Hi, never posted on anything like this before but don’t want to tell family and friends until I have a clearer picture of what happens next.
My journey so far…After a few months of continual bleeding which I ignored, thinking my HRT needed tweaking, (and HRT changed my life so I was terrified they would tell me to stop taking it) I went to my GP who agreed it was probably HRT related but sent me for an ultrasound just in case.
i waited for the ultrasound nurse to say ‘ can’t see anything bad but speak to your doctor about the results’, but instead she said several times “ make sure you speak to your GP in the morning.” Within half an hour of leaving the ultrasound I had a text from my GP saying they would ring me the next morning.
Endometrium measured 25mm, so I was being referred to Gynae for hysteroscopy and possible biopsy.
Gynae doctor explained if they saw anything suspicious they would biopsy, and when results came back in about 4 weeks, if anything was wrong I would be sent for an MRI.
Ended up taking multiple biopsies and mood in the room changed. Afterwards he said that he wasn’t waiting for the results but was sending me for and MRI and CT scan as an urgent referral.
Results came back. Biopsy showed precancerous cells so rapid access hysterectomy was organised. Had womb, cervix tubes and ovaries removed.. MRI results came back slightly later and showed a suspected stage 1 cancer but as treatment would have been the same anyway and was curative I thought the nightmare was over and I am recovering well from the op.
Had a call yesterday to say that histology had revealed Stage 2 cancer and now I am being sent for radiotherapy.
My biggest fear had been chemo and I don’t know anything about radiotherapy, although obviously I have been googling and have freaked myself out. All this has happened within 8 weeks and I am now 5 weeks post op. Have played everything down so far to kids and mum, the most they know is precancerous cells, husband and friends have been great but I feel like this is another level and don’t know how to tell them to minimise their upset.
Can anyone tell me how disruptive radiotherapy is? Any advice on how to tell people? I don’t feel strong enough to handle this and prop other people up as well.
Hope that doesn’t sound too selfish. The thought of putting the ones I love through this as well just makes it harder. Any advice gratefully accepted! X
Hi Nessylou, welcome to the group. First of all, please stop Googling! You risk getting out of date, inapplicable or even wrong info! I was diagnosed with predicted grade 1 stage 1a November 2021. Post hysterectomy histology changed it to stage 2 as a few cancerous cells were found on top of my cervix and I was shocked and upset as I’d hoped I was all done and dusted. The radio and brachy were offered to me as “belt and braces”, as an “insurance policy” and, after my first appointment with the oncologist (who was lovely and the appointment reassured me a lot) I signed on the dotted line.
How old are your kids? I didn’t tell mine about the cancer till I’d had the predicted grade and stage, but of course had to do this all over again when I got restaged. My husband knew from the start but I told very few others as I was finding it hard enough to keep on top of my own anxiety, let alone deal with theirs. To my (adult) kids and the world I presented a business as usual front, which is what I wanted. I wasn’t strong or brave but pragmatic - I just committed myself to get on and do what needed to be done. What I told my children that the hysterectomy was a success, that the cancer had all been removed but that I’d been offered radiotherapy to nuke any odd stray cells that might be lurking around. That it was an insurance policy to minimise chances of recurrence.
Re side effects - I asked my CNS if I’d be okay driving myself to and from appointments (an hour each way for me) and she replied that most people are okay for at least the first two weeks, but that side effects (usually upset tum) may start after that, so yes I would be able to drive myself but it would be good to have a back up plan just in case. I wanted to be able to drive myself as I wanted to be able to think of life at home carrying on as normal for my husband and dog! So that’s what I did. I didn’t get any side effects till half way through week 4 and then it was only slight bloating for which they told me what to take. Some people get tiredness from radio but I didn’t. I made sure I ate enough, especially in the evening after a treatment (it’s important to keep calories up as our bodies use more to make new cells) and also tailored what I ate to what was easily digested. For me the most difficult thing about radiotherapy wasn’t the treatment but just that it dominated each day with the travelling there, the waiting, the actual treatment and the travelling home. I requested to my oncologist that I had afternoon appointments so that I had time to walk the dog, have a poo and then drive; once I’d left I could be away from home from anything from 3.5 hours minimum to 7 hours if there were any delays. (7 hours only happened once when several machines needing servicing and they’d taken patients from another hospital too). It depends on the hospital though - mine was extremely busy (Southampton) but others may be quieter and not deal with so many patients. One lady on here who lived near her hospital used to phone the unit before her appointment to see if they were running on time and they’d tell her if to come in or stay home a bit longer. That wouldn’t have worked for me as I live an hour away and it could all have changed.
