Irritable Bowel Syndrome Message Boards | Posted this in Living Room but wanted to ask here too

Hi, Michelle -

I started a long reply a couple of days ago to your Living Room post but I thought it would just be "overload". The bottom line is --- this is life-changing surgery, whether or not there's cancer, and it's my firm, sincere belief that you would benefit from a second opinion from, at the very least, another board-certified gynecologist. I believe you would benefit far more from the counsel of a medical professional than from our humble opinions, no matter how lovingly offered. OUR experience may not be YOUR experience regarding the surgery, outcome, future ramifications, etc. Each of us is unique. As you're coming to see, each step you take down this road can bring up more questions, more forks in the road - and THIS is the time to ask all your questions, get information, and have your Plan A and Plan B - what would you do if this or that occurs? That's what your doctor seems to be asking you. No matter how "in charge" they are, ultimately some decisions will rest with you (and some may have to be made on the spot, in surgery). These are not the kind of decisions a patient wants to make under duress. No matter how well prepared you are, there may be some things that will come up that you haven't thought of - things that the surgeon discovers while he's in there, perhaps. I would want an excellent diagnostician, a technically excellent surgeon, a good decision-maker in a crisis situation, and one who will respect my concerns and goals and take them into consideration whenever possible. I also believe - based on the research I've done, the journals I've read, the doctors I've talked to over the years, as well as my own experience with cancer and a hysterectomy (June) - that if cancer is suspected to enough degree to warrant surgery to confirm or rule out, then seeking AT LEAST a consultation with a gyne-oncologist would be wise - and I believe that this is the specialist who would, IN MOST CASES, be the most logical choice for the surgery. They spend their days immersed in cancer: research, surgery, treatment, looking at both healthy and unhealthy tissue - getting a good "eye" - and they typically have good working relationships with pathologists they work with who spend a great deal of their time looking at suspicious biopsies and determining if cancer is present. They also tend to have very supportive nurses who can be invaluable in your after-care - whether or not you have cancer.

I'm not clear which type of practice your gyn has: ob/gyn, reproductive endocrinology (they don't do the ob part, but they specialize in menopause, pre-menopause, hormone imbalances, IVF, etc - and do lots of hysterectomies), or is he a gyn-oncologist. The doctor who would TYPICALLY have the LEAST amount of experience, surgically speaking, would be an ob/gyn - they spend a lot of their time, maybe even the vast majority of it, providing pre-natal care and delivering babies. They may do quite a few caesereans, but that's no where near as complex as a hysterectomy. The reproductive endocrinologists don't deliver babies - they see lots of problems like yours, help women with hormonal issues like perimenopause and menopause, infertility and typically do lots of hysterectomies. Sometimes they do their own cancer surgeries - mine, for instance (my former gyn) referred his patients to a gyne-oncologist. (Even though I was told that there was a small chance of finding cancer, I knew that I would want an oncologist to do the surgery - and it turned out that I did have cancer). The gyn-oncologists would TYPICALLY be the MOST experienced in hysterectomies for cancer, and they do a lot of rule-outs - and would have the "eye" to know just where to look for the funny cells, the suspicious tissue, where to take the biopsy samples from, whether or not to do a lymph node biopsy while they're in there, etc.

I know you don't feel you're "there" yet - that ordering booklets about ovarian cancer or reading info on medical web sites like the National Cancer Institute is maybe "overkill" - but since the possibility exists, the information can't hurt you and it might ease your mind. It would possibly give you more insight into what questions you might want to ask. You can also do a Google search for ovarian cancer and you'll probably bring up "first-person" stories from survivors - that might be helpful, too. It might help you avoid the "coulda-shoulda-woulda" situation - wishing you had known more ahead of time. If you're cancer-free - and I pray you are! - then it's no harm, no foul. If, may God forbid, you do have cancer, you might be better prepared.

You might want to consider asking your doctor if you have another week or two to get another opinion - and if he says you don't, that time is of the essence, ask him to tell you why. Also, if he says you don't need a second opinion, you might want to ask why. Actually, it's been my experience that good doctors have no problem with their patients seeking second opinions to confirm their own advice - and, in fact, they should be able to direct their patients to one or two other doctors NOT affiliated with their own practice - and they should be able to direct their patients to specialists like gyne-oncologists. (Do you live near a medical college or is there an NCI-recognized cancer center nearby? The NCI at 1-800-4CANCER could tell you, I believe). Some people have a hard time telling their doctors they want to pursue a second opinion - for peace of mind if nothing else - especially if their doctor is compassionate and they have a long-standing relationship with them. But I can almost guarantee you that most doctors, if the patient were their family member, would cross all the t's and dot all the i's in a situation like yours. They have the advantage that they already have a network, they read the journals, they know the inside scoop on who's the best (and who's not!).

I try as hard as I can to be gentle when I give someone information, but I'm an advocate - besides finding the best doctors (according to peer review), I help coach people before their doctors appointments, talk to their doctors for them or go to the appointments with them or their families and help them decipher the info the doc is giving them - so I'm just accustomed to taking a very pragmatic, assertive approach. ( I started doing this, as a purely altruistic endeavor, about 20 years ago when a family member had a catastrophic event and needed very specialized care. My love motivated me - she had no one to speak up for her and she couldn't communicate herself).

I hope you can just imagine that this message is wrapped up in Christian love and concern - maybe it would soften it a bit! Doing this via distance, online, makes it a wee bit difficult to know just how distressed you are, how much information you want. Please know that above all, I'll be praying for you.

Blessings,
Kaybee C
PS: Please feel free to toss this into the "round file"! After all, I'm not a medical professional, just a layperson with a little experience. And if I've added to your burden at all, please forgive me.

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