Hello everyone, hope you’re all keeping ok? I’ve found support on here for myself so reasurring in the past but today I am asking for my brother who was diagnosed with 8cm NSCLC in April 2020 (same time as me!). Whilst I had amazing support and treatment, my brother sadly has not. I am very worried for him.
He was unable to have surgery but had 20 rounds of radio in June 2020 which at the time significantly reduced the tumor size. He then had no further treatment until just over a year later - one round of chemo and immunotherapy. He had an awful adverse reaction to the treatment and was really poorly for a while afterwards. He said he so poorly he wouldn’t have chemo again but would try radio but it was not offered again.
Afterwards trials were discussed with his oncologist but it turned out he was not suitable. I don’t think he’s had a CT since September 2021. Although had CXR. He spent a few weeks in hospital earlier this year after having clots on his lungs He doesn’t seem to be advised of his full CT results either, so he doesn’t no size of tumor now or exact progression . In April 2021, He was told by his oncologist that they could do no further treatment and that they would be referring him to the hospice for his ongoing care . He asked how long he had, and the mumbling, shoulder shrugging oncologist said that he would not see the year out. We are absolutely devastated.
I am deeply saddened that my brother hasn’t has the same level of care that I experienced. He doesn’t seem to have a CNS, his oncologist just appeared to be vague all the time. It’s just awful. It’s like he’s just been left. The hospice have been supportive. I think my brother has just given up all hope.. I know there’s always hope. Is it worth asking for a second opinion ? What can I do to help. Any suggestions please x
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Mogs2
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Hi! So sorry to hear this. With cancer there are always ups and downs. So don’t be disheartened by this report; it can always get better. Pls tell him eat well (avoid sugar and gluten!) and do as much exercising as his body allows. My mom does yoga (breathing exercises) regularly and it seems to be working for her. Try it maybe?
Also, it is obviously very difficult to stay positive at this time, but I can tell from my personal experience that it makes all the difference. It gives you the strength to fight against cancer. I would suggest he start meditating.
I am very sorry to hear about your brother it sounds like he has had a very difficult time. With any kind of cancer including lung cancer each individual’s treatment will be very different, even though it seems as though the disease and spread sound much the same, there are lots of other factors that can come into play such as any underlying health problems, the position and type of the cancer and how well any treatment is tolerated. Some people do react very badly to chemotherapy, and they are not able to tolerate this type of treatment. Immunotherapy is in general tolerated much better, that being said there can still be serious side effects, including colitis and pneumonitis, if these symptoms can’t be controlled then this type of treatment will need to be stopped.
Radiotherapy is a very good option for lung cancer but if he has already had 20 sessions of radiotherapy treatment, they will not be able to irradiate the same area of his lung again although it might be possible to deliver palliative radiotherapy to alleviate symptoms.
I would speak to the staff in the hospice about your concerns regarding his treatment and what the plan is for him going forward. If you still feel concerned it is always possible to request a second opinion and review of his treatment so far, if you approach the hospice staff or his own Gp they will advise you how to do this.
If you would like to discuss anything you can email ask the nurse at lungcancerhelp@roycastle.org or our free phone nurse led helpline number is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
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Small cell lung cancer
Seems a long time
My Husband
