Brother Diagnosed with Stage 4 Cancer (Rectal)

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Hi,

My brother has been diagnosed with Stage 4 Colorectal Cancer in March/April, which has spread to his lungs and liver (multi bilateral liver and lung metastases (stage 4). The outlook isn’t good.

He is 47 and was mega fit and healthy… now a little weaker and tired.

This is devastating for us all. He’s not really come to terms with it as yet and is focusing on each day and we don’t speak about the future just the now…

I will need to talk to someone about that aspect, but also just trying to spend time with him and our family as much as possible.

They started him on Folfiri, then expanded to Folfox and now we are exploring Bevacizumab (Avastin) as the Folfiri didn’t work and we are looking to add to the treatment with Bevacizumab.

I’ve also commissioned a Tempus test to see if there is anything more that we can see from his bloods and biopsy for trials and other treatments etc.

The NHS seem to have narrow options when it comes to testing cancer and treating it. I’m not sure if the Tempus test will give us anymore options but worth looking at and we are getting it free as a friend is well connected.

I’m not sure what to do tbh. His oncologist says they can’t do much more than the treatment plan… Anything else would need to be self funded and the Bevacizumab is one aspect.

I just wanted to say what I’m doing for him in case there are other things I can be trying. We do talk with his Oncologist and care team but, it seems like it’s an inevitable road we are walking down, with not many options… just keeping him happy and going through the treatment until time runs out.

We have spoken with a private oncologist and will ask her to review the tempus results when we have them back, which I guess is as much as we can do. She may be able to suggest alternative treatments, for quality of life or to prolong things.

You hear of many people surviving different cancers, heard good things about places like the royal marsden etc, you start second guessing or feeling your brothers on a road with no options with his type of cancer, coupled with the nhs and the limitations of what they can offer.

Other than, discussing the practicalities of wills, spending quality time with family and friends which I’m making sure he does, doing fun things, speaking to my brother and making sure he doesn’t feel alone. I’m not sure what else to do now.

Maybe some time with one of your counsellors? For me and him? He hasn’t spoken to anyone like that, he just doesn’t want to process the bad news…bless him.

interested in your thoughts….

Thanks

Steve

Carole F - Macmillan over 1 year ago

Hi Steve,

Thanks for getting in touch and welcome to our online community.

My name is Carole and I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

I see that you have joined a couple of our online groups. If you’re looking for a place to share your feelings, our family and friends forum can be a good place to get support.

When someone close to you is diagnosed with cancer, you may have many different feelings. Sometimes it’s difficult to know what to say, or do, but it sounds as if you are doing lots to support your brother.

It can take a while for some people to come to terms with their diagnosis. Many people find it difficult to talk about cancer, and some people find it easier to talk about how they are feeling, emotionally, with someone they don’t know well. You’ve mentioned counselling and this is something we could provide for your brother, through our partnership with Bupa.

On the Support Line, we can provide emotional support for anyone affected by cancer. This includes family and friends.

It’s understandable to want to ensure that your brother is getting the best treatment he can.

Usually, doctors use the NICE guidelines to help them make decisions about testing and treatment. I’m not sure from your message if your brother has had genetic testing done through the NHS, but once he gets the results of the test you have commissioned, it may be helpful to discuss them with his NHS oncologist in addition to the private doctor.

As you say, not all targeted treatments are available on the NHS. If doctors think one of these treatments might help, they can apply for funding.

However, this can be a difficult process and unfortunately, it’s not always successful.

If you’d like to talk things over with one of our nurses, please don’t hesitate to get in touch.

The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm.

I hope this is helpful,

Sending best wishes to you all.

Carole

Our ref: KM

StevePer over 1 year ago in reply to Carole F - Macmillan

Hi,

Thanks for the advice. My brother has had the following test.

This is an extract from my brothers report which has looked at 250 mutational hotspot regions of the 45 cancer-associated genes, and copy number variants (CNVs) in 14 genes using the Oncomine Precision Assay GX and the Ion Torrent Genexus Integrated Sequencer (Thermofisher Scientific), so a good look at the most likely changes that would help with clinical decision making upfront.

Unfortunately the result was:

An activating mutation has been detected in exon 2 codon 13 of the KRAS gene in the tumour sample analysed. This finding indicates that the patient is unlikely to respond to EGFR monoclonal antibody therapy.

There is no evidence of NRAS mutation, nor BRAF mutation present in the tumour cells analysed.

This is why he’s on the treatment he is and why we are having the Tempus test to see if there are other options for us in terms of treatments and trials.

It’s pretty much a dead end with the NHS and what seems to be a standard treatment package.

You realise quite quickly they are not setup for certain cancers, have limited options and cancer in itself is difficult to treat in certain circumstances.

I’ve friends in the industry, pharmaceutical and private cancer care and they’ve said they are barely scratching the surface in terms of what they can do…

More funding needed!

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Brother Diagnosed with Stage 4 Cancer (Rectal)