brachytherapy without radiotherapy for endometrial cancer.

[endo3]

Hi All, recovering from hysterectomy. I have grade 2 stage 1b endometrial cancer. I have been offered radiotherapy on its own or brachytherapy on its own. My understanding is brachytherapy has less side effects on bowel and bladder. Has anyone any experience of this they could share? I worry to that it’s not quite as effective as it targets top of vagina but not lymph nodes which radiotherapy does, tho they believe my lymph nodes are. clear. I would love others views and experience please.

[jude-the-obscure Community Pioneer]

I too had a stage 2 endometrial cancer and was offered radiotherapy , 5 days a week for 6 weeks then 2 lots of brachytherapy. I accepted both. That was 10 years ago. Like you I had no lymphatic involvement but the cancer had invaded the cervix.

I am now well (triple scan 5 years ago showed no trace of the cancer.) but I have damage to my sigmoid colon - the last bit of the descending colon just before the rectum.

They are now using special techniques I believe to shield the large bowel from damage.

Ask them about this. They developed it for men with prostate cancer. Your oncologist and the consultant radiotherapist should give you the best advice. Do not on any account rely on hearsay!!! Radiotherapy machines and treatment get more sophisticated year on year and more precise in what is targeted.

Every patient is an individual and these days they do take care to listen to your concerns and answer them properly. All the Macmillan booklets are worth reading too.

I suffer from IBS sometimes (C) . sometimes (D) and have gradually learned to manage it. It was made much worse by the radiotherapy, especially after 5 years oddly enough. But I have survived the op and the treatment for 10 years, nearly! I also had chemotherapy - 3 courses but I guess they are being very cautious about that at present as we are by no means free of Covid 19. Chemo reduces your general immunity quite severely and is therefore not good news at present.

I wish you all the very best with your treatment! If you have to have a female cancer , endometrial is a good choice! Even 10 years ago the survival rate was around 92% 😊

[endo3 in reply to jude-the-obscure]

Hello Jude,

Thank you So Very much very taking time to reply to me. I am really happy to hear you are clear of cancer. So encouraging to hear. Sorry to hear you have had damage to your colon and IBS. Not sure what C and D mean? Do you mind me asking how much your side affects impact on your life. Do you feel able to go out for the day? Travel? Are you in much pain? Please do not answer if I am being intrusive. I am afraid of contact pain and the thought of not being able to just go out for the day or visits my kids. It’s a scary journey isn’t it, not knowing.

You are right no two people are the same, but right now I have a need to reach out and find out just hi manageable it all is.

Thank you so much.

[jude-the-obscure Community Pioneer in reply to endo3]

C stands for constipation and D for diarrhoea!

Both can have major nuisance value and at first (2015) I found the constipation was awful. They scanned my chest, pelvis and abdomen using contrast medium in 2015. This showed no evidence of recurrence but did show what the medics called "a loaded colon."

This meant I was very constipated. I tried Movicol, docusate and a variety of other remedies but only got help when I went to see a gastroenterologist 6 months later. She did a colonoscopy and found the damage to the colon. She prescribed Fibogel and milled linseed. Eventually this helped sort things out. I had previously tried a special diet called FODMAP with the help of a dietitian but this did not help me much at all.

I suffered quite badly from anxiety and depression around this time - a feature of my life when a loss situation arose. I persisted with this and got treatment which I am now on for the rest of my life. Coping very much better now, I have to say.

I saw another gastro- enterologist - recommended by PRDA who told me not to allow anyone else to put a tube into my rectum or colon. There are safer ways of investigating problems. He checked my small bowel function (it was fine) and reassured me.

I have learned to manage my symptoms, wear an extra long pant liner for security when out, take my milled linseed religiously every morning with my cereal but no longer need Fibogel or other aperients. I get bloating and colic from time to time and use loperamide for diarrhoea if I am planning to go out on such a day. It works really well - I only need 1 or two tiny capsules to stop my gallop! Mebeverin (long acting) twice a day and colpermin three times a day help with colic and bloating. I occasionally take Buscopan for serious abdominal pain! Food and mood affect me . Onion family are out of the question but I eat a very healthy balanced diet and enjoy soft fruits and soya ice cream, I have been dairy free for at least 30 years!!

We have been able to get out for trips (til Covid Lock down) and had holidays in the Lake District, Pennines, Devon and Cornwall. I make a study of public loos and know where to find them! See Sarah's posts. Last year we saw our great nephews and enjoyed visits from family who live in Yorkshire. We had a very happy social life.

This year we have been shielding my husband from Covid and gardening for England. My garden is a great stress buster!!!

Dear endo3 - it is manageable and I am glad to be still alive, honestly!

