Tuesday, March 13, 2007

The fine print

I went by my local hospital to pick up a copy of the PET/CT scan report yesterday. While I was there I picked up the bone scan and MRI of the brain reports from scans I had in December. The PET scan report didn't have anything like as much information as they do when I have the scans at UNC. That suited me fine because the bottom line was the findings have gone from no definite evidence of . . . to no evidence of. . . I know it's just one word less but it made a difference to me. Also, there was no mention of FDG uptake in lungs, thorax, or thyroid which are places past tests had uptake. The only uptake was in the area of the groin dissection and that was minor. I don't get why two years after surgery I still have uptake but I'm over that and accept it. The MRI of the brain was pretty much identical to the one I had done well over a year ago. Normal, normal, normal. So it's confirmed my brain is normal which in this context is what I want to hear. Now to the scan that bugged me. The bone scan had that extra word put in - no definite evidence of . I'm not worried about the cancer angle since my PET scan was fine. It did bug me that in the finding the bone scan mentioned, a prominent focus of increased uptake in right shoulder and recommended correlation with plain films. Okay, I understand why that wasn't of concern to the oncologist. What bothers me is the severe pain in my right shoulder has been that extra ingredient that has made my pain doctor and other doctors consider that I have all over pain which is not what I have. I have talked myself blue in the face but I know when the shoulder gets added in to the equation, that's when they start writing down diffuse pain, all over pain, and consider fibromyalgia which I don't fit that well from what I've read. I've had MRI scans of the spine and they know I have disc bulges and some narrowing. I have issues with my left groin and leg which can be explained by the groin LND but the right shoulder has been that one extra thing that makes them click ahead to pain all over. By them, I mean in particular the pain doc I see and the pain clinic where I had a consultation. I know I don't have pain all over. I have 4 distinct issues which combine to be a pain in the right shoulder, right side of neck, spine, and below the waist on the left side. The rheumatologist is the only one who has dealt with the right shoulder. He realized I had lost range of motion in my right arm because of the shoulder pain which radiated down that arm and he sent me to P.T. where I regained range of motion but still require meds for the pain. I saw him last week and told him the bone scan was normal because that's all I knew not having seen the actual report. I didn't realize it was normal from an oncology end and I didn't know the radiologist recommended correlation with plain films. Who knows, perhaps the shoulder issue is why my C reactive protein is getting higher. I am sending the rheumatologist a copy of the report and I'm also taking it with me to my 6 month check with the pain doctor I see in April. Hopefully one of them will order an MRI of my shoulder or even just a regular x-ray. I am getting stubborn. I also had some tracer uptake in my spine but it wasn't enough to be included in the findings part and since I've had MRI's of the 3 parts of my spine, I already know about disc bulges and femoral narrowing which may explain that. But the one place where I have extreme pain which has not been looked at closely is the shoulder. I feel like a total whiner to go on and on and on about this ache and pain and that ache and pain. My problem is that my quality of life has been impacted. I take significant amounts of medications each and every day and have done so starting 2 months after my lymph node dissection. It has also made it hard for me to belive that the cancer is a thing of the past. I have this little voice which keeps saying something is severely wrong and until I find more satisfactory answers than I have found so far it is hard for that little voice to realize it's side issues and not related to cancer. Intellectually I know that everything doesn't have to relate to the fact that I am a stage III melanoma patient. I get that. It may be coincidental that I started to have problems a few months after my lymph node dissection. However, I need better answers than I've gotten thus far to be able to tell that voice to shut the hell up and leave me alone. I feel like an ungreatful whiner when I think about all the good people I've gotten to know through the MPIP who have bad scans and active cancer. I'm not ungreatful but I am frustrated. I am very happy to be N.E.D. on my recent P.E.T. scan and I am starting to believe that I really don't have any active cancer. Who knows perhaps finding out what's wrong with my shoulder will be the first step in getting to a point where I don't require all these pain medications. If my shoulder is fixed, I would be able to swim laps. Perhaps this will end up being a good news report and I'll start moving to answers. I wish, however, that I'd picked up the bone scan report in December.


Anonymous said...

You get stubborn. Real stubborn. It is so exciting that you are NED and those are the lucky stars to count to be sure, but if something could make you feel better on a daily basis. I'm with you kid...patooey to docs who don't bother to listen to the end of your sentences. Yep. Get stubborn. And pesky too.
BTW those are some awesome photos!

Anonymous said...

The squeaky wheel gets the oil. You would think they would be amenable to finding the root of your pain, and to getting you tapered off of the pain meds. I think it's great you are not giving up on this point. There is absolutely no reason not to question and probe.

As deep as your melanoma was, and the fact that you are stage 3, gives you every reason to doubt and be concerned when you have ongoing pain. Especially when it's not explainable pain (i.e. - shoulder vs. your groin).

I think an MRI of your shoulder would be in order. A friend of mine was having shoulder pain and thought it might be bursitis. She had an MRI and it turned out to be something going on with her rotator cuff. Maybe you can ask for a referral to an orthopaedic doc.

Glad your pet came back as NED!


Anonymous said...

I agree with all the other comments..continue to be stubborn until someone can ans your shoulder problem sufficiently. Strange thing is I'm hearing of more and more people that have shoulder pain, myself included..mostly it's turning out to be rotator cuff problems..mine is doing much better with pain mediction and in fact, I've stopped taking it so I am almost pain free with only a little twinge here and there. Everytime I get a little ache and pain my first thoughts go to mm even tho that isn't even reasonable in my case. don't give up on this's important in so many ways including your mental state of health. Keep bugging them, do whatever you have to do to get it resolved. sue

Miss Melanoma said...

I have to say to you: what advice would you give Sarah or me or anyone else if we posed the same issues to you. I think you'd make sure we didn't quit advocating for ourselves until we had the help we needed. I wish I could be there for you, be that "bitchy friend" that everyone needs in our circle.
I'm so glad you got the great NED report! Let's celebrate that small victory today and not let it pass without acknowledging how great it is.