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Hello Susan,

I had surgery on Nov. 15th and it was discovered after the surgery - that I had endometrial adenocarcinoma - Stage 1. My gynecologist stated that no additional treatment was necessary. Well, I too have done some research and it appears that with my type of cancer many women have 5 radiation treatments also to prevent micro cells/mets.

I decided not to readdress this with my Gynecologist as I was concerned that since he was of the opinion that no further follow-up was necessary that this would compromise my post-op care.

The next step I took was I contacted the Medical Record Dept at the hospital and got copies of my medical records and also the Pathology/Laboratory department and picked up my slides.

I then proceeded to research and find a reputable
Gynecologist Oncologist and I have an appointment next week. I will take my records/and Path slides with me. I am anxious to hear his recommendations if any.

And as if this was not enough - I made another appointment with my Mom's Hematologist Oncologist (who she has gone to for her breast cancer in the past). Thus, I will be getting 2 additional opinions.

I believe it is very important to see a specialist - Gynecologist Oncologist.

I am getting my 2nd and 3rd opinions for peace of mind.
I deliberated over this for awhile as to what to do - and I finally felt that I would be doing myself a disservice not to get another medical opinion - rather that take the approach of wait and see. I personally have felt that if my cancer would come back or I have mets in a few years - I would be kicking myself for not exploring and getting another opinion.

I realize that our cancers are different, but if you would like to continue communicating I would really enjoy having someone else to talk to. Also I have used the
American Cancer Society web site. (www. cancer. org) to get specific information which I have found helpful regarding my cancer.

Susan, I will be thinking of you and your January 4th appointment. My Gyn Oncology appointment is on January 11th.

Take care,
Nicki

Dear Susan --

I'm glad that you were under the care of Onc/Gyn, although I feel so bad for your insurance situation.

You mentioned that you are applying for Charity Care and I am glad that you have done that. I have worked in hospitals for many years - and perhaps you have already talked to Social Services for this application. There are generally many individuals in the Social Service/Discharge Planning department at each hospital and they have a wealth of knowledge and resources.
They may know which specific physicians and/or hospitals that are more willing to work with non-insurance patients.

Based on what you mentioned, it does appear that your doctor may have rushed you along. If there are any other major Cancer Centers in the area - perhaps they can give you advice of who to go to.

I wish I knew more about your specific type of cancer - but I do think that waiting 1 year for follow-up after such a major surgery is too long. Perhaps with your specific type of Cancer (or non-cancer, as I like to think that we have now!) this is appropriate.

I'm being followed up now every 3 months for the first year (but again I had endometrial ca).

Susan, if you haven't already - do get a copy of your medical records - you don't need the entire chart (this will cost too much as medical record departments charge for the record). Just get what they call "pertinents" - you should get the following:
Discharge Summary
History and Physical
Operative Report
Pathology Report
TNM Staging Form (if available) - not always filed in the medical record or avaiable.

You can just call the Health Information Services/Medical Record Department at your hospital and talk to the "Correspondence Desk". They can fax or mail to you the Authorization to Release Medical Records. Thus you can fill it out and fax/mail it back - then when the records are ready - they may just mail them to you - some hospitals will require you to make a trip to the department and show some kind of I.D. to pick up the records.

There might be a small fee - find out what it is - but occasionally for follow-up care there is no charge - if you find the fees are too expensive - then at least get the Operative & Pathology Report.

Thus you have these and will not be running around when you do get follow-up with another physician. You'll be ready.

In addition, with our histories - a new Oncologist will generally want to take a look at the Pathology Slides. Many Oncologists will take these to their own Pathologists for a second opinion. Generally they are wanting to relook at the "surgical margins" and how clear they are. This helps them with treatment options.

Again, if you don't have these contact the Pathology/Laboratory Department at your hospital via the phone. They will usually pull the slides - then have you make 1 trip to the hospital to sign the release form and you can pick them up with no charge.

Well - I will definitely keep you in my prayers.
Take care,
Nicki

Dear Susan,

I wanted to share something that a friend mine told me today. She works in a Cancer Registry in Arizona.

You and have a similar situation in that our doctors told us we no longer needed treatment for our cancers. I believe from your posts that you are feeling a little apprehensive about this also. My own apprehension though is beginning to lessen a bit now and I think that I have begun to deal with the diagnosis better. It was a shock to me when the doctor came in to my bedside at the hospital and said sometimes we find a few unusual cells in the pathology report, and then I heard the work Cancer. I went in for my hysterectomy for a large fibroid - my paps were clear. It was a blessing that I had the hysterectomy - but in my case it was a real shocker.

Anyway back to what my friend shared with me.
In regards to endometrial cancer Stage I - often 5 radiation treatments are done.
My friend mentioned that its interesting if you look at the statisics they are very similar.

The reoccurance rate for reocurrance with radiation and without radiation for Stage I endometrial cancer is almost the same.

I know I have been looking at the perspective of what further treatment do I need and not wanting or being a bit scared to believe that I might really be cured. My gynecologist says no further treatment necessary. Well see what the onocologist recommends - but I definitely want to hear what kind of statistics he can give me in regards to with or without treatment.

Anyway thinking of you - and I believe you are also the Mary Maid and also really into this cleaning thing. Hey, take it easy and don't let yourself get run down.

Nicki