RoyCastleHelplineAdministrator

Dear Christine2020

Welcome to the forum and so sorry to hear about your Mum and the shock this must be for you all.

This must be an extremely frightening time for your Mum and we often think of the worse thing that could happen which can become difficult to see any other way, hopefully once she has all the information from the consultation it will be clearer what treatment options there may be for her.

Any staging of Cancer is given by TNM, which is, T for tumour size, N for any lymph node involvement and M for metastasis or spread to another organ. Staging can be graded from 1-4.

This link will take you directly to the lung cancer staging , which is broken down in great detail into each stage from Cancer Research UK: cancerresearchuk.org/about-...

We have a very informative booklet on 'Managing your lung cancer diagnosis' which also explains staging, what treatment options there may be and what questions you can ask at the specialist appointment: roycastle.org/app/uploads/2...

Lung nodules are not always cancerous and may be monitored over time to assess if they enlarge or stay the same, unless your Mum has been told they are cancerous.

The biopsy will determine the type of lung cancer it is and what would be the best treatment options and outcome for your Mum.

If surgery is not an option, other treatments that may be offered are radiotherapy, chemotherapy and if eligible Immunotherapy or targeted therapies.

Immunotherapy and Targeted Therapies are only suitable for those who have certain cell mutations or proteins present in their biopsy in order for these drugs to work best.

Our website contains booklets on treatments and can be found on this link:

roycastle.org/help-and-supp...

There are many encouraging stories from those who have experienced lung cancer and can be found on this link: roycastle.org/campaigns/lik...

If you would like to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our freephone nurse led helpline number on 0800 358 7200 (Monday to Thursday 0900-1700 and Friday 0900-1600)

Kind regards

The Roy Castle Support Team

Christine2020 in reply to RoyCastleHelpline

Thank you so much for your detailed reply. I’ll definitely have a look at the links you shared. I think we will all feel more at ease when I plan is set out for my mum, it’s this waiting and not knowing that is driving us all mad. From what you say there seems to be a lot of different treatments available out there, so hopefully at least one will be well suited for my mums type of cancer. Thank you again

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RoyCastleHelplineAdministrator in reply to Christine2020

Dear Christine2020I am sure you will find the information helpful and sometimes being informed as much as you can has the advantage for both you and your Mum, perhaps feeling more assured in what questions you want to ask and you will have a better understanding of what is being said or proposed at the consultation.

All the very best

The Roy Castle Support Team

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simlut

Hi Christine, it is such a shock when they tell you it’s lung cancer. My dads was confirmed at the end of September after his CT scan, we are all still in shock and disbelief this is happening.The waiting and not knowing is so hard and makes you ill with anxiety. Myself and my mom have had to go on antidepressants and my dad takes sleeping tablets.

My dad had his biopsy results 11 days after the biopsy which confirmed he had stage 4 Squamous Cell Carcinoma. He then saw the Oncologist 10 days after that to get more information and a treatment plan.

My dads has spread outside the lung and he’s having chemotherapy and immunotherapy.

Sending lots of prayers for your mom and big hugs to you all xxx

Christine2020 in reply to simlut

I’m so sorry to hear about your dad. I understand completely how you and your family are feeling. It’s the waiting then hearing something then waiting again it’s too spaced out I want it all done yesterday! 🙈 I know the professionals will do all they can. My mums timeline seems a lot similar to your dads. Mum had her biopsy and yes we have around 12 days to wait to get the results. Not long to go now. Just out of curiosity, will your dad be starting his treatment this side or Christmas or is that another waiting game for you?

Thank you for replying xx

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simlut in reply to Christine2020

My dad had his first treatment cycle 9 days after seeing the oncologist and his 2nd cycle last week. His 2nd cycle was delayed for 9 days because my dad broke his femur 5 days after his first treatment and had to have surgery to put a rod and pins in his leg from his hip to his knee. He was in hospital for 10 days.

The cancer is in the bone that’s why his femur broke so easily (he fell up the top stair) so he’s having radiotherapy in his femur next week.

My dads treatment plan is 4 cycles of chemotherapy Carboplatin and Paclitaxel and immunotherapy Pembrolizumab with 3 weeks between each treatment. He will also be having Denosumab a Bisphosphonate to help with the cancer in his bones, it strengthens and protects the bone.

My dad has Filgrastim injections which I administer into his stomach for 7 days, from the 3rd day following chemotherapy, this helps to keep the white blood cells up to increase the immune system.

