Diagnosed 3C Endometrial Cancer (Clear cell) last year @ aged36

[Vonchies]

Hi there,

I'm new to this forum. It's been 10 months since I was diagnosed with Stage 3 Endometrial Cancer. It took 6 months to get diagnosed after I found that my menstration cycle was out of whack (symptoms: prolonged periods, discharge, bloating). I knew immediately that something was wrong and contacted my doctor who unfortunately didn't take my symptoms seriously. After back and forth visits, I was put on a waiting list at various hospitals for a D&C. After a 6 month wait results came back with cancer. I had a hysterectomy (no children, did IVF with ny partner), now have menopausal symptoms (not too bad) and am currently undergoing an Immunotherapy trial and I am responding well. My metastic tumors are shrinking and the spotting on my lymph nodes have remained the same size. I still worry about the day I may stop responding the treatment.  My body sometimes feels strange, and  produces weird sensations.I'm very hypersensitive to all body changes which gives me anxiety sometimes. I THINK I'm one of the youngest diagnosed at Royal Womens and Peter Mac but can’t be sure. I have great family and friends  support (some not so great) but it can also be a lonely road. Just seeing if there are people out there of a similar age that can share there story and connect?

[brightlights]

Hi Vonchies

I just wanted to say hello.

I had an endometrial cancer diagnosis three years ago and am now a volunteer on the Cancer Connect program. 

I am somewhat older at 58, but just wanted wave to you.

Anything slightly weird that happens in my body spikes my anxiety. My Mum is currently having chemo for Ovarian cancer and being back in all those places doesn't help much either!

I found myself a psychologist who specialises in people with a cancer history - I saw her again only yesterday. I am amazed at what extra info she has that I haven't heard from anyone else. And it's another place to ask those pesky questions that bother us all. 

As I said I am not sure I can add much .

But I am here if you want to ask me anything - really. 

[Tobi]

Hi

I was diagnosed 6 years ago this week with stage 4, grade 3 endometrial cancer. I had just turned 37. No kids. The gyne I was sent to didn't think it was cancer even though my grandmother had had it. Never asked my symptoms or why I thought it might be (I was fit, thin and young). He was shocked after the D&C. My uterus was 60% cancer. 

I had a radical hysto and omenectomy, chemo and radiation. It came back in 11 months in my liver.  Then had hormones for 7 ish months before it came back in my liver. So chemo again for 6 months. Got another 6 months before it was in my liver again. This time had left lobe removed. 6 months later was back again for tumour removal next to the liver and had intense 3 months of chemo (every Monday). I had my last chemo in December 2017 and am going well. I have checkups every 6 to 8 weeks and scans every 5 to 6 months. I do have lympodema from the surgeries etc and I get very tired. But very lucky to still be here.

Tobi

[Vonchies]

Hi Brightlights,

Thanks for getting in touch and sharing your experience with me. How are you going? (waving back)

Cancer Connect sounds like a great resource. What kind of program is it? I'd love to get involved.

I'm feeling better mentally these days. I have my moments. I've been doing surprisingly well since diagnosis, but had a virus and some aches that makes me freak a little as you would well know.

I'm sorry to hear that your mum is going through cancer at the moment. How is she holding up? and yes reminders of how things were like when you were there does create some PTSD.

I have been seeing the psychologist at Peter Mac and I have been speaking on the phone to my psychologist who I've been seeing for 10 years. It's all been helpful but think it's also us changing our thoughts, and being stronger and more kind to ourselves.

Anyway, I hope youre well, and would love to keep in touch and hear more from you if you have the time of course!

x

[Vonchies]

Hi Tobi

Lovely to e-meet you. Thanks for finding the time to get in touch. I am so sorry to hear what you've been through but by-golly your strength and resilience is impeccable. Congrats on your last chemo!  Must have been a relief but also it's tiring. How are you these days? I'm glad you're with us. Being here today is a blessing. I hope you're living your best life and have really good family and friends around you.

