Endometrial cancer

[Lehiatus]

I was diagnosed yesterday (preliminary prognosis until staging is confirmed)- with Stage 2 endometrial cancer. I’m 41 and have had a history of ovarian cysts, recently having laproscopy, Lletz, D&C etc which thankfully found a mass. The specialist was baffled because there were no other symptoms. I’m trying to find anyone who has a similar cancer but also just to talk about the wait between prognosis and staging. Obviously it’s terrifying, the not knowing whether it’s spread further than my uterus. I’m scheduled for a radical hysterectomy in 2 weeks, and am awake now at 4 in the morning worrying about work, family, pretty much everything. That and the pain- current and future. I suspect this is the first stage of shock. When I was diagnosed I was laughing, like a maniacal nutter! I’d been fighting my GP for 7 months insisting something was wrong and this was my ‘aha I was right!!’moment, and now... we’ll who wants to be right with something like this? Any strategies for getting anxiety under control would be awesome. Wishing you all well on your journey, xx Claire 

[RJG]

Hi Claire,

Good on you for not taking “no” for an answer. 

I was lucky in that my cancer was considered curable rather than palliative, but what helped me the most was reading and understanding as much as possible about my condition and planned treatment - knowledge is power. The more that I could find out, the more prepared that I could be for what was coming. 

Also so try to find someone who will listen to you without giving advice all the time. You will need to unload, but write down  your questions to pose to the surgeon and/or oncologist rather than putting your faith in people who don’t really know. Keeping a diary could be therapeutic, but also fascinating to look back at once you are better.

But also be prepared to hear the doctors say over and over again “I can’t really answer that for you because everybody is different and responds differently“. That nearly drove me mad. 

Good of luck with your treatment and let us know how it goes. 

Best wishes,

Rick

[sch]

Hi Claire,

I'm sorry to hear about your diagnosis.

While I don't have endometrical cancer and highly unlikely ever to, I am about the same age as you and also had a week or two wait between diagnosis and surgery.

During a colonoscopy they found a tumour in the large bowel that was large enough that they struggled to get a scope past.

At the appointment with a gasto-intestinal surgeon, he laid out a few different options for surgeory and we discussed them. I decided on the spot I was going to have a total colectomy because of my risk profile. The surgeon agreed that this was the best option. The appointment for surgery was booked in for two weeks later!! I just wanted it out and over with.

One thing worth noting was that during that two week waiting period I got quite anxious about whether this was the right decision. I remember being concerned that if I had the colectomy, I might not be able to do my long distance running any more. Obviously I wasn't thinking straight. So you might also experience something along those lines that just isn't logical.

So my advise to you is;

1. Take a friend/partner/family member to see the surgeon with you.

2. Write down any questions you have for your surgeon with you to the appointment. You won't be able to remember them when you're there!

3. Write down on paper the options you discuss with your surgeon.

4. Discuss your concerns with other medical specialists/GP/family/friends, or, hell, even chat with us.

-s

[Lehiatus]

Thanks for getting back to me Rick, really appreciate it.  I love the idea of finding people to just listen and trusting those with knowledge rather than ‘ideas’. Already I’m being bombarded with opinions, ideas, suggestions, well-wishers. I know it’s coming from a good place, but it’s noise, so much noise when I just need time to think. I’m very much a knowledge is power kind of person, it’s been months of researching possible outcomes that helped in pushing to be heard by my GP, so again thank you. 

The diary idea is brilliant too, I write to express my feelings better than I could ever say them in person. I’m going to go buy one tomorrow.

My CT scan is next Tuesday and first surgery on the 6th of August, then I’m hoping i’ll know exactly what I’m dealing with. I’ll keep you posted. 

Cheers,

claire 

[Lehiatus]

Hey sch, 

thanks for writing back, appreciate you taking the time to share your experience with me, it’s an isolating experience being on the younger end of the spectrum.

I feel maybe while we don’t have the same cancers I’m in a similar situation in that my surgeon has outlined the need for me to have a radical hysterectomy. He offered to try and keep my ovaries in case we want more children, but my risk profile is also super high so it just seems like madness to me to take that risk. I’ve also indicated I want everything gone, and have 2 weeks before surgery. 

