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hysterical and needing to know how to get 2nd opinion hysterical and needing to know how to get 2nd opinion

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Unread 03-28-2006, 10:53 PM
hysterical and needing to know how to get 2nd opinion

At the start of the month I saw a gyne and immediately it was a matter of what kind of surgery. I had a biopsy which read complex hyperplasia with atypia that day and then doc prescribed progesterone that day. I had taken about ten days worth when I had a D & C which came back endometrium with progesterone effect, negative for atypical hyperplasia and malignancy.
She referred me to a colleague who would schedule surgery to remove everything- uterus, tubes, ovaries, maybe some lympth nodes, etc.
I am entirely freaked out. I need to get a second opinion from someone not already decided to do a rip it all out surgery. I haven't discussed hormone therapy ( I am overweight quite a bit which probably helps cause the hormone imbalance), I haven't been told anything except that I would need a hysterectomy from the beginning and the D & C would determine what kind and how much surgery.
How do I go about getting a second opinion and someone I feel I can discuss this with? I got the doc's name from my interist so don't know if I can ask for another. I AM BESIDE MYSELF. I am taking sedatives to get through the day and night. I am 41 and single. I desperately need to get some other opinions before I resign myself to this devastating surgery. I've got a psychiatrist appointment scheduled ( I am depressed anyway) but desperately need help to find the best way to a locate a good doctor or two for second opinions.
I am north of Chicago.
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Unread 03-29-2006, 12:04 AM
hysterical and needing to know how to get 2nd opinion

I would try to find a GYN-oncologist. If there is any question of malignancy, they are the experts and can help you to make an informed decision for yourself.

You can always ask for a second opinion, especially for such a big decision. There should be no hassles for you with insurance or even your internist; in fact, most insurers require a second opinion prior to any major surgery (I wound up getting three or four before I was done, all paid for with insurance).

It seems to me as though the progesterone is working, and perhaps you've dodged things, at least for now. It still makes sense to find a second opinion, though. I will say that we aren't allowed to make specific recommendations on the boards, publicly, but if someone knows a good recommendation they can PM you with that information. You can also look for the cancer centers in Chicago and find out who does the GYN-oncology there. The good news is that your latest D&C results seem to indicate that you have some time...and perhaps will never need to have a surgery you find so frightening.

Big s to you as you look for answers!

Unread 03-29-2006, 09:19 PM
hysterical and needing to know how to get 2nd opinion

Thank you for your reply- it was helpful and I am calming down a little . All the best to you.
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Unread 03-30-2006, 12:03 AM
hysterical and needing to know how to get 2nd opinion

Another option for finding a second opinion is through your GP.
Unread 03-30-2006, 10:37 PM
hysterical and needing to know how to get 2nd opinion

Hi booksontape,

I'm so sorry you are dealing with all this! I don't think it would be unreasonable at all to ask your internist for another referral. Most doctors completely understand why a patient would want several opinions about something so important. I got two before proceding with my surgery. Your internist can advocate for you...that's what they're there for. Mine has said so many times. Perhaps request an appt as soon as possible to discuss what you've been told, and ask for advice on who he/she'd suggest for another opinion. You don't need to deal with this alone!

Sending you best wishes!

Unread 03-31-2006, 10:57 PM
hysterical and needing to know how to get 2nd opinion

Hi Booksontape - I'm so sorry to hear that you are facing this frightening decision. I can totally relate. Two years ago I was advised by my gyn to have a total hyst for an endometrial biopsy dx of simple hyperplasia w/o atypia. I didn't want it so she did a D&C and treated me with Megace for 7 months. 4 months after going off the Megace another biopsy came back complex hyperplasia w/o atypia. Again I refused a hyst so she referred me to an oncol/gyn. He also advised surgery, but I called my GP and asked for the name of another gyn (it should be from a totally different group practice). He also advised a hyst and had me convinced until he wanted me to see another oncol/gyn (now this was the 4th doctor I was going to for the same thing). Right away he said he didn't think I need a hyst - just another D&C. So I switched to the second gyn and had the second D&C March 05. Since then I have been fine (BTW I'm 57).

I would definitely suggest you consult an oncol/gyn. If there is any chance of malignancy, you really need them to do the surgery - they are the experts. Please try to stay calm and seek another opinion (or more) until you feel comfortable with the decision. My insurance company had no problem covering the costs of second opinions (a gyn and and oncol/gyn are considered two different specialities) although both oncol/gyn were out of network and I had to pay part of it - it was well worth the cost.

Research all of your options. If you have any questions, please feel free to PM me.

Good luck and keep us posted on your progress.

Mary in NY
Unread 04-01-2006, 02:48 AM
hysterical and needing to know how to get 2nd opinion

Hi Booksontape,

First of all, here's a BIG cyber hug for you.

My opinion about getting a second (or third and fourth) opinion is to NOT ask your current doctors for a referral. Here’s why: My personal history with doctors (family, significant others, professional & social) has taught me that they most definitely DO talk to each other and if your internist gives you doctor "A's" number, and then doctor "B's" number, chances are, your internist, doctor "A" and doctor "B" all know each other. Which can present a problem if they have differing opinions about you, because even the best doctors are often reluctant to suggest another treatment or opinion that goes against a colleague’s. Don’t assume your case is private and they are not thinking about what may come up at a future date. (Before anyone writes to me about "patient confidentiality, I'm here to tell you that anyone who thinks medical professionals don't discuss patients or strategies at social functions is living in a fantasy world.) Therefore, I suggest finding another doctor who is not associated with any of your current doctors, either professionally or socially. (This may not happen of course, but you reduce the risk of biased opinions when you get "fresh eyes" from another area.)

What worked best for me was going on the internet and researching the best teaching hospitals within my range of travel and then searching each hospital's staff site. (The hospitals usually post lots of information on their best physicians because they are proud of having them on staff.) From this information, you can do additional research on each doctor and their educational background and professional history.

After selecting the doctors who seem to be the best (and you CAN have the best, don't sell yourself short) you can often e-mail them (also on hospital web-site) or call their office and ask more questions. Remember, you’re allowed to “interview” them to see if you think you might have a fit (your needs/their skills; your personality/their personality) before you make an appointment. This will save everyone time and you money.

Another good source of information are nurses. The trick is not to ask them what they think about "Dr. ___" but, instead, ask them if they had your problem, which doctor would they go see? (Or to whom would they send a beloved family member?) This way you are not asking them to comment or pass judgment on a specific doctor, but you will still get their opinion about who they think is the best.

These are my suggestions. I wish you all the best.

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