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The Roy Castle Lung Cancer Foundation

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Any advice appreciated

Fox78 profile image
9 Replies

Hello

I’m writing on behalf of my mum and just to gain some advice from others really

So this has happened very quickly she only had an X-ray last week then ct scan on Friday..

The dr called Friday evening to say there was a large mass on her lung and the hospital would get back to get to go in within ten days she was called from the hospital today to say she has lumps in her neck from the ct scan and she needs a needle biopsy which they are doing tomorrow so they can establish what’s going on I assume they are doing this to see if it’s spread to the lymph nodes

She’s 75 very fit for her age doesn’t smoke goes out waking isn’t short of breath hasnt lost weight but does have a really bad burning pain in her back and side and also some other symptoms like tiredness and not much appetite and she said she has started heaving when she rushes her teeth

She also has quite a large non pain file fleshy lump on her back which looks similar to a lipoma

I feel devastated I’m the only one and we only lost my dad to cancer 5 years ago, has anyone experienced similar symptoms who can give me something positive xx

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Fox78
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9 Replies
Bow-19 profile image
Bow-19

It’s so hard waiting for results. I wouldn’t google lung cancer. A lot of the information is out of date. If possible I would ask if you can be with her when she gets her results. I know that COVID sometimes makes this difficult but I think if you ask relatives are often allowed into this appointment. Someone close to me has had a cancer diagnosis recently and they were allowed to take someone to their appointment to get results. You could also speak to the ward staff to keep up to date with what’s going on. Thinking of you xx

Red58 profile image
Red58

Hi I also had biopsy It show type cancer and also best treatment for it.it is very stressfull time but doctors are great you will get support from this forum they are all great. Hope goes well x

Frances4r profile image
Frances4r

I wouldn’t google either. I did then when treatment was decided it was surgery I’m now recovering well. I had diagnosed myself on the internet and had no hope

JanetteR57 profile image
JanetteR57

It's very scary when these things happen to us or our loved ones but try not to think the worst or panic..... losing your dad to cancer will undoubtedly be impacting your thinking too but not everyone has that outcome. My dad had bowel cancer twice in his 50s when I was in my mid 20s so I lived that uncertainty of us not thinking he would reach 60 - he was 91 in February and also had another primary bowel cancer in 2016 and yet another major operation, enabling him to continuing caring for my mum (89 with dementia) at home.

I had similar to your mum - but experienced no end of delays - having had a chest x-ray in the October when I went to A&E with some strange symptoms including a lump on the left side of neck, stress incontinence with a sudden onset cough and strange breathing (felt as if breath wasn't going anywhere) and felt like I had glass in my throat - I hadn't lost any weight but had felt really tired and never smoked.

The chest x-ray showed a lesion on my left lung but after 7 hours I was sent home with antibiotics and steroid tablets. I'd been given 5 on admission and already taken 6 for the previous 3 days) but the next day was no better and admitted to hospital.

Misdiagnosed as uncontrolled asthma and given asthma meds to which I didn't respond and spent a week in hospital. the CT scan I should have had didn't happen as the scanner had broken down so it was 5 weeks before scan and results then sent for a PET scan. I was then referred to a thoracic surgeon who told me the 'large mass' in my left lung needed to be removed along with half my left lung. I had the surgery on 19th December and a 7cm tumour and upper left lobe removed in open surgery.

That was in December 2010. I was back at work and swimming by the end of March 2011. I went onto swim much further than before surgery and I was already a regular distance swimmer.

I've been involved in lung cancer research since 2014 and things have changed considerably with more treatments available but more testing to determine the characteristics of the tumour itself as there are now treatments like targeted agents and immunotherapy that may be used. Surgery can be used if the tumour is accessible and hasn't spread to lymph but there are many treatments in different types and combinations including radiotherapy called SABR (cyberknife) which are used in localised lung cancer. The majority of UK patients are not eligible for surgery but there are other treatments.