You may not get any damage at all from your treatment. You must talk to the oncologist again and ask as many questions as you need to. Their advice is really the most reliable as they have all the information about you at their finger tips. But in the end it will be your decision. Talk to the Macmillan nurses at your hospital too. I found them a really good support.

I had no lymphoedema at all. During the general radiotherapy I had diarrhoea on the Sundays between treatments but it settled on its own. Things have moved on a great deal since 2011 when I was treated.

I am so pleased that we now have this forum to "air and share" - it helps a lot to know how others are coping.

Thinking of you and hoping all this helps!

"Jude" 😘😊

[endo3 in reply to jude-the-obscure]

Wow, thank you so much for your lovely reply and sharing your experiences and what has helped. It makes me feel so much better. So if you go out for the day you can manage by taking meds. I dont expect life to be the same but would like hope that I can have good days out even between not so good days. It sounds as if it’s trial and error with what helps and what doesn’t. It’s all such and unknown and of course I fear I will get all the side affects. It is a bit of a lottery isn’t it. I am really trying to be glad I am alive, I am but until I make my decision I feel anxious. I really appreciate the support and connection of people in this site. It helps so much. I only came on yesterday and still a bit confused how it’s all working. From what you said you can view all the replies. I will figure it out.

I am really encouraged and happy for you that’s it’s been nearly 10yrs and you are doing ok.

[jude-the-obscure Community Pioneer in reply to endo3]

See my reply below - but I wanted to say that I am sending a huge hug over the internet and saying that its quite OK to ask - this is a private forum for people like us and if I can help I am only too pleased. It can feel very lonely when you are faced with these decisions and you are not on your own now!

💕

[jude-the-obscure Community Pioneer in reply to endo3]

Have just read all your posts and replies. Brachytherapy is a kind of internal radiotherapy which concentrates the radiation on the upper third of the vagina. It does not hurt but is a bit uncomfortable. May have improved even more since 2011!

I have a friend who is a radiographer (therapeutic) and she said they were busy but being very selective in the way they treat people. There are more issues on the table than before Covid reared its ugly head!

See above posts written half an hour ago!

[Perido]

I had radical hysterectomy for cervical cancer about 3.5 years ago. I then went on to have chemo-radiotherapy followed by 2 short sessions of brachytherapy. My radiotherapy was targetted which minimises damage to surrounding organs; I believe that targetted radio is the norm these days (check with your medical team) and people generally don't get the degree of bowel and bladder damage they used to. I have fairly minor bowel problems consisting of occasional bowel incontinence and bleeding but nothing that a small panty liner can't cope with. I do have a lot of bladder problems including urinary retention, stress incontinence and frequency. It seems I had the worst of luck in that nerve damage during my hysterectomy caused my bladder retention (I have to use catheters) but the oncologist suggested the radiotherapy may have caused further damage to my urinary system; I can't say which treatment did what exactly.

By far my worst problem is lymphoedema (progressive and incureable) which causes me a LOT of problems. You are at risk of lymphoedema anyway if you have had any lymph nodes removed but radiotherapy further increases your risk for lymphoedema because it'll 'fry' your lymph vessels in the pelvic region and also any remaining lymph nodes. The majority of patients either don't get lymphoedema and some only get it mildly but if it becomes fairly severe like mine it's truly horrid - quite debilitating.

I only had minimal brachytherapy consisting of 2 sessions about 15 minutes each; I have heard of women getting maybe 4 much longer sessions of brachy. Two minor sessions must cause less damage than 4 major sessions. I think the main side effect of my brachy is to the vagina. After my chemo-radio treatment I was advised I had a risk for vaginal adhesions and had to use dilators for about a year to prevent that happening. Also my vagina will forever have a tendency to shorten and narrow but again I don't know exactly what effects are due to radio and what is due to brachy.

If it were me in your situation I'd go for the brachy but that is soley because, based on my own experience, I would want to avoid anything that increased my risk for lymphoedema - you might want to double check with your medical team if brachy damages any of the lymph system. Having said that I understand that you are possibly concerned that there may be the odd cancer cell in a lymph node which only the radio would deal with; it it were me I would go with the opinion of your medical team that your lymph nodes are clear (insert disclaimer).

Hope that helps a bit? I'm afraid these decisions are inevitably a bit of a gamble and no two people have identical experiences,

[endo3 in reply to Perido]

Hi Perido, thank you so much for taking the time to reply and sharing your experience. I am so sorry that you have Lymphoedema and it causes you a lot of problems. I can’t imagine. It must be horrible. It’s all a gamble isn’t it. Non of us know whether it will be us that have the worst tho I understand having surgery, hysterectomy makes it more likely.

I wish you all the very best and once again thank you for your reply. In some ways Lymphoedema wasn’t maybe number one in my thinking so I am pleased to re think this again. All information is really helpful.

