Cervical cancer - 10 months on...

[Ladyparts]

Hi everyone Thank you for accepting me into the group I'm pretty sure no one wants to be in!

I was treated for stage 1b3 squamous cell cervical cancer late last year, so am almost a year post treatment (5 weeks of chemoradiation and 2 x brachytherapy.)

I attended all my cervical screening appts, but unfortunately it was missed. What a bugger!

I got the all clear in May this year and have had clear paps and clear hpv tests since then.

BUT. I am in constant pain that sounds very much like PRD. My gynae oncologist said that radiation damage is common, yet I can't find anyone amongst my network with the same problem.

Fortunately at this point my bladder is fine and my bowels are reasonable - the issue is what I'm assuming to be nerve and tissue damage. My lymph nodes were also radiated as a precaution, eventhough nothing showed on pet etc.

Somehow my body is refusing to heal and I am in a continuous cycle of 'flares'. At the moment it feels as though I'm burning on the inside - like an open wound that has had alcohol poured on it - but the pain changes all the time and moves around my pelvic area/hips. Sometimes it is more of a cramping, throbbing or aching feeling. I try and manage with heatpacks, exercise etc, but have to resort to oxycodone on occasion. Recently I've had a pulling feeling in my intestine area - perhaps some sort of adhesion? It is driving me absolutely crazy and I'm concerned it's not going to improve over time. I realise it's early days, so I live in hope.

I am currently trying CBD oil on prescription, endep (although I don't think this has helped) and a range of other supplements etc. I take body identical hrt and see an integrative gp, hrt gp, naturopath and pelvic physiotherapist - I am practically working to afford health visits and medication!!! You would know what that's like if you're here, so I won't go on...

Anyway, hoping to find others who understand what I'm talking about! It seems that, while oncologists are brilliant at what they do, they draw a blank with radiation side effects. I have basically been told to take painkillers and get on with it.

#cervicalcancer #brachytherapy #prd #cbd #endep #hrt #painrelief #longtermeffects

[janfarrugia]

I am so sorry to hear about your pain. I am obviously very lucky not to have suffered in this way. I am also sorry I cannot advise but can empathise and wish you my very best

[Ladyparts in reply to janfarrugia]

Thank you I'm sorry to meet you here! It's not fun is it?!

[Renee1964]

Hello , Ladyparts . It does feel as though you are giving birth sometimes !! On my side it goes in cycles , the pain that grips you is the radiating thickening your intestine, colon etc

It can be bad somedays and I normally use heat and pain killers , morphine.

Everything is still inflamed and it takes time to go down. In time if it carries on ask for an ecodoppler to see that you don't have a frozen pelvis and they may do a colonscopy to check.

You do learn to live with it

XX

[Ladyparts in reply to Renee1964]

Thank you Its not fun is it! How long has it been going on for you? Did you notice an improvement over time? I realise it's still early days for me. I might try some heat patches. I find that sitting aggravates things massively, so have to take my wheat bag to work - thankfully now have a standing desk. I never thought standing up could be so good!!

[Renee1964 in reply to Ladyparts]

Hello , for me its been 7 years now , 17 weekly chemos 76 daily radiations and 1 brachqy. Symptoms started about a year after treatment finished and they have been getting worse. Started on tramadol , morphine , phentolyn which I just can't ( felt like a drunk on a sea storm). Stress fractures on pelvis severe osteoporosis , all slow gifts from treatment 🥺

For me its a hotwater bottle , rest , watch tv , reading.

I did find that dancing yoga , very gentle helped a lot !! My partners were all over 70 and I was in my 40's, and some songs I had to sit out while they moved without a problem !! It was a laugh that and enjoyed it, though I had to stop because of fractures from radio on spine. Walking is good ,you feel sore but it is a good soreness.

Sitting does aggravate pain unless it is on a heated blanket. Apparently the gastro wants to do a colecstomy bag , and we are fighting over it so far for the last 2 years, upto now I win even if it means nutritional shakes , which are quite nice I must say 😂😂😂

On the whole , you get through the ups and downs even though it may not seem so on the bad days.

