Hope to be a survivor soon

zsazsa1 said:

Tilting the table - Trendelenburg position

I don't know if you've already started the IMRT, but one of the things I wished that I had looked into was having the IMRT done with me in Trendelenburg position (the table tilted a little so that my head was lower than my feet).  The reason for this was that gravity would then help my intestines to fall toward my head, and hopefully mostly out of the field of the radiation.  For pelvic radiation, it's feasible to let gravity pull the intestines out of the field.  Not so much I'd assume for a higher up recurrence, like para-aortic node. 

I have no idea if any center near you is set up to do this.  I would contact UW, if Swedish Hosp says that they cannot.  There were some studies done on this, but I don't remember how well it worked to prevent collateral radiation damage to the intestines and colon.

Another thing to look into is proton beam radiation directed just at the area of recurrence.  This is fairly new, expensive, and REALLY works like a laser-sharp pencil of radiation, directed just at the area you need it.  They have it at UW.  https://www.seattlecca.org/treatments/proton-therapy/proton-therapy-overview

Good luck with the treatments.

Is the proton beam radiation the same thing as the cyber-knife that derMaus used to tell us about?  She got such good results with that!

Anne-Marie117 said:

Newly diagnosed and not handling it well.

I was just diagnosed with mixed clear cell and endometriod type cancer, and I am not handling it well. I've made appointments to see two surgeons next week. The clear cell part is what really concerns me. From what I read, it's "aggressive." I'm terrified. I went to my doctor immediately upon one episode of post-menopausal bleeding -- I literally called her the day it happened and was in her office the next day -- so I am hoping I caught it early. I know I am in for extensive surgery and follow up treatment, and I am very afraid. Any advice on how I can cope?

Anne-Marie, it is completely understandable to feel the way you do.  Shock?  Terrified?  Yep - it makes sense.  My suggestions:

1. Try to take a breath.  

2. Work with a gynecologic oncologist - they specialize it gyn cancers

3. Do not read Dr. Google!  There is old advice and stats out there.  You are a statistic of ONE!

4. The gyn-onc will make a plan and you will work the plan - this is a new journey/process you are about to start.

5. Ask us anything!  The wonderful ladies here will be along to help as well.  Don't be afraid to ask for something to help with the anxiety. 

You are not alone in this process.  Hugs 

I am sorry to hear you are dealing with this.  It IS so hard.  Not knowing is so hard.  Please know how you are feeling is what we all felt.  I found it comforting to talk to women who have had the same experience.  It was hard talking to people during the waiting time.  Questions that I couldn't answer because I didn't know much.  I have a blog if you want to read about my experience.  I had my two year anniversary of NED July 16.  That means no evidence of disease.   Feel free to come and talk about your experience.  This is a great place for great advice and support.  Keep in touch.  Your local American Cancer Society may have resources for you, and don't forget your family doctor.  Their office may have resources and advice for you too.

I had a very easy time with the surgery and recovery.  

Hello Anne Marie, I understand your reaction totally.  I went to the doctor at the first sign of post menopausal bleeding (the next day actually) and was eventually diagnosed with uterine serous cancer which is similarly aggressive as clear cell.  I was shell shocked.  I followed some good advice like NoTimeForCancer shared.  Make sure you find an experienced gyn-onc for the surgery and follow-up.  Make sure you are given the most evidenced based treatment out there.  I really encourage second opinions. If you are near MD Anderson or Memorial Sloan Kettering, go there or a high quality university if possible.  I know it's hard with Covid to travel but do so if possible.  This discussion board is full of knowledgeable and caring people who can help you with any questions.  If you have a support network, make sure to engage them.  It is good to have people who will listen and affirm your feelings.  You may get overwhelmed at times but try to keep on moving forward.  You have friends in this online community to help you.

HappyWarrior said:

Anne-Marie

Haven't been on in a while, so just catching up on these posts now.  Wondering how you're doing and praying for you.  

I'm just reading posts too, and happy to see you return.  I hope you are doing well.  I have passed my 3 year NED.  I am on once yearly checks now.