PET scan to avoid invasive testing/biopsy - 1247274

jam6725
Posts:5

I was diagnosed stage 2B/3A adenocarcinoma in early 2009; had a right pneumonectomy June that year, following two rounds of cisplatin/pemetrexed (which did not shrink tumor). A new mass was identified (left upper lobe) in late 2011; my last two non-contrast CT scans showed increase in size and density. The location (close to my airway) is not good for a biopsy, but my pulmonary doc (treating me for sarcoidosis diagnosed in 1983) wants the biopsy; I asked my thoracic oncologist to order a PET scan or MRI instead--he did order a PET scan which will be done tomorrow. In our conversation, my oncologist hinted that no tissue biopsy would mean no treatment.

I am very afraid of a punctured lung, understanding that I would probably not walk away from the OR. Am I wasting my time and money looking for a good definition of what to do next from a PET scan? I have been told that the sarcoid-affected tissue, now throughout my body, will light up the PET scan as if it were metastatic lung cancer?

Your comments will be greatly appreciated. Thanks. Allan

Forums
Full Archive

Reply # - August 23, 2012, 07:00 PM

jam6725
Posts: 5

Thanks, Jim. i read the thread you provided, and will have to wait and see what the PET scan reveals. If inconclusive, then I have the tough choice between the high risk biopsy and "wait and watch". Again, thanks. Allan

Reply # - August 23, 2012, 08:31 PM

Dr West
Posts: 4735

I agree it's a tough situation. Sarcoidosis can be associated with markedly enlarged lymph nodes that light up quite avidly on PET scans, really looking indistinguishable from cancer on PET (our surgeons have taken out mediastinal nodes in several cases that looked just like cancer-filled nodes, but they turned out to be sarcoidosis). If it doesn't light up on a PET scan, that's pretty reassuring, but if it is hypermetabolic, that isn't going to conclusively make the diagnosis of cancer.

-Dr. West

Reply # - August 25, 2012, 05:24 PM

jam6725
Posts: 5

Thanks to JimC, Dr. West, certain spring and cards7up for your comments. I should get the results of the PET scan mid-week, but understand your comments regarding it not yielding a conclusion if the new mass lights up. I still can't step up to a bronchoscopy, with just two lobes remaining and an already compromised airway (the surgeon moved my airway, esophagus and heart to the right). I am not trying to make my (very good) oncologist's job harder, but I know just too much about the risks of a bronchoscopy for someone in my situation. I meant to mention before that my tumor was KRAS positive, which I think unfortunately complicates the determination of a treatment course. Again, thanks for your helpful and supporting comments.
Regards, Allan

Reply # - September 3, 2012, 01:28 PM

jam6725
Posts: 5

While somewhat hesitant to continue this topic, my PET scan results were positive, with the new mass and two lymph nodes (both in the lung) within my remaining lung lighting up (eight plus SUV on the mass). We meet tomorrow morning with a (very skilled) pulmonary doc who would do the bronchoscopy, IF I would agree to go ahead. I remain very fearful of a punctured lung/pneumothorax/any airway damage.

My medical oncologist told us that he believes that the mass is a new, malignant cancer, but chemo is not an option without a tissue sample and for other reasons. He believes that stereotactic radiation is on the table but that the radiation oncologist will want the same tissue samples (we don't understand why radiation oncology needs a tissue sample---perhaps to ensure that sarcoid tissue is not being irradiated?). We are looking at Partners' Health and the Cleveland Clinic (due to the sarcoidosis) going for a second opinion, waiting until we meet with the pulmonary doc and hopefully with radiation oncology.

Any comments would be greatly appreciated.
Regards and thanks, Allan

Reply # - September 3, 2012, 07:42 PM

Dr West
Posts: 4735

I think the real issue in terms of a need for tissue is legal more than anything else, and that it is really considered all but mandatory. Every few weeks, we review a case at our tumor board of someone who appears to almost certainly have cancer but ultimately has infection or sarcoidosis or some other inflammatory condition as the cause of the imaging results. And I have been tangentially involved with one case of a person who was receiving cancer treatment for a presumed but not proven case of cancer that ultimately turned out to not be cancer.

These treatments for cancer have real risks that are likely justified if someone truly has cancer, but accepting the risks without being certain we're actually treating cancer is something we try to never do. I wouldn't say that there is never a place for treatment without a biopsy if the risk of a biopsy exceeds the risk of a treatment for what is very likely to be cancer. To me, that question of whether it is acceptable to proceed without a biopsy might well be a leading question in a second opinion consultation. Sometimes people just need to be reassured of when it's permissible to break the usual rules.

Good luck.

-Dr. West

Reply # - September 4, 2012, 06:25 PM

jam6725
Posts: 5

Dr. West, First, thanks for your important comments. We met with the pulmonologist this morning who will do the bronchoscopy/biopsy in a few weeks. Yes, we agreed that a tissue sample was critical to differentiating among possible malignancy, sarcoidosis and inflammation. This doc was well-prepared to talk with us, reviewing all scans and PFTs going back several years. He has done this procedure ten times since 2001, which sounded like a low number to us until we realized that many one-lunged folks don't make it to this place. This doc recognizes the risk, so the procedure will be done under general anesthesia in an OR, with me already catheterized and connected to an EVOC. Our sons describe that as a garden hose inserted in my neck, so that should be fun. Just an aside, but this doc took the time to talk on the phone with one of our sons, an anesthesiologist, to discuss the procedure.
Again, thanks for your comments--it is very good of you and your colleagues to contribute your time to this important information source. Regards, Allan

Reply # - September 4, 2012, 09:31 PM

Dr West
Posts: 4735

Very kind of you to say. It does sound like you have a very good doc working with you. I wish you the best of luck. As for the garden hose idea, I'm sure they rinse it off before taking it in from outside, at least....

-Dr. West

Previous PostNext Post