Awaiting cancer diagnosis for my dad :( - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Awaiting cancer diagnosis for my dad :(

Jaynelovestravel profile image
33 Replies

Hello. I’ve found this forum and I’m hoping it may help me and my dad. We are awaiting a diagnosis and my anxiety is off the scale. It looks like my 76 year old dad has a tumour in his right lung, even though he’s never smoked in his life. Im taking him for a PET scan this Thursday and I’m really scared as I think it’s spread to his bones as he’s been having pain in one leg for over a year and finger clubbing since August but his GP kept fobbing him off. We should get the diagnosis on o1 March. I’m scared, I’m angry with the GP for not listening to my dad and I don’t know how to prepare to help my dad with whatever lies ahead. Any advice or tips would be welcomed. I lost my mom 18 years ago so I will be my dad’s carer. Any support would be greatly appreciated.

33 Replies
RoyCastleHelpline profile image
RoyCastleHelplinePartner

Dear Jaynelovestravel

Welcome to the forum and sorry to hear of the worry with your dad. It is understandably a very anxious and worrying time for you both.

It can be quite an emotional rollercoaster with lots of different emotions, that can be quite intense at times. Please know that you are not alone and there is plenty support available for you both.

The pain in his leg could be many other things other than cancer, especially if this has been over a year. Secondaries in the bone often present as intermittent pain, which can be worse at night then progressively gets worse and usually over a shorter period of time.

From your dads PET scan, they may decide to book him in for a biopsy, where they can determine if it is cancer, what type it is and if there are any specific cell mutations or proteins that might provide other treatment options.

Thankfully, lung cancer treatments have improved in the past ten years with Immunotherapies and targeted therapies, and are continuing to improve through research.

This link will take you directly to our booklet on 'managing a lung cancer diagnosis' not because we think your dad has cancer, but it goes through the investigations, what to expect and the different types of cancer including what questions to ask at the consultation: roycastle.org/app/uploads/2...

It can sometimes help in caring for someone who may have cancer to find out more about it, we have many booklets ranging from diagnosis, the different treatments and living with lung cancer, these can all be found on this link: roycastle.org/help-and-supp...

This is the link to our support services: roycastle.org/app/uploads/2...

If you are looking anything up online, we would advise that you view the following websites that provide accurate and up to date information:

roycastle.org

cancerresearchuk.org

macmillan.org.uk

You may find this link useful, from Macmillan support, providing information on emotional support for carers: macmillan.org.uk/cancer-inf...

There is a lot of support and encouragement on the forum, if you would like to discuss anything you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

Ceibach profile image
Ceibach

I am sending Huge cyber hugs. My husband had his first day of triple therapy yesturday.... His cancer stage 4 was only discovered via A&E in January. The specialist nurses and this Web site have been my salvation..... The waiting is horrible.... Good luck

Jaynelovestravel profile image
Jaynelovestravel in reply to Ceibach

Oh thank you for replying. You must know that gut wrenching feeling of helplessness and anxiety. I’m normally a busy working mom with teenagers with a positive outlook to life but my world has turned upside down.

I’m not sure how to prepare my dad for the diagnosis. We probably won’t hear until 01 March and the waiting is excruciating.

Do you mind me asking what they told your husband with his diagnosis? I’ve no idea what to expect and I’m so scared.

sassassas profile image
sassassas in reply to Jaynelovestravel

Hi Jaynelovestravel I'm sorry to read about your Dad and hope you get some sense of what might happen from this forum if the diagnosis is confirmed as lung cancer.

You ask about what they will tell your Dad about the diagnosis. His medical team will be honest and straightforward but also sensitive. If you have lots of questions, they will take time to answer those for you (take a pen and paper!). Its also fair to say that if your dad asks about his prognosis, they will answer that too. In our experience, this wasn't helpful at all - firstly, the raw stats are not good (my husband was diagnosed with stage 4 disease - 53 and a non-smoker - obviously the stats are better if its caught earlier), and even if you already know them, its shocking to hear it from a doctor sitting in front of you. But more importantly, the stats are at least 5 years old and its only in the last 5 years or so that the revolutionary new treatments are starting to be used widely and successfully. And of course, your Dad isn't a statistic, so the team can't tell how he will respond as an individual.

