Recovery post treatment

mmcc3 Member Posts: 11
edited November 2016 in Health and wellbeing
Hi out there...

I have just finished my last radiotherapy appointment following a mastectomy and immediate reconstruction in Feb (with sentinal node removal only - node was positive after final pathology although initial biopsy and frozen sample was clear but no auxillary dissection was done).  Surgery was followed by 6 months chemo (AC & Taxol) and 28 radio sessions.

I am exhausted, as I expected, and the last few weeks of radio really wore me down but my back muscles also feel really tight and sore which I think is giving me a fairly constant dull ache in my back, particularly at night. My joints ache a little and I just feel week and fragile. I am so keen to try and get fit and healthy again but am not sure how to get started because I feel so depleted at the moment.  

Would appreciate any advice/experiences on how you felt post treatment and what may or may not have worked in terms of getting yourself to a point of feeling normal again!  I am really craving the feeling of having some energy and being able to feel confident in my body again.  I know I've only JUST finished and need to rest for a few more weeks and be kind to myself...just don't want to feel like this for long!!

Thanks all...


  • primek
    primek Broken HillMember Posts: 5,392
    Once feeling better and all healed find out if there is an encore program or something near you. You could get a gp management plan done and have a referral to an exercise physiologist once you feel ready. Failing that just start with 10 mins walking...and build up. You could do this morning and afternoon when feel ready then start increasing time. I also used to go to a warm pool and just do some walking or very light swimming. Little steps. I also found frequent rests when out...find a seat etc helps you to keep going.  You'll  get there. 

    My upper back also ached a lot but has settled now. I wondered if it was all the resting ....standing to cook was agony. But it has gone now. Our muscles have been weakened by the surgery...gentle breast stroke has really helped mine.
  • Deanne
    Deanne Sunshine Coast QldMember Posts: 2,156
    Hi Meg,
    It is such a long process and you do just desperately want to start feeling better at the end of it. I had a mastectomy, partial node clearance, chemo and then radio finishing about this time of the year back in 2013. 

    It does depend on your individual circumstances but I found I started to pick up about 4 weeks after I finished radio. As soon as my skin healed I started swimming. This really helped with the energy levels. Then I found I needed to exercise for short durations but everyday if I could. Early in the new year I started a pinc Pilates program. This helped a lot too.

    Fatigue was sporadic and on-going for quite a few months but with regular exercise I think it helped me to recover more quickly. You just need to listen to your body and build slowly. After a while I noticed that it was not the physical stuff that wore me out but the emotional or mental stresses. Exercise actually helped. 

    I also concentrated on a very healthy diet. I figured my body needed nutritious food to help repair the damage that treatment had caused.

    Look after yourself, like you said, take it little by little. Getting some help from a professional (like an exercise physiologist) is a good idea too. You will have good days and days where you feel a bit disheartened by what seems like a backward step. But those not so good days or times will gradually get less and less. Patience and persistence will get you there. This is a great place for help and encouragement. Take care. Deanne xxx
  • LITHGOW1950
    LITHGOW1950 Member Posts: 314
    Hi Meg, I'm still learning this new system, so I'm not sure when this was posted. I finished radio last April 2016 and after 3 weeks I was given the OK to head away in our caravan. I was feeling great, had some light excercise a to do and was ready to 'get better'.  Not that easy....I developed a sore tummy which they are still trying to solve. Following a colonoscopy and gastroscope I was told I had chronic inflamed dueodem. Maybe caused by too much acid. Now the surgeon tells me I have low lactase in my system so I'm off lactose food for one month to see if that helps. Also I get very tired and also do a mediation every arvo, if I miss doing that I'm in bed by 9.30pm. 
    So Meg, it's a long process. I managed to get through active treatment, chemo and radio ok, apart from getting shingles.
    So as Deanne suggests take it easy. Do only as much as you can. I also am expending pain in my back and aching in both breasts. I had a lumpectomy in my left breast. This did concern me but the good news is that my one year mammo and ultra sound last month was clear. Phew! 
    Hope you make good progress, keep us posted.

  • mmcc3
    mmcc3 Member Posts: 11
    Thanks everyone, I think I will start swimming when my skin heals. It's really reassuring to know others experience a tough time with easy to feel alone. Thanks xx
  • Ne
    Ne Member Posts: 335
    I would say start doing what you used to love doing, whether it be walking the dogs in the afternoons or hiking a favourite short route along a creek in a forest or going to a beach to walk along the shore.  I find being in nature made me feel more 'normal' again.
    I did go to the local pool 3 times a week for a easy swim while I was going through chemo, this was extremely invigorating and made me feel in controll.  I avoided the weeks my immunity was lowest and also avoided getting my head under the water.  I could'nt swim during rads, but was back at it after treatment ended.  When I got stronger I enrolled in PT for a couple of months and this too made me feel like I was getting back on track.  I since stopped PT because i just can't afford it but have enrolled in the online bone clinic exercised classes (Onero) which I do 3 times a week to help build stronger bones (due to osteoperosis).  This is a two year program and as you progress they send you the new videos over a period of 2 years to help you gradually build up your strenght.  All in the comfort of your own home.

