed us that all this means is that there is some other, as yet unidentified, gene that probably runs in our family and is responsible for the OC. I tell you this only so that you understand the importance of speaking with a genetic counselor & gyn/onc even if you cannot have the testing. The testing itself is only so revealing. Pos or neg, you are still dealing with a probable familial situation. BTW, as a result of this careful monitoring, cysts on my ovaries were watched & this summer I had BSO. (I had endo surgery in 1995, it kept coming back...)

The link above is just the first one I came to when I searched for studies in Georgia, you do qualify. It may be a good one, I don't know, & probably there are others. I would urge you to continue looking for a program you can be a part of. Unfortunately, your history requires you to be extra diligent & in the best possible hands.

There are researchers & professionals out there who really care & want to help you!

I wish you the very best of luck & send many s your way!

Xena

s Nicole

I certainly understand the scary situation you find yourself in.
Genetic testing is very expensive. I am treated at Fox Chase where they have a wonderful family risk assessment program. However, it is not free.
After I was diagnosed with stage III ovarian cancer at the age of 49, my sisters went through Fox Chases risk assessment program. They were advised to get a ca 125 twice a year, a vaginal ultra sound yearly and a rectopelvic exam every six months.
A week ago I attended the Ovarian Cancer Natl Alliance annual conference in Washington DC. And here I learned so much.
Faults are now starting to be found with the BRCA testing. It is not quite the answer that had been hoped for.
I considered having the testing done, but my sisters say it would possibly just frighten all the young women in the family. Especially with the link between ovarian, breast and colon cancer.
My family has decided to just be astute with their health care and follow all the recommendations.
I also learned last week that the new early detection test for ovarian cancer may be available in two to three years. Thus far it accuracy is 100%. The Natl Cancer Institute has a trial ongoing and are looking for high risk women lke yourself. They would use this newer test to screen and follow you with. Give them a call. This blood screening test for ovarian cancer will done as routinely as an annual pap smear in the near future.
I also learned at the conference some preventive measures you could use right now. You already had a tubal ligation. Did you know that taking birth control pills (even with your tubal) will significantly lower your risks. Along with a baby aspirin everyday.
And of course having your ovaries removed. This could probably be done through laproscopic surgery. Much easier to recover from.
My advice to you would be not to panic yet. I would definitely add birth control pills and an baby aspirin to your list of preventive measures.
The theory behind the birth control pills is the stopping of ovulation. When we ovulate the egg breaks through the ovarian surface and disrupts the cells.
This is thought to perhaps be where epithelial ovca starts.
Best wishes. Feel free to stop or Cancer Concerns or email me.
Let me know what you decide.

karenann

Nicole,

I just wanted to second what Karenann said. I did have the testing done for BRCA - it took a while, it was expensive, and ultimately it was inconclusive. However, sitting down and going through the risk assessment was really valuable. Hopkins, at the time I went through it (about a year ago) was suggesting many of the things Karenann was mentioning - asprin, bc pills, and consider removing ovaries.

I hope all this discussion helps.



Dorrie