I hope that helps. We all know only too well how hard the waiting is, but in the meantime, if you can support him with eating well, sleeping well and doing exercise (whatever he's able to do), it'll make sure he's in the best place for whatever is next for him.

Love to you both xx

Jaynelovestravel profile image
Jaynelovestravel in reply to sassassas

Thank you so much for your honest and straightforward response as even practical advice can help me best prepare to support my dad.

Besides his finger clubbing, weight loss and a pain in his leg (which is hopefully unrelated) he seems to be well. He’s got a good appetite and is looking forward to staying at mine tonight for a home cooked fish pie after the PET scan. Long may that continue.

I’ve got a notebook now specifically to have everything in one place about my dad’s condition, treatment and anything else. Just so I can organise my mind and grasp hold of any control we have going through this journey. My dad says he feels like he’s on a rollercoaster it’s suddenly moving so fast.

How was your husband’s journey, if you don’t mind me asking? I think the more real life stories I can hear will help me be realistic and help me accept what we’re going through.

Thanks for the best wishes xx

sassassas profile image
sassassas in reply to Jaynelovestravel

Really glad to be of help. Fish pie sounds the perfect thing to look forward to. My husband always has a custard tart after his scans. Each to their own!

He is doing incredibly well, thank you. Its almost a year now and he is now as fit and healthy as he's ever been (he's a big cyclist). His cancer had spread extensively so surgery and radiotherapy weren't options, it didn't have a targetable mutation but it is suitable for immunotherapy. He had 4x cycles of chemo + immunotherapy and now just has the immunotherapy every 3 weeks. For him, the IO doesn't have any major side effects. His last scan was really brilliant - there doesn't seem to be anything active (an unbelievable change from the 1st scan when he had massive tumours in both lungs and loads all around his bones, one in his thigh bone was 8cm long!).

You have such a tough time at the moment whilst you wait. The paths from here are so different, depending on whether its cancer in the 1st place, what type / sub-type it is, where it is, and then, if it has spread, the investigations needed to work out which drug will be effective. It does get easier once you have a plan, but it'll feel like a very long time getting there. Doctors kept saying to us how important it is to treat with the best (and right) treatment from the beginning but it does take time to work out.

Thinking of you and keep in touch, Sarah x

Jaynelovestravel profile image
Jaynelovestravel in reply to sassassas

Ah Sarah, that is so positive to hear. I’ve been strong with my dad but at other times I feel so overcome with anxiety. We had the PET scan yesterday and then lung function tests today. Then he has a cardiac review next Friday so I guess they’re thoroughly assessing him to make sure they come up with the right treatment.

My daughter is studying at Madrid Uni so I’m going to see her next weekend and the hospital suggested that would be good for me to clear my head as best I can . Then I’ll take my dad for the diagnosis on 04 March now. It seems like they want more time to assess results and advise on the best treatment.

My husband and I were going to Antigua on 05 March, booked a year ago when we had no idea of what would happen. Obviously we have to be there for my dad and BA have been great and understanding. The Caribbean can wait. I’ve a far more important journey supporting my dad.

I’m so pleased your husband is going well. It’s so important I’ve got positive stories of real people getting through this, should my dad be told it has spread to his bones. I cannot thank you enough for sharing this. Jayne x

