Sore Joints

Jani1Jani1 Member Posts: 4
edited October 1 in Newly diagnosed
Hi I was diagnosed in August 2017 at 54 after having pain in my left breast occurring between mammograms. My TNBC tumour was stage 1 grade 3   1.7cm and removed, and then had a reexicision to clear margins. 3 lymph nodes were also removed and clear. I began my first of 4 ac chemos and was really unwell with stomach issues-gastritis.  A week later I lost my balance and fell dislocating and fracturing my shoulder also hitting my head passing out. Ambulance to hospital neck brace precaution, shoulder relocation, c.t., xray and MRI. Discharged after 3 nights. Oncologist delayed chemo for 6 weeks until I recovered and then swapped me to Taxol weekly for 12 weeks and then finished with 3  AC chemos last one in April. 5 weeks of radiotherapy followed finishing June. I have taken a few months to recover. My joints are really sore especially after sitting in one position for 15mins or more. The joint pain moves around to different joints so I am wondering whether chemo has brought on arthritis. I have started a gym program and walk most days to keep my joints moving. Has anyone else  been affected with joint issues following chemo? Also I am not having PET scans at all as the oncologist says there is no advantage when you are TNBC so he discharged me from his care as soon as chemo finished. I am just under the the care of my breast surgeon. The oncologist says only 1% chance of cancer returning to breast. Apparently I will know if cancer has returned anywhere else because I will be in alot of pain and it will be aggressive so chemo will not have any affect next time. Has anyone else been told this?
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Comments

  • AfraserAfraser MelbourneMember Posts: 1,833
    Bad luck, you don't need a fall
    and injury after bc diagnosis! Oncologists often have different preferred processes but I still see mine once a year (6 years on), possible partly because I am still on hormonal therapy. Not everyone sees their oncologist at this stage but as he laughingly says, my breast surgeon (I also see him annually) is only interested in my breast(s)! My oncologist gives me the once over plus blood tests, and is also monitoring my hormonal treatment. I haven't had chemo twice but I know people who have so your oncologist may mean not the same regimen twice. Joint pain is not uncommon with hormone therapy but it's also possible to be something quite unrelated to cancer or treatment. Maybe your GP can advise further? Best wishes
  • arpiearpie Mid North Coast, NSWMember Posts: 1,485
    OMG!  You've been thru so much already! @Jani1   Shoulder injuries are the pits!! I've had surgery/treatment on both!  Such a shame you had the fall & all the injuries on top of your surgery  :(  Great that your nodes were clear - that's always a bonus. 

    Well done on going to the gym - that will at least keep everything 'moving' - with the old theory - if you don't use it, you lose it.  Yes, most hormone treatment causes some sort of joint pain - I am on Exemestane and last night my left foot was KILLING me!  Didn't matter what position it was in or even if I had it hanging out the side of the  bed with no contact with mattress or bedding!  grrrr  It is fine this morning!  (Thank GOD!)

    Oh dear .... I think your Onc may have been extremely insensitive in the way he advised you of re the getting of any other cancers in the future & the 'possible' lack of treatment available!  :(   That could muck with MY brain, so can only imagine how you are feeling.  I'd be concerned for every ache & pain I got (which most BC sufferers do anyway!)   :(   Improvements in treatment are ongoing - & who knows WHAT will be a available for us in the future - even on stuff that is currently considered 'untreatable'. 

    I wonder if you could get another Onc's opinion to ease your mind a bit and get a more understandable explanation of your condition & treatment?  

    I will be seeing my Onc every 3 months (since finishing radiation earlier this year) & it will drop off to 6 monthly or yearly from next year.  I am also seeing my Rad Onc at the end of this year & guess that will drop off next year & have yearly visits with the specialist for a while yet, every Jan.

    When do you see your specialist next?  Maybe write down some questions re what the Onc said to you (did you record it?)  Mental well being is just as important as physical well being - and he may be dismayed if his Onc is frightening his patients with comments like that!   (Or even email them to his office for a written reply if you aren't seeing him soon?) 

    All the best - I hope the aches & pains settle down.  Are you able to take Panadol Osteo or similar?  I take an anti inflam called Indocid (1 a day) and it helps with mine - but check with your GP before trying anything new.  xx
  • iserbrowniserbrown Regional VictoriaMember Posts: 2,766
    @Jani1 ;

    Here's a link from the BCNA website detailing your type of breast cancer, Triple Negative

    https://www.bcna.org.au/understanding-breast-cancer/types-of-breast-cancer/triple-negative-breast-cancer/

    If you haven't seen it already hopefully it will give you a better understanding and also gives you an inroad to the BCNA website to explore further.

