Ten Years After!

CoffeePot · June 2015

It's been 10 years since I received my dx. I decided to stop seeing my medical oncologist after 7 yrs because I felt my internist could do anything the onc could do. Plus, I just always felt so sick/helpless when I was there. Last time I saw her, she told me that while I was doing great, I should be on the look out for the tenth year...when a lot of mets occur.

Ten years later, and last week I started having terrible pains that started somewhere in my upper right leg, going down to knee and extending into my hip. I can't sleep because of the pain. My internist ordered x rays and it showed severe arthritis in my knee, hip and inflammation in my quad. She wants me to do physical therapy and has started me on naproxen and cyclobenzarine. The naproxen helps with the pain, but I still wake up with pain at night.

Chances are it is just arthritis...I never knew how painful or debilitating arthritis could be. But should I check with my onc or just wait to see what results I get with therapy? Also, when did most of you stop seeing your onc for check ups? If you have mets, did your onc find them or did your gp? Is there a chance I could have bone mets that don't show up on x rays?

Thanks for your help!

MusicLover · June 2015

I think you should get it checked out with your onc. Bone mets won't show up on xrays only fractures will and why wait for that to happen, that is if it is cancer you are better off finding out sooner then later. I hope that it is not cancer and then you can just move forward.

CoffeePot · June 2015

Thank you, Music Lover, for replying. My internist implied that mets would show up on x ray--so I assumed that since arthritis shows up, then I don't have anything else. Is that wrong? My husband has mild arthritis that hurts in the morning--it is nothing like my pain. Mine is much less in the morning, but the nights are wicked! And the pain meds she gave me helped for the day, but I was up all night. Are there many people who have x rays that show only arthritis while they have mets?

jjski62 · June 2015

I would get looked at by your Onc. Even if X-rays show a fracture, it doesn't show the cause. A bone scan could show activity but not the cause. I believe an MRI would be more useful in determining the cause. I was diagnosed stage IV from the start with back pain and although xray and bone scan showed a fracture, it was not until I received a second MRI that it showed the mets. Meanwhile, I was going to PT for spinal stenosis treatment while the mets were bubbling. I would error on the side of caution and get it thoroughly checked out. Chances are it's just arthritis but I think you will have much more peace of mind getting an all clear with a visit to your Onc.

dlb823 · June 2015

Absolutely agree that for pain as severe as you're reporting -- and assuming it still is, since it's been a few days since you posted this question -- a more definitive test than an x-ray would be prudent. Not to alarm you, but I was assured twice by Urgent Care docs that I didn't have mets after multiple x-rays for painful ribs, originally dx'd as bronchitis, pleurisy and rib inflammation. In my case, there was something else going on that x-rays did not divulge, and that even my onc when he first saw me didn't believe was a problem. It took blood work (an elevated CA27-29 and elevated liver tests) and then a CT scan to get the full picture.

Chances are our original stats and situations were very different, and my experience with x-rays absolutely does not mean you have anything other than arthritis. But pain that awakens you at night is certainly something to report to your onc, if for no other reason than complete peace of mind with the dx you've gotten and tx already RX'd, which I don't think you have at this point.

(((Hugs))) and good luck!

CoffeePot · June 2015

My pain has changed to encompass the entire leg from the hip to the foot, so I suppose it is sciatica. I have called back my internist to tell them, and they told me to continue with the medication and do physical therapy before a mri would be ordered. I have cut back on the medication because it made me too groggy and I have visiting young grandchildren here this week. I know it would be best to call my oncologist, but I'm still not ready. I asked my internist to do bloodwork because just last month I had a kidney stone for the first time ever. I'm just wondering if there was a relationship between calcium in kidney stones and anywhere else, but she said we need to wait. Thank you to everyone who replied, and I will let you know what happens with the therapy.

MusicLover · June 2015

For what you are describing it doesn't sound like cancer, I think you would have more of a pin pointed sort of pain but some times no pain at all. To be on the safe side can you ask for your tumor markers to be checked, this would be easy especially considering that you are having your blood tested. This way you won't have regrets down the road if something does pop up and it will ease your mind when you verify that there is nothing to worry about. Best wishes.

CoffeePot · July 2015

I finally called my oncologist who would agree to see me if she thought the x rays looked suspicious. She has now ordered a bone scan that will be done in 2 weeks and I will see her the end of July. I sleep some nights and some nights I can't sleep because of the pain. I started physical therapy, and I always feel so much worse after therapy. Well, the heat and cold feel good on the muscle in my back, but the exercises make the sciatic pain worse. At night, the pain seems to come from a muscle in my back next to the lower spine. It pulsates sometimes and other times, it just feels like I've been hit there. When it's really bad, I can feel the pulsating pain there and then feel it travel down my leg. Yet, still, during the daytime, I feel good. I just came back from a 3 mile walk. The assistant who does my therapy suggested that I stop walking, but whether it's mets, arthritis, or degenerative discs, it seems exercise would be good, right?

The back x ray showed scoliosis and kyphoscoliosis. I am 61, but still I've never been told that I have scoliosis or kyposcoliosis, Maybe it's caused by degenerative discs...does anyone have any experience with this?

I have googled and found a relationship between kidney stones and hypercalcemia. But really, in these 10 yrs, I've had so many little scares that turned out benign that I'm thinking this is one more thing. It's probably due to my age rather than cancer.

Thanks again for all the support.

Lynnwood1960 · July 2015

coffee pot, I am glad you are going ahead with the bone scan. I went to my PCP for pain in my left arm which was a constant ache that was worse at night. I couldn't even lay on it. X-ray was normal and I was sent for a MRI to rule out what they called a rotator cuff issue. I was shocked to learn that I had widespread bone mets, 7 years after original diagnosis. Do not want to scare you, but it's always better to be safe then sorry.

CoffeePot · July 2015

Yes, thanks for the support and I totally agree. MRI seems to be the gold standard, so now I worry that a bone scan won't pick up problems--but that's just needlessly worrying, right?

Lynnwood1960 · July 2015

Coffeepot, my bone scan picked up everything, then I had a pet scan to make sure it had not spread to organs.Thankfully, it is contained to the bone only

Ten Years After!

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