JanetteR57 profile image
JanetteR57

Always hard when so much is unknown especially our knowledge of what treatments might be available or what might be involved. Like your dad I'm a never smoker and faced similar uncertainty/anxiety after being misdiagnosed as uncontrolled asthma when I went to A&E and a chest x-ray clearly showed a lesion on my left lung. due to never smoking and a childhood asthma history (I was 52) it wasn't treated urgently and turned out to be a 7cm tumour at the top of my left lung. It was removed together with half my left lung - that was in December 2010 and I was back at work/swimming a few months later. things have changed considerably since then in terms of knowledge, research and available treatments and even if it has spread beyond the lung meaning surgery might not be an option, there are many other treatments. Many patients even on harsh treatments receive comments like 'but you look so well' and we're all different - depends on our health/fitness levels before diagnosis and any other conditions but people in their 70s and 80s tolerate treatments of all types if they're fit enough... what you can do for your dad is to be there, offer him support for his appointments if he needs it, listen and don't treat him differently - e.g. with pity etc as patients rarely appreciate that.... but don't stay away either - that happens a lot with people not knowing what to say so staying away leading to concern by the patient that they may have done something wrong.... don't google as so much information about lung cancer is outdated and inaccurate.... if you want to know more Roy Castle lung cancer foundation is a trusted resource for patients, relatives, friends and healthcare professionals and regularly updated.... today is my dad's 92nd birthday - when I was in my 20s (and he in his late 50s) he had bowel cancer twice and we didn't think he'd reach 60 then another primary bowel cancer in 2016 when he was 86 also resulted in another major operation but he came home to care for mum (alzheimers) so whilst there is hope, there is life.... take care

Jaynelovestravel profile image
Jaynelovestravel in reply to JanetteR57

Thanks for sharing your story. That has really helped me :)

Cockailschemocancer profile image
Cockailschemocancer

I'm so sorry to hear this about your Dad, the tests and the waiting are the worst bit's unfortunately and there is no right way to be, just be kind to yourself and do whatever it is that will help you both get through the next couple of weeks. Once treatment starts mentally it does get better as then something is happening to it. Best of luck to you and your Dad xx

Jaynelovestravel profile image
Jaynelovestravel in reply to Cockailschemocancer

Thank you for the positive vibes and yes, it’s the uncertainly making me so anxious. I think when we have a plan, I can then focus my energy on helping practically and giving my dad all the support he needs

LiquoriceNose profile image
LiquoriceNose

Hi there,Really sorry to hear about your Dad.

My Mum (76) was exactly the same this time last year. We all thought she had long covid.

She had massively swollen legs (which we put down to her CKD). She could barely walk across the room, and this is someone who would walk a couple of miles every day.

She had an ongoing cough for months.

Her joints everywhere were so painful and swollen, but a tumour can cause this as it sometimes gives off weird chemicals.

She also had the finger clubbing for a few months, which we didn't even know was a 'thing' until she saw her kidney specialist for a routine appointment. Thank god she did because it was this lady who referred her for a chest x-ray!!

After lots of tests and scans, Mum was eventually diagnosed with a 6cm lesion, top left lung (also a non-smoker, thats the difficult bit to get your head round!).

Thankfully there was no spread.

She was offered surgery, but due to her CKD and the potential risks she decided against this and had an intensive course of radiotherapy at Christie's in Manchester.

(20 sessions each weekday for a month).

This concluded in July 2021.

We're happy to report that from the scan done in October 2021 there has been MASSIVE shrinkage and the Oncologist is really, really pleased.

She's like our Mum again.

Legs are back to normal.

Fingers back to normal.

Slight occasional wheezing but that's to be expected after radiotherapy as it can cause some scarring.

She's also doing her walking again, perhaps not as far as she used to just yet but it's a positive.

We love her so much and I can totally understand your angst and worry.

Please, please try to just look after yourself. Your Dad will need your love and support and it sounds like you have so much love for him anyway!

Wishing you both lots of luck and strength for your journey xxx

Jaynelovestravel profile image
Jaynelovestravel in reply to LiquoriceNose

Oh my goodness, that positive story has filled me with joy, thinking there could be light in these dark moments! Thank you so much.

I love my dad to bits so really hope it’s all going to be fine, even if it’s a bumpy journey.

