Coughing and SOB started my husband testing in the summer of 2011. We live in Louisville KY. Docs here say his scans are very difficult to read because he had radiation/chemo 19 years ago (Hodgkin's Lymphoma) and they can't tell what is cancer and what is scar tissue. A bronch in 9/2011 showed adenocarcinoma with bac features but of course, they didn't get enough tissue to test for mutations. The cells were found all the way up in his trachea. We go to MD Anderson and after testing, they say it is stage IV because he has ground glass opacities in both lungs and the hilar lymph node was involved. Tarceva was up first. Stayed on this for 6 months until they said the GGO appeard to be spreading a bit. Next up was Carbo/Alimta for 5 rounds. Stable. Then came Alimta only for 2 rounds. Last scan at MDAnderon in September said slight increase. A nodule they were watching in the center of the lung went from 1.5 cm to 2.5 cm. They wanted to biopsy it but as luck would have it, a blood vessel either runs right through it or on it so...too much risk for a bleeder. They can't biopsy the GGO. We decided to do a bronch in Louisville since we never found out what mutation he has. Pulmonary guy went to do the bronch Monday and didn't get any samples because in his words "he was as clean as a whistle." He said he went as far as he could take the scope (6th generation of the tree?) and said there was nothing as all. Both the pulmonary guy and our Louisville oncologist are baffled. Louisville onc has told us from day 1 that our people who read his scans here disagree with what the MDA people see. Louisville thinks maybe he has more scar tissue (fibrosis) than cancer and MDA feels it's the opposite. Luckily, Louisville and Houston are going to look at the scans together via conference call and go over it. Husband was supposed to start Taxotere next but is on hold until we figure this out. With no biopsy other than initial bronch, how do they know what is scar tissue and what's cancer?
Confused - 1248671
kate0228
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Reply # - October 4, 2012, 01:42 PM
Reply To: Confused
Hello Kate,
Welcome to Grace. I'm so sorry to hear your husband's cancer is so confusing.
The short non medical answer is you can't know because they look so much alike. And you won't know for sure unless you look at each bit under a microscope, which isn't really possible. It's really an awful situation and not that unusual. It's why the two teams are seeing it differently. How fortunate it is that they have agreed to look at it together.
I will make sure Dr. West sees this and gives his input. While we have many doctors on board to whom we reach out Dr. West is our BAC specialist.
You should hear from him by evening in Seattle.
Janine
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Reply # - October 4, 2012, 03:10 PM
Reply To: Confused
A bronchoscopy isn't the only way to get tissue. A CT-guided biopsy can also be done, and a core biopsy (bigger needle) can typically get enough tissue to do molecular testing. It sounds like the "clean as a whistle" was inside of the airway, which doesn't really mean much when the issue is what is behind the airway, in the actual lung tissue behind the airway. So a bronchoscopic biopsy can be done through an airway in an area that has an infiltrate (cloudiness), or a CT-guided biopsy can be directed to one of the areas where there is debate about whether it's post-treatment effect or cancer.
Other hints would come from whether the cloudy area is all continuous and within an area that matches prior radiation (more likely post-treatment effect), or if the patchiness doesn't conform to the radiation field (more likely cancer); also, areas that are now changing 19 years after prior radiation aren't from prior treatment effect -- that's almost certainly cancer. If there are films that show changes in the last few years, the worsening is very likely to be from cancer.
Good luck.
-Dr. West
Reply # - October 4, 2012, 05:59 PM
Reply To: Confused
Thanks so much for responding. Tony Hodgkin's was a mass the size of his fist in the mediastinum. He did 6 months of MOPP and did radiation after that. Unfortunately, there are no CD's of old scans so we have nothing to compare his current scans to. I found his last CT report and it was 2003 but no CD. We've known for years that Tony lost about 50% of his lung capacity from the radiation - according to PFTs. Quad bypass in 2003 - getting more complicated right?! It wasn't until spring of 2011 that Tony noticed his sats were dropping. He is director of biomedical engineering at Norton Healthcare here in Louisville, which is 5 hospitals so he would check his sats frequently. Had VQ, CT and PET scans in Louisville and several specialists didn't catch it. He begged his pulmonary guy to do a bronch and that's when they found it. Oh yes, he was in San Antonio for a conference in June 2011 (just before diagnosis) and was hospitalized there due to a PE. He had 2 CT's that week in San Antonio and none of the 4 specialist that were on the case caught it. MDA took one look at it and knew. Amazing to me how scans are interpreted by different eyes. Louisville onc called tonight and said he wants to repeat PET and compare it to the last scan and then confer with our Dr. from MDA (Frank Fossella). It's a shame we don't have old scans to compare to. We were going to try to do the Battle II trial at MDA but they needed a fresh needle biopsy and nobody there would touch that 2.5 nodule because of the blood vessel and they say they can't biopsy the GGO. The last scan said slight progression (1.5 cm to 2.5) - so he stopped alimta. What are your thoughts on Taxotere? Dr. Fossella told us he might have a 30% chance of it working on him - which isn't good in our minds. How close are they to approving a 2nd generation Tarceva? We really wanted to know if he would test positive to ALK - don't suppose they ever try that drug without knowing the mutation correct?
Reply # - October 4, 2012, 06:25 PM
Reply To: Confused
Hi Kate,
Taxotere is one of the few drugs which is FDA-approved for second-line treatment of lung cancer, but the response rate for any treatment after progression is not going to be high when stated as a percentage. But people do respond to Taxotere as well as any drug in this context. There are a number of drugs being tested to overcome resistance to Tarceva, but I don't know of any that are close to getting approved; access to these drugs would be via a clinical trial. And the drug you alluded to, Xalkori, is currently approved only for patients with the ALK rearrangement, although you might be able to find a trial in which it's being tested for ALK-negative patients.
JimC
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