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From: Swampwitch / laura (verlughmina) DelphiPlus Member Icon3/2/07 3:09 PM 
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Shane was diagnosed with poorly differentiated, monophasic synovial sarcoma of the pleura. It was a shock to the doctors involved.

Shane had been dealing with a very difficult case of pneumonia and pleural effusion. His left lung was pushed up into his left shoulder due to fluid build up. He had it drained twice and the lung would not expand. Now we know tumors give off fluid but that never occurred to the doctors due to Shane's age. A 19yr old with lung cancer??

A thoracic surgeon was hired to scrape the pleural lining, which he did to remove the thick fluid and irrigate and flush with distilled water and antibiotics...yeah I know we are all cringing here. ....He released the lung as a piece of "scar tissue" was gluing it to the chest wall. The lung expanded, he did some repair work and all was well. One week of recovery the surgeon was telling him he could go home and the primary dr. was on the phone to me saying he had cancer.
The surgeon never spoke to us and wouldn't look us in the face the day we had to give Shane the news, no he wasn't going home and he had a cancer that they still did not have a difinitive diagnosis on.

The lab originally ruled negative and someone decided to do a double take and said it wasn't right..possible mesothelioma??? so tissue was sent on to 2 more labs for proper diagnosis.

By this time Shane had been in the hospital almost 2 months. For the pneumonia prior, the surgery and recovery and then diagnostic work up for the cancer. The difficulty was no one believed the lung pleura was the primary. So many full body diagnostics to locate the suspected hiding primary. Even the tumor in the lung did not show on scans as at the time it was sheaf like as in mesothelioma. Not a measurable tumor. Doctors were dumbfounded.

Now almost a year after Shane's diagnosis I've seen published articles on PUBMED stating that primary of the pleura is indeed a recognized condition. At the time Shane was diagnosed this was iffy and he was told he was one of 11. They still believed it could be mets but without knowing how far the tumor cells were spread or located they could not do surgery.

So AIM 4 rounds as a caution and hopes that it would kill the small cells. He finished the 4 rounds last Nov and scans remained clear until one year later, last April. From Jan. to April tumors grew aggressively 10 plus of them with the largest 4.5cm. Insurance issues delayed proper secondary opinion from a sarcoma center and tumors were allowed to grow one more month. By now they were wrapped around 2 ribs making surgery too difficult. So experimental chemo for synovial began in June right before his 21st birthday July 8th.

Gem/tax ravaged his body, acted like a vitamin and in 5 weeks time he was gone. His left lung was completely full of tumor pushing his heart into his right shoulder. He had a drop down met in his abdomen. This was due to contamination from the original surgery.

Shane hated pain meds as he wanted his mind to remain clear. He never complained and we had no clue as to the rapid growth. He loved his family, his friends and his fellow internet cancer warriors. His niece was the light of his life. He fought a brave battle, complained little.

On his 21st birthday he was determined to go to the casino to play poker with the big guys. His dad took him, he threw up on the way, 2 times there and lost his pot during the games he had to leave, on the way home 2 times. Though he was in treatment and couldn't drink he insisted on buying his dad a beer to celebrate the fact he was legal to do so. When they got home he thanked his dad and told him he had a great time...that was Shane always positive, funny, encouraging, despite the horror of the disease.

We miss him a great deal. He made me promise that I wouldn't stop reaching out to those in need and helping them. He knew all the research I did for him and his situation and didn't want it to be wasted. He reached out to others and wanted me to continue to do so. I'd like to keep that part of Shane going.

  • Edited 3/3/2007 2:31 pm by Swampwitch / laura (verlughmina)
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