CSN Login
Members Online: 4

You are here

Any information helpful, stage 4

Agv
Posts: 13
Joined: May 2014

I have had a lung mass that has never changed size since 2009.  The pulmonologist told me that it was scar tissue and would never be anything to worry about.  Well, 2014 CT scan showed a slight change in it, but not in size, and a lymph node next to it mildly enlarged.   Needle biopsy of main lung mass came up showing precancerous.  Then an EBUS of lung lymph node showed suspicion for adenocarcinoma but couldn't confirm that.  The PET scan had shown the 2 places in the lung and a place in the T12 bone in spine as hot spots.  Third biopsy was of T12 and it confirmed I have stage 4 adenocarcinoma of the lung with metastasis to the bone at T12.  I have MRI in the morning to see if it has gone to the brain, although they don't think so.  I am beyond scared.  I don't understand how this has happened when I had a pulmonologist watching it.  Now they tell me my cancer is not curable and most stage 4 lung cancers only live 10 to 14 months.  Please, any information or advise would be greatly appreciated.  Thank you.  

Ladylacy
Posts: 770
Joined: Apr 2012

I can remember many years ago, the doctors telling my husband he had lung cancer and he only had a few months to live.  They sent him to have a biopsy done and I remember the doctor coming out and telling me that he didn't have cancer but that it was a horrible lung infection.  My husband after that always had scar tissue that showed up on his chest x-rays.  He spent a week in the hospital on very strong antiobodics.  Fast forward to 2010 when he was diagnosed with laryngeal cancer (SCC).  He underwent radiation and chemo.  We were told after a PET scan he was NED.  Not true.  Another biopsy and a trach and then referred to a head and neck specialist.  Surgery followed by 14 months of NED and he was doing great.  Then a second primary was found at the cervical of his esophagus.  Surgery ruled out.  Rare spot for cancer, but no spread (they didn't tell us they were watching some small spots in his lungs).  Under round of radiation and chemo.  NED for 8 months when after a PET/CT scan they found the 2nd primary back and larger and that the nodes in his right lung had grown.  Our specialist want a needle biopsy asap, they didn't want to do it because the nodes were small and hard to get to.  Well they did it, took 4 tries to get some cells, but it was cancer (spread).  Only thing offered was chemo.  My husband had already told me he wouldn't do anything else.  Our doctors never gave him a time, but research showed that with or without treatment that this second primary had a survival rate of 24-25 months.  So far my husband has beat that, so see doctors don't know.  I have always said that only the man upstairs knows.  He has no problems today with breathing, although after walking outside he does get short of breath but once he sits and rests he is fine with his breathing.  A lot of pain but he always complains of his pain in his spine and back that moves around to the front sometimes.  Says he feels like someone is standing on his back.

Today we are 16 months out from this diagnosis and he is doing fair.  Get another opinion from someone or a cancer center that has plenty of experience in this field.  That was something I wished we had done in the very beginning not waiting until the second biopsy showed his laryngeal cancer was still there because according to our specialist it never went away.   

Wishing you the best -- Sharon

dennycee
Posts: 836
Joined: Mar 2011

3.5 years ago I was told I had 10-15 months with treatment.   I'm doing very well.  Not cureable is not the same as untreatable.  I would however, find a new oncologist.  Preferably at an NCI affiliated comprehensive cancer care hospital.  

Subscribe to Comments for "Any information helpful, stage 4 "