    I guess everyone will be different but do it gradually and start with what you loved doing before.  Maybe even look into doing something you never tried before, like join a dragon boat team or a gym.  Congratulations on finishing active treatment and all the best for the future x
  • KezMac
    KezMac Near Kempsey NSWMember Posts: 4
    Inspirational ladies, thank you all for giving me hope & like you say that feeling of not being alone. My treatment was over 2009 - 2010. The emotional & hormonal journeys have also been the hardest for me. I have always eaten well & my immune system was well supported during chemo. I had a beautiful clay that I used during radiation & did not suffer any burning. The emotional journey has been the longest road & I am now researching the true effects of Herceptin, because I think that stole my connection to my emotions. I look forward to sharing some stories with you all. This is my first time back in 6 yrs.
  • Tinny
    Tinny South FremantleMember Posts: 6
    Hey KezMac....thanks for sharing your experience. I am very interested to know how did you support your immune system during chemo? And can you give any information on the clay you mentioned using during radiation. Thanks!

  • Brenda5
    Brenda5 Burrum Heads, QldMember Posts: 2,418
    It wouldn't hurt for your physio specialist to give you the once over and perhaps even a massage, or train a friend or partner where to massage for your back.

    I kept myself amused with jigsaw puzzles and movies for many weeks after treatment as my mind just couldn't sit right doing a lot of things I used to do quite easily. It comes back, bit by bit.

    I have a bit of a set back atm with a clot behind my eye and can't bend over or it kills the vision in one eye on and off. I was just getting back into gardening too. Feeling a bit cheated but its not all bad, hubby gets to continue with the vacuuming which I hate doing at the best of times.
  • Vinn2016
    Vinn2016 Member Posts: 72
    hi, I am post 5 weeks radiation treatment after 2 lots of surgery and chemo. I am having joint and muscle pain also. I am at my wits end with the pain as I too am trying to get back my pre cancer fitness. I spoke to my radiation dr about the pain yesterday and told him how it was affecting my daily life and he basically laughed in my face and said i'll prescribe anti depressants for the pain (over my dead body).

    Anyway today I just happened to go to a farmers market and a lady there was selling this powdered turmeric product which she says people swear by for inflammation  and she also mentioned that I need to build my body back up from a cellular level as the good cells have been destroyed hence why I am getting the muscle and joint pain. So I am going to look into rebuilding from a cellular level and I am also going to take the turmeric (I currently take the tablets but the powder is supposedly better and more soluble and absorded into the body easier I have heard)
  • Nadi
    Nadi Member Posts: 619
    Hi Vinn. I finished chemo back in February, radiation in May and will finish Herceptin next Monday. I had terrible joint and muscle pain and was also offered anti depressants. Back in September I started an anti inflammatory diet (basically fresh fruit and vegetables, eggs, meat and very limited dairy) and began taking Tumeric tablets. These have helped tremendously. I have lost 22 kgs and my pain is mostly under control although I find that if I eat anything with processed sugar or drink any alcohol my pain comes back. 
  • ScorpionQueen
    ScorpionQueen Wilton NSW Member Posts: 768
    edited November 2016
    Hi Meg! i am just shy of a month from finishing radiotherapy.....I went to the GP as i had new pain in my hip (quietly freaking out!) ....bone scan ensued and a full blood test as I mentioned about being tired all of the time and feeling out of sorts......Bone scan came back clear (yay! the universe heard my prayers!) but my bloods showed my body was still in fighting mode...all of the markers for inflammation were high as was my liver haemoglobin was low too GP told me that me I had anemia of chromnic illness = body is inflamed still from the cancer.....from  all the treatments = chemo and radiation + not to mention three pretty traumatic surgeries (bilateral mastectomy included) ! It also showed my Osteo Artritis has gone to other places as well.....She prescribed an anti inflamatory, to get it under control quickly, but she also said i could take turmeric....she warned me to be careful with it as taking too much can reek havoc! I am yet to start the turmeric...but have gotten some relief from taking the anti inflamatory.....She told me to do gentle excercise (walking) I can't swim yet as my skin hasn't healed from the rads......She told me to take the Christmas break to recover and continue eating well and staying well hydrated......then we'll talk about getting more active in the New Year..... She told me it will take upto 2 years for me to fully recover....I guess we have to do what we can manage each day to get back on track....and some days (for now) that means being a couch potato! .....and a whole lot of patience!  Wishing you all the very best <3
  • Brenda5
    Brenda5 Burrum Heads, QldMember Posts: 2,418
    I does take a long time for your body to start getting back into a normal rhythm. I am getting through without antidepressants but by gee sometimes I would love to have some. It all passes, just have to be patient. :)