Newbie !

[Dasch123]

Hi, I am new here. I was diagnosed with Stage 3C1 cervical cancer March 2021. I had 27 radiotherapy sessions, 5 chemotherapy sessions and 3 high dose brachytherapy sessions. My bowel issues started very early on and got worse and worse as treatment went on. I finished active treatment on 29th July. I am left with bad bowel/eating issues. I take Imodium every day and I can only eat 'side plate portions', I have bad hip pain that keeps me awake a night and I am unable to walk long distances. I get swollen feet and tingling in hands and feet and I have hearing loss and tinnitus and fatigue....(aswell as menopause symptoms as treatment has induced the menopause). Even with all that I am very grateful to have received treatment and I am awaiting scan results 🤞...not once has any professional mentioned pelvic radiation disease though? Yesterday my GP referred me for physiotherapy...but in general where I do I go with these symptoms? My GP wants my oncology team to deal with it and my oncology team say it is down to my GP now????I am in the UK btw x

[Blue_Hawaii]

welcome to this lovely group. So sorry that you’ve had join us, because of your treatment

Speak to Macmillan, they now are a where of Pelvic Radiation disease

Make a lot of noice

We are all here for you xxxx🤗🤗🤗🤗

[Dasch123 in reply to Blue_Hawaii]

Thank you so much x

[Jimbo65]

Goodness you've definitely hit the side effects jackpot. OK so presumably you are still under oncology until you get the all clear. So hopefully you've got an oncology nurse who you should be able to talk to and they should be able to guideyou. You've had major surgery and treatment so the body is all over the place and it takes a while to settle. That said damage by the treatment has likely been done. So are you on HRT, if not get that sorted straight away. Especially if there is no history of breast cancer in the family. It's really important you have HRT for your bones, body and mind. Have you had an xray on your hip, if not get on done. Radiation of bone can cause deterioration. Get referred to your nearest incontinence clinic to see if they can help. Go on Jo' Trust website for loads more information and help. And finally you will get through this and find a new way forward. Deep breath and grab everything you can to get yourself going again. Best wishes Xx

[Dasch123 in reply to Jimbo65]

Thank you so much...I haven't had surgery but like you say I think treatment has taken its toll. I'm not on HRT yet, I am waiting for an appointment at the menopause clinic as I have a VERY strong family history of breast cancer so my oncologist is not sure it's wise and wants a second opinion. I have had 2 MRI'S on my pelvis and abdomen since treatment ended but not sure if that would show up bone issues? I have started physiotherapy and they have said they may do a scan and possibly steroid injections as they think I have a lot of inflammation in my hips ? All thus certainly adds up and brings you down. I was so energetic pre treatment and would walk for miles...now I struggle to walk round a supermarket 😫

[Silver1-lady]

welcome to this amazing community , loads of support and advice I know the feeling being passed from oncology to gp and vice Verna. It’s 4 years since I finished treatment and only recently visited a late effects clinic thanks to this online community and PRDA group . Not sure what area you are in but contact macmillan or speak to your specialist nurse re late effects clinic xx

[Dasch123 in reply to Silver1-lady]

I have an appointment with my oncologist on Tuesday for scan results so I will ask her or at the Macmillan centre x

[Perido]

Re the swelling in your feet: I suggest making a GP appointment. If routine checks don't yield a diagnosis then consider the possibility of lymphoedema. Many GPs are not very knowledgeable about lymphoedema and you may need to self advocate for a referral to a lymphoedema clinic. The Lymphoedema Support Network (LSN) are great for information and advice: lymphoedema.org

[Harvit]

Hi, I'm 3 years NED from Cervical cancer stage 3c1. It does get better. I too had terrible tummy issues after the treatment in the beginning. I found whenever my hormones and hrt wasn't right this is when I would suffer the most from terrible tummy pains, and explosive diarrhoea. As soon as my HRT was upped my stomach issues eased. At times I get an unsettled period, followed by diarrhoea and then I either have terrible sore breasts, aching feet and fuzzy head. As soon as this happens I bleed. I've had it checked and my oncologist has no idea why this happens. I adjust my HRT and I feel ok again. How old are you?

[Dasch123 in reply to Harvit]

Oh wow really ! Have you only had the bleed since being on HRT? I am 48 and still waiting for an appointment at the menopause clinic at the hospital I had treatment as I am a bit complicated in terms of HRT due to a strong family history of breast cancer, my oncologist is not sure if they will put me on it ....my menopause symptoms are quite bad...I haven't had a bleed since treatment though x

[Harvit]

I'm 44. I paid to see a private doctor: Claudine Domoney. It was worth it. Basically my NHS consultant gyneoncologist was useless and totally unsympathetic on all areas after treatment. I saw Claudine and she was a godsend and extremely affordable. I think it was around £180. Basically bioidentical have less health issues as they are transdermal. Claudine is also based NHS at the Chelsea and Westminster. There's also a menopause clinic there too. Are you in the UK? I'm in Essex.