Ive got a 5 yr old son, so he’s part of the decision really, and I’m hoping that when that anxiety creeps in (because you’re right, it will) I’m hoping I see him and my husband and get a quick snap back to reality!

i have the CT scan next Tuesday- do you know how long it takes for those results to come back on average?

Great idea about writing it down, I woke up at 4am with 5 or 6 ones that I forgot to ask yesterday so I’m gonna do that now.

surgery is on the 6th. I’ll keep you posted, and thanks again. So much. 

[sch]

Hi Claire,

The CT results were analysed and the results sent to my doctor. The doctor sent me an SMS within a day or two of the scan. Although that might change a bit if you're outside of a capital city.

-s

[Lehiatus]

Hey -sch 

thanks yeah I’m in a regional area (my hospital is Ballarat) so who knows. The other thing is that my CT scan is isolated to my pelvis, am I allowed to ask them to scan all of me? In particular my chest- I just think it’s weird if you’re checking to see if it’s spread, to not check everywhere, but then what the hell do I know? I’m like 3 days into a diagnosis! 

Also any ideas about how to manage everyone else’s feelings? I’ve had a literal tsunami of well-wishers which is lovely but also loads of people either crying, wanting to ask me a million questions which I don’t know the answer to, or people who insist on seeing me, even when I’m repeatedly saying I’m just not up to it. Any sage advice? I know it’s all coming from a place of love, and don’t want to appear ungrateful but it’s a lot to deal with, 

cheers, Claire 

[Caz63]

Hi Claire,

I don't have endometrial cancer but I was diagnosed with Breast Cancer on friday so I am still trying to get my head around it as well. I have not got any appointments sorted out to see a surgeon yet but it has given us the weekend to tell our boys the news before they go back to school. I live out in the Western district so go past Ballarat on my way to Melbourne.

I am struggling with the anxiety as well, I think it is just the waiting for a plan of action and staging that is driving me around the bend. I think I might have to use the diary idea as so far I am alternating between crying, feeling nauseous (anxiety related), worrying and sleeping in short bursts.

I have been feeling really alone, so it is nice to know that I am not the only one feeling like this. Athough we haven't told many people yet. This has given me the space to try and wrap my head around it a bit (as much as you can do) without having to deal with other peoples questions. 

Just wanted you to know there is someone else feeling a similar way.

Caroline xx.

[Lehiatus]

Hi Caroline, 

Thanks for reaching out and sharing your news, it’s so much to digest isn’t it? I think your approach  of creating clear space to start to process is a wise one. I’ve stupidly thrown myself straight into the barrage of questions and am only now coming up for air. The anxiety has me sitting up awake at 12-2 in the morning and scrolling through forums and treatment options, stories of hope and others much more brutal in the outcome. It’s probably doing me no good but in the absence of having anyone else to chat to about it, it’ll have to do. Mostly I’m just trying to be kind to myself, I don’t think there any ‘normal’ way to process this, there’s just getting one foot in front of the other. If you do need to chat, just yell out- I’m here. It’s really comforting to know someone else who is facing similar challenges. I’m so appreciative you reached out,

stay in touch okay?

cheers Claire 

[sch]

Hi Claire,

Just bear in mind that I have no medical training. My only experience with cancer is my own (bowel cancer) and other family members (I have HNPCC/lynch syndrome - a genetic predisposition to developing bowel cancer).

A CT scan involves exposure to radiation. So they will try to limit your exposure to a CT scan and only scan what is necessary. If they scanned everywhere, you would might be increasing your exposure to radiation too high for no gain. I'm sure your treatment team will develop a plan based on a number of factors. For example, has the cancer metastasized?, Is there any signs of cancer in any surrounding tissue? Are there signs of cancer in the lymph nodes?

When I had my cancer, they knew from research that bowel cancer, when metastasized, spread to (if I recall correctly) liver and stomach. So they did a CT scan that included these areas. Not everywhere.

Having said that. it can't hurt (only help) to ask these questions of the surgeon/doctors.

-sch