The Roy Castle Lung Cancer Foundation
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Mums Cancer

Hi I'm Rich, my mum (64 and healthy) was diagnosed with (probably lung) cancer with brain mets last week. It came completely out of the blue, she was having a routine check for blood clots when they found a shadow on her lung on the 2nd Jan. She had a biopsy the following week, and we were waiting for the hopefully good news when she had stroke like symptoms, double vision, loss of balance and she became very confused.

So a nightmare trip to A&E, 24 hours waiting in a corridor just like you've seen in the news! And they did a scan on the brain and found there are lots of small tumours. We've gone from not knowing and everything seemingly being fine over Christmas and new years, to 3 weeks later realising she has stage 4b cancer with brain mets.

She saw the oncologist at North Staffs yesterday, I wasn't with her but my sister (a Doctor) was, apparently he scared the life out of her and she is refusing treatment. She was offered whole brain radiotherapy, the oncologist went through the side effects and stand outs are, permanent short term memory loss, hair-loss. These were enough to convince mum she didn't want it.

I was under the impression the memory loss wouldn't be permanent anybody here know better?

I've been reading lots of posts on this site and others and became enthused at the prospect of some of the new treatment options. I asked my sister to ask about ALK and EGFR tests but apparently the original biopsy didn't recover enough material for these tests, and also the oncologist was rather negative about the chances of these working on the brain tumours. I've read it can be difficult but not impossible for chemo to work through the brain barrier. Mum doesn't want to go through another bronchial biopsy procedure.

We're also thinking of trying to get her referred to the Christie in Manchester which happens to be close to where I live and from what I can gather I think she will get better treatment there.

If anyone has any advice or even a kind word I'd be glad to hear. I think I'd like to get some idea of whether I should be pushing her to get the biopsy and see what treatment options there are or whether to let her try an live out her last days in relative peace.

Apologies for the long post, haven't had anyone to talk to about this stuff so it's all come out here!

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Dear Rich,

I am very sorry to hear the news about your mums recent diagnosis. Whole-brain radiotherapy(WBRT) is recommended by NICE (National Institute for Health and Care Excellence)for people with symptomatic brain metastases who are in a fairly active.It is not recommended for everyone. WBRT can treat multiple tumours as well as small, undetectable tumours that may be developing in different areas of the brain. The advantages of WBRT are that it can treat small, large and multiple tumours at the same time, and tumours deep in the brain that are unreachable with surgery.

The benefits of radiotherapy depend on a number of factors. It is important, therefore, to talk this through with your doctor and ask about the side-effects, outcomes and quality of life any treatment may give.

Radiotherapy works by permanently damaging the DNA of cancer cells. DNA (deoxyribonucleic acid) makes up the genetic code that tells cells what to do. If it is damaged or destroyed in the cancer cells, they should stop dividing and the tumour can stop growing or even shrink. Normal tissue around the targeted tumour may also get affected, but the cells in normal tissue are usually able to repair the DNA damage and continue to grow normally. The temporary damage to normal tissue around the treatment area can cause some side-effects, though the risk is low and the side-effects are likely to be short lived.

Most people after whole brain radiotherapy lose their hair, but this grows back. While there is a small risk of slight decline in memory some months after treatment, the risk from treatment is slight and people tend to return to their normal activities. In any case, the risk of damage from treatment is likely to be less than from untreated brain metastases.

Cancerous tumours don’t shrink immediately after radiotherapy treatment. It can take some time for this to happen and for those affected to notice the beneficial effects.

You say your mum is not keen for a further biopsy,it may be possible to have this repeated but the doctor managing her care would need to respect your mums decision as regards any investigations and treatments offered.

If you feel you or your mum is unable to talk to the specialist,you should have been given details of the lung cancer nurse specialist who is part of the multidisciplinary care team involved in your mums care.With your mums permission,it might be worth talking through your concerns with her/him and asking her/him any questions you might have.It is a good idea to write down any questions as you will have a lot on your mind.

If however your mum is refusing treatment based on her frightening experience at the recent clinic appointment she can ask her GP to refer her for a second opinion.

People often worry that seeking a second opinion will upset the doctor however, many doctors, consultants or other specialists are happy for people to get a second opinion. They know that for some people it can be helpful.

Her GP will be able to refer her to someone not chosen by her current specialist. She could ask to be referred to the Christie as you said it is nearer to you.If your mum is referred for a second opinion, her relevant medical information will be sent to the new doctor or specialist. This information will include her scans, test results and any previous treatments. If needed, the new specialist can also ask for information from the original doctor and hospital.

