Finished treatment and struggling!

Hi I’m new to Jo’s ! I was diagnosed with grade 3C CC on 18th March this year and am now 6 weeks out of treatment. I had 27 external radiotherapy, 5 chemo and 3 brachytherapy. At my 4 week check up i was told the cancer is now 2cm (previously 3.5cm x 4cm) i know brachytherapy continues to work for 3 months, and i will be scanned in November :crossed_fingers:I am finding I am struggling with this ‘limbo’ stage. I thought i would feel better much quicker than this. I am shocked at how long it is taking me to recover from treatment. I am usually so full of energy and always on the go ! I am due back to work in 2 weeks and will do a phased return. Is anyone else struggling at this point ? I still have bowel side effects so eating is an issue, fatigue, joint pain (mainly pelvis/hip) and odd bouts of nauseau and nerve pain BUT there are improvements with all of these and i am coping​:+1:. I get really down some days, it’s just not me ! My thyroid is imbalanced atm due to treatment and obviously menopause is now kicking in so that isn’t helping ! Is it ‘normal’ to take this long to recover? My oncologist and loved ones are telling me not to run before i can walk and that it’s early days but I’m struggling with it mentally.

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Gosh, 6-weeks is no recovery time at all! The radiotherapy keeps working for months and therefire you will get side effects too. You are doing absolutely brilliantly and things will get better and better. Be kind to yourself, spoil yourself and you will get there!

Karen x

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Thank you for replying x
Your opening ‘Gosh 6 weeks is no recover time at all’ made me laugh ! I thought i wasn’t doing well ! I feel guilty and frustrated when i haven’t got the energy to do things. In my head i am thinking i am not ‘physically’ going to hospital for treatment everyday now and should be able to do more than i am x

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Hi Karen

It really is no time at all in the scheme or recovery time-your body has been through a lot with treatment. Don’t expect too much too soon, and take care of yourself. You’ll get there, but let your body recover. x

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Thank you for responding @Lilypingu. I am struggling to ’ be kind to myself’ big time ! It is reassuring though that two of you have now said it’s still very early in terms of recovery x

Hi @KarenP

Both myself and Petesdragon have had major surgery after first line treatment, so I think we realise ourselves how hard recovery is in general, and can be underestimated. Side effects can linger for a bit, radiotherapy is still working in your body, so just don’t be too hard on yourself!

It took me a few weeks to recover from chemo/radio, and for my bowels to settle and my fatigue levels to improve. But they did! Take care. x

Hi Karen p
I’ve basically had same treatment as you,i had bit more chemo. Had last treatment in February,the brachtherapy. I was given all clear in June and i’ve still got pain in groin,pelvis and thigh’s,also got neurotherpy in my feet and hand’s and i’m nearly 4 mouth’s out the other side. I’ve been told it could all stop tomorrow or could last year’s!!!
So do take your time,slowly slowly and don’t beat yourself up about it if you can’t manage thing’s you used to do.
I’m on phased return to work,over done it a bit,but my body told me that. So you will know what you can do. Hope you have a good boss like i’ve got.
Good luck with thing’s and again don’t rush thing’s,finger’s crossed it will all come right in the end,hug’s
Xxxx

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@Lilypingu thank you… need to get my mindset in a different place I think ! As my fiance keeps saying…it’s cancer treatment not a stubbed toe :rofl::woman_facepalming:t2: i need to take my time clearly x

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Hi Karen,

I just finished my treatment 6 weeks ago too , was 3C1, had 23 Rad/5 chemo/3 brachytherapy. I know exactly how you feel, I too had so much energy before and up to 4 weeks into treatment, I was still able to go hiking, then right at the end of Rad/chemo, the real fatigue set in and got worse after brachytherapy. Dr said cumulative effect of external radiation was biggest reason. So throughout the end of August and early September I thought I would be bouncing back already, and was so frustrated being so tired. But the last 2 weeks Im finally starting to feel more energy and food is now much more tasty. It’s hard to know all the effects of treatment on our body, so I am trying to be patient and realize I still am healing. I also worked throughout treatment only took 2.5 weeks off in early August. I need to be mindful and take time to rest, even though I want to be normal again, I now know I’m getting there and so will you. This is all temporary!

