Any stage 4 Uterine cancer survivors ?

[Supermary]

Hi I am a STAGE 4 UTerine cancer patient

I never had any of the typical symptoms

Currently completed 5 rounds of chemo and debulking surgery

I am Not BRCCA positive

Anyone have positive stage 4 survivor stories ?

Helpful hints ?

Thanks Margaret

[Nefa-Tari_SHARE Partner]

Hi Mary welcome to our community page! In 2013 I received my first diagnosis of uterine cancer , it was at an early stage and not at a stage 4. I facilitate a few uterine cancer support groups at SHARE and we do have a few members of the group with a stage 4 uterine cancer diagnosis that are super helpful to each other and others who share the same diagnosis.

If you are interested joining a support group here is the SHARE website where you can register to join the uterine cancer support groups:

sharecancersupport.org/uter...

[LivestrongSurvivor Ambassador]

Hi,I am a stage IV survivor diagnosed in 2016, so this spring I will hit my five year mark. I was diagnosed after waking up hemorrhaging and a week long stay in the hospital. I had surgery to remove a prolapsed tumor, then sandwich therapy, which was 3 chemo sessions, 25 external radiations, and 3 more chemos. I then had a laparascopic robotic hysterectomy followed by 3 brachytherapy sessions. I was declared in remission a few months later and have been there ever since. Please feel free to reach out if I can be of any support. This is survivable!

[AmyPhilly in reply to LivestrongSurvivor]

I was diagnosed with Stage 3 uterine cancer in August, quickly followed by a complete hysterectomy and now am in the 4th (of 6) cycle of chemo. I was just referred for a radiation consult "because you are doing so well with chemo". This has me a little freaked out because I don't recall radiation being mentioned before and I was thinking treatment would be done when the chemo was done. Tell me I should just relax!

[LivestrongSurvivor Ambassador in reply to AmyPhilly]

Hi Amy,I’m glad to hear you are doing so well. You’re over the hump with chemo, and that is definitely a win! As for radiation, from what I have seen and experienced, it is a pretty standard treatment for high stage endometrial cancer. So yes, RELAX! I had 25 sessions over a five week period, Monday through Friday, and was usually in and out of the office within about 30 minutes. For the first two weeks I actually was able to ride my bike to and from my treatments. After that it became too uncomfortable to sit on a bike seat. My bleeding stopped around day 10, and the only real side effect was diarrhea, which is expected and treatable. So I wouldn’t worry too much about having radiation. I’m just sorry they didn’t give you a heads up about it. Best of luck and feel free to reach out if you have more questions.

[AmyPhilly in reply to LivestrongSurvivor]

thanks so much for your quick response!

[Speechlessmom in reply to LivestrongSurvivor]

Thank you so much for sharing your story. I'm stage 4 and currently in chemo. I've been in despair for the last 2 days after my doctor told me that the goal is to just extend my life. As a single mom to a 6 year old daughter his words seemed to suck the fight out of me. Emotionally I haven't found a way to come to grips with that. Your story helps.

[LivestrongSurvivor Ambassador in reply to Speechlessmom]

I’m so glad to hear my story gives you hope. Attitude is half of the battle, and it’s so important to focus on positives. I know it’s scary, but treatments work and remission is possible. Please utilize the resources SHARE has to offer. If you’d like to chat call the helpline and I’ll get back to you. ❤️

[Miriamn57 in reply to Speechlessmom]

Hang in there. Get a second opinion, look for trials.

[Supermary in reply to Speechlessmom]

Do not give up On April 2 nd 2020 I was hospitalized with COVID I went home on Easter Sunday

I did not know I had cancer

In June 16,2020 I was diagnosed with StageIV Ovarian cancer( turned out to be endometrial origin)

I had no signs , no bad periods , two successful c sections ( have a now 19 yr old son and 15 yr old daughter )

I was sent for 3 rounds of carboplatin and taxol

All day events and I used ice on hands ice on toes and PAXMAN

I had 8.5hr debulking surgery on Sept 28th resulting in a reversible ilostomy

On Oct 30th I had the ilostomy reversed went on a wound vac for two weeks and finally healed the wound 1/17/21

After iliostomy reversal did 3 more rounds of chemo and declared in remission on 1:6:21

I have no genetic predisposition

I am on week 4 of trial drug SELINEXOR

SO what is my point

My point is it Sucks it really does

Get mad get sad

But don’t ever ever give up

When I want to I think of my kids and I keep going no matter what

I worked through it all

I’m an engineer but a very girly girl

Love clothes and bags and sparkle

Find what can make you smile when you look in the mirror

Maybe a new shirt or lipstick or nail polish

Whatever it takes

If you need someone to talk to you reach out to me or one of the other great ladies and we are here

Don’t ever give up

I’m not super religious but I believe there is a reason greater than us that we were chosen we have a purpose, this pain has a purpose

I don’t know yet what it is but it’s there

Speechless your life will be extended for many many great years to. Come and we shall both see our daughters children one day ❤️

[Kibb Ambassador]

Hi everyone. I don’t know why our teams don’t tell us there was a clinical trial for endometrial cancer which may shed light on many of your treatment protocol questions. The report is called the PORTEC-3. Look for it and its update online, then ask your clinical team questions you may have after you read it and review the graphs and diagrams.And eat well, stay healthy and remain positive.