My niggling worry is that the tumour is in his right lung but by his vertebrae so the big question is has it spread. PET scan tomorrow and my dad’s staying at mine and wants a fish pie! Glad he’s chirpy. Then just a wait until the diagnosis which will probably be 01 March.

Your message has lifted some of my anxiety. I will try and be more positive. Thank you so much and I’m delighted your mom is doing well :)

LiquoriceNose profile image
LiquoriceNose in reply to Jaynelovestravel

Oh I'm so glad to be able to bring some positivity (that message brought a tear I have to admit!!) I absolutely LOVE the fact that hes having (and actually has the appetite for) a fish pie. Brilliant!

Mum lost her appetite so much (again, putting this down to Long Covid which we all feel so stupid for with hindsight!) She dropped about 2 stones. Back on form now though! 😁

Everything crossed for tomorrow (eyes, legs, arms).

Please let us know how he gets on.

Sending mega positive vibes 🥰

Jaynelovestravel profile image
Jaynelovestravel in reply to LiquoriceNose

PET scan done and my dad had a siesta after that and he ate a big portion of my fish pie and loved it :)

Lung function tests today and we’ve got our appointment for the diagnosis on 04 March. Still feeling anxious as it’s a long wait. Focussing on the positives though and my dad went home to his, only 20 minutes from me, with fish pie round two 🐠 Glad I made it fresh so he’s getting lots of goodness so he can be in a good place to face whatever we need to.

Before the PET scan I told my dad to think nice thoughts, not to worry and I mentioned that real people have been sharing their stories in this forum. Me explaining that your mom is walking better, fingers back to normal was a real glimmer of light for my dad. I can’t thank you enough. Now everything crossed for 04 March. Once we have the diagnosis I may share these messages so he can see there is a way forward and treatment can really help.

LiquoriceNose profile image
LiquoriceNose in reply to Jaynelovestravel

Im so sorry for late reply!I know it feels like such a long wait it's an awful time.

Just try and relax and be positive until then (easier said than done I know, I was dreadful) Googling every hour of every day. Absolute worst thing I could have ever done because everything is TOTALLY outdated.

Anyway, lesson learned there.

Take each day as it comes.

Im so glad he lives nearby and you have each other. That's the most important thing 🥰

If you need to vent or just need a chat or anything then please message. Don't be alone and fret. There'll be days when you can deal with absolutely anything and days where you feel like you just can't cope. It's ok to have both.

Do you have family that you can chat to and be with too?

We're all so close we're very lucky.

I have a sister. We shared the appointments and radiotherapy appointments (Dad came with us on every single one, just for support). He just felt so helpless!

And I hope that work are being supportive of you too. That's a big stress.

Sending love xx

Jaynelovestravel profile image
Jaynelovestravel in reply to LiquoriceNose

Thank you so very much.

In a dark time it at least helps to have someone who can relate to this feeling. That means a lot. I’ve a supportive husband ready to help with practical things and letting me cry if I feel I need to. I’ve one brother but he lives a couple of hours away and has young children so it won’t be so easy for him to share the load with appointments.

My son is 17 and at home and is at least fairly independent and is close to my dad. Then my 19 year old daughter is currently studying in Madrid for four months and she’s keeping my dad updated on her travel antics and FaceTiming my dad, showing him the sights of Madrid and how cheap the wine and tapas are! That’s actually helping; which is good. We’re visiting her next week for a long weekend as the hospital team said it’s good I go relax and try and switch off. Then I’ll be doing a PCR test before seeing my dad and going to the big appointment for the diagnosis on 04 March. I’ll try and think of gambas pil pil 🦐 and Rioja 🍷 instead 🇪🇸

Have a lovely weekend, despite the weather. Sounds strange but I almost want to say hello to your mom from me as she’s a positive inspiration 😊

LiquoriceNose profile image
LiquoriceNose in reply to Jaynelovestravel

Awww well you definitely must get away and try and wind down. It'll be good for you. Everything will come in its own time, and trust me, once things are in place it'll fly by!It's lovely that you are a close family too and that's definitely a massive comfort to you all and your dad ❤️

I never asked anyone any advice on this forum and with hindsight I definitely should have because it would probably have helped somewhat.

