Extra vigilant or just neurotic?

Options
Lillymillie
Lillymillie Member Posts: 192
edited June 2014 in Stage III Breast Cancer

Hi Ladies,

This probably isn't the correct place to post but because I'm stage 3 I just wanted to hear if you had similar experiences. I'm at the scary point where I have finished active treatment and have been released back into the wild!

I was told I'm high risk due to my lymph node involvement tumor size and so I suppose I'm extra vigilant or maybe just nuerotic. 

Finished chemo in July, have had better summers I can tell you. Lots of bone pain in my lower spine due to the Nulasta shots during chemo but that all eased. Had persistent bad back pain during rads but onc put that down to the awkward positions I had to lie still in, he was right and it eased up after I finished. MRI, ct and pet scans all clear for mets in March. Had a weird tingling which got sore at night in my non affected armpit and was convinced I could feel a lump, got that investigated and the lymph node showed up on the ultrasound and looked normal (whatever that looks like) but the did find a lump and after biopsy it turned out to be a breast mouse (don't know the medical name). BS suggested a double recon as my remaining breast is dense and lumpy. Been on tamoxifen since August. Have had lower and middle back pain and weird hip pains which seemed to start up around that time. Right hip has been paining on and off but now seems to be a bit more persistent. I started doing 15 mins a day lightly on cross trainer, not sure if this might be it. My Onc keeps saying that tamoxifen doesn't cause joint pain and that it's just normal aches and pains, I've never had them before this so how is that normal. I have read here that a lot of people on tamoxifen have hip and joint pain but they are also the same symptoms for mets. I'm 36 (feel about 80) so not sure it is old age just yet. I've been told that it takes a year for your body to recover from chemo, maybe this is it? I suppose I'm looking for someone to say this is all normal. Aches and pains are driving me mad.

· Share on FacebookShare on Twitter

Comments

  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited October 2012

    Perhaps your Onc has never taken Tamoxifen? Because it sure can cause those joint aches, as can recovering fron chemo. Both those treatments can do a job on your cartilage.

    If you are truly worried, talk to your Onc about running blood tests for Tumor Markers every six months or so. Just to keep an eye on things.

    And, if your pain persists for more than two weeks, at the same or increasing intensity, run like a bunny to the Onc, and make a fuss until you are scanned.

    I'd also recommend Celebrex for ongoing joint pain. It's been working for me, and I do weekly Taxol.

    Staying sane 4 hours at a time,

    Jennifer

    · Share on FacebookShare on Twitter
  • Rose_d
    Rose_d Member Posts: 144
    edited October 2012

    Hi there,



    I am on roughly the same timeframe (finished chemo in July and have 7 more rads to go, started tamoxifen in September). I feel exactly the same way. I am 40 and I feel 80. My legs and hips ache A LOT. I've started to exercise again which makes it much worse but I'm hoping it is actually going to help me.



    I really think (hope) it's the chemo and it's just taking a while. My doc said up to a year as well. I'm really getting tired of feeling this way and as I approach the end of my treatment it's starting to get me down. I think I was hoping I would be able to keep my head down, get through the mess of treatment and then bounce right back. Instead I feel like I've lost 40 years and need to lose 20 pounds.



    I think we need to be patient and realize that we've put ourselves through the wringer this year but it's hard not to feel like we deserve to start feeling better soon!



    Rose

    · Share on FacebookShare on Twitter
  • Celtic_Spirit
    Celtic_Spirit Member Posts: 748
    edited October 2012

    Okay, I'll be the one to tell you it's normal. Smile

    I had plenty of post-chemo aches and pains, and tamoxifen made them worse. I'm on arimidex now, and yowza, do I get aches and pains! And they float around...sometimes in my feet, my shins, my lower back, my hands, even my neck. I've learned to deal with it and not let the pain get in the way of leading a full, active life.

    · Share on FacebookShare on Twitter
  • Elizabeth1959
    Elizabeth1959 Member Posts: 346
    edited October 2012

    I have aches and pains all the time.  I am ALWAYS looking over my shoulder worried that I have metasteses.  I don't know if it's letrozole or if I used to not worry about mets when I had a random pain.  Time is helping, but only a little bit.  I do find that exercise helps with stiffness and pains.

    Elizabeth

    · Share on FacebookShare on Twitter
  • Bugs
    Bugs Member Posts: 1,719
    edited October 2012

    SO normal to have aches and pains!!  Tamox, leftover side effects from chemo (I dont care what they say...it takes MONTHS for those after effects to ease up) Exercise does help, so keep up the good work :)  

    · Share on FacebookShare on Twitter
  • Momine
    Momine Member Posts: 7,859
    edited October 2012

    Bugs, yes, the after effects of treatment can be quite persistent. I thought it was just me, but even my doc said so the other day when I saw him. 