[Dasch123 in reply to Harvit]

Oh wow that is really useful info thank you so much....yes I am in the UK...also Essex! I am under Bart's for oncology. I have an appointment there on Tuesday so will see what they say. Thank you...I just want a bit of quality back to life x

[Harvit]

I hope Bart's is better than Broomfield with regards of listening and responding.

[Dasch123 in reply to Harvit]

Fingers crossed🤞 x

[Springsteen666]

I can sympathise totally with this. I finished treatment for 3C2 cervical cancer in Sept 2021. 6 months after treatment I started with rectal bleeding, my consultant tried to say it was piles as far too soon after treatment for it to be Proctitis. How wrong he was. I was eventually referred to a gastro clinic where they used purastat to try and stop the bleeding. It has helped but I still can’t swim and still wear paper bloody incontinence pants.

In October last year I started with what I thought was a UTI but they think it was radiation damage as no infection which they are treating with estrogen. I also attend a rheumatology clinic as I have osteopenia and the radiation treatment has only made that worse. Hope you get some answers soon. I am in the north east and have my oncology treatment at the Freeman in Newcastle. She molar experience by the sounds of it, they pass me to my GP who pass me back. It’s so exhausting trying to get anyone to listen..

Hope you get some answers soon, I am currently awaiting the results of a full spine MRI with a possibility of surgery which to be honest I will probably turn down if offered. Can’t afford to be off work and have lost an awful lot of faith in the medical profession

[Chargidevine]

I had cervical cancer in 2010

Please look into bile acid malabsorption , and see if you can get a sehcat scan for diagnosis

I was diagnosed with BAM due to damage to my lower colon I can’t eat more that 40 grams of fat a day , limited vegetables & fruits No spices curries etc ….

It’s a debilitating condition and not that much research has been done

Hope this helps

[Dasch123 in reply to Chargidevine]

Hi Chargidevine Thanks for your message. I am a bit further on since I posted this. I have had a SehCAT scan and an EPI test for the bowel issues and both were clear. The gastroenterologist is now saying my coeliac blood test was a little elevated so now wants me to have gastroscopy and biopsies to check for that. I really don't think that even if these biopsies comes back positive that it is the cause of all my issues😔I am currently taking 3 imodium and 3 mebeverine a day. My hip pain has got quite a bit worse now and more so on the right side, with lots of numbness/needle like sharp sensations in my toes. I have a GP appointment on Monday but I'm not holding out much hope for that 🤦🏻‍♀️I have been fitted with hearing aids for the hearing loss too.

[Sunflower1976]

Hi There,

This is a lovely group, I am also somewhat new but I am glad I have found it a reading some of the articles from people really helpful and also that I am not going crazy and it's not just happening to me!!! I was treated last year for stage 2B cervical cancer I had 28 External radiation 3 Brachytherapy and 3 rounnds of Chemo ( I was too sick to take any more) I have awful issues with my bowels and what I can eat now, I can't eat anything with a sauce nothing everything has to be dry, No Pizza either (just found that one out)

Somedays are really quite bad and on these days I have no choice but to stay in the house near a bathroom. I am in NI and on my last hospital review with my Clinical Nurse and Oncologist referred me for a Pelvic exam to see if I have PRD I was also referred to HRT clinic to see about getting that adjusted as I am 47 and in full menopause now and not sure the HRT is right yet, So maybe ask your Clinical Nurse for a referral just a thought.

I hope it helps and I hope you get some comfort from this group I know I do. It's good to know you are not alone as it can be quite lonenly going through all this. I know we all have family and friends but sometimes I feels like it's impossible for them to understand just what we lot have been through.

Take Care of yourself

😀

[RESPIRATION in reply to Sunflower1976]

I don't quite know where this fits but I think it should be raised. I developed Pelvic Radiation Disease shortly after the radiation treatments began and I have written about my gastrointestinal experiences now 15 years later but I haven't seen any posts about neurological changes. I was fortunate in attending a lecture funded by Wellspring (an organization that supports individuals living in the community after treatment) about the effects of radiation treatment to any part of the body resulting in changes in cognitive abilities. I was interested because I saw changes in myself. When the speaker asked anyone who had had this experience to raise their hands, there were a great many hands raised.

I had every intention of returning to work very shortly after my treatment but only when I was ready to return full time. I recognized that I was not physically able to do so and as it turned out I never was . Looking back I realize that I was not cognitively able to do the job either. And there have been minimal changes in my cognitive abilities to this day. I first noticed an impairment in immediate memory and subsequently in attention and in solving simple math problems. I have developed some workarounds but not up to the demands of my former job.