Looking for hope?🤗: Hi everyone, I’m... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Looking for hope?🤗

Kbucie
Kbucie

Hi everyone, I’m new to this group and not too sure how it works?! I was diagnosed at the end of September and I just feel like my world has imploded. Im only 4 days into my diagnosis and feel scared, then positive and then complete panic.

I’ve had contrast CT and that picked up a 2cm mass at the top of my right lung. I am now waiting to fly to Southampton hospital for a PET scan. I received my appointment for a lung function test today and that’s for 30th October. I feel all over the place. Would the contrast CT picked up any spread to other organs and lymph nodes, or is thar only diagnosed at the PET scan? I believe they are hopeful for curative surgery. Which terrifies me, but I also understand how lucky I am to have that option.

Any advice greatly received

Thank you.x

24 Replies
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Hi. I had a 3cm Adenocarcinoma diagnosed 2 year's ago. It had shown on an Xray 16 month's previously but our hospital omitted to let anybody know and eventually I had pneumonia and my wonderful Thoracic Consultant sent me for C.T. Guided Biopsy, PET Scan etc. and then the shock of diagnosis. I had to have an upper right Lobectomy and I was scared but it wasn't as bad as I thought although it was painful when they took the drain out 2 day's later but that only takes seconds! I was in for 4 day's and then we had a 4 hour drive home and that wasn't great so take a pillow and don't lie on your right side because it hurts! The hospital will get your pain under control before you leave and you will find it takes a few weeks to get some of your energy back but spoil yourself and you will get there. It's a horrible time just now for everybody but for those diagnosed with cancer it's even more scary.

Please keep posting here because the support is wonderful and the advice will really help you. Do you have support at home? It helped me to keep telling myself that I had a core of steel and would get through and I did! Everybody on this site is here to support you. Please take care, keep safe and ask whatever you like and let us know how you get on please.

All the very best Danni

Kbucie
Kbucie in reply to Danni54

Morning Danni

Thank you for your reply. I hope that once I have a treatment plan on board it will help, as at the moment I don’t really know what’s happening? I’m also concerned with the increase of Coronavirus and that affecting my treatment?

Sadly we have to go off island for quite a few cancer treatments, as we don’t have the facilities.

I’m trying my best to keep upbeat and positive and I will beat this!

I’m so glad your treatment went well and thank you for all the little tips and heads up!

K x

Danni54
Danni54 in reply to Kbucie

Me again. I don't know how Covid will affect your Lobectomy and this is the big worry for all of us who have or have had cancer. You should be able to phone your Consultant's Secretary and see whether you have been allocated a Nurse or ask whether you could have a phone consultation with your Consultant. It's good to write down question's because when you have had a cancer diagnosis your brain goes walkabout! I know that Southampton is a busy hospital and although you have to go through a painful and tiring time there is so much they can do now and VATS Lobectomy is amazing . I read up on everything so that I was prepared but some people don't want to know. When you go to hospital don't forget your disinfectant wipes!

Please be careful and try to put you first and accept all the support you are offered. I will be thinking of you and send you a hug.

All the very best,

Danni

I have had a 58 mm tumour too right lobe.

Mine was inoperable but the tumour was treated with chemo/radio. It has shrunk to 33mm and the Dr says it’s now a shell of what was. I’m over one year remission 4more to go and now I see the Dr every 4months.

It also was in one lymph node.

The pet scan should show if it has gone to other areas.

My pet scan was actually better results than the CT

Stay positive x

Kbucie
Kbucie in reply to Kalilou2

Thank you.

Are you still receiving treatment and did they remove your lymph nodes?

K x

Kalilou2
Kalilou2 in reply to Kbucie

No surgery at all as I was inoperable

No more treatment for now x

Hi Kbucie, I see you have already had some good re assurance from Danni . 8 years ago I was diagnosed with 2 primary tumours on my right lung. apparently unusual to get 2. I was the same as you at first but believe me you will be genuinely looked after. I ended up having my whole right lung removed due to having 2 tumours in 2 places of the lung. I was terrified but I honestly was fine. Yes I can still get out of breath now and again, but I am here to tell the tale.

If you have a cancer nurse specialist assigned to you , dont be frightened of contacting them with the slightest of concerns from treatment to appointments. They are wonderful and I found mine so helpful. Also this site has contact numbers for advice.

I wish you well . :) xx

Kbucie
Kbucie in reply to jillygirl

Thank you and I’m glad you are doing well. The responses I’ve had are very positive and helpful. I haven’t been told if I have a cancer nurse yet???

Maybe it will happen after my PET scan? Are you on any long term medication?

x

jillygirl
jillygirl in reply to Kbucie

No I have a nebuliser but to be honest I was a smoker so would probably have needed one anyway.

I now help with the Roy Castle lung foundation by running an on line quit smoking forum.