    · Share on FacebookShare on Twitter
  • Lillymillie
    Lillymillie Member Posts: 192
    edited October 2012

    Thank you for making me feel normal! It's hard trying to move forward when I'm experiencing all kinds of pains, naively thought they would be gone by now. I presumed they were talking about energy levels taking a year to return to normal but i suppose the chemo was pretty strong stuff. Jennifer I'm in the uk and as far as I know they don't use tumor markers. It would be reassuring if they did but they just rely on me to report anything strange, not very comforting eh? I'm worried I'll be wanting scans every other week. I have first appointment since rads next week with BS so will let her know my ailments.

    · Share on FacebookShare on Twitter
  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited October 2012

    Oh yeah....I'm with ya...but I'm now a year past active treatment and still adjusting to what I'm suppose to be and how I'm suppose to feel. Just sending you a cyber "fist bump" to let you know I'm with ya.

    · Share on FacebookShare on Twitter
  • MaxineO
    MaxineO Member Posts: 555
    edited October 2012

    Tamoxifen most definitely causes joint pain! I don't buy that "getting old" line. One year of aging does not lead to severe joint pain, but tamoxifen does.



    I am more than a year out of treatment, and while people told me it would take a long time to feel back to my self, I didn't believe them. But honestly, it was probably close to a year before I felt back to "normal". That said, the tamoxifen is brutal on my knees and feet joints. Do what you can to relieve the pain...wear sneakers, take ibuprofen. I asked my onc what bone mets would feel like, since I get the same concerns, and she said it is more of a deep pain that just doesn't go away.



    Best to you.

    · Share on FacebookShare on Twitter
  • clariceak
    clariceak Member Posts: 752
    edited October 2012

    I think it is normal aches and pains from treatment, and I believe it may seem more acute to you because you are so young!  I was 49 when I was dxed so I was already feeling some joint pain etc from getting older.  I still felt like aged 30 years in month after starting Femera. 

    One little test that might help you feel better.  Do you notice any difference when the weather is starting to change?

    · Share on FacebookShare on Twitter
  • Lillymillie
    Lillymillie Member Posts: 192
    edited October 2012

    Saw my breast surgeon on Monday for the first time since surgery follow up. Explained to her about my hip and back pain. She asked me to show her where it was and then started to explain the muscles in that area and how chemo and being inactive can affect them. I saw the physio who had a look at me and gave me exercises. The most helpful being where you sit on the edge of a chair and put one leg in a semi lotus position where your foot should be resting on top on the opposite thigh. Whilst holding your foot in position gently rock forward. If you feel it's very sore that's one of your problems! repeating this excerise has for now really helped my hip pain. This and some other stretches really helped. Whilst I had been keeping active I wasn't using these muscles. I'm still having aches and pains but certainly not as bad. BS said when I go back to her with my recon decision in a few weeks we investigate further with scans if I'm still having problems there. She said it difficult to learn trust your body again after all this...ain't that the truth!

    · Share on FacebookShare on Twitter
  • Denise-G
    Denise-G Member Posts: 1,777
    edited October 2012

    I finished chemo in May and still having aches and pains.  Started Arimidex and it is so fun getting out of a chair.  I feel 90 until I stretch a little.  I am going to see a Physical Therapist to get some help with stretches as that seems to help the most.  Lillymillie, thanks for sharing the one your BS taught you.

    · Share on FacebookShare on Twitter
  • Momine
    Momine Member Posts: 7,859
    edited October 2012

    As for joint pain, I have had runner's knee on and off all my life and a seriously bad back  since I was a young teen, so I was long used to joint pain before starting femara. 

    I definitely have additional pain from the treatment, especially in the feet. Every tiny little joint in my feet aches at times, and it is very annoying. Also hips and knees ache like I am 95 when I get up from sitting down, for example. 

    However, I find that the more I walk, move and exercise, the less I hurt. 

    · Share on FacebookShare on Twitter
  • jmf424
    jmf424 Member Posts: 17
    edited October 2012

    Ugh! I am 47 and feel 80! So frustrating! Still doing rads now but was hoping once chemo was done, I would start to feel better. My hair, eyelashes, and eyebrows are all growing so I think I am starting to look a bit better but I am feeling horrible! The neuropathy from Taxol is horrendous! Hope today is a better day!

    · Share on FacebookShare on Twitter
  • CherylinOhio
    CherylinOhio Member Posts: 623
    edited October 2012

    Hello, I am almost one year out from active treatment, last rad treatment was last november.  The nulasta made me feel like crap!! Hated that!  I have right leg pain between my knee and ankle and right hip pain, which I assume is from tammy, that is what onc says and that is what the description of a side effect of tamoxifin says it will do.  My left side no pain at all, ever.  My right breast was effected so I assume the meds are targeting the weaker side of my body??  I do have on and off low back pain and neck pain but I have always had that. I was in a rear end collision about 15 years ago and hurt my neck and shoulder, I have been told that tamoxifen will target areas that have been injured and make them ache more. Trust me I am a hypocondriac, that is what my onc calls me too!! Hey better safe than sorry!! Hang in there, it does get a little better each day. We will probably never fully recover from the assault of bc treatments BUT if I had to do it again to keep bc at bay I will do it!!  ((HUGS))

    · Share on FacebookShare on Twitter

Categories