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Please read regarding lymph spread

LauraandLarry's picture
Posts: 184
Joined: Sep 2012

Last month when my husband had his post chemoradiation pet scan it showed that he had probable lymph node spread. Being staged at T3N1M0 his surgery was cancelled. It was a terrifying time. The scan showed many lymph nodes in the lungs, pleura, and trachea. The surgeon at U of M Dr Orringer said he had a hunch the results were wrong. He referred Larry for a bronchioscopic ultrasound. They went down the trachea and through the wall into the pleural spaces and in the lungs to get biopsies. They took I believe 12 of the 20 some nodes. They were negative. Surgery was rescheduled and performed on March 22nd. The Dr said after surgery that he has done over 3000 of these and only has seen one other esophagus and lymph nodes that looked like Larry's. He did not believe Larry was a stage 3. Pathology came back yesterday and he is forwarding his biopsy out of state for further testing. He believes Larry contracted Histoplasmosis, a fungal infection which is carried mainly by water birds and bats. Both of which are plenty here in Michigan. It is airborne and persons receiving chemo are unusually susceptible. He thought of it because he had another case where the gentleman during his 3rd cycle of chemo came down with a terrible virus they were not able to identify and did not respond to antibiotics, which led to stopping chemo. That mans pathology looked the same as Larry's. He had Histoplasmosis. They usually find in on autopsy. I have learned that many stage 3's have been denied surgery because this Fungus can be mistaken for metastatic disease making them inoperable. Getting very ill with fever and cough which lasted for 3 weeks with Larry is a symptom. Also fever with ulcerations and lymph node activity in the gastro region or chest region especially the mediastinum, tracheal, or hilar lymph nodes is a telltale sign. It saddens me to think many may have been denied the hope for a cure. It will up to 6 weeks for Larry's final results. He has been downstaged to a stage 2a. I am so incredibly pleased with this surgeon and the staff at U of M. Even with the setback Larry is having now, I have full faith. I hope this helps anyone else out there that may be suddenly facing the "surgery not an option" sentence. If you or your loved experienced an illness during chemo and then your scan shows lymph node spread, please demand biopsies, especially if you live in a state where Histoplasmosis is prevalent.

P.S. We live on a lake and yes, we have bats in our attic...kind of creepy

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