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Should I get second opinion? Should I get second opinion?

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Unread 07-05-2003, 09:41 PM
Should I get second opinion?

After an endometrial biopsy 2 wks ago, results: stage 1, well differentiated uterine cancer. My gyn said it was curable with TAH including overies. She said she could schedule for July 15ish so I would have a chance at going on a planned vacation in Sept or possibly wait until after my vacation. I've decide to go ahead with it now, but my question is: Should I get a second opinion? She said she could refer me to a gyn/oncologist if I wanted, but I don't want to. She said she does many TAH's. and I really respect and trust her, but am I being dumb not getting a second opinion?

I am so inspired by everyone on this board. Thank you to all of you. Right now my head is spinning, and I feel so incredibly confused and fragile, but I hope I can be of help to others in time....

Hugs, lorit
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Unread 07-05-2003, 11:18 PM
Get an Onc/Gyn

You and I share the same dx. I had a d and c which showed a stage 1, well diff. uterine/endometrial ca. My gyn immediately referred me to an onc/gyn....she said she could do the surgery since it was a stage 1 but was going on vacation. The onc/gyn sampled lymphnodes in the area to further allow us to rest assured that all was well. I am not sure if a reg. gyn can do that. A gyn from my reg. practice assisted, as would my reg. gyn if she hadn't been on vacation. The surgical path showed a stage 1a, grade 2. The tumor was slightly more agressive than they originally thought, based on the d and c path. I would definetly go with a gyn/onc. I am seeing my reg. gyn for the follow ups. I will be a year post op on July 13th. I was 44 when dx, told I was too young and didn't fit the profile for this type of cancer. If I can answer any ?? please post, pm, or email me. I know this is a very scary time and lots of things are probably running through your mind. Chris
Unread 07-06-2003, 04:38 AM
Should I get second opinion?

Hi Lori,

Sorry to hear about your recent endometrial cancer diagnosis. I would strongly recommend that you see a gyn-onc before undergoing surgery. I was diagnosed four years ago, and saw 2 gyn-oncs beforehand. I saw one my gynecologist recommended, and another at Johns Hopkins. They both pretty much agreed on things, but I decided to go with the one with more than 25 years of surgical experience.

Regular gyns may do a lot of hysterectomies, but they do not receive nearly the same amount of surgical training that gyn-oncs receive. And they also do not see or treat cancers very often. As it turned out, when I was on the operating table, my gyn-onc had to do much more extensive surgery because of the extent of my cancer. I ended up with a radical hysterectomy, BSO (tubes and ovaries), lymphadenectomy (30 nodes), and a section of tissue surrounding lymph nodes removed. He was thoroughly ready for what he found at the time of surgery.

I have had very minimal post-surgical complications--much less than women I know who had their hysterectomies done by gynecologists whose hysterectomies were for fibroids or other menstrual irregularities and not for cancer. I can't say enough about my gyn-onc; I really believe I owe my life and excellent health to him.

A cancer diagnosis is not something to take lightly. I would recommend that you do everything possible to ensure your full recovery at this juncture. While endometrial cancer still has a high cure rate, the number of deaths have been rising dramatically in recent years. Also, recurrent endometrial cancer is much more difficult, if not impossible, to cure. You want to give it your best shot the first time around. I believe your best opportunity to maximize your chances of a complete recovery and an excellent outcome are with a gynecologic oncologist.

Good luck with your upcoming surgery. If you have any questions, I too would be happy to try and answer them for you.

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Unread 07-06-2003, 09:41 AM
I have a question for Moekay


How does endometrial cancer recur if you have had everything out? I also wonder why some 'princesses' still have smear tests after their operations? I have had everything out including cervix and something called ommentum??

Lorit i wish you well with your operation. We have the same dx and i presume you will be having the same operation as i did. I used my regular gyne who made the original diagnosis because i trusted and respected her BUT 5 months post op i think i would have been better under a gyne/onc because they are the cancer specialists and i would have been better informed about things.
Let us know how you get on.
Unread 07-06-2003, 10:50 AM
For Sheila

Hi Shiela,

Recurrences can occur even though a surgeon believes he/she removed all of the tumor but some tumor cells previously escaped the uterus or do so at the time of surgery. These cells would not be visible to the naked eye.

