Having endometrial cancer - coping with daily radiotherapy

Hi everyone,

I was diagnosed on 4th dec 2019, a day in my life I will never forget.  I underwent biopsies on 22nd november after having numourous scans and being told that the lining of my womb was 19mm. The biopsies revealed endometrial cancer in the early stage.  I was given the option to have a full hysterectomy within 2 weeks. This took place on 17th dec and I had keyhole surgery.  2 weeks later I was called back to the hospital to be told that biopsies from the operation showed that it was further progressed than first thought and was now graded at stage 3a. This was another massive shock that it was suspected that it was in my pelvis. I was being referred to the oncology team at a hospital in newcastle.  It was felt that a course of radiotherapy would be beneficial. I was sent for a CET scan and a PET scan which revealed that j was clear.  I began my radiotherapy on 5th march 2020 nothing prepared you mentally for any treatment, but this is where I am on my journey right now week 1of 6 with daily visits. My family are very positive and supportive but alot of the appointments I have to do myself.  It is very tiring and my anxiety makes me feel sick. I have developed a heightened sense of smell, and I smell this smell whenever I enter the hospital, I know its psychological, but at the moment it's not a good experience hopefully it will get better as I go along.  If anyone else has a similar experience and how they have overcome this please let me know. Many thanks Tracy

  • Hello Tracy53 and welcome to the forum. 

    I'm sorry that you find yourself here. Lots of our members fondly refer to it as the club that no one wants to join but I'm glad you 've found us. I know that we have lots of members here who have been through daily radiotherapy for 6 weeks and I hope that some of them will post to say Hello! and share their experiences. For this reason I've slightly edited the title of your post to help you connect with others. 

    Radiotherapy can be incredibly tiring so I'm glad to hear that you've got positive and supportive family around you. Don't be afraid to ask for help or support from them over the coming weeks. You mention that you are going to some of your appointments alone. I'm not sure if you have transport arranged or if you're making your own way to the hospital but as the weeks go on if you're struggling then speak to the hospital who will be able to help organise transport. Most units access to a volunteer car service. 

    I hope that things go smoothly over the coming weeks. Keep in touch when you feel able to and let us know how you're getting on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator

  • Hiya I was diagnosed with endometrial cancer in February I was told mine was a grade 3 mixed cell aggressive basically it can come back quicker than grade 1 or 2 I had total hysterectomy onn19th of February I went back to clinic on Friday 13,th yes what a day to go the consultant came to see me when I was discharged and said when he operated he found something not nice on my overies he suspected was cancer but when I went back I was shocked as I am only stage 1 all contained in my womb the thing on overies was checked and not cancer my dilemma now is I can have more surgery to remove lymph nodes but if they remove I could get lymphoedema and fluid build up in tummy either way I still have to have chemotherapy and radiotherapy I go to chat with oncologist in 12 days as they see this all the time I hope we can stay friends and compare notes my name is Jill all the best I'm sure they will get rid of it for you xxx

  • Hi Jill, 

    Nice to hear from you.  I was given 3 choices of treatment in the beginning. My first and only choice was to get rid of it, why would you want something like that in your body?  My number 1 question to my consultant was 'are my lymhnodes affected' at that time he couldn't answer the question but did say that it would involve extra surgery if they were affected and a PET scan would give this information. My decision still stands, I want to see my grandchildren grow up so I was willing to undergo the extra surgery for the sake of my family. Fortunately my scans showed that my lymph nodes were not affected and that the radiotherapy would cover the areas were the lymph nodes are present.  I was told that one of the side effects of radiotherapy was lymphedema and I think that if we can come this far and go through what we have been through so far then it is the least of our problems we are alive.  The radiotherapy team have been brilliant, I am currently just about to start my 2nd week and I am feeling the side effects.  I am really tired and need to sleep when I get home I have been suffering from nausea and have picked up a cough and a cold because your immune system takes a battering.  I have developed a heightened sense of smell and the hospital smell makes me feel sick as well as all the travelling  but it's something I have to do.  Keep you chin up and keep strong together we will get through this.

  • Hi

    so sorry you are having such a tough time. Have you tried any essential oils you out in a tissue to help get rid of the smell- at least for a while.

    I have just started my journey waiting to hear when I go into hospital for a biopsy for thickened womb wall. Just want to know now really.

     

    sending hugs

  • Thankyou, I'll look into that.  I took my grandson with me yesterday and asked him if he could smell anything, which he couldn't.  So I know it's in my head but it's really not nice. The consultant has offered me something to calm my anxiety but I have initially refused aas I dont want anything that makes me more tired than I already am as most days I have to get myself to the radiotherapy appts.  Thankyou for your help 

    Take care x

  • I was told removal of lymph nodes can cause lymphoedema that why I don't think I will go with extra surgery as I will still need chemo and radiotherapy after as well as if I don't have them removed still chemo and radiotherapy to get rid of any escaped cells so dilemma dilemma I wish you lots of luck what was your stage and grade mine was grade 3 mixed cell aggressive and he thought I be stage 3 but was stage 1 all contained in womb that why I'm thinking may not have spread cause all other biopsies clear xx

  • The consultant always said that my cancer was curative and in the early stage which he said was 1-2.   However, after my operation biopsies showed that it was at level 3a and had progressed onto my cervix which was why they decided to refer me to the oncology service for radiotherapy.   They also discovered a polip on my ovary so it was good that they removed everything.  At my initial oncology appointment they had already cross-referenced my CET scan with my PET scan and found that my lymph nodes were not affected.  However, I do know that they have already targeted my lymph nodes during my radiotherapy.  I also have a morbid interest in how things work, so if you have any questions about what is happening to you at any given time when you are in the rooms  the radiologists will give you an explanation, which I found very  helpful.

    Be brave 

    Tracy

  • Bless you my consultant told me mine stage was probably going to be 3 then I was pleasantly surprised only 1 it's just the grade 3 that I can't get out of my head can come back quicker if it's any consolation to you I had to go three times have my blood pressure checked and the nurse who did it was 10 years free and hers was aggressive and had spread so I suppose I'm lucky mine is all in the womb and now been removed this is so hard tho to get your head round and everyone is so different xx

  • Absolutely I dont think anyone can walk away from this without it having affected your mental health.  So much to think of and decisions to make, it's all consuming  It's like it's happening to someone else.  

  • It certainly is and never out your mind every twinge or pain you straight away think of that if your on Facebook me easy to chat I got couple friends met on here I chat on Facebook nice to compare notes my profile similar to one on here xxx