The Roy Castle Lung Cancer Foundation
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Raising awareness of radiotherapy pneumonitis.

My mum was diagnosed with lung cancer type 3 six months ago. The doctors explained the cancer was terminal but manageable. Mum flew through chemo like a superhero. The radiotherapy however was not the same. Side effects took hold weeks after the intense course of treatment. Mum suffered with breathing problems, which got worse fast. Doctors explained it was chest infections and prescribed anti biotics but nothing worked. Eventually the hospital agreed to installing oxygen into my mums home and hurried through her scan.

Sadly it was to late, the day after mums scan was the day our mum fell asleep forever.

We as a family believed that the cancer must have spread. However when we got the scan results back, we discovered that the cancer had shrunk significantly but there was a shadow covering the entire left lung. The doctors explained that this was a side effect named radiotherapy pneumonitis.

In our case it was the treatment that took our loved one not the illness.

I wanted to write this post to make people aware of this condition. I wish we had known more two months ago. Instead we assumed it was just radiotherapy taking its toll a little and that mum would recover.

If you are displaying symptoms of breathlessness and wheezing please contact your doctor immediately.

I know my mum would want to help others and for her passing to not be in vein.

Its to late for us but i am now spending my life trying to honour my mum by raising awareness of this condition.

My reason for this post is to let people know the dangers of radiotherapy pneumonitis. Although it is not common to die from, my mum is proof of this possibility. Please dont hesitate to contact your doctor if you have any symptoms no matter how insignificant they might seem.

I would give anything to have my mum back. Rest in peace Tina Wilson, aged 56.

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Thank you for raising awareness

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Just hoping it can help others

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I was misdiagnosed initially and tell my story to people too when I think it can help others. Hopefully we can both raise some awareness.

Best wishes Xx

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Its terrible really as timing of diagnosis is so critical with cancer and side effects of the treatment. These are peoples lives we are talking about.

If there is anything i can help with please let me know. :)

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Louise,

Thank you for raising awareness, the trouble I have found is that when people need help and look to these forums that it is too late.

Like Bow-19 I was misdiagnosed. My story is so similar to a lady called Brogan whose husband had over two years of ailments before being diagnosed with SCLC. I could also name others with similar experiences from other sites. In my case the doctors are still saying that my symptoms of over two years could not be related to my eventual diagnosis of SCLC as SCLC moves too rapidly for this. It is frustrating that the medical experts don't seem to have learned anything from my plight and yet these forums has shown it not to be so unusual. It is great that we have these forums but when people find their way to them, they are often experiencing quite advanced disease.

We really need to have the doctors and medical staff on board, if I take a quote from Louise above "Please dont hesitate to contact your doctor if you have any symptoms no matter how insignificant they might seem." if the doctors are not on board then, in my experience, they are quick to point out how trivial your symptoms are and spend months/years spending more effort in convincing the patient that there are alternative reasons for the symptoms.

I know we should focus on the treatment road ahead, but one of the few positives that we can offer is to try and help others have a less bumpy path, be it in terms of treatment or earlier diagnosis.

Best Wishes to you Louise, and thank you for having the energy to honour your loving mother in this way.

Glynn.

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Thank you for your reply.

My mum was told twice that her issue was merely a chest infection and was given antibiotics. Which did not help as that wasnt the problem.

We knew to little about the side effects so therfore trusted the doctor's diagnosis.

We were told at the results of the scan that it was pneumonitis and the doctor explained that if caught earlier this would have been treatable, however statistically this is rarely an issue so was ruled out. Doctors need to realise that statistics are nothing compared to someones life.

It may be rare to die of this reaction but it is happening so should be addressed.

Mum was given steroids 4 days before she passed and oxygen was fitted in the home 12 hours before death which was 4 days after she was told about the fitting.

Doctors also explained that the scan showed the reaction covering her entire left lung, therefore if it shows up on a scan, i suggested earlier scans for patients in order to rule out things like pneumonitis. I was told this wasnt accessible due to the timescale of which the reaction can happen. Its not just the cancer which is a risk its the treatment and i believe both should be monitored carefully.