Because a common site of recurrence in endometrial cancer is the vagina, my gyn-onc performs a vaginal vault smear (a pap smear of the vagina) at every appointment. I saw my gyn-onc every 3 months for the first year, every 4 months for the second and third years, and now see him every 6 months. I was at an elevated risk for recurrence due to several risk factors found at the time of my surgery, so my gyn-onc also ordered CT scans of the chest, abdomen and pelvis for the first 2 years, and a CA-125 blood test for two years after treatment. This is all in addition, of course, to a thorough pelvic-rectal exam at each appointment to check for recurrences. The need for the additional tests would be determined by a gyn-onc based on the particular facts of a woman's case.

Endometrial cancer can also spread through the blood and lymphatic systems to distant sites in the body--referred to as metastatic endometrial cancer. One frequent site for endometrial cancer to metastisize or spread is the lungs.

If a recurrence occurs in the vagina and the woman has not previously had radiation, those recurrences can often be cured with radiation if caught promptly. That is why it is important to have close follow up after initial treatment. With endometrial cancer, my gyn-onc told me that 80% of the recurrences occur within the first 3 years after treatment.

Hope this helps--

Unread 07-06-2003, 10:55 AM
Should say 90%

Hi, Sheila--

In my last post, that should read, "my gyn-onc told me that 90% (NOT 80%) of the recurrences for endometrial cancer occur within the first 3 years."

Unread 07-06-2003, 01:06 PM
Should I get second opinion?

oh--im having none of those checks done to me. Can you tell me why you were at high risk? oh god i wish id never asked
Unread 07-06-2003, 01:18 PM
Should I get second opinion?

I'm going to agree with the other ladies on this post. I had a uterine biopsy that came back negative but with "complex hyperplasia". My doctor defined the complex hyperplasia as a pre-cancerous condition. Well, can't tell you how surprised I was to find that, in fact, I did have a cancer in the uterus that spread to the cervix. (Because of all the bleeding when I saw my doctor, she was unable to do a PAP smear although all previous smears came back normal.)

Anyway, she did refer me to a gyn-onc surgeon who performed the surgery. She assisted. Bottom line: Surgeons want to know as much as possible prior to actually performing the surgery, BUT, (and you'll hear this over and over again) you never know what you're going to find until you actually get in there.

Lorit, my very best wishes to you. Keep posting and letting us know how you're doing. God bless.
Unread 07-07-2003, 10:02 AM
Depends on the Doctor & Hospital

My gyn doc (also MA) is also a surgeon. I was operated on at Brigham and Women's where he also teaches and has done more TAH than they can remember at the hospital and they say he has taught just about everyone there (he is in his early 60's).

I asked him if I needed an oncologist and he said if at the time of the operation he felt that one was needed, then he would call one in (remember, this major hospital has a cancer center.. it is a matter of an in- house call to get someone there if things looked more serious than what he expected ) He knew from my D&C & biopsy what was there: Endo cancer, lining was VERY thick and did have cancer cells, Grade 1, very early).

When you are dealing with major hospitals in big cities and more well known doctors, then it is sometimes a little different than with a local hospital. Had I gone to my primary or any other local Dr. here in my city and been told I needed an operation then I would have gone to Boston to look for a second opinion).

RE: reoccurance... I am just super ready for anything, after all most D&C biopsies for my problem are 90% non-cancer and I ended up in the dreaded 10% so I will be always vigilent and will have "vault smears' and any other type of test they will offer me that is not invasive to be sure I am healthy for as long as I can be! My doc said "every year" because of my particular case and my answer was "no, every 6 months" and he agreed (can't do any harm and can only be good to be extra cautious)
Unread 07-07-2003, 10:10 AM

As everyone will tell you, if gynecological cancer is suspected, see a gyn oncologist. I had actually saw two gyn oncologists from two different cities. The second gave me different treatment options for the same diagnosis. I was able to get all the info I could and then make the best decision for me. Good luck with everything.

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