I am 31 and I live In London, I had liver cancer a few years ago but now I have been told I could have lung cancer. I am terribly upset and feel very alone. I don’t have any girlfriends/friends and I don’t know anyone who has been through cancer or experienced it which ofcourse makes me feel very isolated and alone. I have no one to speak to or even discuss what I’m going through or anyone who would understand. Does anyone know of any groups online I can join to try and meet other people my age who are going through something similar in the uk? I would love to meet some friends please recommend
Many thanks
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Valentina_22
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Hi Valentina. My heart goes with you and it must be such a blow after having had liver cancer and being so young. The macmillan do have groups and living in London area might make it easier to find a relevant one. Have a look on their website or call them. Good luck Chantal
Valentina, sorry to learn of your recent diagnosis - there are groups in London at various centres and Maggie's centre and Roy Castle lung cancer foundation runs online and in person groups around the country. It's rare for younger people to get lung cancer but not unknown and Roy Castle ran a campaign a while ago to draw attention to this fact. You say you've been told 'you may have lung cancer' so are you still in investigations? There are many symptoms that can crossover with lung cancer and all the various tests take time but are so necessary to rule it out as much as in. Nowadays lung cancer treatments are very specific dependent on the results of the tests to target different characteristics in the tumour. When I was treated in Dec 2010 there was only one target for which a specific treatment was available and I didn't have it. My diagnosis was in January 2011 and I was back at work and swimming by the end of March 2011 having had half my left lung and a 7cm tumour removed. I've been involved in lung cancer research for some years now and every treatment type has changed since then. Roy Castle lung cancer foundation has good patient information online and a nurse led helpline for anyone affected by lung cancer or suspected of it... so suggest you contact them. good luck. roycastle.org/campaigns/lik...
Hello Janette Thank you so much for your response I will have a look at the places you suggested as I would love to find a place where you can meet other people going through something similar. Well I am having my biopsy on the 4th of may and I guess will know for sure although my doctors have said since January I have 5 more nodules that have grown so I’m thinking if more are growing then it’s prob more cancerous then not. I mean if it could be anything else I would be very happy. The doctor said she thinks it’s lung cancer that has moved from my liver to the lungs and said I would prob need to do chemotherapy. I wasn’t sure if with lung cancer if you need to have an operation to remove the nodules or tumours or is it just chemotherapy alone as treatment? I’m happy to hear you were swimming just months after I really just want to get better soon so hearing that gives me some positive outlook! Very happy to hear you had a speedy recovery and I hope to experience the same X
Lung nodules are very common and since projects started around the country to carry out lung health checks on those most at risk (smoking history or current smokers and within a certain age profile) it's become apparent just how many people have them. Like moles on the skin, many never develop into anything 'sinister' and it's not always a matter of them growing but in what sort of timeframe or whether they grow in volume as well as size if that makes sense. There are guidelines for monitoring and treating lung nodules and for many, it's a case of 'observation' with imaging, many more are discharged from investigation and a few go onto further investigations. If it is your liver cancer that has spread that would more likely involve treating it with the same treatment as the primary cancer rather than if it does turn out to be a primary lung cancer. There are many different types of lung cancer - most falling within 2 categories either non small cell or small cell but even within those there are different types, stages and different mutations so it's quite complex.
Did you attend a support group for your liver cancer? they may have people on there who've experienced spread to lung so if it is secondary cancer to the lung, they may have more advice too...
Surgery for lung cancer is mostly undertaken if the tumours are contained within the lung - as the systemic anticancer therapies like chemotherapy, immunotherapy and targeted agents are in case it's started circulating around the body in lymph or detected in other organs. nowadays I would have been offered chemotherapy to 'mop up' given the size of my tumour but treatments have come on a long way since mine over 11 years ago. Some people do indeed have solitary tumours 'zapped' with a form of radiotherapy (ablation known as SABR) or surgery. Many people have nodules that increase in size due to inflammation or infection from other causes like pneumonia and some have been seen due to covid so try not to rush to conclusions yet..... sadly all the tests take time to get all the results and tend to be kept back to be given in one consultant appointment so see if you can find a way to keep yourself occupied until then if you can.... good luck. roycastle.org/about-lung-ca...
Welcome to the forum, all be it under the worry of lung cancer. Sorry to hear you have had liver cancer and I see you are awaiting your lung biopsy. The biopsy will provide a clear diagnosis if it is cancer, they may test for specific cell mutations/proteins present which, if it is cancer, may provide an option of new treatments as in immunotherapy or targeted therapies.
There is plenty support and information available for you during this time.
We provide a variety of support, from one to one support to online support groups through zoom and you can register for these through this link: roycastle.org/help-and-supp...
alternatively you could email jessica.crowe@roycastle.org to discuss your support needs.
There are lung cancer support groups in the UK, however many of these are not back meeting face to face. There was one in St Guys and St Thomas Hospital, but their details have still to be confirmed.
The Maggie's centres are a good place to have an informal chat, and these are your nearest ones in London: maggies.org/our-centres/cen...
You may wish to read some encouraging accounts from others, including within your age group that have experienced this through this link: roycastle.org/campaigns/lik...
If you would like to get in contact with any of them, you can email ask the nurse at lungcancerhelp@roycastle.org
If you are looking anything up on the internet, we would advise that you keep to websites that provide accurate and up to date information:
This link will take you to our booklet on the investigations for lung cancer, the types. staging and treatments of lung cancer: roycastle.org/app/uploads/2...
The waiting is an anxious time for you and it is only natural that we often think of the worse outcome, please do not hesitate to contact us if you would like to chat or discuss anything, either by email ,to ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
Hi Valentina, I also have lung cancer aged 35 when diagnosed. You should check out Trekstock which is a Facebook group, they also have a what’s app group. If you want more info drop me a Instagram message @adrian2615
Hello Adrian Thank you so much for your response, I am sorry to hear you also have been through it. Hope you are doing well now. I would love to join the Facebook group as it’s the only social media that I have haha so I don’t have Instagram to message but would love to join the what’s app group if possible X
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