One thing I will say, if your mom has any teeth issues get them sorted ASAP as you need a healthy mouth before you start treatment and my dad had to have 2 fillings and a tooth removed which has delayed his Denosumab treatment till the 3rd cycle xxx

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Christine2020 in reply to simlut

Oh my goodness what a rollercoaster your dad has been on (and you/your family!). Your dad is a trooper! Thank you again for going into detail will all the certain types of treatment he is getting, I’m sure I will soon hear those big words and understand them when mums treatment starts xx

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Eglingham

Hi Christine, sorry about your mums diagnosis the waiting is a scary time but there is many treatments out there and you will feel much better once you have all the info and a plan. I was diagnosed in February of this year and felt exactly the same even started to plan my funeral 😔 but then I was given the details and the plan. I then started to focus on the plan and what I needed to do. It's difficult but positive thinking is important to the process I think. Stay strong and hope you get all the info and plan soon. Xxx

Christine2020 in reply to Eglingham

Thank you for replying & I’m So sorry to hear you going through it. Your completely right, at the start of diagnosis you just automatically think the worst is going to happen. Mum, all of us, will definitely feel better once there’s a plan in place and treatment starts. The not knowing is the scariest part. I hope your smashing it with your treatment and all set to enjoy Christmas 🙂 xoxo

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Eglingham

Thank you Christine ☺ thankfully I have come out the other end with a good result and need no further treatment. Stay positive cancer treatments are so advanced now and things can be managed for many years. Keep us updated on how things go. Sending positive thoughts and virtual hugs. Xx

JanetteR57

As others have said, they're very scary words ' it's lung cancer' and our minds automatically think of how poor we think the outcome might be.

Things have changed considerably in recent years. In Oct 2010 I went to A&E and a chest x-ray revealed a 'lesion' on my left lung' it was 2 weeks after my 52nd birthday and I was fit and active. After some delays and initial misdiagnosis as uncontrolled asthma, CT and PET scan revealed it to be more serious and I was told surgery to remove half my left lung was my only option. I had surgery in Dec 2010 and diagnosis in Jan 2011 of non small cell lung cancer. (more detail than that but 7cm tumour removed). I was back at work, swimming and travelling 3 months later. Keeping active is really important - before and after treatment.

Since 2014 I've been involved in lung cancer research and worked with and met many patients who have survived even 20+ years before some of the newer treatments were available.

Every type of treatment has changed in the last 6 or 7 years and only a small percentage are clinically eligible for surgery so she shouldn't worry on that front. Radiotherapy includes ablation (known as SABR/cyberknife) that can be used in some cases with equal effect as surgery.

Many people have nodules in their lungs and many do not develop into anything sinister - some respond to inflammation so can change in size on imaging over time. They are the equivalent on the inside of our lungs to freckles/moles on our skin - many people have them but not many develop into anything dangerous. If she has 'systemic therapy' - treatments that affect the whole body (chemotherapy, radiotherapy, immunotherapy, targeted therapies) then it will be hoped the tumour and nodules would respond.

Today's treatments often involve different types of treatment and the pandemic has changed things - enabling people to have treatments in different timelines or orders even having immunotherapy if they might not have previously been eligible.

Unfortunately testing takes time to get the results but until they have all these, the multidisciplinary team who will look at these results to determine the clinical lead for her care cannot preempt what will be most useful to her. Lung cancer treatments are much more personal to the patient based on the biological make up of the tumour, patient's genome, other conditions/health/fitness etc. Occupying that space whilst waiting is vital to try and avoid unnecessary anxiety.

Distraction helped me - try not to google as generally the internet is woefully out of date and inaccurate but trusted information that is regularly updated by clinicians and reviewed by patients is that on Roy Castle lung cancer foundation's website written in plain English and illustrated too. It also suggests questions she/you might like to ask at the time treatment is discussed. good luck to you and your mum.

Christine2020 in reply to JanetteR57

Thank you so much for that detailed response. You made some very good points to think about and look into. I’m usually, generally quite a positive but the minute you hear the C word you just jump to conclusions! You definitely have put my mind at ease, I’ve given myself a shake and sure we just have to take it as it comes. Thanks again! Xx

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JanetteR57 in reply to Christine2020

I don't think any of us appreciate how many different types of cancers there are even with a heading like 'lung cancer' until we're forced to face it. It's good news that for now hers is contained within the lung so hang onto that for now.... we also assume all chemo is the same or radiotherapy and there are so many different agents/ways of giving it/doses/timings etc and the pandemic has impacted many of them differently so even if somebody had exactly the same as she did, it may be treated differently now. it's hard but better for all your mental health to focus on the 'what is' when you know it than worry about the 'what if' which may not happen at all. thinking of you. x

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Christine2020 in reply to JanetteR57

So my mum is due to get her results of the bronchoscopy this Tuesday coming. She got a call this morning saying she needs to go for another bronchoscopy next Thursday. I’m confused, is this something that happens a lot? There was no mention of Tuesdays meeting being cancelled so as far as we know she’s still getting that. I just hope this doesn’t delay things xx

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JanetteR57 in reply to Christine2020

sometimes they're unable to take the samples they want due to inflammation - that's happened to me on one of my more recent bronchoscopies - I coughed so much and they said all they'd been able to take were bronchial washings but for some tests they need 'brushings' or a biopsy so maybe that's the reason. try not to panic - if they've not said anything about moving Tuesday's meeting then gather all the questions you/she might have for that..... never be afraid of asking for more detail as her clinicians can answer much more specifically than we can on here... it's not common but it does happen.... and a bit like my first mammogram when I was recalled and feared the worst, they said it was likely I'd moved in the unit which gave an inaccurate reading so had to be redone... bronchoscopies are investigative tests so it would seem that they've been unable to achieve what they wanted so wanted to try again.