I contacted roy castle lung cancer charity and told them my story. They replied explaining they would dedicate a section of their new leaflet to pneumonitis based on my story. This is amazing news for me and my family. But as you say if the doctors arent on board, does it then fall on deaf ears?

Thank you

Louise

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Like your mum, my husband suffered from radiotherapy pneumonitis. We were never told this could happen. We were away visiting family at the time, radiotherapist doctor told us it was safe to drive. A week later my husband nearly died from it last May. The hospital doctor told my husband that if he hadnt come into hospital when he did he would of died in 2days.

We don't have much faith with the cancer unit where we live, We have been told so many wrong things by others, like when my husband went for his 1st chemo treatment, this lady doctor said your cancer is all over your body, so theres not much we can do for you as its aggressive cancer. I was so upset as no-one had told us that. When we saw the Oncologist he said who told you that, so my husband explained, he said I can tell you your cancer is in left lung only. (Its Limited cancer) When we went back for 2nd chemo the lady doctor was very nice to us all smiles, but no apology. Also nobody knows how long a person has to live, it affects people differently.

There is only one Oncologist who seems to know what his talking about, we tend to see him if we can, but sometimes if its busy we have to see someone else.

We often go and see GP for advice, he is very helpful.

Sorry to hear about your mum,

Sending you healing prayers

Love and Blessing.

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Im so pleased to hear your husband got through it. I mentioned in another post that i told the roy castle lung cancer charity about my mums story and they are now going to dedicate a section of their new leaflet to pneumonitis. This is a positive step but i wish i could do more. The doctors arent doing their job properly so someone has to. Just wish i could have known everything i know now 2 months ago.

Really sad for you that your husband has been misdiagnosed so much. As if it isnt bad enough being diagnosed with cancer in the first place.

My thoughts are with you xx

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Hi Louise, It is great that Roy Castle will put an article in the leaflet for pneumonitis. I was thinking about what else could be done as everyone has their part to play, from the patient, carers, nurses, doctors. I work(ed?) in the railway industry where safety is placed very high on the agenda. When mistakes are made, they are highlighted to all staff and used as learning. This isn't used as a form of punishment as long as the person involved was not acting wilfully to cause harm, and in the vast majority of cases there is no wilful intent. The key to this is that staff need to be onboard to learn from mistakes and recognise that mistakes were made. I think the difference with the medical staff is that they are not willing to accept they could have acted differently. In my case the doctors still say that I could not have had over 2 years of symptoms without things getting so bad that the cause would have ben obvious. When I do ask what was causing the symptoms they say that sometimes they just happened and could be psychological. So the next person that comes along with similar symptoms to me will go down the same horrid route as me which has negatively impacted so many people. Perhaps the clinicians need to look at how other industries learn?

Take Care

Glynn

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Totally. Agree hope your keeping well xx

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Hi Brogan, I am more fed up with the medical staff telling me how unusual my case is when there appears so many people have an unusual case like me. No doubt the pneumonitis is unusual too and something that can be brushed aside. Must say, I get upset with the You Will Never Walk Alone ads too, Also frustrated with the campaigns that try to raise awareness and get to your GP early, they are missing the weak link in all this.

Hope your hubby is doing well and hope you don't mind me mentioning your name! It makes me feel less unusual knowing that there are lots more out there like me and everyday I seem to bump into more and more.

Take Care

Glynn

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You make some really great points. Im actually in the middle of writing a letter to the hospital and the GP who dealt with mums care. I have no interest in compensation. All i want is for like you said, staff to be aware and realise they could do more. Alot of the time my mum was left lonely and confused at the lack of care.

An example would be....when my mum was originally in hospital having tests before she was dianosed, doctor approached her bedside and said "so its the big c then" at this point my mum had not been told and this doctor must have thought she knew.

There is no room for mess ups where cancer is concerned. Doctors may have all the qualifications under the sun but university can not teach anyone empathy. Without that i believe medical degrees mean nothing.

Thanks again

Louise

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The tv adverts saying you'll. Never walk alone! Me and my partner r left to our own devices we have only saw our local gp once since diagnosed. In Sept. 2016 you get yoyr heads filled with tomuch. At the start then thats its get on with. It and keep checking your chemo book for. Unusual. Thing that happen. Only people. With this dreadfull thing knows wot its like god bless to all xx

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Hi Louise,

Thank you for your post ,I received your email this morning.We have already previously replied in a private email.I will forward on the leaflet when it has been printed.

