Unusual cancer.

[angels5454]

Hi there, does anyone out there have this cancer which I have? It's called Bronchoalveolar cell carcinoma. A Rare variant of Adeno carcinoma of the lungs.?? There is no drugs or treatment for me. I am sure there must be someone out there. Would be good to talk to someone.

[sassy59]

It is so difficult if you have anything that is rare but maybe there is someone out there to talk to. I know you have sarcoidosis which in itself is enough to deal with.

Angels 5454 to you l send strength and caring thoughts as you have so much to deal with. Xxx

[angels5454 in reply to sassy59]

Hi there Sassy59, thank you for responding to my message. Thanks for the support. The doctor at Christies knew that I was always wanting to know is there anyone else with this type of cancer. She would say no. Then one day while I was attending my appointment, I asked again is there anyone else with this cancer? This Dr then said " yes, there is a lady who has the same cancer and she is in her 60's and she is a grandmother like you". I went home and thought to myself "I should of asked my doctor if she could put me intouch with this lady.

The next time I went back for my check ups, I asked my doctor if she could pass on my contact details to this other lady. My doctor frowned and said " I don't know what good that would do" So I said "well, we could support one another" Then my doctor dropped the bomb shell and said "There is no such woman who has the same cancer as you, I only told you this to make you feel better" Well I was shocked, I did not know what to say. I lost trust in this Doctor and changed hospitals. This doctor is a drugs trial consultant but she really had no bedside manners.

[sassy59 in reply to angels5454]

Oh angels that's terrible to do that to you. It makes me so angry. Doctors or anyone for that matter should walk in your shoes for a day. Dreadful. You take care, there must be somebody out there. Xxxx

[Hidden]

Sounds like genetic form of cancer I would ask about immune therphy as one option also your doctor should of give you anaphylaxis pen as your more predisposed to be wasp stings having greater effect given your cancer.

My experience of doctors if you don't ask you don't get

[scorpiolass]

Hi Angels, no I had squamous cell lung cancer & a right upper lobectomy in 2013. So far seem to be doing OK. I have just posted a link to the new patient priorities lung cancer website. I hope this may be helpful to you. Margaret

[angels5454 in reply to scorpiolass]

Hi Scorpiolass,

I am not new to this site but I have not gone on it for a long time as I feel that no one has the same as me so it's hard for people to understand the cancer which I have. They did test me for that gene which is a mutant gene which I have.

Best wishes

Angels xx

[rubyred777]

Hi Angel, Can't help you out much. I also had squamous cell . Have you tried the different lung cancer forums? There surely must be others with the same.I will check out the ones I know of.I see you got your cancer 4 yrs. ago. They must be doing something right.😊 Rubyxx

[angels5454 in reply to rubyred777]

Hi Rubyred777, Thanks for advice, I was diagnosed with lung cancer in 2008, I had half my left lung removed but no chemo or radiotherapy. Then in 2010 it came back but in both lungs. They took lots of large biopsies but still nothing to treat me with. The cancer grows when I'm under stress, but it's stayed the same size for a while now. They see me every 3months and every 6 months they give me a CT scan. I'm always being told by people that I should be grateful as I'm still here and Iv got everything to live for. I know it could be worst and it could travel some where else so I have to put it to the back of my mind. I just wanted to know if anyone else has the same as me. Thanks anyway.

Angel xx

[Dedalus]

Sorry I can't help either Angel - mine was squamous cell too. The link Margaret posted earlier today may be of some help and, as suggested by Ruby there may be people on some of the lung cancer sites who can help. Best of luck and all best wishes xx

[angels5454 in reply to Dedalus]

Thank you Dedalus, for the info. I will try other websites.

Best wishes to you xxx