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Christine2020 in reply to JanetteR57

Thank you for your quick response, again. I’m going to try and not look too much into it and its good that they are being thorough I guess xx

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Christine2020 in reply to JanetteR57

Just an update on mums meeting today regarding her biopsy. They told her that the mass is 7cm and the sample they took showed no cancer just inflammation. They told us not to get our hopes up. Mum is going for the second biopsy this week, this time they said it will take longer as they are going to get a sample from deeper within the mass to check it for cancer and we will hear the results next week (not as long to wait this time).

I understand I can’t get too excited about this but surely it’s a positive of some sort? Praying the second biopsy shows the same result as the first xx

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Golfersrest

So sorry to hear you are all going through this. I was diagnosed in October, at 41 stage4, my cancer is within the lung and the lining...(making it inoperable). As everyone has said the shock and waiting is the worst part but when you have some answers and an A game your mum will be able to fight this with all her might.

I have been on my treatment for eight weeks and recently had my first update which was a decrease in tumour size of more than half.... I would never of believed this to be possible, and was terrified it wasn’t working. Especially when they said it was a very large tumour. Please also try and remember Palliative care can mean a lot of different stages of care and different options as I’ve found out so try and remain positive and go at this head on. (Which I know some days will seem impossible). Sending you all love and good vibes for some positive results.

Christine2020 in reply to Golfersrest

Thank you for your reply and I’m sorry to hear your going through it but remaining positive definitely helps the mind set. An update on things, mum had her meeting today and they told her that the biopsy came back and showed no signs of cancer. He did say not to get our hopes up as the mass is 7cm and the biopsy was taken from the edge of it. They want mum to re do the biopsy this Friday and they are going to take a sample from deeper in the mass to see if cancer is present and they will give her the results next week. I’m trying not to get my hopes up but a part of me is extremely happy to hear this considering I was fearing the worst this morning before the meeting. Have you ever heard of this happening before? I know the doctors can’t come out and say she’s got the all clear until they do all the tests they need to but surely a biopsy coming back non cancerous is a positive? My head is so confused right now xxx

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JanetteR57 in reply to Christine2020

Like you, Christine, I'd be keeping positive - my 'mass' was 7cm (x 2.9 x 2cm) when removed and was non small lung cancer but it was surgically removed with half my left lung 10 years ago. There are people who develop benign tumours and when I asked my surgeon who told me about the op whether he needed to do a biopsy, his response was 'we can clearly see a large mass on all the images, chest x-ray, CT and PET and at that point it was over 2 months since it had been found, and he said it had to be removed anyway then sent away to pathology to determine what it was and any follow on treatment. When given my diagnosis I was also told the specific type I had didn't respond to chemotherapy so that wasn't being offered so my follow on treatment was 'surveillance'. In those 10 years treatments and pathways have changed a lot and recently had to change again due to covid 19 but yes, it is common for a tumour to have cancer cells in some parts of the tumour and not in others, or even more than one type of cancer within the tumour which is why it's important to rebiopsy in a different place. Hopefully it's benign but even if not, there are treatment options so don't allow your current optimism to fade until the actual position is confirmed by pathology. they may still decide the mass needs removing even and whilst they're still investigating, this cannot be classed as 'all clear'. nowadays more surgery is done by keyhole in the UK than open thoracotomy (which I had) so involves shorter stay in hospital and generally requires less 'fitness' on the part of the patient. do let us know how the second test goes. good luck.

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Christine2020 in reply to JanetteR57

I will keep you updated, at least not as long to wait this time, thank you xx

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Golfersrest

Aw that is good new so far, I have everything crossed for you that the new biopsy comes back with the same results and they can deal with the mass.... please keep us update, I have everything crossed for you all. Much love. X

Christine2020

I will. Thank you for your support xx

Christine2020

Hope everyone had a lovely Christmas. Just keeping you all updated on mum. So after her EBUS they brought her in to discuss the results and they have ruled out lung cancer!!! They seem to be pretty certain it is cancer but now they are leaning towards lymphoma. Last Tuesday mum went for yet another biopsy, this time it was a needle in the back while on a CT scanner. She’s been passed on to the haematology department and we are currently waiting to hear back the results from that. I know very little about lymphoma just that it’s a blood cancer. You would just assume a 7cm mass in the lung to be the obvious lung cancer. Can a mass in the lung be lymphoma? It’s all so confusing but I must say we’ve all felt a sense of relief as just from the little research we’ve been doing into lymphoma it seems very curable. Xx