@Ronaldess thank you for posting. It is good to hear you got the all clear in June !
I work in a school and this year we have a new head but i have met him twice now and he is being very supportive :+1:

@ShareBear …it was the 4 week point when it hit for me too! I am on thyroxine and that went completely down off the scale at that point because of treatment and it still isn’t stable so that is having an impact too​:woman_facepalming:t2:it made the back of my hair fall out too and i needed a blood transfusion at 4 weeks​:woman_facepalming:t2:Brachytherapy was explained so well to me but not that accumulative effect of fatigue and the stinging/burning…that took weeks to ease as i had radiation sores down there too​:woman_facepalming:t2:i suppose when you add all that up and throw in an induced menopause it is no wonder recovery is a bit slow​:face_with_hand_over_mouth: i have had a GP appointment today who has suggested a pain medication regime, probiotic drinks and Buscopan to help with the stomach cramping when i eat and to get some good bacteria in my system, a hearing test as i am struggling with my hearing and have tinnitus…and he has suggested anti depressants for short term use, as it is a lot to deal with, but i am holding off on that suggestion ! :woman_facepalming:t2:

I was diagnosed with stage 4b oligometastatic CC (the metastasis was a tiny area in my sacrum that they almost missed) last April, I finished my first lot of treatment (total 33 external radiotherapy and 2 chemo) last July and I was still suffering from fatigue in January this year. I also had pelvic insufficiency fractures and bone marrow edema from the radiotherapy so I was in serious pain for months and I was amazed that I was NED for 7 months with pain that severe.

Everyone reacts differently to treatment but it’s normal for side effects to go on for several months. I didn’t have brachy but I imagine the side effects are worse than just from external radiotherapy, when you think what it actually involves.

As for your thyroid, I already have an underactive thyroid but following treatment last year I had to reduce my thyroid medication because my blood tests showed it slightly overactive. That is to say it’s not as underactive as it was and my medication dose was now too high. They also found a nodule when they did an ultrasound and they did a biopsy immediately (guided by the ultrasound). That was slightly uncomfortable but not painful and I didn’t want a local anaesthetic and it wasn’t needed. The nodule isn’t cancer and could have been there for years, and in fact most thyroid nodules are not cancerous. But if the treatment had affected your thyroid you could ask them to do an ultrasound if they haven’t already.

I found going out for very small walks, even just round the garden, was better than doing nothing, if I just lounged about I felt more exhausted. Once the pelvic insufficiency fractures were diagnosed I was told to stay off my feet as much as possible, which I did, and I took calcium and vitamin D tablets and added a lot of calcium rich foods to my diet. Those fractures usually take a few months to heal if you stay off your feet and for me it was literally 3 months. My GP was already prescribing morphine tablets and liquid and she increased the dose slightly when the fractures and bone marrow edema were diagnosed.

I would ask the hospital to check for fractures as they are very common, more common than you might think. You could also ask your GP to refer you for a bone density scan.

I hope you feel better soon, and I hope they can sort out your tumour.

Xxxx

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@Lally oh my goodness…so what treatment are you on now ? How is your pain ?
My thyroid has been removed as i have had thyroid cancer. I had been on a supression dose of thyroxine but my levels went to rock bottom at the week 4 point of CC treatment and my dose was changed…now it is too high and has been changed again ! My GP has mentioned about the risk of fractures this week actually x

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@KarenP
I am currently about to have my 4th cycle of Paclitaxel/Carboplatin/Bevacizumab (Avastin) on Thursday and also getting CT results today (phone appointment so I’m hoping that means it’s positive news as they usually haul you in face to face for bad news).
It’s been okay mainly, apart from a few hiccups. I usually feel crap for a week to 10 days but apart from peripheral neuropathy which does mainly wear off between cycles I can’t grumble. I haven’t really had any bad side effects.
Thyroid meds can take months to get right, when I first found out I had an under active thyroid it took about 6 months to get on the right dose of Levothyroxine, there’s no real way round it.
I hope you’re sorted out with regard to that now.
As for fractures, make sure that’s followed up, because the earlier any fractures are diagnosed it means you can keep off your feet as much as your life permits.
Keep your chin up!
Love xxxx

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Hi Karen. I’m a year out of treatment. Your body has been through a lot with treatment. I thought I’d bounce back right away when treatment ended but it’s not been like that. More slow and steady progress with lots of resting and pampering.

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I’m amazed you could even consider work at that stage. I love my job but after treatment I was literally bed bound for about a month. I’m sure it was 4 months later I went back on a phased return. I also struggled with not being able to do things I wanted but I had to frustratingly listen to my body and recover. I’m back now and feel like I was never off. Most days I feel like it didn’t even happen to me. I do have side effects but have come so far from where I was at the end of treatments I just adapt and it’s my new normal now xx

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Hi Steffi86… yes i think, looking back now, it was a little too soon to go back . There were pros and cons i guess. I was feeling quite down mentally, being at home and feeling rough, so being at work helped in that respect…but physically it meant i took a step back and couldn’tamahe anything other than ‘going to work’. I work in a school and go back on Thursday full time. My next scan is in February :crossed_fingers::kissing_heart: