Introductory hello … newly diagnosed

[mishamilo53]

hello everyone thought I’d pop on say hello as only just joined the forum tonight …. Ive recently received the result of my ct scan and it shows a tumour right lung , have been referred to MDT and now on the stressful wait for what comes next …. I’m so scared , heard lung cancer and thought the end … and my emotions are all over the place as you can imagine ….. I know we have to wait for all the pieces of the jigsaw to come together before they can decide on a treatment plan etc but this is all so distressing and I’m not always coping …. I’ve just read the info booklet on here about what to ask at the meeting , the types of cancers etc and the feasibility of treatment for each and just scared myself more with the information. …and I end up down the what ifs road …. I just read that one of the cancer types suggest if you have headaches which I have it could be it’s spread , and now I’m anxious about that ….. any help or support would be appreciated thank you

[Elt79]

So sorry you’ve had to joking this club! Totally empathise with you as am sure everyone on this forum does. I’m coming up to 4 years since diagnosis which I truly was never expected to see to be honest. Diagnosed Stage IV NSCLC with brain and adrenal mets in October 2018 so far treatment, immunotherapy and radiotherapy, has kept me well. I try to stay positive, not always easy I admit particularly during Covid lockdowns etc.

Hopefully you will feel better once you are able to discuss your treatment options and have a plan for treatment. I wish you all the luck in the world and strength to deal with this - treatment is improving all the time. Try not to look at statistics!! Not helpful to be honest we all respond to treatment differently. Best wishes x

[mishamilo53 in reply to Elt79]

many thanks for your kind reply I really appreciate it and for sharing your story . It’s this unbearable wait and the fear that if I’m not coping now how will I cope with what’s to come …. Good luck with your continuing treatment

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Mishamilo53

Welcome to the forum, all be it under the circumstances of having lung cancer. We are sorry to hear that for both you and your loved ones.

It can feel quite isolating and overwhelming not knowing what is coming next, however, there have been many advancements in the treatment of lung cancer and if you are looking anything up online, we would advise you to use websites that provide accurate and up to date information at roycastle.org, cancerresearchuk.org or macmillan.org.uk

Some people like a lot of information, others find it too much. If you feel you want further information, you can find our booklets, from diagnosis, treatments and living with lung cancer through this link: roycastle.org/help-and-supp...

We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp...

The forum is a great place to find support and encouragement from those who are living with lung cancer. Our campaign section provides encouraging accounts from those living with lung cancer: roycastle.org/campaigns/

The Maggie’s centres are a great place to have a cuppa and a chat, they provide practical, financial and emotional support, most of the sites are based within cancer care hospitals and you find information on this through this link: maggies.org/

Please do not hesitate to contact us if you would like to discuss anything, you can email ask the nurse at [e-mail] 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

[mishamilo53 in reply to RoyCastleHelpline]

thank you for the welcome and information

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Mishamilo53

I meant to add that your headache could be anything and unrelated to your lung cancer, but with any new or worsening symptom, it is always advisable to let your GP or oncologist know. It is understandable your worry and anxiety, please know that you are not alone and you can contact us to have a chat.

Kind regards

The Roy Castle Support Team

0800 358 7200

Monday to Thursday 0900-1770

Friday 0900-1600

[e-mail]

[mishamilo53 in reply to RoyCastleHelpline]

thank you so much for your kind reply. X

[Rental]

Hello mishamilo, So sorry that you feel you’re not coping but it’s understandable. I’m in exactly the same position as you i.e. newly diagnosed , right lung tumour and still waiting for my first appointment with the oncologist - it’s been four weeks now. The waiting is the worst and I’m sure once you’ve got a treatment plan in place, you’ll find you’re able to cope much better. I’ve read lots of reports of people beating this horrible disease so as everyone will advise, try and stay positive. You never know how strong you really are until being strong is the only choice you have, and you can do it. Best of luck in the future x

[mishamilo53]

thank you So much for your reply and I’m sorry you are going through the same situation , have you had all your biopsies , pet scans done ,? I’m still waiting for referral to the MDT etc so really do feel in No man’s land at the moment

[foodbankcupar]

I was diagnosed with cancer in my right lung seven years ago it was treated with chemotherapy first then four weeks of radiotherapy. Unfortunately it had spread to lymph nodes on my neck.

