My brother has been diagnosed with stage three NSCLC. Adenocarcinoma. He had a Mediastinoscopy/bronchoscopy to reveal the cancer was in the three lymph nodes that he had removed. This was over 6 weeks ago. They state its inoperable and incurable. He is due to start chemotherapy this week.
His own GP offered to refer him to a Hospice and told him to get his house in order. I am disgusted.... It's like they just don't want to be bothered to look for treatments.
He was tested for EGFR/ALK but the results were negative.
We have read so much about Cyberknife, immunotherapy, proton therapy etc ....has anyone tried these? How do we go about getting the treatments? Also what about light therapy? Apricot Kernels, hemp oil etc?
Please help... My brother has a newborn baby daughter and we want to find some treatment that will work.
The mass is apparently the size of his fist and in one lung. Although he hasn't been offered any other tests to see if it's spread anywhere else. Is this right?
Thank you.
Written by
Portia63
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Sorry to hear about your brother's situation and the limited hope that has been offered.
In terms of treatment options I would ask if he has been seen by an oncologist or a surgeon? They should be working as part of a multi-disciplinary team to assess the best treatment options. Surgery for lung cancer can often be ruled out because of the size and location of a tumour.
In terms of the tests he has had carried out these should have included whether or not their are signs that the disease has spread - they would usually check lymph nodes, which check whether the cancer has moved beyond the original tumour site and it would be reflected in the staging of his tumour. If he has not been given this information he should be able to get him from his Lung Cancer Specialist Nurse who should be in touch with him to explain more about the treatment plan.
We also have an Answering Your Questions pack which explains about different treatment modalities, like cyber knife which is a form of focused radiotherapy. For the pack or details about nurses do call or ask him to call our freephone helpline on 0333 323 7200 option 2.
At present immunotherapy is not licensed in the UK, but may be avaialble in a trial setting. Good ifnormation on trials is available on the Cancer Research UK website.
I am sure some of the forum members will share their experiences of various treatment regimes.
best wishes
Lorraine
on behalf of the Information & Support team
Hi Portia, it's sounds like your brothers GP is not giving him the support he deserves and should have. As Lorraine has said his MDT team should be looking at all options and available treatments. If you click on my picture you can read about some of my history with cancer. Since my second diagnosis this year 12 month median life exptancy was mentioned but everyone including my oncologist are and will be looking at all of the ways that I will surpass the expectancy. If necessary get a second opinion . Let us know how things go,we are all here for you.
Good Luck Rab.
My heart goes out to you I don't know what to say to you sorry
Hi Portia, so sorry about your brother's news. For us it was like being bombed. So good you are helping research all options. You need to find out whether it's operable. Check whether a surgeon was present at the MDT (the meeting of all specialists at the hospital). Speak to the lung cancer nurse specialist at the hospital...he/she should be able to help answer all questions. Get a second opinion ASAP if anything is in doubt. It will be very tiring but keep going. It may be that the options are limited, but you never know if there could be a relevant trial opening, (maybe as second line of treatment too), unless you check thoroughly. They presented us with 3 options dependant on biopsy results (a maintenance therapy, a clinical trial that was open, then and standard palliative chemo) which then became 1 option: palliative chemo. We got a second opinion re surgery but to no avail in our case. Anyway, at least we tried all avenues. Some people have good responses to palliative chemo too. Everyone is different. I wish you well. Stay strong on this difficult road. Kx
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Living with lung cancer
Small cell lung cancer
