Endometrial Cancer

Hi Trish, welcome to the group and to this emotional roller coaster ride so familiar to all of us here! First of all I do feel for you re the shock, the anxiety and the stress over all the waiting for results, dates etc. Secondly I’d encourage you to try and not run ahead wirh all of this and certainly not to Google!  Click on my name if you’d like to read my story, but I can assure you that my radio wasn’t “horrendous” at all. Side effects can vary from person to person, but for me I had no side effects whatsoever till half way through my 4th week and even then they were mild and easily manageable. The daily travelling was annoying but I drove myself to and from every treatment (an hour each way) and after the first week just adapted to my new routine, We can’t advise on what treatment is “routine” and what is not as treatment plans are very individual, tailored to the person concerned. There’s also a pinned dedicated radio and brachy support thread - I’ll post a link in a separate post. Please feel free to ask any questions you’d like and I’ll answer honestly from my own experience. But nothing is definite till it’s known so I’d encourage you to try and focus on the what is rather than the what if. I had my hysterectomy in Jan 22 and my radio and brachy Apr-May 22. And I’m extremely glad I did and don’t regret it at all. 

Thank you so much for your reply. Tbh I'm scared stiff of it all x Google is not good !!!

Trish, Dr Google should be struck off! He/she is prone to giving outdated/inappropriate/irrelevant/inapplicable or just plain false info that is likely to scare people to death totally unnecessarily! You’re better off using this forum for info and the Macmillan site in general! 

Here’s a link to the pinned radiotherapy/brachytherapy support thread which should hopefully demystify it and also offer you some reassurance! 
community.macmillan.org.uk/.../radiotherapy-support-thread-inc-brachytherapy

Thank you. I've just read your blog and it sounds almost identical to my journey!  My bleeding since September has been on and off between horrendous and spotting every day.   Then I had the mass removed and bledd then ok. Then my partner and I decided to try a bit of jiggery poker and I bled again !  I'm concerned that it is also in my cervix and as you say there were some cells there  . My team have said the local hospital and the cancer centre had a difference of opinion abiut that and I won't find out until its all out and sent off for analysis :( 

It’s natural that we’d want to know the stage, but I’m unconvinced that getting a predicted stage pre op is of much use in real terms as the true picture is only really known post op. I had tried to prepare myself for the possibility of things being different from predicted, but my consultant said he was 90% sure it would stay grade 1 stage 1A. I rather wish he hadn’t as it affected my ability to keep an open mind and increased my disappointment at the time. I know it’s hard but try and focus on what’s known today. Have they given you any idea as to when your op may be? I threw myself into planning and equipping myself for the op - that’s how I coped with the in-between time. Booking a taxi, buying a new dressing gown and slippers, long iPad/iPhone lead, snacks etc. Your next appointment I’m likely to be your pre-op assessment which is general stuff and hopefully you will receive that appointment soon. 

thank you. having a bad "c" day today - just feeling really down about it all

partner is going away for a few days and I'm left here - his life continues - mine is on hold - is that bad of me to hate that !

I wouldnt mind usually - but on this occasion Im really fed up about it  - just feel really tearful all the time at the moment and this isnt my usual personality.

Feeling sh88t! :(

Hi Trish

I am sorry to hear of your diagnosis of endometrial cancer. There are a lot of lovely ladies on here who will want to offer support. If there is anything you want to ask, then please do so.

I will pop a link here for you with some information that you might find helpful. It gives some information that I found helpful when I had my diagnosis in 2022.

Womb cancer booklet | Macmillan Cancer Support

Feeling overwhelmed is very normal and in fact I found my emotions were all over the place. Reaching out for support from friends, family and on here, helped me and I just tried to go with the flow a bit and accept that what I was feeling was very normal.

Normally before the hysterectomy they can give you a provisional stage and grade and then after the surgery the post op pathology will give them more detail. This detail will help them look at whether or not you need any further treatment after the op. 

Sometimes it can be hard for them to see from scans, whether any cells have gone into the cervix and they can only confirm once they do the surgery and the pathology. If cells are not found in the cervix- then that would likely indicate a stage 1, if any cells are found in the cervix it would indicate a stage 2. It sounds as if they are being cautious in not saying which yet. However whether it is stage 1 or stage 2, then that would indicate early stage cancer. 

I can understand your worries about radiotherapy but would urge you to not try to think to far ahead yet. Focus on one step at a time- at the moment the hysterectomy - otherwise you can quickly become overwhelmed with it all. At the moment you do not know if you will need any further treatment at all and if you do, then be aware that many people do have further treatment and can tolerate it well. 

Any further treatment would be discussed with you and your views are taken into account. They would discuss the risks and benefits and then the final decision is yours. 

Try not to use Google if you can avoid it- it's not accurate and it's not up to date. It can be plain scary. 

Instead, ask on here as we have been there and will give you support. There is also the Support Line which can be great if you just want to talk things through. You can also speak to one of the nurses to ask any medical questions. 

I hope this helps a bit. I had surgery, radiotherapy and chemo and although it is not something any of us would chose, it is doable.

Jane

Hi Jane

Thank you so much for your kind words. I read them mid melt down and through tears! 

I think you are right about Google..I've stopped researching and have just decided to take one day at a time atm.

Even though it seems like early cancer .. I'm still processing and I have it  and even though I don't want any more children and nor do I need my uterus ... I still don't want to go through all of this.

I've had surgery before (gall bladder removal) so I don't understand why my emotions are all over the place.  

This is the second time I've cried uncontrollably this week!

Maybe it's because I'm in a fairly new relationship (2 1/2) years and I still want that lovely phase to continue .. I mean he's sat in with the gynae consultant talking about my bits and bowel movements ! (Trying to see a lighter side).

Its just crud and I don't want it but I know I have no choice.

But thank you for all your kind words. Needing some support right now  xxx

Tears can be good sometimes and it helps to let those feelings out. Your emotions are naturally all over the place, even if you didn't want any more children and even if you have had previous surgery- this is all new, it's scary. The mere word cancer is scary.

Cancer can put a strain on relationships but they can also strengthen them and going through something like this can bring people together. Keep talking to each other.

At the moment things feel out of control and you don't yet know what exactly is going to happen. Focus on the op and getting prepared for that- the practical bits and bobs first. Do things one step at a time. Normally I always try and see the bigger picture but during my cancer journey it helped to break things down into smaller, more manageable steps. It feels overwhelming at the moment but that will hopefully pass as you get a plan about what happens next. Once you have a date for the op then you can start preparing for it. 

We are here to support.

Jane