I will absolutely say hello to Mum. She'll be so glad it's helping you to deal with a crappy time!

Obviously, everyone is different, but anything you need to ask please do as things progress.

If I cant help, there'll be someone on here who can.

You have a good weekend too.

We were supposed to be having a train ride to Southport but the weather has put paid to that, so it's chores and Monopoly this afternoon! (🤣🥊 ☃️☃️)

Speak soon 🥰

LiquoriceNose profile image
LiquoriceNose in reply to Jaynelovestravel

The biggest bundle of luck for tomorrow. Hope Dad is suitably full of another hearty dish and he absolutely wallops whatever is to come.

Literally everything crossed for the best possible news in the circumstances xxx

Jaynelovestravel profile image
Jaynelovestravel in reply to LiquoriceNose

You are so very kind and I saw your message this morning and read it to my dad before we went to hospital, expecting a diagnosis.

My dad has had three weeks of tests, has lost two stone over the past year and has finger clubbing since August but the medical teams are still flummoxed. The long but thin thing lighting up on the PET scan has grown and is on one lymph node before the airways separate into two lungs but nothing had spread anywhere else. Highly likely it is cancer, albeit it looks so unusual to the medics. Probably stage 3a or 3b. They can’t give us answers without more invasive testing.

They propose making an incision at the base of my dad’s throat and putting a camera in and going to the lymph node to start.

The medics haven’t seen anything like what my dad has. Having never smoked, the likelihood of it being linked to him having been a chemistry teacher seems to resonate with the professionals. Seems so unfair.

My dad’s appetite is still strong. He’s going for walks. My blood pressure is sky high but I’m trying to be strong. We now await more tests.

Your support and best wishes means a lot and I do really appreciate it xx

LiquoriceNose profile image
LiquoriceNose in reply to Jaynelovestravel

Oh I'm so sorry for late reply. We've been away to Keswick for a few days.Well, where do you even start with that news, given that everyone else is flummoxed?

The good news is it hasn't spread anywhere.

The next best news is it hasnt afffected Dad's appetite.

The further tests will hopefully reveal something for treatment to start very soon.

Mum has an op this morning on her ears where the flippin' radiotherapy mask caused pressure sores believe it or not?!!! Shes tried having them frozen and various creams, but nothing helped so an op it is ouch!

Then Dad has investigations this afternoon for his bladder/prostate/kidneys ... (he's 81).

It's a busy day here!

Please send your Dad lots of love and hope and please keep in touch xxx

Also, the massively important thing is to look after yourself and your close ones too xx

Speak soon

Jaynelovestravel profile image
Jaynelovestravel in reply to LiquoriceNose

Hello!

I did read your message when you sent it and your positive cheerleading is helping me and my dad :)

Life feels a bit like a rollercoaster and it’s the not knowing what the diagnosis is or what the treatment will be that is the hardest for me as I just want to move things forward.

The MacMillan nurse is so helpful and she’s been great being there for me when I have questions. I finally feel more settled as we now have a date for the biopsy; 22 March. Just having something tangible is grounding me better and I even caught myself singing in the kitchen the other day, reminding me of my usual self before my world turned upside down in the last two months.

I’ve stopped doing the things I normally would do as I’ve been so anxious and was very unsure about planning anything. My husband takes me to Chez Roux at Cheltenham Ladies Day every year as a treat but without knowing what’s happening when and the risks it’s been up in the air. My dad wants me to go but it was when I phoned the MacMillan nurse that I decided as she said I need to switch off and continue life as normally as I can, and obviously safely. She’s told me to go on Wednesday and then I will stay home and test every day so I know it’s safe to toke my dad for his biopsy almost a week later. (I’ve had Covid, double vaxxed and boosted but should I get it again I at least won’t have been near my dad and my brother will be the contingency to take my dad). I initially felt so guilty about having a day out but my dad is picking horses for me to have a little flutter on and I’m thinking about dresses and my hair fascinator and actually looking forward to a day of normality.