I have attached a link for our Radiotherapy for lung cancer booklet for more information.We also have a booklet Understanding brain metastases and lung cancer. You can order copies by emailing orders@roycastle.com for a hard copy but in the meantime they are available for download at

roycastle.org/system/file_u...

documents.roycastle.org/Rad...

If you have any other questions and would like to talk to someone,please don't hesitate to call our nurse led Helpline Freephone:0800 358 7200

I hope this information is helpful.

Kind regards.

All the team at the Roy Castle Helpline

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Thanks for your advise and support it means a lot. I'll pass this on to mum and hopefully it'll give her a bit of a lift.

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I would definitely go for a referral to the Christie. I did similar with my mum, changed from the local, incompetent, hospital to the Royal Marsden and she is getting much better treatment there. Good luck, I know what you're going through.

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Hi Tapdancer

I had feared that our local oncologist would be overly medical and cold, and was unfortunately proven right. Having only had the cancer diagnosis a week ago we really needed some comfort and support rather than hearing about all the things that can go wrong. Fingers crossed that we can get to see someone who wants to help at the Christie.

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Hi sending lots of love.

Just as an aside, the doctor was incorrect when he said treatment for ALK wouldn’t deal with brain mets.

The second generation drugs do indeed break through the brain barrier and target brain mets for the main majority of people.

Wonderful that you are being your Mums advocate. Knowledge is power. Treatment for this disease is improving rapidly.

Don’t give up hope.

My 30 year old daughter is ALK and she lives a perfectly normal life.

When diagnosed it had spread to her lymph nodes and bones. We were all terrified and the doctor was very gloomy!!!

She runs 5 miles most days and is looking forward to doing a 10k and then half marathon in very near future.

She is fitter than most people that I know.

I repeat, please don’t give up hope.

Lots of love and positive vibes

Xxx

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Hi Leslie

Its great to hear that your daughter is doing well with her treatment, and she sounds like a true inspiration for other sufferers. This is more positive news that will undoubtedly help give mum some cheer.

Many Thanks

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Hi Leslie, Vicky is a total inspiration to us all. Sandra xx

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Thanks Sandra, she is incredible!!!

As are all the incredible people on here sharing, caring and fighting together xxx

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I would agree that some targeted therapies have been proven to penetrate the blood brain barrier so it is incorrect to say there is little chance. Drugs are being developed daily and great breakthroughs are being made.

My mutation was identified through a bronchoscopy rather than a biopsy.

Insist your mother is tested for the most common mutations.

Another option for brain mets is cyberknife which targets the small brain mets rather than the whole brain.

Don't be put off

Ask the questions and find out all you can. There are options.

I am stage 4 and have been going for almost 4 yesrs on various treatments.

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Thanks for your kind words, good news is it's working. Mum is coming back round to the idea of treatment! She's got a new granddaughter due in June and it'd be lovely to think she can not only meet her but see her get to school age :)

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I thought I'd update people here on the last 3 weeks. Unfortunately Mum's gotten much worse since I last posted. Just over a week ago (Friday 2nd) she had a 2nd biopsy under general anaesthetic in order to determine the type of cancer she had. They removed an enlarged lymph node from near to the tumour in her lung. She never really recovered from the operation, and since has not been able to stand up or walk by her own. We were hopeful that this would be a temporary blip but over this last weekend she has deteriorated further and so it has become clear that she's not a candidate for treatment under the NICE guidelines.

We also recently found out that the lymph node that was removed did not contain any cancer, the oncologist has diagnosed Angiosarcoma, a cancer of the blood vessels, based on the scans and earlier biopsy. He gave us some comfort that we couldn't have done anything more for mum as this very rare cancer is quite resistant to radio therapy and chemo.

So now we're in the very sad situation of waiting for the inevitable, it seems to be approaching very quickly and mum is suffering so I do hope it doesn't go on for long. The Macmillan team as well as the Marie Curie and the district nurses have been amazing, I'm sure the rest of the family will be doing all we can to help raise money for them when this is over.

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Sending you lots of love xxx

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It must be very hard my husband had lung cancer which he got twice in 2 years and each time they took parts off his lung a way. july 19th we was told he had brain mets he had 5 palitive radiaion treatments in august but sadly it didnt do much good he died 2nd of november at home piecefully we had a lovely palitive nurse came in and district nurse and carers who helped wash him and make shore he was comfortable they kept him pretty much pain free .near the end he slept a lot .so my advice is ask for as much help as you can .have someone you can talk to as it can be very hard for you try to get out even if its just for a walk .the nurses kept him as comfortable and pain free as they could .take care thinking off you xx carol

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