Endometrial cancer diagnosis

strawberrygal said:

da Vinci Hysterectomy
Hi Sharon,


I am scheduled to have a robotic hysterectomy next week on June 24, 2009. I ama little scared, but I think I have a good surgeon. I was happy to hear that your surgery went well. Wish me luck!


Love Pat

Pat good luck with your Robotic Hysterectomy surgery
I hope you read the posts below from Teresa and Me about our surgeries. I think you will be surprised with the litte pain and the quick recovery. I did not even get my pain pill presciption filled. I think I took a couple of tyelonal. I did have gas pains though and bloating which lasted longer than I thought it would. My surgery was 6 hours also for them to do the lymph node removal and other biopsies. I too went home the next day. I was glad that I opted for the robotic surgery instead of the open hysterectomy. I have 5 small incisions instead of the large incision others talk about. I hope all goes well with your surgery, and you get good news with your results.

nikkster said:

Surgery
I guess no one really prepares you for the Big C diagnosis.
I was a patient at a clinic for another problem when the doctors discovered the tumor.
At the time, I was seven hours away from home and decided that the best course of action would be to return to my home town and receive the surgery. Then,upon returning home, I waited two weeks for an appointment. A biopsy was performed during that subsequent office visit {with out any preparation} Then I waited for a week for the uterine cancer diagnosis.The ob gyn told it was grade 2 endometrium cancer and surgery was scheduled. I received several calls from the doctor explaining the need for two surgeons. Due to vacations,my surgery would be postponed for about a month.
In panic mode, I reached out to my circle of friends and contacted other doctors and facilities. One friend suggested that I return to the Cleveland Clinic since I was a patient there already. I called closer hospitals, but I would still have the wait.
I did go to Cleveland and had robotic surgery, I was in the hospital a day and a half due to anesthesia concerns. The doctor saw me on A Friday, and I had my surgery on Monday.
My family and I stayed in a hotel until I could travel the seven hours.
The surgeon did not remove the lymph nodes because the nodes looked fine during a previous Ct scan and by examination during surgery.
However, after the pathology report came back, There was Lymphovascular invasion.
I was absolutely crushed.
From what I read, my risk factors are age at 63, LVI, grade 2 tumor and stage was !B.
Cleveland recommended the most aggressive treatment based on a study. Full pelvic, chemo, and possibly hormonal.
The University of Penn recommended braci and chemo.
My local doctor pelvic and braci radiation. No chemo
I did due diligence as far as a layman can.

I decided to go with Penn, but I am going to use the more aggressive treatment of Cleveland.
I have been so sick and in pain. Meds do help.
I had my first chemo treatment- wow you gals are my heroines!
I chose Penn because it is a cancer center, and it is two hours away.
I stay with my son outside of Philadelphia and will come home between treatments if I feel well. My family has just seemed to place their lives on hold. I feel anxious and guilty.

I am extremely frightened and just hope that I am making the right choice.
My family is wonderful, but I feel that I have left them in a sense.

Thank you for your kindness.

Nikkster
You are new and there is so much to learn!! I've been "in the club" for over 2 years and I've learned alot.

First of all, welcome. You will find lots of support and info here. This site can be somewhat hard to manuever at first. You posted in the middle of an old thread and I'm answering your post- I hope this discussion doesn't get "lost" here. If no other responses, YOu can always copy and repost as new topic.

Back to you. It is VERY confusing and scary getting the C word!! I remember my initiation. I agree that you did the best you could with the advice given. That's one problem with laproscopic and robotic surgery - they don't get the best view and maybe it's hard to take all those nodes out. I had the old fashion slice and dice variety.

Here's my 2 cents. I think CA treatment is a crap shoot.
1) Check out NCCN.com and use this info as your guide for standard protocols
2) I think docs like to give us minimal info so we don't get scared. Ask questions, get copies of your records, and be proactive. YOU are the one that will be making the decisions and you need the best information for this. As you've experienced there are many opinions on recommended treatment.
3) Get another opinion if you want. Most insurances will pay for at least one.
4) if you don't already, get a gynecologic-oncologist - they are the EXPERTS we need.
5) ask for an assay/functional profile from your surgery - hopefully they did this. This will tell them the best chemo to give you. This is important!!
6) I have a port - love it!
7) Check out alternative treatments too - diet, meditation, yoga, healing touch, accupuncture, exercise. These have helped me alot.
8) Lower your stress level. I worked almost FT until recently. I'm taking medical leave now and realize I should have done this long ago. Stress lowers immune system and will not help anything!!!
9) use this board but my docs always frown on it saying info is "unfiltered" which is true. So you will get all kinds of feedback. I think most of it is good.
10) stay as positive as you can. Ask for help. Sounds like you have great family support which is wonderful.

My saga - I'll be brief - I have grade 3 papillary serous endometrial cancer initially given stage 3a. Initial tx: 6 rounds of carboplatin and taxol. No radiation. I had over a year treatment free until recurrence in May 2010. My CT/PET scans all showed activity in lymph system - however, interestingly, my nodes from surgery were all negative (so much for that "peace of mind"). Docs thought it was false positive but 2 years later it probably was stage 4 from beginning. Grim thought. Anyway, I have recurrence in supraclavicular lymph nodes (collarbone area) and I'm getting chemo (carboplatin) and radiation and docs think I have good chance of another remission period. Papillary serous, UPSC for short, is notorious for being chronic or incurable whichever word you like to hear - neither, I'm sure. If you have this (it's considered grade 3 and you probably don't), stay vigilant!!

So, don't give up. It is so overwhelming at first. Docs have lots of tools at their disposal. If you need to vent 1-1 my email is daisyelder@comcast.net.

Best wishes and many blessings to you. Mary Ann