Cancer treatment

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I’m just really angry / concerned about my Grandads treatment. He was diagnosed in June but they was unsure as to what type of cancer it was, had PET scan / CT scans etc. They said the cancer was incurable but liveable , suggested treatment was an option. Waiting for a biopsy in the meantime. It got to about 2 and a half weeks after his biopsy to get a result , which then came back inconclusive. So from around the 1st June to the start of August, still no proper diagnosis and no treatment. Anyway he had a consultation with a completely different oncologist that they had sent him to at a different hospital for her to deliver the news that the cancer has gotten worse and we’re now looking at 1-2 months survival. As well as this he now has COPD.
When the lady at the appointment was discussing his options she mentioned about complications if he chose to have treatment, she mentioned about losing limbs? Now this put my Grandad off straight away and when he said no I’m not doing that I don’t want to lose limbs she said she thinks he’d made the right decision. Now I don’t think that’s professional and he should’ve been told the pros and cons but it came across like she was writing him off immediately and made that decision for him.
there has been no contact from the hospital since , he now has fluid on his lungs and it was suggested to have it drained but they never called with an appointment like they said they would’ve.
A nurse suggested steroids but then another nurse said no. He’s currently just on morphine.
He is having no check ups , no one is calling in on him to check how he is getting on.
does this care sound standard or are we right In thinking he deserves better treatment?
He has a few blood clots which are caged off ( had a DVT previously ) is this what can make the whole progress more complicated?
I just feel like he doesn’t want to bother anyone and is just letting it be.
thank you I don’t know if you can help but I guess I just wanted to know if we should raise this and try and move his care / if steroids would be beneficial? Thank you

Gemma S - Macmillan 5 days ago

Dear LJMMb1fdf9

Thanks for getting in touch.

My name is Gemma, and I’m one of the Cancer Information Nurses on the Macmillan Support Line.

I am so sorry to read about the situation your Grandad is in and how upsetting you are finding it.

Sometimes, when medical teams cannot find where the cancer started, they call it cancer of unknown primary (CUP).

This means they have found a secondary cancer but have not been able to find the primary cancer. People with CUP sometimes have secondary cancer in more than 1 part of the body.

Cancer of unknown primary can be difficult to treat. Waiting for test results can be a difficult time. It may take from a few days to a couple of weeks for the results to be ready.

When CUP is diagnosed, cancer has already spread from one part of the body to another. In many cases, this means the cancer is already advanced. It is not usually possible to cure cancer that is advanced and has spread to other parts of the body.

It might be worth contacting the medical team that saw your Grandad, or via the patient liaison service of the hospital, to discuss again what the complications of treatments could have been. It might help you understand why these decisions have been made.

When cancer of unknown primary is growing quickly, there can be disadvantages of treatment, such as side effects, which may outweigh the possible benefits of treating the cancer. If Grandad is too unwell to have treatment, His doctor may suggest he has palliative care on its own, instead of treating the cancer.

Palliative care may include symptom management, emotional support, and care at home. It is not only about end-of-life care.

Your Grandad's GP will be able to refer him to the community teams. People sometimes think cancer palliative care only means care at the end of life. But it means much more than this.

You mentioned steroids. Palliative care nurses can help with that decision if they are involved, check with his GP, and get them to refer.

It may be that the main hospital team are not the right people to manage his care at this time and that community care and support for his advanced cancer is better.

This must have been a great shock to you, so I am glad that you have reached out for information.

When someone you know has cancer, you may have many different feelings. These feelings may come and go. You may have good days when you feel positive, and difficult days when you struggle more with how you are feeling. Everyone is different. There is no right or wrong way to feel.

You may want to focus on supporting the person with cancer. But it is important to pay attention to your feelings and take care of yourself as well. Taking care of yourself can help you support the person with cancer better.

Please keep in touch .You may find it helpful to call our support line or contact us via Webchat. Our Macmillan Information Nurse Specialists are here to offer support and help with your questions on 0808 808 00 00 every day 8 am-8 pm. You can also email us back and we aim to reply within two working days.

Take Care

Gemma.

Cancer Information Nurse Specialist

Ref: GeS/VG

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Cancer treatment