Back On the Testing Track

[Judy M.]

Have had a nice and much needed 3 month break since first round treatments ended. Now it's back to the testing/waiting routine to find out exactly where I'm at in the journey. And this has brought up more questions. Have had some pain in my left hip. Messaged Oncologist to see if I should be concerned since it didn't seem to be going away. I really wasn't at first since I do repetitive type exercise 5 or 6 days a week and had experienced a frozen shoulder a few years back and the pain seemed similar. Oncologist ordered immediate X-ray. Came back normal other than slight bone spurs. Now he wants a bone scan. I was supposed to be scheduled for a P. E. T. scan anyway which for some reason wasn't getting done. I questioned whether the P. E. T. scan wouldn't show any bone mets making the bone scan unnecessary. The nurse who had called me finally agreed that the P. E. T. scan would show the bone Mets if there are any, but insisted they want to have both since I've had bone pain. As it stands now I'm scheduled for bone scan this Friday and P. E. T. scan next Monday. Ask if it was okay to have both so close together and was told there needed to be 48 hours between them. This will be my first bone scan and a friend who is a survivor and whom I had talked to last year had a terrible reaction to a bone scan she'd had previously. So, my question is whether any of you can tell me why the doctor wants both tests and if those who've had a bone scan can give me some idea what to expect. I'm hoping not everyone has had problems with them. Thanks. 

Judy McKay

[Tom Galli]

Judy,

Good to hear from you again and happy you are finished with first line treatment.  I've had both bone and PET scans and in close proximity.  Why did your oncologist order both and in close proximity?  I can only guess but my guess is aided by Mayo Clinic information on why bone scans are performed.  A bone scan can disclose many conditions that might cause pain while a PET scan can only show metastatic disease.  So, in your case both may be a good idea.

I had some stomach unpleasantness from the bone scan contrast media but it resolved very quickly. The text is kind of like a CT scan with contrast.  The bone scan contrast is injected using an IV and it took about 30 minutes to complete.  My stomach problems started when I sat up after the test was completed and resolved in about 15 minutes.  I hope this helps.

Stay the course.

Tom

[Jazzbo]

Hi Judy, I’ve had both and I agree with Tom on the bone scan causing a little nausea but went away almost immediately. Mine was done 18 years ago. So I guess not much has changed. I also had one of the first pet scans done in Massachusetts. I had already been through chemo , radiation and about 4 months after my surgery on my right lung to remove my two lower lobes. 

I was warned of false positives but I said let me try it and see if I have any revelations from it. I had the test. My results showed a high activity level in my left lung. I saw a new radiologist and she said that judging from the activity they would have to radiate my left lung and try not to hit the spot I was already radiated on my right side. But they would hit my heart some because they couldn’t do it from any other angle. Are you ok proceeding? Wellll, yes, I’ve followed what you doctors have told me to this point. The next week I was scheduled for the new tattoos and all pre treatment things. I went and it just so happened to be another radiologist was on that day. He said I’m not treating you! What?! If this is truly cancer you will not survive for long anyway because this would diminish you good lung not to mention we would be damaging your heart every time we applied the radiation. I don’t think this activity is from cancer but your body healing from the surgery on your chest. 

Long story short, eighteen years later I’m still here. I haven’t had any further treatment since the surgery. I’ve been NED since that surgery. Just with any test they preform make sure you get a second opinion, it could save your life. 

Good luck with these tests. I’m sure they know a lot more now than then. Just ask a lot of questions if you aren’t sure of something.

[Judy M.]

Thanks, Tom, that does help. And I'll follow the link and read what it has to say. Would be nice to know what is causing the pain, so may end up being thankful for the extra test. Both of my shoulders have had similar pain on separate occasions that lasted about a year, cause unknown. Managed pain with physical therapy, ice, and tens unit and finally went away. Tests are probably so close because they wanted the bone scan and I wanted the P. E. T. scan to go ahead and be done and this hospital only does P. E. T. scans on Mondays. It's a mobile unit. Will let you know results of both. Probably  soonest I'll know is next Tuesday when I see my Pulmonologist. I really needed the break to get my equilibrium back physically, spiritually, and emotionally after almost 2 years of the cancer merry-go-round. Now I've regained it and I'm ready to know for sure where I'm at and what's next. In my mind, the P. E. T. is the best way to know that. And I'm still pretty assertive about getting things done. 