[endo3 in reply to endo3]

Hi Perido, one last question as I have now been googling Lymphoedema. Do you know how many lymph nodes were taken out during your hysterectomy? I had sentinel nodes removed. I gather the more nodes removed the higher risk Lymphoedema is.

I hope you don’t mind me asking you this.

Best Wishes

[Perido in reply to endo3]

Hi endo3

I asked about sentinel node removal at my first consultation with the oncologist but it wasn't on offer. I don't know how much things have moved on since my treatment early 2017 and there are bound to be differences between medical teams. Although I totally appreciate that the job of the oncologists is to try and cure cancer I did feel some of them were quite casual, even dismissive, about the side effects of the treatments.

I had 28 pelvic nodes removed and I'm not sure but it's possible more were taken. I believe that sentinel node removal does reduce the risk of lymphoedema compared to multiple node removal.

If you have any more questions I'm happy to try and help.

I suggest the following as good sources of reliable information and support:

Lymphoedema: lymphoedema.org/

Endometrial cancer: eveappeal.org.uk/

[Zigoin]

Hello Endo2

I too was Grade 2, Stage 1B (just), last August. FTAH last September and three short courses of Brachytherapy in November over a two week period. No lymph nodes removed. I have only had one physical follow up in April this year for one reason or another, but that was okay. However, recently I developed rectal bleeding. Following a very painful flexi-sigmoidscopy four weeks ago they identified a polyp in a rather awkward place in the anus, so I now have to go back for a MRI and colonscopy and a further appt after that with a specialist who does anal microsurgery. I'm afraid I'm making connections with the anal issues and the brachytherapy, but won't know for sure until they have finished all their investigations etc. However, I feel I have got off lightly, even if it does leave me with some bowel issues. Because of the anal issues my womb cancer follow up scheduled for this week has been put back to August. Good luck with your choice and keep us updated. Are you finding any FB groups that can help you?

[endo3 in reply to Zigoin]

Hi Zigoin,

Thanks so much for replying. Right now it’s so good to connect with people who have gone thro this. I am sorry to hear you have an issue with fibroid and it sounds as if it’s awkward and a painful procedure. I do hope you can get it sorted ASAP. I can imagine why you are making connections. I am sure I would too.

I have read online that brachytherapy is used as stand alone treatment for our stage of EC and you say you had it done last August.

When I had my 1st oncologist appt last week she said 6 mths ago we would not have offered you brachytherapy just regular beam radiotherapy but this was introduced at the start of corona because of fear of NHS being overwhelmed and less risk to patients just have a few sessions and consequently there is no data but it works well in other body parts. I am very confused by this. Full beam radiotherapy seems to cause so many problems so I would rather go for brachytherapy but her comments have confused me.

I had sentinel nodes removed and tested and there was cancer in the spacial part but not nodes so am worrying about that part. It had gone more than 50% thro lining of walls. Did you have any in spacial nodes?

How did you find the brachytherapy? Is it painful. There seems to be two kinds. One longer enquiring short stay other overnight. Mine will be similar to yrs I think. I am to have four.

I hope you don’t mind me asking questions. I seem to have so many.

I hadn’t thought about FB. What a great idea.

Good luck with your treatment.

Thank you so much.

[Zigoin in reply to endo3]

Its a Polyp causing the rectal bleeding Endo3 so they now need to establish the cause. it may be related to the womb cancer/brachytherapy or not. Yes, aside of the actual surgery, three sessions of Brachy was all I was told I was needed. I had a good honest chat with my Oncologist and she was very confident that was all that was needed. Each sessions was different. The first 7 minutes, second 8 minutes and final one 9 minutes. The only discomfort was you could feel them connecting the device to the tubes which contained the radioactive material. It is slightly noisy and you are shut in the room alone, but they do offer you music to listen to. TBH it didn't really bother me at all, except the initial pinching feeling when they connect it. The ladies were lovely and as they said, 'there ain't nothing we ain't seen', so don't be embarrased. Can I suggest you look on FB for this group and sign up, they are a brilliant resource and support: facebook.com/WombCancerSupp... And there is a Private Support Group which you should be invited to join. Any questions, fire them at me. Happy to help if I can.

[endo3 in reply to Zigoin]

Hi Zigoin, thanks again. I do hope the polyp is not related and just one of those things which you can have sorted. Thanks for the FB link. I will check it out. I want as many resources as possible.

Your Brachytherapy sounds pretty manageable, great.

Your bowel problems also sound manageable. Some stories I have read sound pretty horrendous, or at least life changing. I am in a fearful place at the moment and probably imagining the worst in it all. I think once I have made my decision and started treatment I will relax more.

