Aches & Pains: Hormone SE or mets?

elise24601
elise24601 Member Posts: 155
edited July 2017 in Hormonal Therapy - Before, During, and After

Here I am again worrying about mets (if you see my dx, you will know that in my case it's fairly likely).

I started Lupron in early May, no SEs. Started Arimidex a month later, since then have very manageable hot flashes but also constant mild to moderate pain in my lower ribs and my mid-back. I see online that this pain could be attributed to the medication (listed as a common SE), however it seems more typical from the boards that women have pain in the feet, hands, and knees. This makes me worry my pain could be bone mets instead! I'm too scared to mention to my onc, he will order a scan and with my PTSD I cannot deal.

I guess I'm posting to see if others on an AI have experienced consistent aches or pain in the torso - back, sides, ribcage - with no sign of recurrence.

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Comments

  • deevee903
    deevee903 Member Posts: 24
    edited July 2017

    elise I worry about the same thing. I have so many aches and pains (hips, back, knees) that I attribute to the Arimidex.....so how are we supposed to know if we have bone pain? (mets) Never ending worry.

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  • Falconer
    Falconer Member Posts: 1,192
    edited July 2017
    Have you tried physical therapy or any other treatments for the pain? Your body holds so much tension everywhere following surgery and chemo and rads. I have a PT who is certified to work with BC patients. I'm leaning on her to help me through my neck and head pain. I did have a CAT scan of my brain (they wouldn't do an MRI bc of the TE) and it showed nothing. After a session of PT I can't believe how much freer my body is.
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  • Mommato3
    Mommato3 Member Posts: 633
    edited July 2017

    It is tough sometimes to determine if the aches and pains from Arimidex are something we should be more concerned about. I have had aches in my mid and lower back along with my lower ribcage. There are times it could be from lifting heavier things or being on my feet a long time or it's just the Arimidex that affects me more some days than others. I've had two bone scans and all have been clear. My guess is that it's from the Arimidex but you definitely need to discuss it with your MO. S/he needs to know what you're experiencing. There are other options for you if it gets too bad.

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  • tuckersmimi
    tuckersmimi Member Posts: 21
    edited July 2017

    I too have pain in my ribs, hips, back, as well as knees, hands, and feet.
    After sitting for long periods esp., I am so stiff that it takes a second or two for me to even start walking.
    My rule of thumb is, if the pain moves from place to place after a week or 10 days then it`s side effects from Arimidex or something that I have done to cause it.
    If it last then I would definitely discuss it with my doctor.

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited July 2017

    Scared to ask for a scan lest it reveal mets? You might literally be scaring yourself to death by hiding your head in the sand. If you don’t have mets, great—not every AI patient gets aches in the same joints as everyone else. And if you do have mets, you are shortening your life by not discovering them and arresting or slowing their progress. It’s like women who’ve never had a mammo or a Pap smear because they’re afraid the doctors will find cancer.

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  • kae_md99
    kae_md99 Member Posts: 621
    edited July 2017

    i am on lupron, my aches and pains and hot flashes showed up on my second month. all my joints hurt.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2017

    Isn't the rule of thumb that if you have pain in the same place for longer than two weeks that you call your MO? Scans aren't fun, but a bone scan could be helpful. I'm with Chi Sandy to some extent. Knowledge is power. If I have mets, I'd rather know about them now rather than when they're affecting major organs (lungs, liver, brain, etc.).

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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2017

    If scans are traumatic for you, please don't forget that you can ask for sedation.

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  • elise24601
    elise24601 Member Posts: 155
    edited July 2017

    chisandy - I see what you mean, but isn't the life expectancy for stage 4 pretty much the same no matter when/where they find it? Terminal (3-5 years) once it leaves the breast and local nodes.

    I know that some ladies have lived longer but they are the outliers according to the statistics. Since I am young with BRCA1, unlikely I'd be one of the lucky ones.


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  • dtad
    dtad Member Posts: 2,323
    edited July 2017

    elise...yes that is the present theory. Its why they don't do routine scans to check for recurrence. They say that symptoms and a positive finding on a scan occur at the same time. Also that it does not change survival rates. Pretty scary I know. We all have to find a way to deal with the fear of recurrence and just go about living. My theory is not to waste the time worrying about if or when it happens. Good luck to all

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited July 2017

    Elise I believe if you catch it early that you have a good chance to stop it ir slow it down. Its easier to fight it before it gets everywhere. I have to believe that my fighting it is giving me more time. There are several metsters on here who have achieved ned status and are fighting to keep that status. Gentle hugs and if you have a pain in same area that lasts for 2 to 3 weeks then its worth mentioning to mo

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