    Take care
  • Blossom1961Blossom1961 Geelong, VicMember Posts: 249
    Definitely get a second opinion. I have spoken to MANY other patients who have had a second treatment of chemo. Also, My surgeon told me I would be seeing him yearly until I get sick of him so he could follow things through. I am stage 2b, Her2+, hormone -ve, with lymph nodes involved. I had AC, now on taxol and herceptin, will have a mastectomy and lymph nodes removal after the taxol. 
  • smokie08smokie08 AdelaideMember Posts: 115
    Hi @jani1 I also  TN mine was stage 2b grade 3 2.5cm in left breast with at least 2 lymph  involved . My  oncologist  said to me at the start of treatment the aim of the treatment was survival  (which I intend to do ) there was no mention of recurring cancer . At the end of chemo when he discharged me he told me to now get on with life.  The only mention of a % was from radio oncologist  and that was there was a 15 % chance of it coming back.  So I look at it as a 85% chance of it not returning.  I was never told anything about knowing it had returned because of pain  and there was nothing said about not having more chemo.  I am now under the breast surgeon and I see him every 3 months at the moment  as they are keeping an eye on something that is possibly just scar tissue but because of the triple negative  they want to be sure.  Every little ache and pain i get now sends a shiver but off i go to the gp and it's usually nothing  (apart from  a cracked rib from coughing ) my suggestion is to live life and not worry too much about  anything if it happens you will find a way of dealing with it . Take care  
  • Jani1Jani1 Member Posts: 4
    Thanks  for your comments Arpie. I am not on hormone treatment due to having Triple Negative Receptors so can't use this as a reason for pain in joints. Yes I will ask GP when she is back from holiday. I have mentioned what oncologist told me to my breast surgeon and he agreed with insensitivity. I take panadol osteo as my stomach can't tolerate ibrufen. Thanks again for your reply.
  • TripleNegMamaTripleNegMama Member Posts: 32
    Oh what a lot of BS, unless your cancer is already at stage 4 then I'd say throw everything at it.  If you get a local/regional recurrence a PET will find it (no medicare won't pay and you will have to pay if you want it) and yes you will then only have a 50% chance to beat it and it could still recur and go to stage 4 - but shit it's worth a try to deal with it.  I have a very resistant TNBC and no they couldn't cure mine - but hell the PET found it when it was just at local/regional before it went to mets anywhere else and we gave it a shot, turns out that mine is a really nasty .........  and nothing was probably going to pull it up but it was certainly worth trying.  If you leave having a PET done until medicare will fund then thats at stage 4 and then nothing is going to stop it just maybe slow it down.  I'd be asking for a second opinion and asking for regular PET scans if you can afford them.
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,220

    Taxol and Docetaxel are notoriously hard on joints and ligaments, mine are still troublesome two years after I finished my second round of chemo. My first treatment 12 years ago (AC) didn't have the same effect, so I was a bit surprised at how crippling the damage can be.

     I find getting out of the car after even shortish trips particularly challenging. And embarrassing--the staggering and hobbling is unavoidable. Once I get going I loosen up and can walk for kms or do a serious exercise session without too much pain, but once I stop I seize up again. It's very frustrating. I've got the added joy of hormone treatment now, but even after a break from those delightful drugs, the joint pain lingered. Mind you, I wasn't in mint condition before the shit hit the fan again, so perhaps my expectations of total recovery are a bit ambitious.

    Follow up care varies from person to person. My beast and plastic surgeons have told me there is no reason for them to see me unless something else goes wrong. I see my oncologist intermittently, mainly if I need to talk to him about my medications. He hasn't recommended any scans and has told me I'm likely to know if anything is turning nasty. My extremely experienced and sensible GP is my go-to person and I see her every three months so we can keep a good record of how I'm coping. She has ordered a bone scan for me when I had trouble with my back and hip (panic stations!) and the occasional blood test to monitor liver function etc with the view that if we find anything sinister the oncologist will take over again.

    The advice to listen to your body is probably the best anyone can give you, the main thing is to watch for changes which don't vary--pain that is constant and doesn't move around, for example. Repeated scans are costly and are not generally very good for you. I understand your concerns, but you have to think about when you would stop having them. Two years? Three? Five? Many of those decisions are personal and related to how stressful you find either the lack of knowledge or the test themselves. Good luck,  Mxx

  • primekprimek Broken HillMember Posts: 4,602
    Yes yes yes. Joint aches for about 6 months at least. I started fish oil (the max dose for joint pain)  and regular pandol osteo. With weight loss and continuing gentle exercise I dropped the panadol and by 12 months I stopped the fish oil (as I was having dental work and found I didn't need it anymore). Hope it improves in time for you. Kath x
  • Jani1Jani1 Member Posts: 4
    Thanks Smokie08 just what I needed to hear. Heading to Bali in 2 weeks so that should help my stress levels. A trip to the GP before I go I think to settle my mind.
  • Jani1Jani1 Member Posts: 4
    Glad to hear it is relatively 'normal' and I am not the only one with joint issues thanks for your post Primek and all others.😁
  • kmakmkmakm MelbourneMember Posts: 5,398
    I know it's late but if anyone could help me out I'd appreciate it. I'm going to bed but my ankle pain from Letrozole is the worst it's ever been. Panadol Osteo isn't working. I've got some drugs left over from the various operations I've had since last December. What would be the best to knock the pain on its head so I can sleep: a paracetemol & codeine combo, Tramadol, Oxycodone 5mg (aka Endone), Targin, and an anti-inflammatory diclofenac. Which would be best do you reckon? What's worked for you?
  • SisterSister Adelaide Hills, SAMember Posts: 3,022
    @kmakm - I wish I had seen this last night.  Codeine for me is always the best - the others don't do anything.  But a bit late now... I do hope you got some sleep.
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