topic Re: Endometrial cancer in I've just been diagnosed

Endometrial cancer

Lehiatus — Wed, 24 Jul 2019 18:44:18 GMT

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

Re: Endometrial cancer

RJG — Thu, 25 Jul 2019 11:33:35 GMT

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

Re: Endometrial cancer

sch — Thu, 25 Jul 2019 12:02:52 GMT

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

Re: Endometrial cancer

Lehiatus — Thu, 25 Jul 2019 12:27:35 GMT

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

Re: Endometrial cancer

Lehiatus — Thu, 25 Jul 2019 12:40:08 GMT

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.

Re: Endometrial cancer

sch — Fri, 26 Jul 2019 07:23:07 GMT

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

Re: Endometrial cancer

Lehiatus — Sat, 27 Jul 2019 12:37:15 GMT

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

Re: Endometrial cancer

Caz63 — Sat, 27 Jul 2019 21:30:05 GMT

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.

Re: Endometrial cancer

Lehiatus — Sat, 27 Jul 2019 22:47:25 GMT

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

Re: Endometrial cancer

sch — Sun, 28 Jul 2019 03:11:14 GMT

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

Re: Endometrial cancer

Lehiatus — Sun, 28 Jul 2019 06:12:03 GMT

Hi Sch,

Really good points, I think because I’m Stage II that the cancer isn’t contained to just my uterus but I’ll check, it’s all a whole new language to me. I see what you mean regarding exposure, I hadn’t even thought if that- so I’ll ask the specialist tomorrow. Because my cancer had no outward physical signs or symptoms and how they found it was fluke, I’m probably being super paranoid or hyper vigilant which is to be expected I suppose. Thanks again for getting back to me so quickly,

cheers

Claire

Re: Endometrial cancer

Caz63 — Sun, 28 Jul 2019 10:05:53 GMT

Hey Claire,

How has today been? I have spent a bit of time talking to friends today which had me feeling almost normal for a few hours but I have come crashing back to reality now. I went to the shops today to get a few things for hospital and I struggled to hold back the tears and raced home to hide again.

The rollercoaster ride sure ain't one I would recommend. I hope your doing ok today.

Caroline.

Re: Endometrial cancer

Lehiatus — Mon, 29 Jul 2019 01:20:04 GMT

Hey Caroline,

how are you feeling today? I’ve been not too bad, I had a dear friend come by on the weekend to help my husband with the veggie garden, while I cooked dinner. It took twice as long to do and I was just unable to function after because of tiredness, so that was a bit of a reality check for me. I’m coping ok, as background my husband is Tibetan -and was a Buddhist monk for 19 years. Together we run a meditation school (www.facebook.com/lojongmeditation) so I feel like the practice is keeping me calm. I’ve woken a few times in the morning in a hysterical mess, but I think that’s ok. It’s all okay to cope how we need to, and be upset or angry, sad, scared. I think the main thing is being able to talk about it, and so I just wanted to say again- thankyou- Im so thankful to you for sharing where you are at, in all it’s rawness, it’s a comfort even though it’s totally crap to be going through. Also, I’m here if you do need to vent, scream, commiserate, laugh at the ridiculousness of it, whatever xxx tomorrow I have ECG, another specialist appointment, then Wednesday it’s CT, Thursday anaesthetics and next Tuesday, surgery. How about you? What’s next? Xxx

Re: Endometrial cancer

Lampwork54 — Mon, 29 Jul 2019 02:27:40 GMT

I'm really sorry about your diagnosis but I also know that we have incredible doctors, surgeons and hospitals in this country who will provide you with the best care amd hopefully you have an amazing outcome. Yes, we do worry about how it's going to affect everyone else in our lives. I was incredibly anxious before every doctor's appointment even if I knew it was just for a script. It came from history as a child that I'd never been able to overcome. With my diagnosis, my anxiety was incredibly high. Someone told me to tell myself - it will be over by lunchtime, or dinner time. Give yourself an end time for the anxiety. I found that helped me greatly. One step at a time.

