I recently posted after my mum was diagnosed with Stage 3b lung cancer.
She saw the oncologist for her first appointment today who explained that her biopsy results show that she has NSCLC Adenocarcinoma (sp?). They have told her that it is T4, N3, M0. Whilst I know it is good that she hasn't any signs of distant spread I am confused because looking at (reputable) websites it would appear that with the about staging she is actually at 3c, not 3b, which has panicked me even more. We are still awaiting the rest of the results to see if she has any gene mutations, but the consultant said she will probably have either (or both) chemo/immunotherapy. How do they decide who can have immunotherapy?
My mum is otherwise healthy with no other underlying health conditions.
Thank you all for you continued support.
Sarah
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Leccilats
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Welcome to the Roy Castle Lung Cancer board. You will find lots of wonderful support here.
You asked how they decide who can have immunotherapy. Material from her biopsy was sent for genomic and PDL-1 testing. PDL1 is a substance the cell makes that tells the body’s immune system that it’s okay and the immune T cells shouldn’t destroy it. Some cancers make the PDL1 and your moms team will be trying to find out if hers does. If it expresses PDL1 at a high enough rate they will give her the immunotherapy.
The problem with us lay people using the internet is that we stumble on out of date or inaccurate information that we then believe is the latest one. the staging is agreed internationally and the staging and description given to my lung cancer in Dec 2010 has been changed twice since then. The latest version is the IASLC TNM8. The fact that it hasn't spread beyond the thorax is good and combination therapy is often offered. Once the results of the pathology tests are known her team will discuss options with her. Immunotherapy doesn't work for everyone and some have worse side effects than others. The specific genomic information will help as there are targeted agents available for many mutations/specific characteristics that together with specific information about the patient will be used to determine the optimum treatment for her. It's more important to know what treatments she can access and also ask whether there are any clinical trials available. there is clearly written information on Roy Castle website about the different types of cancers and treatments that once you/she know what is likely, you can read up more. They also suggest questions you/she might like to ask at the meeting. good luck.
It is an understandable worry and anxiety for you not having the full information which will provide the best treatment options for your Mum, but encouraging that your Mum is feeling well at present.
JanetteR57 has provided good and accurate information of the staging process and Immunotherapy. This link will provide information on a lung cancer diagnosis, including staging and at the end of the booklet what questions you may wish to ask at the next appointment:
If you wish to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our freephone nurse led helpline number on 0800 358 7200
I just posted this on your original thread and then saw this update, so have pasted it on to this thread as I was unsure if you would see it. I hope it helps a little.
My mum was diagnosed with stage 3b adenocarcinoma with a hot spot on her 4th spinal vertebrae, in December. I can absolutely identify with your terror, despair and state of inertia. The wait for tests, diagnosis and treatment plans were the worse 8 weeks of our lives. In every single one of your posts I see myself, and the confusion, and questioning that I went through. I posted on here too, looking for hope. Everyone who responded was so kind, and really knew what they were talking about. The sagest pieces of advice and information given was that lung cancer is not the death sentence it once was, do not look at statistics on the internet - they are so out of date and do not reflect the advances in treatment available, and people can live long and well with incurable lung cancer - think of it like a chronic illness, not a death sentence. So I wanted to offer hope. We are now 4 months in since the diagnosis. My mum, who had been asymptomatic - the first sign anything was wrong was when she coughed up blood - is still well and fit, which sounds contrary because she has lung cancer, but she is. She has undergone 4 rounds of triplet therapy, (pemetrexed - chemo drug, cisplatin - Chemo drug and Keytruda- this is an immunotherapy drug). She had a scan after the first 2 rounds which showed a reduction in the tumour on her lung, and that there was some scarring on her 4th vertebrae - which is good. She is now on maintenance therapy - Pemetrexed and Keytruda minus the cisplatin. This could be for the next two years, but we won't really know how it's going until the next scan in a couple of months. I won't say that this is easy, or that going through treatment isn't hard and distressing, for everyone that this affects , but there is every reason to hope that there will be regression, remission or there will be no evidence of disease at the next scan. When you have your plan in place there will be some release of tension, and you can start to look forward. I promise you that although life will never be the same, you can get through this.
How are things for your mum now? Thanks so much for such a supportive reply to my post, it really helps knowing you aren’t alone.
My mum finally began her treatment yesterday. She’s having chemo and immunotherapy at the sane time. So far she feels fine with no side effects - but I have no idea if that’s normal or even when to expect any side effects. They decided to give her a lower chemo to start and see how that goes. Her next treatment is in three weeks.
I was pleased about the immunotherapy as I thought this meant she had certain characteristics in her biopsy which enables her to have it, however after some reading it seems that immunotherapy is given to most? I’m not sure though.
I really hope your mum is doing well and you are feeling positive.
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