Recurrence of endometrial cancer

I'm sorry but I don't have any advice but I'm sure someone will be along who can give you advice. Can't they do surgery for the bulky tissue and lymph nodes? Deb

Hi Deb,

Unfortunately operation has been ruled out by the MDT team. I wish they could but due to the position of the tumours and because I'm not a smaller person they think it would probably cause me a lot of pain and suffering. However I'm not giving up fighting even though at some point last week I was considering doing just that. Thank you for your reply though. Jayne.x 

Hi Jayniee67

Sorry to hear you haven’t had better news with regards to the tumours. I had my hysterectomy in early July 2017 but feel blessed that was my only treatment, but it also means that I don’t have the experience of chemotherapy or radiotherapy but I know others have and would be able to share some experiences of the what next is. I think we all worry about recurrence but also hope that treatments stop it in its tracks. I see from your post to Deborino that surgery has been ruled out due-to the locations of the tumours etc. I also believe that they are now going to try direct radiotherapy to the location of the tumours. Have you been given the option or at least have in reserve the option of clinical trials? I know there has been many which have been successful and it’s always good to know this is available, I just wonder if it’s not been mentioned yet whether you can ask for that too. 

Have you got your date for your radiotherapy sessions? I hope they are very successful and definitely if it hasn’t been mentioned it’s worth asking if clinical trails are an option for you. Fingers crossed for you for your next step of treatment, I really wish you can get better news.

Sending you a gentle bear hug  

Hi Gbear.

Nothing has been mentioned about clinical trials but then again I don't have start dates either. My next appointment is not due for 4 weeks as I was having a bleed when I attended the last one and it made it difficult to have an internal examination. Hopefully this won't be happening next time. My oncologist didn't seem too concerned about the bleeding but as I don't have a womb I can only assume it is coming from the tumour at the top of my vagina. I've had a word or two with a specialist counsellor and he's put me back on  the right path to try and deal with the emotional side of things. My partner is trying his very best to be strong for me but I know its probably just as hard for him as it is for me. Next steps as far as treatment is concerned means completing the last cycle of chemotherapy even though it isn't working. I could really do without it because it seems a bit pointless however as the consultant is the expert I am willing to go with whatever he decides. After all he has the medical degree and I don't. 

Sorry if I've gone on too long but I hope maybe things will change in the next month. 

Jayne.x 

Hi Jayniee67. I'm sorry you find yourself back here. We all hope and pray that we have our treatments and never come back but when we do it's twice as hard. I'm sorry to read the chemo isn't working for you and can understand your misgivings about continuing but as you say the consultant is the expert. I didn't have external radiotherapy so can't advise I'm sorry to say. There's also immunotherapy if surgery has been ruled out.

I'm worried myself about recurrence as 10 months after my op and adjuvant brachytherapy I'm experiencing some unusual symptoms of chest pain and shortness of breath and my GP's referred me for bloods and an ECG. Spoke to my CNS and they're going to get me in asap for a check-up but in the meantime back on the waiting treadmill.

I admit, I'm much more scared this time, last time it was all surreal and even a year later think did I have cancer?

Hopefully things will change in the coming month. We're all here for you, you're not alone in this.

Sending hugs, Barb xx

Thanks Barb. I must admit after my hysterectomy and brachytherapy I wasn't expecting a recurrence at all... I thought that would be it and back to my normal routine. However here it is for the second time and this time there's not much they can do except give me treatment that may or may not prolong my life. This is the hardest part.. Hearing my consultant say that the cancer is incurable. That one word the other day felt like a death sentence... I don't know how long I've got but for now I'm going to keep trying whatever I can to survive. I'm a bit scared to say the least of having radiotherapy I know the consultant said the side effects would likely be a lot worse and I don't want to be a burden on my amazing partner he's trying to hold down a full time job and look after me at the same time. I don't know how much longer he will be able to cope with it all. I suppose his military training will have given him some mental strength but at some point he will not be able to cope with it all. 

Kind regards 

Jayne 

Hi Jayne, I am so sorry to hear of your recurrence and wish you all the very best in your future treatment.  If it is not too personal may I ask what grade, stage you were and the symptoms of recurrence?  Like Barb I am having some issues 15 months after my op and am petrified.  Gina

Hello Georgie.

I would guess at this stage I am likely to be stage 4.. However I must say that I don't know for sure about that as my gynae consultant at the time was unable to get a tissue sample to be able to do it accurately. As for my symptoms well it all started with a bleed. I'd had my hysterectomy done and I was quite panicked when I started bleeding. I couldn't make an appointment with the GP as it started late on a Friday night when I was home alone with 3 under sevens babysitting. It wasn't a really heavy bleed however first thing Monday morning I rang to get an emergency appointment with my doctor. She said she would have to make an appointment with my gynae consultant. I was seen within a couple of weeks. I had a really painful experience with the internal examination and despite the hour I spent on the table it was very difficult. I was booked in for an examination under anaesthetic which again was difficult for my consultant due to a deep vault and scar tissue. I was then referred to a very nice place in Cheltenham just before Christmas for a PET scan. This is a more detailed sort of MRI. On the 4th of January 2020 it was confirmed that I had 4 tumours the largest of which was 2.5cm long. So off I went to oncology.... And then the first of my chemotherapy treatments. I had 6 cycles of Paclitaxel and Carboplatin. Worked quite well. 2 tumours disappeared completely the others are still there and growing. Hence where I am today. That's the detailed story of my cancer journey for now. If I can help anymore despite my current situation please get in touch again.

Kind regards

Jayne. x

 Jayniee67

Hi Jayne. It must be truly awful to hear your consultant say it's incurable but due to continuing breakthroughs in medical science nowadays it's not necessarily a death sentence. I think cancer is now classed as a treatable disease. I think one of our current Champs was told he was incurable something like 17 years ago.

I noticed you haven't updated your profile. It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep repeating yourself. You can amend or update it at any time. If you’re not sure what to write, just click on my username or just copy and paste your posts from here.

There are other support groups on the Online Community which you might like to join to gain support and advice at this time. Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear. It's free to call on 0808 808 00 00  8am to 8pm, 7 days a week. Have a look to see what is available by Clicking here

Sending hugs, Barb xx.

Thank you for responding Jayne at this very difficult time.  As Barb says they are making medical inroads all the time so hopefully your next treatment will work better for you.  You also sound really strong and positive which must surely help you overall.  My very best wishes xx