My suggestion re what to tell people would be to keep the drama as low as possible, both for you and for them. For me I played it down as something I’d been offered as a bonus, ie it’s all gone but they just want to make sure. Feel free to click on my name and read my story if you like! There’s also a dedicated radiotherapy and brachytherapy support thread on the group which I can post a link to here if you can’t find it. Feel free to ask any questions!
Hi Nessylou
Welcome to the Womb group.
I am sorry to hear of your diagnosis of stage 2 cancer and hope that you have recovered from the surgery.
Stage 2 cancer means that although the cancer was contained in the womb, some cancer cells have reached the cervix. It is normal to be offered some radiotherapy for this. There are 2 types- the first is internal radiotherapy/brachytherapy and this tends to be maybe 3 sessions. I did not have this but there are many ladies on here who did. The second type is external beam radiotherapy and for me this was done over 25 daily sessions.
For me the radiotherapy was tiring (with the daily travelling) and I did have some tummy effects. On the whole they could be managed with medication. People can have different reactions to radiotherapy and some people have more minor effects whereas others can feel the effects more. I also believe that having chemotherapy first could possibly have affected my experience as I was not fully recovered from it.
There is some info here.
Radiotherapy for womb cancer | Macmillan Cancer Support
Telling people can be hard and it is a personal decision on how much to say and who to say it to. One thing I would say is that it would have been hard for people around me not to notice my radiotherapy treatments as I was away from home for around 3-4 hours each day. I was also following a different diet to minimise tummy effects and emotionally it was all having an effect.
How old are your children? Age would be a factor for consideration.
My feeling for adult family would be to say something along the lines of you've had the surgery and are now having a bit of radiotherapy to mop up any stray cells/to be on the safe side and hopefully that will be the end of it. In that way you are explaining that you will be having some hospital visits but not going into too much detail.
There are some ideas here.
How to tell people you have cancer - practical tips | Macmillan Cancer Support
We do have the Support Line and it may be an idea to give them a call and chat things through so you are clear on what you want to say and how to say it. The number is below.
Hope this helps a bit. If there is anything you want to ask, please do so
Jane
Thanks so much for replying. I think that sounds like a great approach, I will use that! It was cancer but radiotherapy is just a back up to make sure it’s all done. Thank you. Kids are 23, 21 and 17 and I suppose there’s never a good time for this sort of news but as a mum of three girls I also think it’s important that they do know and are aware that they need to look after themselves and get stuff checked if they think it’s not right. Thanks again for your advice xx
Thank you for sharing all that, so glad I found this forum! Good to hear someone’s experience of radiotherapy as I know very little about it and what to expect. Also I think you’re right about minimising the drama when telling people. Onwards and upwards! Thank you x
Hi I had 25 sessions of external radiotherapy last year - had fatigue from week 2 onwards - which lasted a while, also some bowel issues which haven’t completely resolved but completely manageable. Have no regrets at all. Described it as ‘ belt and braces’ to make sure all cancer cells gone.
I was initially graded as stage one back in April today after op biopsy etc i was upgraded to Stage 3 ..
I have been recieving adjuvant treatment.
one piece of advice please stop googling
Had 23 external radiothery and 2 Bracktherapy so 25 in total..
You will get a CT planning scan first..where yiu get your placement tattoos..just like a sharp scratches .
I found radiotherapy to be OK to be honest it is a bind going everyday except weekends ..
It literally take 10 minutes if that..
My side affects were doable..
Some abdominal discomfort
Loose bowels..
Exhaustion.
Having too use suppositories for the first 10 days was the worse part ..The radiotherapy teams are amazing and you really are taken care of !
I found keeping hydrated and watching what I ate helped me through treatment..ie stop bloating
I drove myself to and from appointments..
Three weeks after radiotherapy finished I began my Chemotherapy treatment..
I am now 3 cycles down of 4 of my Chemotherapy plan ..
It's a scary time .but Try and take one day at a time ..
Wishing you well on your journey to recovery!
Thank you for going to the trouble of replying while you are going through all that! It’s really helpful to hear how it all works so I know what I’m facing, not knowing is the worst bit. Good luck with your treatment. Xx
Nessylou, just to say that different hospitals do things differently: some hospitals like you to do a mini enema each day before treatment (and one before your planning mini CT) and some don’t as long as you’ve had a bowel movement that day. That’s what Cariad1228 meant by suppositories. My hospital didn’t require this as long as you’d had a poo within 12 hours and as I knew that I usually have a poo in the morning that’s another reason I asked for afternoon appointments.
Thanks for that excellent tip!! Il make sure to ask about that when they book me in
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