It's so shit that the doctor didn't take you seriously. There really is an issue with some GPs and first instance medical practitioners that need to listen more and to take more interest in our symtoms. I had the same experience, off and on waiting lists. Even with private I still waited two months to see a surgeon and another three weeks to get surgery. I really think that was the time I developed cancer, and they didn't run scans for the 6 months I was waiting to see a specialist. I tell all my lady friends that no matter what you think might be nothing, have it checked out or get multiple opinions.

How are you going physically and mentally? Would like to hear more about how you are and you're experiences if you're keen to keep in touch. I find it hard to meet people in a similar endomentrial boat, which I guess is a good thing. I'm here for support if you need. x

[Tobi]

Hello!

I was lucky.  My GP knew it wasn't good when I saw her and sent me for an ultra sound immediately. From there I saw the gyno within a day or so (he told us if we wanted kids we should start trying asap...) Then it was 2 weeks for the D&C. Then cancer diagnosis (a horrible experience as he specialises in IVF... so a waiting room FULL of pregnant women). He referred me to a surgeon at Cabrini and from there it was all pretty quick. Diagnosed 24th April and surgery on the 5th May. By that stage the cancer was outside the uterus with a tumor attaching itself to the rectum. I felt like I was going insane for the first 6 weeks. Rapid onset menopause was horrid. My oncologist spoke to my GP and put me on antidepressants and I immediately felt 100% better. The anxiety was horrendous before that. I also saw a counsellor in Geelong. The first one wasn't great but the next one was wonderful. It helped to talk to someone who wasn't family. They had enough to deal with (My dad was diagnosed with prostate cancer 2 weeks before me).  Since then things are up and down. I exercise a fair bit which I think has helped with treatment. All my treatment has been in Geelong thankfully (I lived in East Geelong and now in Ocean Grove). I couldn't imagine travelling to Peter Mac (My surgeon wanted me to go there).  I did an exercise rehab program after I finished my 1st chemo round. All other patients were 55+. I have only met one other person with cancer around my age. And no one with endometrial cancer. And no one in my group has had it recur. It can be a bit lonely! 

Great to hear from you. I hope we can keep chatying 😊

Tobi

[Tobi]

Hello!

I was lucky.  My GP knew it wasn't good when I saw her and sent me for an ultra sound immediately. From there I saw the gyno within a day or so (he told us if we wanted kids we should start trying asap...) Then it was 2 weeks for the D&C. Then cancer diagnosis (a horrible experience as he specialises in IVF... so a waiting room FULL of pregnant women). He referred me to a surgeon at Cabrini and from there it was all pretty quick. Diagnosed 24th April and surgery on the 5th May. By that stage the cancer was outside the uterus with a tumor attaching itself to the rectum. I felt like I was going insane for the first 6 weeks. Rapid onset menopause was horrid. My oncologist spoke to my GP and put me on antidepressants and I immediately felt 100% better. The anxiety was horrendous before that. I also saw a counsellor in Geelong. The first one wasn't great but the next one was wonderful. It helped to talk to someone who wasn't family. They had enough to deal with (My dad was diagnosed with prostate cancer 2 weeks before me).  Since then things are up and down. I exercise a fair bit which I think has helped with treatment. All my treatment has been in Geelong thankfully (I lived in East Geelong and now in Ocean Grove). I couldn't imagine travelling to Peter Mac (My surgeon wanted me to go there).  I did an exercise rehab program after I finished my 1st chemo round. All other patients were 55+. I have only met one other person with cancer around my age. And no one with endometrial cancer. And no one in my group has had it recur. It can be a bit lonely! 

Great to hear from you. I hope we can keep chatying 

Tobi

[brightlights]

Thanks for your reply and your good wishes. 

It sounds like you have brilliant psych support! I’m so glad to hear you are feeling better mentally. 

Have you come across the Sarah Wilson book on anxiety? It’s called “First we make the beast beautiful”. I always find something in that book that connects with me. Beautifully written and well researched. 

Hope you have a good weekend. 

[Vonchies]

You need to get off my page juanpablohernan. Stop advertising and selling to people that obviously are dealing with bigger things, So offensive

[Vonchies]

Just Pm'd you Tobi. xx