HPOA DEVELOPED AFTER LUNG REMOVED - 1264209

lauren
Posts:3

I had non small cell lung cancer 2011 had 3 chemo and PRT that did not work
so July 2013 I had a pneumoectomy left lung . After my lung was removed I
started developing boney knots on my breast bone and they have become
really big. Also I have developed painful bone growth in the joints of my fingers
I do not have clubbing.
I have read that the symptons disapear after lung surgery, mine have become
really bad after surgery.
My Lung scan in March was clear, I am wondering if I need a bone scan
or or other scans, and what I can take for the awful pain.
Thank you

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Reply # - June 7, 2014, 09:09 AM

JimC
Posts: 2753

Hi lauren,

Welcome to GRACE. I’m sorry to hear about the terrible pain you are experiencing. There are many options for pain relief, and your doctor would best be able to determine which of them would be appropriate for you, perhaps after a consultation and exam. Dr. West has written about HPOA (http://cancergrace.org/lung/2009/02/10/hpoa/ ), where he notes that bisphosphonates may be helpful to alleviate the pain. But he also states, as you have read, that symptoms often lessen after surgery.

If your doctor suspects cancer progression, he is likely to order further scans. If the bone growths were present before your most recent scan, then a PET scan might be appropriate to see if any areas light up as suspicious for metastases, since there was nothing shown on your chest scan.

We will hope that there is another explanation (and solution) for your bone growths.

JimC
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Reply # - June 7, 2014, 10:28 AM

lauren
Posts: 3

Thanks for the reply, I am still confused. I had lung cancer in 2011 had 3 chemos and 6 weeks
of PRT. The lung cancer was in remission for about 6 months then came
back and I had to have my entire left lung removed. I notice a few tiny bone growths
on my breast bone area, but then after I had the entire lung removed, and the Cancer
with it, That is when the HPOA started getting really bad. I had a Pet scan of my lungs
in October and another in March, there was no cancer in the right lung. They only
do my chest.
I now wonder if I need to get my bones and brain checked.
My doctor did recommend Actonel, but I have not taken it because
of my stomach issues after the lung removal.
Thanks
Lauren

Reply # - June 7, 2014, 09:59 PM

Dr West
Posts: 4735

I'm sorry to hear of your ongoing pain issues.

I have never heard of a PET scan done just on the chest. If it's like any other PET scan that has ever been performed, it covers a broader area than the chest and really obviates the utility of a bone scan. Surveillance brain imaging is not routinely done and is not a standard recommendation in the absence of neurologic symptoms that would suggest a higher probability of cancer in the brain.

Other than trying to treat the underlying cancer effectively, I think the main treatment would be adequate pain medication, such as opioids.

-Dr. West

Reply # - September 29, 2014, 01:14 PM

lauren
Posts: 3

Hello, I am back from MD Anderson, I took your recommendation and had
a full body PET Scan, in the past it was only a CAT scan of the chest.
On the PET Scan they found a pin point spot in chest too small to measure
will follow up with a PET scan 4 months.
Seems PET scan more precise than a CAT scan, is that correct.
Also, I saw a Rheumatologist while at MDA, she said I did not have
HPOA (no moon shaped fingernails) but I had inflamed O.A. recommended
Plaquenil, (with a eye test first) because of peripheral vision loss, or
Methotrexate in small doses.
I have not started either because Plaquenil takes 2 months to start working
I am leaning towards Methotrexate ?
Or I could get joint replaced, to alleivate the pain.
left hand is worse that right,left arm no lymph system.
Just in six months the middle joints on ring and middle fingers have become
so inflamed that I can no longer make a fist, and the tendons are become affected
so that when I bend my middle finger it goes sideway, just 6 short months.
I wear bandaids on my joints to keep from stressing them, ie a slight support,
They are deforming rapidly, so I guess the question for today is?
Plaquenil or Methotrexate?
Thanks for your help
Lauren

Reply # - September 29, 2014, 09:12 PM

Dr West
Posts: 4735

Lauren,

I'm glad you've received some answers and good suggestions. As cancer specialists, we really aren't the right people to address a rheumatology question to, so I'm sorry to say that we can't address the relative merits of plaquenil vs. methotrexate for inflamed osteoarthritis.

PET scans have their merits and are very good for some situations, such as whether a nodule has the metabolic activity profile typical of cancer, but they don't provide the detail of size and shape differences that diagnostic CT scan. There is a right tool for different jobs -- a CT scan is great for some situations, and a PET scan better in others. After an initial CT scan, a PET scan can be very helpful in the initial workup for raising or lowering suspicion that a questionable finding represents cancer, or for staging a confirmed cancer.

Good luck.

-Dr. West

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