Pet Scan Negative- Need Advice Desperately - 1242057

akgirl79
Posts:2

I am so LOST!
A little history.. In Feb 2011 I had elevated proteins and globulins on my lab test sent to a specialist who ran an SPEP and it was negative. In July I weighed 179 and today I weigh 138 with no appetite. I have had a small lipoma in my lower back for awhile now in October 2011 I started having very localized pain in my lower back while unconsciously rubbing the area I discovered the top f my hip bone has a solid mass on it; it has grown and is causing considerable pain. Repeat labs in December show an elevated creatinine and globulin elevation remains. Sent for CT scan to look at mass; it did not show up at all a small hematoma showed in the general area only. I have in the last wo months become very tired all the time, increasing lower back pelvic girdle pain (to the point of requiring narcotics to take the edge off and it's waking me up frequently through the night), occasional night sweats, a consistent low grade temperature 99.9 to 100.1. My dr finally decided to send me to a bone marrow specialist but did ask for a Pet scan first; the scan was negative. I feel like I am dying :-( I ad a hysterectomy in 2006 and am ony 32 years old. No pre-cursor injury either. No history of back pain or back injury. It's more pelvic girdle then back pain. I see te oncologist/bone marrow specialist on Tuesday.

Any ideas? Suggestions? Having had a negative pet scan means no chance this large mass (fist sized, solid, no movement, and visible as well as palpable) and pain s not cancer right?

Thank you.

Forums

Dr West
Posts: 4735

I'm sorry to say that I don't think we can provide much help for someone who doesn't actually have a diagnosis of cancer. It certainly sounds like something is going on, but I do think that a negative PET scan is pretty reassuring.

Everything is predicated on an actual diagnosis, and I certainly hope you get that soon. It sounds like your doctor is pursuing a very thorough workup to get there.

-Dr. West

blue skies
Posts: 69

This is the most difficult time in anyone's medical journey...the not knowing. But guessing and worrying about the wrong diagnosis is very debilitating. Try to be patient as your medical team works through and eliminates the possible causes of your complicated work up and hope for the best, most treatable option...or a diagnosis of "nothing to see here right now." That would be GREAT and seems to be within the realm of possibilities. We'll all be here waiting with you, ready to offer support and ideas if you find you need us in the next days and weeks. And we'll all do a "happy dance" if you find out this was a false alarm.