Re: Endometrial cancer

Lampwork54 — Mon, 29 Jul 2019 02:37:29 GMT

I just told my family and a few close friends. That was hard enough. (I don't have your diagnosis though). There came a point where I couldn't talk about it anymore to anyone, possibly just my husband. I stopped answering my mobile and then my husband would ring people back and tell them that I wasnt up to talking at the moment but would contact them at a later stage. You also have to protct yourself. It's really tough news and it takes ages to sink in fully. I looked for things that gave me hope. Naturopath appointment helped greatly as too what I could do to be as strong and as fit as I could possibly be before surgery. I knew I wouldn't be able to eat normal food, only very soft food aftweards so bought some books - I think one was the Cancer Kitchen and made bone broths, miracle broths and chicken broths. Many of these I've had fpr breakfast, lunch and dinner and will continue to for some months yet. Lots of research and watched everything I could like the film The C Word, Heal and Weed the People. Anything that keeps you positive is important. Find what that is for you. Small projects to complete before surgery, or setting up things for comfort and ease post surgery are also really important. I hope you have a fantastic outcome.

Re: Endometrial cancer

Lampwork54 — Mon, 29 Jul 2019 02:43:26 GMT

Hi Claire,

It's a horrible place to be in right now. The diagnosis is a bit isolating because of the shock. Once you have a plan of action organised, I hope you will feel better about what is ahead of you. I found reading other people's stories helped me greatly leading up to my surgery. Diary can help too. Shoppingfor new pjs helped. Choosing a special perfume also helped. I used one that my mother had loved and asked me to buy some for her when she was in a nursing home. She died last year and I had never worn the perfume since. I bought some and every time I put it on I imagined my mother with me, giving me her strength and courage to get through what was ahead of me. I think these forums are good too because we can talk with others and not feel as if we are burdening partners and children. There are many people on the same journey and hopefully we can share our experiences and knowledge to help each other. Good luck with everything.

Re: Endometrial cancer

Lehiatus — Mon, 29 Jul 2019 05:59:18 GMT

Hey Lampwork,

thankyou for reaching out- I reckon you’re right, knowing what the plan is will definitely help. I’ve been reading the stories on here, and it’s so comforting to know I’m not alone- none of us are. We’re all cancer kin now, a giant army connected by unspoken hope. Next step is surgery, and then recovery. Until then it’s prep and just talking. I so appreciate you taking the time to share your experience, please stay in touch x I’ll keep you posted

cheers, Claire

Re: Endometrial cancer

Lehiatus — Mon, 29 Jul 2019 06:28:41 GMT

Hey Lampwork, I quickly checked out your profile, you’ve been through a hell of a lot- how are you feeling in recovery now? I’ve definitely been focusing on little projects- we have a burgeoning veggie garden that is feeding me great organic food but is also so peaceful to be in. Agree with putting some boundaries in place- for sanity if nothing else. It’s all still sinking in- slowly. Tomorrow comes with more news, my initial come biopsy was sent off for a second opinion, so I expect my diagnosis will be further updated- but I’m not sure. It’s the not knowing that sucks, but that I’ll have to get used to. I hope today is a good one for you xx

cheers

Claire

Re: Endometrial cancer

PhilPepper — Mon, 29 Jul 2019 14:47:12 GMT

Hi Claire,

I was hoping to offer some supportive words, but reading your replies so far, you've already got more than I can offer. In fact, the opposite has happened, I'm drawing the support from you and your responders.

I have recently had bowel surgery. Chemo is just around the corner. My cancer journey has only just began, but since I had surgery, I am supposedly cancer free. However, I realised I will be a cancer patient for the rest of my life, regardless.

Things not being normal seems to be the new normal. In the last few weeks I've been going through so much. Much of the same stuff you and others have been describing. Even writing on this forum at odd hours of the morning.

I guess, if there is something I can add, it is to find a reason to fight. I went through a lot before I discovered what my reason was. It wasn't for myself. It was for the people closest to me. They need me and I am not ready to let them down. I've discovered I have changed considerably. I've grown a lot as a person. It hasn't saved me from the ups and down on the rollercoaster. But it has me focussed on beating cancer.

Stay on the forum. I've drawn a lot of support from it so far. There was a very interesting post I read when I first joined. Someone called out for people who had beaten cancer to post details of their fight. There were so many amazing responses, from people with a wide variety of problems. I found this very reassuring.

All the best with your fight.

Phil

Re: Endometrial cancer

Caz63 — Mon, 29 Jul 2019 18:06:52 GMT

Hey Claire,

I had a better day yesterday but am now awake at ridiculous o'clock because my brain has gone into overdrive. I am still waiting for a call back from the surgeon to get a plan in place. Sounds like you have a good background to draw on to help with the anxiety and all the uncertainty that comes with this diagnosis. It is comforting to have someone else who understands this journey.

Take care,

Caroline xx