Judy M. 

[Judy M.]

Jazzbo

Thanks so much for your answer. Now I know if I have a bit of nausea no reason to be concerned and it will pass. Have had 2 P. E. T. scans already, so know what to expect with those. They confirmed the P. E. T. that showed my lung cancer with biopsies before deciding on treatment. From what my Oncologist has said he would confirm with biopsies again if he finds anything else. Probably because I had 2 different types of cancer and he'd always have to determine which it was. Sounds like you had great outcome if your cancer was 18 years ago. Glad to hear that. You and Tom are inspiring. 

Judy M. 

[CIndy0121]

Judy,

Your bone scan is tomorrow? You must already know your appointment time(s). When I had mine, I had to go in the morning for the injection and go back in the after noon for the scan. My best recollection is that it was about 6 hours between the two visits, then the scan itself took about 1/2 hour. Ironically, I had the “standard” bone scan with a few extra “pictures” of my left hip and thigh because I was having pain also. (Scan showed hip fine, later an X-ray “said” arthritis, one radiologist read it (incorrectly) as “possible metastasis”, bone density test called it osteopenia, now myalgia, inflammation, rheumatic side effect of Nivolumab....)

good luck with all your imaging, and let us know what you learn when all your results are in.

cindy

[Judy M.]

Cindy

Thank you. Bone scan completed and it was exactly as you described except I only had to wait about 3 hours between the injection and the scan. Mine was also full body and a few extras of the left hip. No problem at all with the scan. Didn't even have the short spell of nausea Tom and Jazzbo had. Glad yours was not mets. Hoping mine is the same. Will remember that you got an incorrect Radiologist reading just in case. I've had the same thing happen twice with a Radiologist deciding I had liver mets as a result of extensive scar tissue on my liver from a car accident. Thankfully, the doctor who treated me after the car accident warned me to always tell my doctors about the scar tissue if I had scans done because it would be mistaken for cancer. And he was right. The first time it happened was understandable error. But the last time was 3 months ago and that Radiologist had plenty of previous scans for comparison and just didn't bother to compare them. When I reminded my Oncologists A. P. about the scar tissue she carried it to a Radiologist she said she trusted for comparison with my previous scans. My liver was unchanged. She said Radiologists are supposed to compare to previous scans but some don't. They just look at cancer in the notes and jump to that conclusion. Bringing that up again spared me a liver biopsy and another stressful time of waiting. Already had an X-ray and the Radiologist said the only thing he saw wrong with my hip was a few minor bone spurs. I'd already had some stiffness and pain in that hip after sitting for too long for about a year. So, hoping it's just arthritis somehow aggravated by chemo. Maybe the experience with the Radiologist will help someone. Good to get second opinion on Radiologist reports also. How did they determine your hip wasn't mets? 

Judy M. 

[CIndy0121]

Judy,

I’ve always had frustrations with  radiology reports. I usually go by what my oncologist says when he looks at my scans on his computer. For one thing, many of them write every possibility because they need to cover their “bases”. Over the course of my treatment, the reports didn’t tell me much I could depend on.  I’ve had numerous bilateral nodules;some radiologists would count them, others might measure them, some might do neither, occasionally one would do both. But because a different person may be reading it each month, “more”, “fewer”, “larger”, “smaller” didn’t give me much to go on if I didn’t know those quantities the scan before. All in all just difficult because I didn’t have a tumor, mass or growth that could be easily measured and quantified whether there was progression or improvement. Sort of always a subjective look at several of the pictures until the oncologist and radiologist agreed to “call it” and move on to immunotherapy. 

Cindy

[Judy M.]

Cindy

In my experience my Medical Oncologist has also been more dependable on reading my scans. He actually caught the first false positive on my liver scan. He said he didn't see a problem and gave me the option of having a biopsy or waiting 3 months and scanning again. The original radiology report after my treatment said my lung tumors were unchanged. My Pulmonologist called both previous and current scans on her computer and let me look for myself. I could actually see for myself with no medical education at all that they had diminished. Which I suppose just reinforces that it's good to pay attention, do your research, and ask questions. 

Judy M.