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    Pokey1975 wrote on moonmaiden's wall

    Haven't had chemo since Feb. 2016. Just about two days ago had another Mri which I was told no cancer, however I am experiencing joint pain in my wrists , shoulders, and knee, I was told that it was arthritis in wrist and knee. . But I too feel like I have RA , or the cancer is back in my joints. I go to Onogolist on the 23rd , ( which will be first meeting with him, because I moved to another state) should I asked to be tested for Lyme disease?

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    • moonmaiden's Avatar
      moonmaiden

      Hi Pokey,
      Ask to be checked for ra and for lyme disease, and any other possible reasons that could be causing joint pain, your onc may possibly tell you to go to gp for that....I just happen to have a gp who tests for lyme if you asked to be tested for ra, they don't necessarily all do that, and I have found unfortunately that I have to ask for tests, no matter how much I complain about joint pain or whatever, they may be making assumptions that it's due to medications, or that I'm just a whiney XXX, and my team just plain doesn't come forth with any thoughts as to what I should be tested for when stuff like that comes up. If you take hormone blockers, ask your onc about that because some hormone blockers cause joint pain, while others are better tolerated. For me the dx of lyme disease came from way out in left field, last thing I was expecting! Get more specific advise from your gp as to why they think you have arthritis, and whether it's Osteoarthritis, which basically means your joints are wearing out, or Rheumatoid Arthritis, which is an immune system disorder. It isn't enough for them to tell you it's arthritis, they should tell you what type and what to do about it, we all worry about cancer mets, and they need to do more to reassure us! Good luck with your new onc and keep us posted, hope you are feeling better soon!

      5 months ago
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    moonmaiden asked a questionBreast Cancer

    What do you think of advertising by breast cancer charities? Do you think it affects your medical team's treatment decisions?

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    • moonmaiden's Avatar
      moonmaiden

      One thing that I've noticed since diagnosis, is that friends and relatives pay way more attention to anything with a pink ribbon on it, one of my friends gave me so much pink ribbon stuff that I felt like saying "Breast cancer is something I have, not something I am", but I didn't because I understood that he was just trying to be supportive, sometimes you just have to smile and accept something gracefully, then put it in a drawer or on ebay or something. That being the case, that my friends and relatives have reacted that way, maybe they are sensitized to pick up on ads about breast cancer causes? Maybe workers in the industry are sensitized to it as well? Of course workers in the industry know what it really looks like, but that may be all the more reason for them to dwell on the "super patients". One of the reasons my former onc is my former onc, is because he wouldn't admit to side effects, even to a point of refusing to note them on my records unless he could chalk it up to mental illness on my part, he tried to discourage me from even looking at my records, and gee thanks, destroyed my divorce case by fudging my records. I think that was to make his stats look better though, I got sent to a for profit facility instead of the non profit I should have been sent to, and carry a great deal of rage toward my surgeon for ignoring what I was telling her about financial issues and sending me there anyway. If it isn't in the records then my former onc can record it as more successful, and if he doesn't want to acknowledge the impact of it, then he doesn't have to treat it either, for him it doesn't exist, and I'm just mental. *sigh....* I have acquired a great deal of mistrust toward the cancer industry, and the medical profession in general.

      6 months ago
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      moonmaiden

      I find it interesting that the majority of responses do seem to be from patients who feel pressure to be super patients.....

      6 months ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      moonmaiden, I know exactly what you are talking about. When I was first diagnosed and going through treatment, it seemed that was all one of my sisters could think of. I appreciate her, her husband, and even their dog running in a race for me and her buying me a charm for Christmas that year; however, I kind of wished she'd waited until I was out of active treatment first. The ribbons don't bother me as much now that I am nearly 3 years out of active care; I guess because I was able to distance myself from cancer a little. I have a bracelet with the ribbon on it that I now wear as not only something that goes with my pink clothes but is a badge of courage since I survived an aggressive cancer and am doing all right. I'm not a super patient and never claim to be one; I'm just happy to be a normal everyday lady who overcame the worst of a cancer battle, loves her friends and family, and is happy in a close knit church. I am so sorry too for what your doc did to you; you have enough on your plate, and you need your medical staff to take you seriously. It's your body, and you live with it 24/7; they only probe and prod and nook and cranny it for 10 minutes and go to the next patient. They don't lie down with the side effects at night, and they don't rise with them in the morning. This is why I strongly feel that advocates and therapists need to be added to the oncology team; we are more than just containers for the cancer that need the physical tumor gone; we're human beings who are traumatized by the strange and unpleasant things we're putting our entire bodies through just to get well. It often feels like when you were back in grade school when one child did the crime and wouldn't confess, so the teacher punished everybody. The children who did nothing wrong are suffering needlessly, just like our healthy cells have been doing. My mother once said it's rotten how the treatment feels worse than the disease. HUGS and God bless!

      6 months ago
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