"Surprise" side effects from treatment?

We've heard that it can vary massively depending on your doctor exactly how much information you get about side effects before starting treatment. Lots of people seem to get information on hair loss and other side effects like fatigue and nausea, but there are so many other side effects that can happen. 

Have you experienced any side effects that you were not warned about? Maybe we can start to spread more of that useful information to members who are just starting off on their treatment plans...  :) 

Comments

  • TwicearoundTwicearound Posts: 3
    After my double mastectomy last year I developed cellulitis on both sides of the chest, which was treated with antibiotics. However I still have sometimes severe itching on one side, the side where the scar is not as neat and there is a 'bulge' with a deep crease in it which is hard to keep clean. I am waiting to see the plastic surgeon about 'tidying up' that area. I have not had radiotherapy there, though I did have it on the other side 16 years ago when I had a previous, unrelated breast cancer. Has anyone else had these sort of side effects purely from surgery? What helps?
  • SunshinedaffSunshinedaff Posts: 160 ✭✭✭
    emilyrose said:
    We've heard that it can vary massively depending on your doctor exactly how much information you get about side effects before starting treatment. Lots of people seem to get information on hair loss and other side effects like fatigue and nausea, but there are so many other side effects that can happen. 

    Have you experienced any side effects that you were not warned about? Maybe we can start to spread more of that useful information to members who are just starting off on their treatment plans...  :) 
    I think drs don't tell us everything that can possibly happen because for everyone it can be so different. I was surprised though at how painful it was when my hair fell out. I was not expecting that at all. I thought it would be like brushing your hair and strands fall out, painlessly. Someone suggested to me it could have been when the roots of my hair follicles were dying and the hair was just about to fall out. I was very glad to shave it off. 
  • scribblerscribbler Posts: 6
    Cognitive impairment that has lasted 18 months after my last treatment. Got fired from my job and the onco just said, "Oh, yes, memory loss is a common side effect of your treatment." No chemo, but three surgeries, radiotherapy and hormone therapy, the last two being the relevant ones. Would have been good to know that. There is a test to check on cognitive impairment, but you need your GP to refer you and mine won't.
  • emilyroseemilyrose Posts: 51 Community Admin
    scribbler said:
    Cognitive impairment that has lasted 18 months after my last treatment. Got fired from my job and the onco just said, "Oh, yes, memory loss is a common side effect of your treatment." No chemo, but three surgeries, radiotherapy and hormone therapy, the last two being the relevant ones. Would have been good to know that. There is a test to check on cognitive impairment, but you need your GP to refer you and mine won't.
    @scribbler That's awful, I'm so sorry to hear you lost your job over treatment! Sounds like it was handled badly by both your doctor and your workplace, wish there was more conversation and understanding about things like this at work. 

  • emilyroseemilyrose Posts: 51 Community Admin
    @Sunshinedaff Wow, I've been reading about cancer side effects for over a year now and somehow still had managed to miss the fact that it actually *hurts* when your hair falls out! I think maybe when you see it happen on TV etc it's this simple, painless thing, where you just find a bit of extra hair on your brush or in the shower, but it sounds like that isn't the reality at all - thanks for sharing, I've learned something useful today 😅

  • SunshinedaffSunshinedaff Posts: 160 ✭✭✭
    @scribbler, that sounds truly awful for you. Is it possible to change your GP? You'd think they'd be on your side helping you to re-adjust to life after illness. x
  • TwicearoundTwicearound Posts: 3
    I'm feeling a lot less intelligent than before my treatment as well. I had just started a two year MA course when I was diagnosed, managed to get through two terms but then had to suspend it for a year. Finished off my first year in July and August which was really tough, then took September off before the second year started in October. But I am finding it much harder now to engage with the course and feel like dropping out. Which would be a shame as I had actually been getting good marks. I think the strain of having to catch up with work took it out of me, and I am still recovering from that, but also from the treatment.
  • hessomhessom Posts: 66 Community Admin
    edited November 2018
    I'm feeling a lot less intelligent than before my treatment as well. I had just started a two year MA course when I was diagnosed, managed to get through two terms but then had to suspend it for a year. Finished off my first year in July and August which was really tough, then took September off before the second year started in October. But I am finding it much harder now to engage with the course and feel like dropping out. Which would be a shame as I had actually been getting good marks. I think the strain of having to catch up with work took it out of me, and I am still recovering from that, but also from the treatment.
    That sounds really difficult @Twicearound especially with things going well before your diagnosis and treatment. Is your school able to provide any additional assistance to make things easier? It can be tough after taking a break anyway but after having undergone treatment as well, I can imagine it being thrice as hard! Sounds like a touch decision :(

  • RobertARobertA Posts: 114 ✭✭✭
    My cancer treatment involves androgen suppression which has its own set of side effects as follows: 
    • You lose muscle and strength
    • You develop belly fat and man boobs
    • Your risk of metabolic and cognitive disorders goes up dramatically
    • Your libido, sexual performance and stamina take a nose dive
    • You suffer from a loss of energy, general fatigue and a range of aches and pains.
    • You get hot flushes.
    • High risk of osteoporosis. 
    • Depression
    The only side effect I was warned about was about putting on weight and man boobs. In fact, neither of those things have happened, partly perhaps, because I did a lot of research online and adjusted my lifestyle and exercise regime to counteract all of the physical effects. 

