Women's Health Community

Whoa Nellie here! Your physician is jumping the gun a bit.

Here is a good article that discusses ovarian cysts, including complex cysts:

http://www.nlm.nih.gov/medlineplus/ency/article/001504.htm

?A hysterectomy? Unlikely. At the most, an ovary might need to be removed but it is important that it be determined first whether this is a benign (non-cancerous) situation or something more serious.

At any rate, there is no need to remove a uterus in the event of ovarian cysts.

Gail

Whoa is right! I was in your almost exact situation! You must have been skeptical since you posted here. Here's a link about ovarian cysts - http://www.ovaryresearch.com/ovarian_cysts.htm.

Based on my overtreatment experience and how it's permanently affected my life as well as what I've learned through research and networking with other women, I wish I had done things very differently. Some things I've discovered since having healthy organs removed:

1) Hysterectomy has been shown to be the #1 unnecessary surgery after c-section.
2) Ovarian cysts are very common and most are benign (non-cancerous). Ovarian cancer is very rare. If you don't have a family history, your lifetime risk is less than 2%. A frozen section done while you're under anesthesia would tell if the cyst is cancerous or not. If it's benign, I wouldn't know why anything else would need to be removed.
3) The CA-125 test isn't accurate in diagnosing ovarian cancer. It's more useful as a tool in assessing cancer treatment effectiveness.
4) Oftentimes ovarian cysts can be monitored via ultrasound as they may resolve on their own (generally not the case though with complex cysts).
5) Doctors tend to refer to specialists who will agree with their treatment plan. It would be a sort of "slap in the face" to refer you to a specialist who would disagree with the referring physician. So when seeking "second" opinions, it's best to go outside the first doctor's "network" (to a doctor affiliated with a different hospital and group of doctors).
6) Many hospitals (even ones NOT associated with universities) have graduate medical programs which require that med students assist with surgeries to get their M.D.
7) When any type of scan has been done, it can be helpful to get the actual scan and a copy of the scan report before seeking second opinions so that additional scans aren't done. Of course, with an ovarian cyst, additional scans may be needed at certain intervals.
A doctor with the proper skills can oftentimes remove ovarian cysts and preserve enough of the ovary for normal hormone production.
9) The uterus and ovaries have functions beyond reproduction.

There's an "earful" for you!

Dear queendiva: Both georgiagail and Anon_6061 have given you correct information. However, I would add a single point. If an ovarian mass appears to be very suspicious for cancer, a GYN will ask for a consult from a GYN oncologist and will get exploratory surgery set up promptly. This has to do with concerns about litigation--"delay to treatment when patient had evidence of possible cancer". If the complex cyst can seem to be monitored for a time, that would happen.

Anon_6061 had an excellent suggestions about getting a second opinion. Her suggestion about getting the scan and any other records to take is a good idea, too.

Since many women will be following your story, would you be kind and let us all know how things turned out for you. We all will keep you in our thoughts.

In Support,
Jane

Today I met with the oncologist and I've decided to have a total hysterectomy which is scheduled for 10/3. My decision was pretty much made before meeting with the oncologist - it was based on the fact that I have a history of endometriosis which involved 4 laparoscopies and 1 ending in a laparotomy, a sister who is fighting ovarian cancer 3C and endometrial cancer 1A who also had a history of endometriosis - her lynch syndrome genetic testing was inconclusive. And our mom was scheduled 40 yrs ago for gallbladder surgery and when they opened her up they found her liver and colon were loaded with cancer - my sisters oncologist is assuming she had ovarian cancer which they didn't bother testing her for back then - I was just about 7 yrs old when she passed. There are other cancers on my moms side that point to the lynch syndrome - so we have a definite high risk.

The oncologist did tell me for sure the one ovary had to be removed and they could biopsy during the surgery and then do the hysterectomy if necessary. He gave me other options with removing both ovaries, then total hysterectomy I know I'm braca negative, but still at a high risk for ovarian cancer and they can't guarantee I won't get it if I only removed the one ovary. The cyst is suspicious, and no one can guarantee iwont need future surgeries if i only remove the left ovary The only guarantee is the complete hysterectomy.

After seeing what my sister is dealing with, after loosing my mom at 7 and having an 11 yr old daughter myself, I need to protect her, I choose to play safe and not gamble so my decision, although difficult, was basically made prior to seeing the oncologist. I'm 47 and not planning on any more children, I was lucky to have my daughter as I was told around age 28 to have a complete hystectomy because of the endo - I wanted children so I didn't do it then. Now I owe her, me and my husband to do what i can to live and not have to worry about the threat - to watch her grow up, get married, have a family - all of the things I missed out with my mom.

Don't get me wrong, I'm scared as hell, I believe this is the right decision, I hope it's the right decision - I'm scared with what lies ahead, the hot flashes, etc.

Thanks for being my sounding board, I greatly appreciate it.

Sirry for the confusion QUEENDIVA64 and An_247957 is the same person. New here and quess I hid my name when I posted my reply last night.

Having a family history of female cancers definitely puts a whole new spin on it. I'm sorry you have this added to the mix. I don't have any family history of any cancers so I was overtreated. I know nothing about genetic testing for Lynch Syndrome but I know it increases risk for several types of cancers. According to http://ghr.nlm.nih.gov/condition/lynch-syndrome "People with Lynch syndrome have an increased risk of cancers of the stomach, small intestine, liver, gallbladder ducts, upper urinary tract, brain, skin, and prostate. Women with this disorder also have a high risk of cancer of the endometrium (lining of the uterus) and ovaries. Even though the disorder was originally described as not involving noncancerous (benign) growths (polyps) in the colon, people with Lynch syndrome may occasionally have colon polyps. In individuals with this disorder, colon polyps occur at an earlier age than in the general population. Although the polyps do not occur in greater numbers than in the general population, they are more likely to become cancerous.

Hope your surgery and recovery go well! Let us know.

I didn't think to ask you before - Will you be allowed to take estrogen? The loss of your ovaries typically involves many more symptoms than hot flashes as well as documented increased health risks. Taking estrogen appears to reduce some of these risks. Here's a link about those risks and the effects of estrogen:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2585770/

My oncologist told me most docs wouldn't prescribe HRT because of family history, but since I'm Braca negative he would give me estrogen. He also said a lot of women tend to take it in the beginning and then stop because of risks involved. So far, he is willing to prescribe if I needit

There are some risks with taking estrogen (more so with oral than transdermal) but living in a hormone deficient state from ovary removal has many health risks too. Of course the decision to take estrogen is a personal one. My depression was so severe I had to take something. I chose estrogen over anti-depressants and anti-anxiety meds. It also helps with all the severe menopausal type symptoms. Of course, you may be one of the few lucky ones who doesn't have severe symptoms.

When was your sister's surgery and how is she doing?

Her surgery was two years ago. The cancer was in her lymph nodes and she will be on chemo for the rest of her life. She just ended radiation treatment which seems to have shrub word but she goes twice a month for chemo. She feels the best now since this whole thing started. She is not on HRT. Thx for asking about her.