I was treated with immunotherapy for two years and results were positive.

That was then and now seven years later it is in remission. Has been for a year.

You will get a Pet scan I'm sure which checks your whole system.

If you can try to stay positive. I have done all along.

This year I've been treated prostate cancer successfully.

Be strong

Kevin

[mishamilo53 in reply to foodbankcupar]

thank you for your reply and positive story Kevin I really appreciate you kindly sharing it with me ….. long may your remission continue . Good news re the prostate too

[IanM1957]

Hi mishamilo53,

I'm sorry to read about the situation you're in - it sounds like you're pretty much where I was 3 years ago.

I know it's easier said than done but try not to jump the gun with regards to diagnosis/treatment/prognosis and for heaven's sake avoid the temptation to search Google for "answers" - stick to websites such as The Roy Castle Lung Cancer Foundation; MacMillan Cancer Support and Cancer Research UK.

I expect you already know that a Multidisciplinary Team (MDT) is an informal team of medical professionals in cancer care which usually comprises of a thoracic surgeon; oncologist; radiologist; specialist cancer nurse and others) which you will probably never meet as a "team" although you will, in due course, meet some/all of them individually. Generally the MDT meets once a week to discuss and review the diagnosis and subsequent treatment of new patients with suspected cancer and the on-going care and support of existing patients.

It seems that you've already started the diagnostic phase of your "journey" with the CT scan - the MDT may decide to proceed with a biopsy and/or PET scan and then plan the treatment phase with the benefit of the results of those diagnostic tests.

In my case my feet hardly touched the ground following a CT scan in August 2019 (for something entirely unrelated) when an eagle-eyed radiographer spotted an abnormality in the base of my right lung, Within 3 months I had a more detailed CT scan; a biopsy; a PET scan and eventually surgery in the November to remove the lower lobe of my right lung containing the two tumours. I had to wait until early January 2020 for a final diagnosis of the tumours and then had 3 cycles of chemotherapy which finished just as the country went into the first Covid lockdown.

So far all the follow-up scans have been positive.

Stay strong and try to be patient.

[mishamilo53 in reply to IanM1957]

thank you for sharing that with me I really appreciate your reply , I have finally, this afternoon got an appointment to see a respiratory consultant for the preliminary chat and the breathing tests so maybe things are moving …. I hope you stay well it sounds like it was caught early and what an amazing radiographer to spot it

[IanM1957]

That's good news that you now have an initial appointment - you'll have to keep us updated on how things progress,

I feel very fortunate in that my cancer was caught early on before there was any obvious spread - I've got nothing but praise for our NHS for the speed and efficiency in the way they dealt with me,

[mishamilo53]

mine was spotted by an eagle eyed a and e doctor when he was looking for post covid blood clots , the original doctor said the X-rays were clear ( of blood clots ) and to repeat in 3 months but this chap wasn’t happy with it when he looked and arranged the CT scan which was a shock because i had left a and e thinking all was well ….. I’m grateful to him for not accepting the original doctors recommendation

[sassassas]

Hi mishamilo53

I'm sorry to read your post. I just wanted to give you some reassurance that a lung cancer diagnosis isn't the end of the road at all, there are some fantastic treatments available now, many of which have few side effects. My husband was diagnosed 18 months ago (stage 4 NCSLC with extensive cancer in his lungs, nodes and bones) and is responding really well to immunotherapy. He's now "NED" - no evidence of disease and has been for the last year.

It is completely normal to stress about every ache and pain. If my husband comments on anything about himself, particularly headaches, I immediately jump to the conclusion that its the cancer. I can tell you I have wasted a lot of time worrying unnecessarily! We were told to keep an eye on anything different, and if it went on for longer than you'd expect, then to get in touch. Given the stress you must be under, it would be a surprise not to have a headache!

Most of us on here will tell you that the worst time is waiting for the completion of all the tests, and waiting to get treatment plan. It seems to be a little easier once you have a plan in place.

x

[mishamilo53 in reply to sassassas]

thanks for taking the time to reply and offer such reassurance , I’m so happy for your husbands treatment seeming to be working and long may that continue for you both x