The Roy Castle Lung Cancer Foundation
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Rare Cancer

I had a removal of what was supposed to be a large cyst, In May this year. In June I I was told that following Thoracotomy for right upper lung lobe removal. That the cyst of 7cm was growing attached to 11cm of a rare form of adenocarcinoma. It was removed encapsulated in the lobe with no lymph node involvement. I had no obvious symptoms. No chemo or radiotherapy. I will undergo the 5 year regime of serial X Rays. Started last week. 3 monthly for 2 years. 6 monthly for 3 years, then yearly for life. I have never smoked, alcohol occasionally, I had sarcoidosis in the same lung area but no problems and otherwise healthy.

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Dear Daisy47

Welcome to the forum and sorry to hear about your adenocarcinoma. It is encouraging that it has been removed completely with no treatment follow up apart from the routine xrays for the next 5 years.

If you wish to discuss anything at anytime you can call us on our free nurse led helpline number on 0800 358 7200

All the best

The Roy Castle Support Team

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Thank you support team for accepting me on the lung forum. I am very lucky that I lived a normal life, with sarcoidosis and hypo Thyroid. I went years without a cough or cold. Until after a pelvic floor operation. I had bronchitis in April 2015, which cleared with antibiotics. December 2015 another bout of Bronchitis a there was a small amount of blood on tissues twice in the same day. January 2016 I had an X Ray which showed a large mass in right upper lung lobe. CT and PET scans showed a 6.2cm cyst. I opted for serial X Rays, as I was feeling well enough and infection had cleared. January 2017 I had a fall on a pavement landing on my right chest and shoulder front on. After this I noticed changes. A lung X Ray showed it had changed. More scans followed, it was thought to be a Teratoma and there was a possibility of rupture and potentially instant death. I Went on holiday, not too far away. And functioned normally. 3rd of May 2017 Cyst removal, 1 broken rib during op, otherwise went well and was only 3 nights in Hospital. 5 weeks later came the shock diagnosis. Adjuvent chemo was not possible due to the rarer cancers having no chemo to use on them. As I had no metastasis, and it was removed encapsulated, it was agreed that I shouldn't have it. I can't take steroids or anti inflammatory medications The rarer cancers don't show up on X Rays or any type of scan, which is why it only showed the cyst, so the sarcoidosis wasn't seen either. Altogether I had 18cm and a crushed lobe for what could be decades growing very slowly. I will still have the X Rays it may not show a rare growth but anything else, like a sarcoid granuloma or cysts would be seen. Sorry about the length of this post. I feel like a fraud, an idiot or an Alien. Which is why I rarely mention it.

Reply

Dear Daisy47

Thank you for the post, you are very modest in that you had to deal with the diagnosis of not just a rare cancer, but to be told not suitable for chemotherapy .It is great it was found incidentally almost by your fall and the cyst and perhaps caught in time so that surgery could be performed with no spread.

What we find on this forum is everyone's journey to having a diagnosis through to treatment is very unique and different, but we all have the same emotions and everyone's experience is just as important. the forum provides a place to share this and be encouraged by others.

All the best

The Roy Castle Support Team

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Thank you for your reply. Much appreciated.

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