One step forward...then two steps back

pickle

I don't know where to post anymore so I am hoping it's okay to post here. I am 50 and a little over 2 years post chemo. 2 years of tamox and then the onc switched me Aromasin. For a long time I stopped thinking about BC so much but now I feel like I am going backwards. It's on my mind all the time again. I am having alot of discomfort in my left hip especially when I go to bed. My DH says  I moan and groan everytime I move. My feet, hands, knees ache and cramp a lot...it is really wearing me down. I have no energy and don't feel like getting out much. My blood work is good except low B12. doc thinks the aches and fatigue are aromasin but of course in the back of mind I worry that the hip discomfort may me mets.
Does anyone else 2 or more years past treatment still feel like they think/worry about cancer too much again? 

Beth

Edited for sp 

eileenr56

I believe that is a symptom of the Aromasin.  Have you checked the Hormone therapy section.  Lots of people there can help with that.  I'm on tamoxifen, but no side effects except my hair seems to be thinning.

Good luck.

pickle

Thanks Eileen. I did post there yesterday. I posted here to see if other women in my age group start thinking about cancer more again even though I hadn't dwelled on it for a long time until recently. I'm a bit stuck I guess and need to snap out of it

pitanga

It took me until a year after hitting the 5 year milestone to really put the past behind me!

krcll

Pickle-I still think about BC all the time. Way too much. Though I have to say, it does go in waves. If I'm busy and happy, I won't think about it as much. But suddenly I can obsess about some "symptom" I have and I am SURE it is mets. I was in a hut for a week where I know there are lots of insects. But when I got a bunch of bites on my chest, I couldn't think of anything else but skin mets and what they looked like. I researched for days on the internet. Then I got super busy and forgot about it. Today I looked and they had disappeared.

Your hands, feet and knees aching sounds exactly like the SE's from an AI. I am on Femara and have to hobble my way to the bathroom in the morning. It does get better after about 15 minutes, but comes back anytime I have been sitting down for awhile. I have aching in my feet and knees and have heard that others have aching in their hands. I don't have cramping so there I don't know if that is AI related. I have heard that mets don't show up on both sides at the same time, so if you have pain in both knees it is unlikely to be mets. 

Have you checked the AI thread to see if hip pain could be a symptom? Since it is only on one side, you probably want to talk to an onc about it. They say with bone pain, that you should see an onc if it keeps you awake at night, if it gets worse and if it hurts whether you are moving or not. That said, I am sure there are lots of other reasons for pain that fall in those categories as well. 

As for thinking about BC too much, I think we are all different. Sometimes I think that underneath it all I am afraid to stop thinking about it, because if I do, I think it will come back. Not logical, but there you are....

pitanga

I also developed joint pain from AI's, it is a well known side effect. It has gotten better since my onc switched me from Arimidex to Aromasin. There are entire threads about it in the Hormone Therapy forum.

I have arthritis in one hip that I never knew about until just before starting AIs, when it got so painful that I could barely walk. I was worried that it was a metastasis but my onc told me that bone mets rarely occur in joints. The MRI confirmed he was right, it was just arthritis. After a few months on anti-inflammatories the pain got better. The joint is still stiff but not painful.

elimar86861

What you mention is one thing that really stinks about the "new normal."  Can no longer ignore things for months at a time and wait for them to go away by themselves as I was used to doing.  We do have to be vigilant about aches we have never had before.  Definitely mention your concerns to your doc; just remember, mentioning "bone" and "pain" in the same sentence will usually get you some kind of scan to rule out cancer-y causes.

The knees and hip can easily be osteoarthritis at your age, or Aromasin may be making the joints achy.  The hands and feet can be neuropathic pain, like some get after having chemo.   If you are so uncomfortable that you are moaning, you probably are not getting a good night's rest, which in turn seems to make people less tolerent to their pain.  I know their are prescription drugs to help with pain and sleep, or you might try to read up on the natural remedies to see if you can get some relief.

I'm two years out, and don't think of my B/C that much; but still get nervous when I get any new symptom or on the days I have to have mammo.  We are kind of stuck with the anxiety now.

Shrek4

Aromasin can CAUSE osteoarthritis.

rubyjune40

I have found myself back into the fear that the cancer is back again. I have this pain and that pain and suddenly it is all because the cancer is back. I dont ever want to think it wont kill me. I was postive I was done with this after lumpectomy, chemo and rads. Onc, says just know that you have done everything you can to lower your risk and I went on thinking thank god this cancer is behind me. I went back to work, ate right, exercised, all the things they say to do. 3 years out oh my god it is back!!! I wass blind sided. tests come back and I have a new primary. Not the same TN now its ER/PR + even though it was the same breast and same area.  ONC says to me well you probably have a gene that has not been discovered yet, since I BRCA1 &2 - .WTF!! I am worrying to much about it, I go back to the ONC on Tuesday and I always get filled with dread the week leading up to these visits. Probably more so since he wanted to see me in 3 months instead of the 6 months, I had been on. Thanks for the thread, It feels great to share and know I am not alone in this.