Try not to google or look at all the different treatments as she may be clinically ineligible for some which will depend on her general health and biopsy results. I've met many patients during the years who've lived for years on different treatments including those before newer therapies came along. Having been tired and breathless and never having had the lump/swelling in my neck investigated, I recently had ultrasound on it and mine was lipoma unrelated to the lung cancer....

She should be allocated a lung cancer clinical nurse specialist when she has her first appointment and should ask if this isn't offered - they can be really helpful with any questions she/you may have.

One piece of advice is that there are a lot of investigations which take time before a the multidisciplinary team determine who will lead care and what treatments will be suggested - so developing patience but being there to support her will help her no end... good luck to you both.... roycastle.org/about-lung-ca...

in reply toJanetteR57

Thank you for sharing, your story gives me hope, that this happened to you over 10 years ago. I’ve not been diagnosed but went to GP with change in bowel habit, two US scan and colonoscopy showed diverticulitis but when I told him I still didn’t feel right he was great and referred me for a CT scan and by accident I suppose it showed a 5cm mass in my left lung, I’m shocked, no symptoms at all, except more tired. Within 5 days I saw a consultant, that was Tuesday, then a PET scan on Saturday morning and neck scan on Saturday afternoon. It’s great that it has been so quick unlike you. Do you a different person going through all that? Like I say your story makes me feel it will be ok. All my bloods are normal and other organs. Thank you so much and I wish you all the very best.

JanetteR57 profile image
JanetteR57 in reply to

It can be such a shock when it's found out of the blue - and yes, I feel like a different person but I felt that way when I lost my sister 20 years ago - then her oldest daughter just 2 years ago at 33 from a catastrophic brain haemorrhage - all incidents that teach us that life is precious whether long or short have changed me. There are many life events that shape us and usually it's how we react to the situation.. after my treatment we lost a dear friend to undiagnosed widespread cancer and it prompted me to look into cancer research. I was shocked at the time on how little was invested in lung cancer research - less than 5% of all global cancer research although it's changed a little now - and I've become very involved in this area. It's enabled me to attend medical conferences, research workshops, meet other patients, clinicians, researchers and scientists and appreciate that the cancer research world is doing and has done so much with new treatments coming along all the time. I had no idea when I was no diagnosed having met patients who were 20+ years since diagnosis and treatment even existed - I've been involved in lung cancer research in Europe and UK and feel privileged for the opportunity to contribute to help researchers and scientists keep pushing for newer treatments.... many patients are diagnosed from 'incidental' findings whilst investigating for other things or in A&E - so it's good that you persevered and that your GP pushed ahead with investigations.... hopefully you'll get a treatment plan soon. good luck.

in reply toJanetteR57

Thank you. You have had a very bad time, losing your sister and her daughter, then going through what you have had to deal with. I’ve not been diagnosed yet, but I’m one of those many people who fear the worst and anything else is a bonus, the waiting is a nightmare but one thing was all the tests were done amazingly quickly and I’m thankful for that.

Deb231 profile image
Deb231

I am so sorry you have to go through all this .....I was diagnosed mid Covid and as you say its like getting on a rollacoster that wont lt you get off everything seems to move so fast...as you I lost my husband to cancer and feel how frightened and concerned my kids were.....all I can say is they know what they are doing they will as said have a whole team to help advise on exactly the right treatment.......and as said dont go googling I did nearly booked funeral lol so out of date hope all goes well my thoughts and prays are with you

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Dear Fox78,I am sorry to hear that your mum has a mass on her lung, without a doubt waiting for all the investigations can be a very difficult time, as others have said try not to google treatments or outcomes as there are so many different options and until diagnosis and staging you will not know what type of treatment will be available for your mum. If you are tempted to look anything up on the internet please stick to sites such as our own or MacMillan as many others have out of date inaccurate information.

If there is anything you would like to discuss you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

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