You will be fine. Make sure you ask for a nurse if they dont offer. :) xxx

The worst part is right now the diagnosis to treatment. It takes a little time as it’s very tailored to you and they want to get it 100% right for the most successful outcome for you. Once you have the plan you will feel much better. But like the others ask them what the plan is when they will know etc. As it will be you in charge of your treatment. I didn’t have surgery mine had spread too much but I’m ok Chemo and Immunotherapy and it’s working which is the best we can all hope for. I was not in a good place the first 6 months but once treatment was in place and COVID allowed me to start living a normal life again this all helped. It’s also ok not to be ok too. Patience will help but much easier said that done. Good luck with your treatment all the best x

Kbucie
Kbucie in reply to DaisyFlower06

Morning, thank you for replying.

I’m hoping that when I have a treatment plan I will feel better too. I think it will give me something to focus on and I will know what is going to happen next?

I’m glad you’re recovery is going well for you, take care.

K x

I cannot imagine how you feel at the moment. I send hope that it is operable. Please keep talking at this difficult time. Sending you a hug.

Hi Lucie

I'm sorry that you find yourself with this awful illness but for advice understanding and support your in the right place.

I was diagnosed eight years ago now , in Sept 2012 after a CT scan found a tumour which was over 6cms in size .

I had a PET scan which is a much more detailed scan and can detect any small spread , thankfully there wasn't any and I had surgery to remove my upper right lobe in October . I then had three rounds of adjuvant chemotherapy an extra precaution just incase and due to the size of my cancer , I think if tumour is less than 4cm chemotherapy is not always prescribed .

Well here I am eight years on recovered and in remission I'm thankful everyday .

You are in a good position as your cancer appears to have been diagnosed early enough for a curative outcome . The surgery is tough but a VATS procedure I understand is less invasive , hope you are a candidate for that procedure and if you need Chemo it is doable I promise .

I send my best wishes for a successful outcome , take care .

Jane

Kbucie
Kbucie in reply to janeg4

Thank you Jane, this group is very positive and inspiring.

I’m so glad you are doing well.

K x

Hi, I had my right lung removed in May of this year after having a mass on the bottom lobe, it was in a funny position which is why I ended up with the full lung removed but had part lung removed first then 6 wks later surgery again to take the rest of it due to lab results. It's a bumpy road but you are lucky to be operable, I am now clear with no further treatment so it was the best way for me. I'm walking 5 miles a day and back to work full time, I still have good and bad day's. The Pet gives full details but it is normal to have that scan. Good luck with everything and stay positive it really does help. ☺

Thank you for you’re reply and I’m so glad that you are doing well. It really is a bumpy ride of emotions, not just for me but my family too!

K x

RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear Kbucie

Welcome to the forum and as you can see there is plenty support and encouragement for you here. Sorry to hear you have lung cancer and it is encouraging that the doctors have mentioned curative intent.

It is a bit of a roller coaster of emotions, one minute you are fine and the next out of the blue you feel very emotional or fearful. This is all very normal and this link provides some information on this from Macmillan support:

macmillan.org.uk/cancer-inf...

A CT scan will show any abnormal growth areas including enlarged lymph nodes.

The PET scan will provide more detailed imaging from the dye (radioactive drug) that shows up any abnormal cell activity, including the lymph nodes. However, at 2 cm in size, it is hopeful that it may be contained within that area of the lung.

Prior to any treatment it is normal to have full investigations to ensure all areas are checked.

This link will take you directly to our booklet on 'Managing your lung cancer diagnosis' where it explains, investigations, staging of cancer and treatment options:

roycastle.org/app/uploads/2...

This link is to our booklet on lung surgery, which provides a lot of information before and after your surgery, including after care at home:

roycastle.org/app/uploads/2...

You may find this link of interest as it provides many inspiring accounts from those that have had lung cancer: roycastle.org/campaigns/lik...

A lung cancer nurse specialist may be allocated to you at your next Consultant appointment and if not you can request one there and then or through your GP

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

Wishing you all the very best

The Roy Castle Support Team

Thank you so much for your support.

I will have a look at the links now.

K x

It's very scary at the point you're currently at - too many unknowns and a wealth of inaccurate outdated information online if you google! Please don't!

The contrast CT would show things on the area that was scanned (may have been chest or chest and abdomen) but the PET is usually used to highlight more details if surgery might be an option so try not to panic.

On 15/10/10 I went to A&E with strange symptoms for me and a chest x-ray showed a lesion on my left lung but I was discharged, readmitted the next day and kept in for 6 days and treated for 'uncontrolled asthma' despite not having had that for decades and it feeling quite different. I didn't get a CT scan as I was coughing too much to lie still in the scanner so told I'd be sent for one later. As a never smoker it wasn't considered urgent and the steroids and inhalers eventually calmed down the symptoms. Over a month later I had the CT then a few more weeks for the result then sent for PET scan. Just days later I was phoned to see the thoracic surgeon the next morning (my appointment had been made for the following week) and told I needed surgery to remove half my left lung and the 'mass'. He explained that the lungs are different - the left lung has two lobes and the right one has three so if you lose a lobe in the right lung that's a third of a lung but the left lobes represent half of that lung. Despite having had asthma as a child/young person I'd never known that.... I also learnt that many people had a whole lung removed as a treatment for TB (including my uncle but I'd not known that either) and lived their lives. It's quite hard to comprehend that we can function with parts of our bodies missing but it's possible...

