Radiotherapy Support Thread (inc. Brachytherapy)

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This is a dedicated thread specifically for those who have had, are having, will be having or are considering the option of external radiotherapy or internal radiotherapy (brachytherapy). The idea for the thread has been approved by the Macmillan Community Team and the aim is for it to be a safe space where members can ask questions and share concerns and experiences. 

I would respectfully ask that the chat is kept on topic to things specific to radiotherapy.

My own situation is that, pre-hysterectomy I was a probable grade 1 stage 1a, and was not likely to need adjuvant therapy. But my post op histology disappointingly revealed a few unexpected cells on my cervix, so I was restaged to a 2, meaning I was offered external radiotherapy x 25, and internal radiotherapy (brachytherapy) x 2. I’ve had my planning CT and am due to start radio on 11/4. I wanted to start this thread so that others facing radio can ask questions and seek support more easily than in an ordinary thread. 

So please do feel free to post and tell us about your situation, ask questions, seek support and share tips/advice etc! I will also probably use this thread to post diary updates once my treatment has started. 

  • Hi Izzi, my daughter is called Izzy.  Thankyou for your reply. I should consider myself lucky that my appointment is with my consultant who I've found to be very helpful in the past. I know what you mean about the support not being there. My family and friends keep telling me how well I have coped with everything and that it must be nice to be back to normal. And I just think no I'm not! Normal went out the window when I was told on new years eve that I had cancer. Don't get me wrong they all love me and mean we'll. My daughter Izzy is so supportive I can tell her most of it, but even with her I have to not let know how scared I am.  

    Just out of curiosity how old are you Issi? I have just turned 54 and was told by my GP that she hadn't referred me earlier because she thought I was too young to have cancer of the womb..

  • Hi Babou, well done for finishing your treatment. I remember the feelings of relief after mine that I no longer had to keep worrying if I was properly hydrated, had had a poo, was in the proper position on the table, and also that my weekdays were no longer dominated by the travelling etc. it’s all so intense that it can feel a bit strange when it all stops, and you think is that it then? 

    This was how it was for me: mine was grade 1, stage 2. I finished my radio and brachy on 19/5/22. I had my first check up on 01/07 which included an internal. My next ones were on 30/9/22 and then 30/12/22. At that last one they wanted to move me onto patient-led follow up but I said I’d like to stay with check ups and they were happy to agree. I had one on 24/03/23 and am due another next Friday 23/06/23. After that one I’m going to ask to go to 6 monthly checks. As I understand it, the likelihood of recurrence for our cancer is highest in the first two years, which is why I decided to ask for further check ups rather than going onto patient-led just yet. I remember asking my oncology consultant (she’s lovely and always instils confidence in me) about whether I’d be having a scan - her reply was “no - because there’s nothing to scan!” Our cancer was removed with our uterus, and our radio has zapped any odd stray cells that might have been hanging around in our pelvis. 

    Different hospitals may have different follow up plans. If mine had stayed at the predicted grade 1 stage 1a I’d have had no adjuvant treatment and would have gone onto patient-led follow up right away. Being stage 2 meant not just treatnent but also in person follow up. As yours was 1b, they may suggest you having check ups or they may be confident that patient-led is sufficient - in which case they will explain to you what to look out for. If they do say this but you really want face to face, I’d recommend asking! Some cancer patients can’t wait to skedaddle out of the hospital and are only too glad not to have to go back. Others may want the reassurance of an actual appointment. But unless you make your preference clear, they won’t know and may just assume you’re of the former view. 

    Your CNS team are still there for you post-treatment, so you can always ring them for support or with questions. I’d suggest too asking them if the hospital does a “life after cancer” course (most if not all do) which can really help with the adjustment period post treatment. And of course we are here too! 

  • Thankyou MarmiteFan59 for that reply and the reassurance. I think I will ring on Monday and see if I can be seen face to face. I think I'm just having a bad night thinks always look different in the middle of the night. Thankyou again for taking the time to reply and the reassurance.

  • Hi Izzy well done to you too for finishing your treatment. How are you doing with your recovery from that? Have any side effects settled down now? Are you able to eat whatever you like again now? Mine was stage 2 as well - cells were found on top of my cervix, plus I had an extra thing: precancerous “stics” were found in both my Fallopian tubes, which they said was extremely rare. Being diagnosed with endometrial cancer effectively saved my life, as those “stics” would have spread to my ovaries and caused high grade high stage ovarian cancer which would likely have been too late to treat, so very scary! Are scans routine post treatment where you are or is there a particular reason it’s being done?

  • Hi I'm 58 . I have a daughter called Lauren she has been fantastic but I am concerned for her. Her period is horrendous just like mine was so I would really like or GP to get the ball rolling for her but I think it's her age that's against her it's taking forever xx

  • Well with treatment 14 on Friday I have enjoyed having two days off.

     I have been feeling a little tired though not interfering with things and not unusual when temperatures are at this level.. Yesterday I had three bowel movements and one this morning that was a little looser than yesterday. I wonder if this is the start of side effects or something else. At least if latter I won’t have to faff about with those daily micro enemas. 

    So, 11 more treatments followed by 2 brachytherapy later on the same week as my last treatment. 

  • Wow that is very lucky in an unlucky way if you know what I mean xxx

    I'm having a scan tomorrow because I've been having a lot if pain in my pelvis they said it might be everything healing there's been a lot of work done in that area but they are scanning to make sure xx

  • Unfortunately where I am having my radiotherapy, you have to use an enema, regardless of whether you have had a bowel movement!! Enjoy the rest of your weekend off Muse and hope next weeks treatments go well. Keep us posted, as to how things are for you. For me it's particularly helpful, being someone, who will be starting as you're finishing.x

  • Hi Izzi, I am concerned for one of my sisters who is having abnormal bleeding. My sisters went to their GP and were told that they couldn't be genetically tested to see if they carried the gene for womb cancer until I had been tested. Where all this is going is that I am also worried for my daughters future. There is something called Lynch syndrome which they usually test the tumours for. Mine was tested and they say it's unlikely I have the syndrome but they are probably going to put me forward for genetic testing because my grandmother's had womb cancer. It might be worth you looking into it. I do hope your daughter is OK.

  • I do find that reading of others’ experiences with treatment very helpful though my radiotherapists advise that every journey is unique. Definitely changes to diet help though I was very happy to be told that salad was okay to eat. Still, white bread and rice isn’t too horrible and can live without baked beans, cauliflower and broccoli for a bit.