Try walking taking your time or a bit of yoga for older folks , it is much gentler

XXX

[Mumandwife]

Hi there, I feel your pain literally. I am 8 years on and have bowel issues as well as pain in my joints, especially in the pelvic area as well as skin problems scarring in my vagina. I am mostly getting on with things but it does affect my mental health from time to time when I dwell on how different my body is. Exercise definitely helps though. Happy to chat more if you have specific questions. Wishing you well with your recovery, it is longer than people realise but hopefully it will be complete xx

[Ladyparts in reply to Mumandwife]

Thank you so much. Its a relief to hear that this is an actual thing and I'm not alone - although at the same time, I'm sorry that you have had to go through this

It really messes with my head just how bad the pain can be at times - I think "Surely this is a recurrence!". But as my sister pointed out, I didn't have this kind of pain when I had a big tumour on board, so i can probably conclude that my body isn't happy about the poisoning and barbecuing that went on!

I try and walk everyday and hope to join an aqua class now that the weather is getting warmer over here. My doctor recommended moderate to high intensity exercise at least twice a week inbetween walks , but I buggered up a hamstring on the treadmill a few days ago and these hips really don't like sprinting anymore....

Thank you for your support

[Dustyangel]

Hi there i very much understand the issues that you are having. I got the all clear 16th March this year I had cervical cancer stage 2b also in peIvic lymph nodes had 13 chemotherapy , 25 radiotherapy and 2 brachytherapy. I take co codomol it works to a certain point stopped taking morphine, also have bowel bladder issues which are getting treated with medication. I have pain expecially on my left hip, I did have hairline fractures in my pelvis after radiotherapy,also a great deal of pain under my butt cheeks if you can amagine a c shape underneath the cheeks. Lower back pain also stiffness in pelvis and hips It does get you down 11 months I have dealt with this now, my oncologist says its something that might go away in time or it might be something I have to live with. He did admit however they did not believe in prd ,but as more people come forward they too are learning. I know it hurts and it hurts bad sometimes but I will get on with it I can deal with pain would rather not have it but we have beaten cancer ! I'm now not coping well with the mental side of things just my head over thinking! X

[Ladyparts in reply to Dustyangel]

Hi Firstly, congratulations on getting the all clear! I agree that you have to push through and get on with it - and do what you need to do with pain relief etc.

I'm really sorry to hear that you are having these issues. So many of the girls I v went through treatment with seem to be doing really well now and I often think 'what's wrong with me?!!'. But everyone is different and I have to remember that pain doesn't mean cancer, or my head goes to recurrence land!

I understand the mental side of things - my gp pointed to my pelvis last time and said "you've been through a horrific car accident there" and then pointed to my head and said "And you've been through a horrific car accident there too. This is going to take a lot of time".

I feel like I can deal with the pain as long as I know it's not going to kill me, but it still bloody hurts! And SO difficult to describe to anyone who hasn't had it. No wonder doctors seem so clueless!

[Dustyangel]

Thank you and a very big well done to you also for beating it. It definitely was a brutal time going through all the treatments wouldn't wish that on anybody! I know its hard to get your head round things. I'm giving hrt a go as I'm now in menopause since the radiotherapy agreed to try it for 3 months see how I get on as its supposed to help with bone and joint ill try anything! Haven't got it yet though should be this week. Will just have to plod on and be grateful for a 2nd chance. It does help reading about other people and what they are going through feels like I'm not so alone x

[SpaghettiBetty]

I’m sorry you’re in this ‘club’ 😕 I totally get what your describing. I’m impressed your oncologist acknowledged that radiation damage is common!

I had horrendous pain in my hip area just months after treatment which turned out to be an insufficiency fracture. It was eventually picked up on an MRI. Have you had any recent scans to rule fractures out? I’m just thinking that if your pain is being caused by an insufficiency fracture, any high impact exercise could make things worse.

The gripping pain in you abdomen sounds similar to adhesions, the only thing that helped me with that sort of pain was a hot water bottle or heat pad. If the griping pain is intense and accompanied by vomiting you must seek medical attention immediately as it could be a partial or complete bowel obstruction (I don’t mean to freak you out as it’s really not very common, but worth knowing as it is a medical emergency).

One of the biggest issues I found was that opioids made my abdominal pain worse as it would make my gut very sluggish

Really hope you get some relief soon. We’re all in this together ❤️

[Ladyparts in reply to SpaghettiBetty]

Thank you Yes I hope everything just heals and I can move on! We can only dream!