Thanks for offer of further questions.

Good luck with your treatment too.

[Peppapyg]

Hi there

I was diagnosed in 2012 with Uterine cancer. It was in cervix, in lymph nodes and beginning to work its way to the edges of my womb. As my oncologist said...breaking free on all three counts. As a result I received 9 chemo sessions, 25 external radiotherapy sessions, and 3 internal radiotherapy sessions. I am doing really well. I used a dilator right from the start, and have nothing much in the way of adhesions, so that is great. Bowel issues are a pain, but a small amount of imodium makes my motions pretty normal. It is a long journey to find out what foods to avoid, for me cheese is a no-no for example. I have had bleeding from back passage, but this has resolved itself and was no biggy. If you want to ask me anything, please just do. Good luck...you will be fine xx

[Sarah_PRDA Partner]

Hi endo3 ,

I appreciate this must be a very anxious time for you, thank you for reaching out and asking for advice in our community.

I would always re-iterate that everyone is different and having radiotherapy does not automatically mean you will develop PRD.

I would encourage you to write down the concerns you have and discuss these with your medical team.

Wishing you all the best with your treatment.

[endo3 in reply to Sarah_PRDA]

Thanks Sarah. I know that’s true, I have just done my list and will speak to my cancer nurse.

[Sarah_PRDA Partner in reply to endo3]

That's great to hear, its always good to make a list as it's so easy to forget what you want to ask especially with the amount of information that you are given.

I hope your recovery from surgery is going well.

Please feel free to ask any questions you have on our community and you are welcome to point your CNS to the PRDA website if they need any reference material.

All the best.

[Daisyc3cjs]

If you choose to have Brachytherapy please do not suffer.

I say this because in 2007 when I had cervical cancer, I had 5 weeks of radio every single day plus 3 lots of chemo, I was told about half way through I had been booked in at the end of my treatment, for Brachy. This I was told would involve me being an impatient for 5 days, legs in the air and heaven knows what stuck inside me but was also told not to worry I could have morphine for the pain!

Suffice to say I completely lost the plot and flatly refused, demanding to see my oncologist. I still flatly refused saying the only way I would have this would be put to sleep for the procedure and I would not budge no matter what they said. I am not a good patient I am ashamed to say but, my life, my body etc. Also at the time I was working and being self employed could not afford any further time off. Hopefully re: Brachy things may have changed since 2007 but I saw no point in me taking up a bed for 5 days when the procedure could be done an alternative way.

He then referred me to a lovely lady consultant at The Harley Street Clinic, Dr. Mary McCormack. She was absolutely amazing. She explained she would do 2 sessions for me 2 weeks apart at the UCH in London where I would be put out for the procedure. I would add that I had private health insurance but even if I hadn't, I would have paid. So I had the two sessions didn't know a thing about it, came home and went shopping, this lady was my lifesaver for sure and I continued seeing her for checkups for 4/5 years after.

As I think I mentioned in another post I do have quite bad bowel side effects but manage by taking immodium instants as and when needed. I used 1 or 2 per day when I was in Vietnam and Cambodia last November and didn't have any problems. Food is always hit and miss, I like certain things but my body doesn't. I don't get stomach cramps just need the loo urgently sometimes!

I wish you well and hope all on here helps xx

[jude-the-obscure Community Pioneer]

How are you getting on 5 months down the line? Thinking of you and hoping that you are having the treatment you need.

very best wishes

Jude

[endo3 in reply to jude-the-obscure]

Hi Jude, wow, this is very thoughtful of you to remember. I am doing very well thank you. I have recovered from my hysterectomy/ surgery well. I opted from external beam radiotherapy and short term side effects seem to have more or less stopped. Both surgery and treatment were done so promptly. I feel fortunate during these covid times. I read the updates and emails when they come through from the site so I keep up to date with everyone else’s news. I am aware that so far I have got off very lightly, tho I have in mind from others, yourself included I think that long term side affects can kick in anytime and generally further down the line. My initial panic and fear about almost everything have settled and I am grateful to feel well and be well at the moment. I know by reading updates that many have to deal with difficult daily health issues. How are you doing right now Jude? I hope well.

With very best wishes

Endo

[jude-the-obscure Community Pioneer in reply to endo3]

So glad you are through the treatment and able to look forward with some reassurance about the future. I was given a 91% chance of a 10 year cure and that seems to be true! I am Ok thank you - still having to "manage" bowel function but content to be in lock down again as I don't have to worry about "foreign" loos etc.

Missed the zoom meeting - the invitation seems to have passed me by!

Happy with the posts really - lots of Zoom with my friends from my church.

Lets hope that 2021 brings a little respite from Covid 19 and a brighter future for us all

yours

Jude