Kind regards,

All the team at Roy Castle Helpline

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Thank you so much. You really dont know what it means to our family that you are supporting us in raising awareness and providing vital information which could help others.

Thank you again x

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Louise, I cannot tell you how grateful I am to you for sharing the dreadful experience you have gone through with your beloved mum.

I have laid awake all night worrying about the next stage of my mums treatment for small cell lung cancer following her appointment yesterday with oncology.

Like your mum, mine has also Flown through chemo like a super hero, I've been absolutely amazed at her resilience, how well she's coped and, to be honest, the lack of side effects.

Following a CT scan her results revealed that the cancer has shrunk to almost undetectable and so the oncologist has decided to stop her chemo, she's had 4 out of the 6 cycles, and has instead decided on 6 weeks of radiotherapy to targeted at the brain and the lung. They explained it's purely preventative because of how quickly SCLC can spread.

However, what really threw me yesterday was being told that she will lose all of her hair, which didn't happen with the chemo, and that she could feel quite unwell. For some reason I had got it into my head that radiotherapy wasn't as harsh as chemotherapy so I was shocked and haven't slept last night thinking about it.

This morning I then read your post and am so glad that I decided to come on here to check about the effects of radiotherapy as I wouldn't have been aware of the devastating effects it can have.

As you rightly state, it doesn't matter how rare this may happen, the fact remains it does happen and people need to be aware of it. I certainly wouldn't have been had I not read your heartbreaking post.

I am so very sorry to read that the treatment robbed you of your mum rather than the cancer being treated, something we just don't expect and I feel is much harder to come to terms with.

My thanks to you for raising awareness of this, I'm just extremely sorry that you had to learn about it in the most devastating way.

In my thoughts and prayers.

Jacqui xx

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Thank you so much for your reply. It means the world that i am helping and i know my mum would want that to. Its very easy to put your trust in the doctors, especially when they use terminolgy that goes straight over our heads.

Please take comfort in knowing that pneumonitis can be treated if caught in time, which is why i am spreading the word. Sadly however the doctors can be ignorant to these possibilities as they like the word 'statistically' rather than believing that everyone is unique.

I would never recommend not having radiotherapy as its always best to do everything you can to prolong life with your loved ones. Im just trying to make people aware that the treatment can be just as vicious as the reason for needing it.

Like you it was the chemo i was worried about with my mum and i assumed radiotherapy was just the last step once the worst was over. However radiotherapy can actually be the more aggresive of the treatnents in terms of side effects. Keep an eye on your mum. Even to the point where your company begins to annoy her. I would give anything for one last hug from my mum and only wish someone had been able to make me aware of consequences of this treatment whilst we still had mum in our lives.

Take care of each other xx

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Thank you so much Louise for taking the time to reply to me.

Like you, I thought the chemo was the worst, was so relieved it was out of the way and now 'just' radiotherapy...how very wrong. As you rightly say it's side effects can be worse than the chemo, I really hadn't ever realised that.

My mum had her scan today and they marked the areas to be targeted with the radiotherapy. Thanks to your advice, I will keep a very close eye on her from when her treatment begins on 23 February. As they say, forewarned is forearmed.

It is commendable of you to fight to raise awareness of this after losing your mum so tragically, but if it saves others from the same fate, your mums life was not lost in vain. I hope that brings you some comfort.

My thanks to you and my thoughts are with you and your family.

Jacqui xx

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I will be thinking of your mum during her treatment. My mum was originally to have 20 radiotherapy treatments which were cut to 13 as doctors thought this would be to much. A few areas were targeted. It was classed as an aggressive treatment altho we were told it was just a precaution to help coincide with the chemo to ensure that the chemo wasnt for nothing. My advice is to keep a close eye on your mum and dont worry about being a little like a hypochondriac, push the doctors if nessacary as i think they need it. Remember that most side effects are treatable but the key is to catch them early. My thoughts are with you and your family. I pray for a better outcome for you and yours. Xxx

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