I haven't had any scans, but my gynae oncologist said that if things persist he will consider it at my next 3 month check (or sooner if I have to call them). Interestingly, he was much more willing to acknowledge radiation damage then my radiation oncologist! I told my rad onc that I had sore hips etc after I finished treatment and he told me 'its not radiation related'. Um yes, yes it is!! You cooked my insides!! Of course it had an effect!

I will mention the adhesion at my next check and will definitely keep what you said in mind re the vomiting etc. Not fun! I can't believe more people aren't talking about this. Surely we're not the only ones.

[Memagh]

Definitely not the only ones! Sadly oncologists are really only concerned with the oncology side of things and GP’s really don’t have the expertise to deal with this. That doesn’t leave us in a good place. Tomorrow I’m one year out of treatment for 1b2 cervical cancer, one local lymph node involved.

About 3 months out of treatment I started to suffer stomach problems. Bloating, a lot of blood in stools, urgency and nothing happening, horrible lower stomach pain, etc etc. I decided to do a lot of my own research online and diagnosed myself with radiation induced IBS (PRD). I fasted for 24 hours to get some of the inflammation under control and then started to follow an IBS type diet. It made a massive improvement.

There are things I can’t eat that are listed on the low fodmap diet and somethings that are high fodmap that I can eat but it was a very good place to start.

Some things I can’t eat are apples, pears, lettuce, cucumbers, onions, mushrooms and peppers but I’m really good with raspberries, grapes, oranges, spinach and carrots. Lots of types of seeds and high fibre are a big no for me but I have found the perfect breakfast that suits me which is gluten free granola with fresh raspberries. My new body also loves grapes.

I’m not going to list everything here as obviously everyone is different. I have also found my body is much happier when I take probiotics (my favourite is bio-Kault) , peppermint capsules (twice a day) and high strength carcumin for inflammation.

I’m by no means symptom free and find something new weekly that my body doesn’t agree with (Doritos) but I am in a much better place than I was. So many of my pains disappeared when I got the inflammation under control.

Sorry for rambling but I thought if you haven’t tried something like this it might be worth it. Maybe people could add foods they have found that gives them problems or that they tolerate well.

Sending big hugs to you all.

Maria

[Ladyparts in reply to Memagh]

Hi Maria. Thank you for your reply! It sounds like our cancer was caught at a similar stage. I'm pleased you hear you're a year out - congratulations!

The side effects you're having suck though We are definitely trapped in some kind of inbetween as far as medical help is concerned. I have done a lot of my own research too.

Thanks for the info re what you're doing to manage inflammation. I need to look more closely at this. I am taking probiotics and a number of different things, but I do need to make dietary changes and get back on to curcumin. I am currently trying CBD oil for inflammation and pain, but am yet to see results.

I really hope things continue to improve for you

[Memagh]

Thank you! Also just seen your message regarding carcumin. I’m finding it very good for my joints. You just need to make sure that the % of carcumin is very high. I take a high dose (2130mg) of organic turmeric which has 95% carcumin extract. From what I’ve found, it definitely isn’t doing me any harm. The name of the one I take is turmeric vitality.

X

[Ladyparts]

That's great to know! Thank you

[RoseTyler]

I had a Stage 2b endo-cervical adenocarcinoma, no HPV and always perfectly normal smear test results. My cancer was also missed and I was fobbed off by doctors for 9 months whilst I was complaining about symptoms . They reckoned that cos I was young (30) and never had an abnormal smear result, that it was 'just' endometriosis. >

I am 11 years post-treatment and sad to say, the PRD has gotten bad in the last 2-3 years. Prior to that, I only had occasional hip pain and mild diarrhoea if I drank caffiene. I'm afraid PRD can kick off many years after treatment ends. It's a damn gift that keeps giving :/ . We survive, but at such a high cost :o. Good luck! x

[Ladyparts]

Oh I'm so sorry to hear that. I am, however happy to see that you are 11 years down the track. Congratulations in that regard!

It's just appalling that you were brushed off like that. Women face this kind of attitude all the time sadly. Its like, you're a woman - it's normal to be in pain etc. Awful. Luckily I have a new gp who leaves no stone unturned and actually listens to me.

Take care x