Hope to be a survivor soon

Armywife

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.

Zsa Zsa

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

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?

NoTimeForCancer

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

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 

TeddyandBears_Mom

Welcome Anne-Marie,

Welcome Anne-Marie,

So sorry you had to find us but very glad you did.  I agree with everything NoTime said. I want to second her advice on getting something to help with the anxiety. I am not one to take pills of any kind. But, my sister talked me into getting Lorazepam and I am so glad I did! It just helps to get through the hard parts. When you first hear the C word, there is an immediate fear of a death sentence. Especially when we get the aggessive kinds. Please know, there are many of us walking around, living a normal life years after surgery, chemo and radiation. They have made lots of progress in our care.

Please feel free to ask us anything. Someone will come along with answers and support.

Love and Hugs,

Cindi

Forherself

WE are here for you Anne Marie

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.  

BluebirdOne

Ann Marie

It is normal to feel terrified, alone and unable to cope. I was an emotional mess after dx, the fear of the unknown was terrible. I was too emotionally fragile to tell people other than my immediate family and two friends. As I went through treatment and learned everything I could I was coping better. Two years ago, I was having surgery, and I marvel at my progress. Ask for all the help you feel you need whether it be medication, therapy, or just a sympathetic shoulder to cry on. We have all been there. Good luck to you. 

Denise

Maxster

Anne-Marie You are not alone

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

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.  

Forherself

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.  

Hello Anne-Marie

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.  

Harmanygroves

What happened to CJM1948?

(and hi to Anne Marie, of course, but what about the OP?)