Hysterectomy, ovarian cancer and untrustworthy obgyn. How to find a conservative doc?

Question

I went to the doctor for irregular period and was sent for an ultrasound. The ultrasound showed complex cysts in both ovaries. There are no secondary signs of cancer such as ascites, lymph involvement, metastaes, but my doctor began saying "We assume it is cancer - you need to prepare for surgery and chemo."

Off to the gynacologist she recommended and this guy says - it is a 15% chance it is ovarian cancer, and if it is we will perform a total hysterectomy. If it is NOT cancer.... we will perform a total hysterectomy. Now I found this disconcerting. I asked - why would you take both ovaries? His answer - because they might become cancerous. So why take the uterus? "Because that is what we do - we call it a total clean out."

In the mean time, I consulted with the HERS Foundation and they went over my radiological reports and said that there were no signs that would indicate cancer. In fact, they said that the radiological reports were insufficient and needed to be redone - essential information is missing and some information just makes no sense (suspected findings - do you see them or not? That is the only question you are being asked radiology man!) They suggested I seek out an obgyn who would perform a cystectomy.

So here is my conundrum - two radically divergent opinions. I do not feel comfortable with a plan to remove a healthy organ (my uterus, which I have grown attached to!!) because that is "what they do." In general, I feel as though this guy just wants to perform a hysterectomy regardless and I know it is not necessary if there is no cancer. On the other hand, I don't want to delay and start the process over for fear that if it is cancer it might progress leading to the loss of my reproductive organs and all other signs of life.

Has anyone sought a more conservative physician for the treatment of cysts or fibroids? Is there any good way to expedite the process on the chance that the clock is ticking? I am in central Ohio if anyone knows of a good surgeon who isn't slice-happy.

Thanks for your time!

Answer 1

I HIGHLY recommend you check out www.hystersisters.com. They helped me EXTREMELY with my questions and advice on hysterectomies. It's a support group and it's FREE.

I wish I'd found the site before I had mine. A lot of my questions and concerns would have been answered with just looking at the responses on this website. But I stumbled on the site a few days after my hysterectomy and learned of various things I should do before the surgery, things I'm entitled to at the hospital (which the hospital doesn't tell you), questions to ask the doctor, etc. It's an awesome site for women.

I hope it helps you, it has helped me and my family and friends.

Answer 2

I am not sure what you are asking here. What you might not know about cancer is that it is a deceptive disease and it is a killer. Cancer is a progressive disease which means it starts out pretty much microscopically . .you can't see it . . a doctor can't see it . . and there are no tests that will find it .. but a doctor may have had experience with other patients and seen the same type of cancer occur over and over again . . and end up killing his patient. So this is why you are receiving this advise. You don't have to take it . . but in the opinion of the first doctor he believes that you have cancer but it is not yet visible. Usually by the time it becomes big enough to cause trouble . .it is too late.  So . .yes . .you have a problem . . a decision to make . . a gamble really, because there will be no guarantee of which doctor is right. If the first doctor is right . . and you do not have the surgery .. you may end up with a life threatening disease to deal with. But if he is wrong than you will lose a 'healthy organ'.  It's your choice really.

When my teenage son was diagnosed with abdominal sarcoma (in females his type of cancer is mistaken for ovarian cancer) he had five large tumors that had 'seeded' hundreds of smaller malignancies into the peritoneal lining of the abdomen. He was filled with cancer and it was considered inoperable. We knew that his only chance for survival with an abdominal cancer was with complete surgical removal. He underwent nine months of high dose chemotherapy and two major abdominal surgeries . .one which used chemoperfusion. Finding an excellent surgeon with the skills to remove such extensive disease . . that was the problem that we had . . I was devastated after the first surgery when his doctor only removed 75 percent of the disease because I knew he needed at least 95 or 100 for the best survival chances . . we finally did find a surgeon but had to travel across the country for treatment. After that he did enjoy nine months of 'no evidence' of disease but relapsed. He died a few months ago.

I know that you do not think that you have cancer . . so you may just need to go with your gut feelings on this . .its tough though .. knowing what I know about abdominal cancer I would throw every single piece of ammunition at the cancer that I could. Its devastating, fast, aggressive . .  if it is cancer. Unfortunately, cancer in the abdominal area rarely will allow you to make a mistake.

You might want to check with people at Eyes on the Prize who deal with these types of cancers and decisions more often than anyone here:

http://www.eyesontheprize.org/

ASCO: Ovarian Cancer Overview

http://www.cancer.net/patient/Cancer+Typ...

NCCN: Ovarian Cancer Treatment Guidelines for Patients

http://www.nccn.org/patients/patient_gls...

Good luck with your decision.