I had surgery on 16/12/10 and diagnosed on 13/1/11 with non small cell lung cancer - the tumour removed was 7cm. The specific type I had wasn't evidenced to respond to chemotherapy so that was my only treatment and follow up was regular 'surveillance'. I was back at work and swimming within 3 months and went onto swim much further than I'd done before (already swam 130 lengths several times a week). I work full time, travel and swim and lead an active life. If surgery is an option, there is really useful information on Roy Castle site with details about what to expect. At the moment it isn't worth bombarding your mind with all the different treatment possibilities as many may not apply as once the results of your PET scan are known, you will be discussed by a multidisciplinary team to determine the most appropriate treatment and assigned a consultant from whatever discipline is most appropriate (surgery/oncology etc) They will explain the results of the scans and explain the next steps which should include giving you a contact (often a specialist nurse) and answer any questions.

I started fundraising for Roy Castle lung cancer foundation as there was very little information around back then, no online support groups and I wasn't allocated a cancer nurse specialist. There are more of them now but still variable access across the country.

I became involved in lung cancer research at the end of 2013 and attend various conferences and committees. The situation is nothing like it was 10 years ago - so much more is known now and many treatments have changed including surgery now being majority keyhole (mine wasn't). I was in hospital for 6 days with surgery.

There's really useful information on Roy Castle site which is trusted as it's written by clinicians and reviewed by patient panel (I'm on that) and regularly updated.

However treatments are introduced all the time.

Surgery is usually done with 'curative intent' and I hadn't appreciated at the time how few people were clinically eligible for it so thankful for every day I've had since.

Good luck with your treatment - let us know how you get on.... roycastle.org/about-lung-ca...

Kbucie
Kbucie in reply to JanetteR57

Thank you so much for the information and taking the time to reply.

It’s a fantastic group of people on here. Very positive and supportive. It’s great to have somewhere I can go and freely ask questions, I don’t want to overload my husband. Bless him he’s just been amazing at supporting me at this horrid time, while dealing with his own feelings and worries of what is coming our way!

I will keep you informed and thank you for caring.😊

K x

Hello completely emphasise with how your feeling right now. I have recently been through this. I had a Carcinoid tumour in my bronchial tube and had a bi-lobectomy on my right lung in July this year. I am 11 weeks on now and doing well. During the time of waiting for a diagnosis it was an emotional rollercoaster, but once I had a diagnosis and a plan of surgery I felt more positive. Going through this during a pandemic has been hard but lots of advice and support available. I was advised to shield before and after surgery and during my recovery, I am still being cautious as I can be, but I have gone back to work now. I also had CTScan and PET scan. The PET scan should show up any areas they are concerned about which should help them give you a proper diagnosis. Depending on your diagnosis and treatment, ask for all advice on shielding and Roy Castle lung foundation very good for advice and support. Keep us posted and hope you get a diagnosis soon.

Kbucie
Kbucie in reply to Becky130777

Morning, sorry I’ve just seen your reply🤦🏼‍♀️

I’m glad you’re doing well. How was it going back to work and are you more concerned now about the Corona situation since you’re diagnosis and surgery?

Take care

K x

Becky130777
Becky130777 in reply to Kbucie

Hello Kbucie, I did feel nervous going back to work as I had a long period at home. My diagnosis actually came about because I had pnemonia in February which I couldn’t seem to get better from. So luckily my manager was understanding and let me work from home until my surgery. Although during the period at home my husband worked all throughout the lockdown and my children went back school in September so my risk is probably no higher going back to work. I also work in an office where we can self distance and we glass screens up between desks and we have lots of hand sanitizer . So everything has been done to make us feel safe. I am more cautious in aspects of my life I haven’t been to pubs or restaurants and we do click and collect for our weekly shop. I would be lieing if I said wasn’t anxious about things, but I feel I need to get back to at least some normality and it’s definitely helped my mental health having the routine of work again. Wishing you all the best, keep us posted with how you are doing.

Kbucie
Kbucie in reply to Becky130777

Mine was found by accident too! Sadly my mental health took a severe plunge coming to the end of lockdown and I ended up in hospital for 4 days after taking an overdose. It was while in hospital they found it on an Xray, every cloud!

I went back 6 weeks later for a second Xray and no improvement, they also thought it was pneumonia too initially. Then had my contrast CT and the rest is history, as they say!

I’m working at the moment, but anxious about the flights to the UK for my treatment and that COVID will delay any treatment I require?🥺

K x

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