Then we can cross the bridge of a diagnosis and treatment post biopsy and take it one stage at a time.

I think the initial shock was an emotional tornado for me and my dad and I’ve over worried for everyone and have wanted to fight it and fix it. I’m not trying to accept more that there are things I can’t control and channel my energy positively. Harder said than done. My dad seems chipper, albeit I know he worries too which is understandable. Having facts and a plan will allow us to move forward.

Sorry for the long message but this is therapeutic for me too.

Hope your mom got on well with her ear op. Has it helped? How is your father?

Life isn’t always easy but accepting that and making the most of every day is definitely what counts.

Take care.

Locket39 profile image
Locket39

Hi Jaynelovestravel

I totally understand that you are worried! I am 40 and was diagnosed last March with stage 4 lung cancer. Don’t get me wrong it is very scary but trust me there is so many more treatments available these days!

I have had various treatments already and feel great. I stay active and try stay positive by doing things I enjoy! I still get scared when scan time time comes up but I now have more good days than bad!

Good luck to you and your dad xx

Jaynelovestravel profile image
Jaynelovestravel in reply to Locket39

Oh, wonderful news you’re seeing progress. Everything crossed for you and my dad x

Locket39 profile image
Locket39 in reply to Jaynelovestravel

Awww thank you. There have been some bumps in the road but I look at them as just a little blip that I deal with and then move on!

I really wish all the best for your Dad! I have signed up to do Race for Life this year to help everyone living with cancer! There is still along way to go but the treatments that are now available have really come a long way!

Stay strong 💪

Lucky2008 profile image
Lucky2008

Hello Jayne I'm my dads carer and hes my best friend, I was in the same position as you and your father , they fobbed my dads off as maybe just a lung nodule infection for months and found out in june that it's a lung cancer.. my dad as no symptoms apart from shoulder pain in both , hes 84 hes having no chemo as hes fit and still very well .. so if helps please stay positive I know it's so hard I cry most days (not in front of dad) I know roy castle foundation helped me so much .. fingers crossed for you both .

Jaynelovestravel profile image
Jaynelovestravel in reply to Lucky2008

Thank you so much for sharing that. It is a very emotional time and I’m scared of what may await us; but more for my dad than for me. Just hearing others understand this feeling and have been through it, and done with success, gives me some hope. It’s also good to know there is support and there are people out there kind enough to offer advice and support. That means a lot. PET scan day today. I’ll be my usual self for my dad to help him try not to worry. Thank you.

Lucky2008 profile image
Lucky2008 in reply to Jaynelovestravel

Ahh I know its really helped me cope .. fingers crossed for your dad today .. and take care 😘

DudleyBoy profile image
DudleyBoy

I hope you see my post...

Jaynelovestravel profile image
Jaynelovestravel in reply to DudleyBoy

Thank you, I have. Any kind of hope and positive stories are very much appreciated.

Jaynelovestravel profile image
Jaynelovestravel

Latest update is that after two very long months I’m going with my dad this Friday for the diagnosis and treatment plan. Have everything crossed

Danni54 profile image
Danni54 in reply to Jaynelovestravel

Hi. I read your initial post first so I'm a bit behind! Sorry! I blame the morphine! I just wanted to let you know that I am thinking of you and your Dad . I adored my Father but he died of a heart attack 20 year's ago with appalling treatment from our hospital but I completely understand how scared you must be but as other's have said , treatment now has changed so much and thing's are much more positive. Please look after yourself as well as your Dad because you are important too so spoil yourself! Am thinking of you both. Very, VERY best wishes to you both.

Danni xx

Jaynelovestravel profile image
Jaynelovestravel in reply to Danni54

Thank you so very much. At least we have a diagnosis now and just need treatments to start so we can move forward. I’ve everything crossed for a positive outcome xx

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