    My main reason for posting here is the issue of cognitive disorders which I have found very difficult to combat, and I really feel for scribbler and Twicearound in that respect.
    I am fortunate that I am retired and it is less important for me but I have real issues with concentration, forgetfulness and sadness. My wife used to get angry with me, but we have had counselling at the wonderful MacMillans and have learned that these changes are not my fault. It has helped us both enormously to understand that.
    It seems unbelievable that in a world where depression is now recognised as a genuine illness, that someone can be sacked for a cognitive disorder caused by cancer treatment. 
    Cancer leaves its mark on anyone who has or has had it and we must get that message across somehow. 
    Rob


  • JockJock Posts: 1
    Yes agree with most of Robert A in his post apart from depression after treatment for Prostate Cancer  certainly muscle weakness is a big problem.
  • RobertARobertA Posts: 114 ✭✭✭
    Hi Jock @jock ;

    Good to hear from you and welcome to our friendly community. Are you on  ADT (androgen deprivation therapy?) The experts told me that without testosterone I would not be able to prevent muscle loss. I decided to try exercise bands to counter this anyway. They are safer to use than weights and I have a little 20 minute routine which I follow four times a week. It has worked pretty well for me and I have actually lost weight and gained some muscle definition over the last twelve months or so. 

    I am delighted to find another man posting on prostate cancer issues.  When I tell people I have it, they nearly always say they know someone who has had it for 15 years and are still happily living their lives. It is a dangerous assumption as some 10 percent of sufferers have an aggressive and fast moving cancer. By the time mine was identified, the cancer had already spread to the surrounding tissues and lymph nodes and it cannot be eradicated, only managed. I would urge any male over 50 to ask their doctor for a PSA blood test and if any ladies are reading this, please ask your other half to do so. 

    Thanks for posting. 

    Rob  


  • RobertARobertA Posts: 114 ✭✭✭
    Th


    Here I am  spreading the word at the Co-op. Happy in my work. 
    Rob 
  • SunshinedaffSunshinedaff Posts: 160 ✭✭✭
    That's great Rob, love your photo.

    Lou x
  • RobertARobertA Posts: 114 ✭✭✭
    Wow, you were up early Lou - or late as the case may be.  I have been sleeping a lot better since the weather has got cooler.

    Rob X 
  • LesleyLesley Posts: 54 ✭✭
    Rob! Luv the pic!!😍
  • SunshinedaffSunshinedaff Posts: 160 ✭✭✭
    @RobertA ;

    Rob, 

    Hahaha...yes, up very early...4.30am these days to get eldest to work. Bless her, home from uni, but having to work to save some money. Mind you, just got in from visiting West Quay, and having dinner out, lovely evening.


    Lou x
  • LesleyLesley Posts: 54 ✭✭
    West Quay Lou! I used to live just along the coast at Portsmouth! Port Solent! We love it here in Lincoln only been here 3 months but I do miss the coast somtimes!😢
  • SunshinedaffSunshinedaff Posts: 160 ✭✭✭
    Hi Lesley, 

    Lincoln, I have never been there. I have realised there are large parts of the UK that I have never ventured to, not unusual I suppose.


    We go to West Quay often and Gun Wharf too. I grew up in Sussex, moved to Dorset for Higher Ed, and never moved again. Although now we are near Ringwood, technically Hampshire, but for everything bar the post code, Dorset.


    Lou x
  • LesleyLesley Posts: 54 ✭✭
    Hi Lou, very flat here except Lincoln city it's up on a hill quite beautiful! It's a cross between Chichester and Winchester! Old part of the city very old with cobbled streets and the best Christmas market! Quite magical! Well worth a visit! xx
  • LouiseJLouiseJ Posts: 42 mod
    Hi Lesley, 

    Ooh, sounds lovely. Will have to try and arrange to visit when we next get some holiday time. I went to college in Chichester, know it very well, and my daughter is at Winchester uni, so I know that very well now too. Haha. xx
  • RobertARobertA Posts: 114 ✭✭✭
    Afternoon ladies

    Back in the Stoneage I was offered a great job in Christchurch.  Couldn't go because my Mum would not move and I couldn't leave her in Jersey on her own.  I love the New Forest though I haven't been for quite a few years now. 

    My Dad, a true Yorkshireman said that they built the Humber Bridge so that Lincolnshire folk could escape to God's own county. He wanted me to be born in Yorkshire so that I would be eligible to play cricket for them. He needn't have bothered though as Yorkshire showed no interest in my talents whatsoever. 

    Seriously though, Lincoln sounds lovely. Wouldn't it be great if we could all meet up there for afternoon tea one day. 

    Rob xx
  • SunshinedaffSunshinedaff Posts: 160 ✭✭✭
    Morning Rob!

    Hahaha, you make me laugh! Can't believe that your cricketing skills were so unappreciated! 😂.

    It is a small world really isn't it, you find people who have connections near you etc. 

    Meeting up for afternoon tea sounds delighful! Count me in! 
    I have only passed Jersey on the ferry to France! 🤣. We did stop once and immigration came onboard.. I explained it was nothing to do with me!! 🤣😂😂. Would love to visit one day, my only knowledge of it is from 'Bergerac'! Haha. Ancient, I know! 
    Well perhaps not, since I was diagnosed every Dr I have seen pointed out I was a young person...get that!! I began to think if the medical professionals think I am young I must be! So I'm going with that theory, plus I have been counting my age backwards for several years now, I am almost 21 again! 

    Lou x
  • LesleyLesley Posts: 54 ✭✭
    Oh it would be lovely to meet up for afternoon tea! There are so many quaint cafes here! I live at Burton waters on the Marina husband hoping to get a boat soon so we could sail up the canal right into the centre of Lincoln  Happy days! Xx
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