I had liver cancer in 2018 and have now be told I have nodules in my lungs which have grown from to another 5 in the same of a few months. I was told today by the mdt team that they need to refer me to a lung specialist and then they will tell me which biopsy they recommended either via the mouth with a tube or via the skin. I was also told that I would need chemotherapy. I wanted to ask if anyone has gone through chemo as a result of having lung cancer and how there experience was? And what to expect. I don’t know anyone who has had cancer or chemo before and feel very alone as I haven’t got anyone to speak to that would understand. Please do let me know what I should expect. I am so upset and terrified of losing my hair. I am 31 and from London.
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Valentina_22
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So sorry to hear. I really sympathise with your worry about hair loss, that worried me too. The chemotherapy I had - pemetrexed and carboplatin - did not result in hair loss for me, just a slight thinning and I kept the volume by having hair extensions put in. Nobody even noticed. I hope that’s an option open to you and wish you well. x
Hello elle Thank you for your response, oh that had put my mind at ease fingers crossed i can have that option, as that would at least relax me a little. Did you have it through a drip/ or via a drug? I don’t know which one I will have just yet … still waiting but thank you 🙏 Xx
I had it through a drip. That was over three years ago. I used to try to think positively -‘where else can I sit down in a comfy chair for a few hours, read a book and have tea and sandwiches brought to me’. Are you at the Marsden in London? They have lots of support groups.
I know everyones’ treatment and experiences are different but you’ll get lots of tips and advice from people on here … so keep asking.
Thank you Elle for sharing that with me, well for my liver cancer I was treated at Hammersmith hospital which was a horrible experience I might add but my biopsy for my lungs is at st Mary’s hospital so I’m hoping that any treatment I will need I could have it there! Anywhere but Hammersmith I will be happy.
I read your other post and can see that you're now asking about treatment types. Some treatments are by infusion (drip), some oral tablets and some involve combinations of therapies such as chemotherapy, immunotherapy, targeted treatments, radiotherapy, surgery - with all or some of them involved dependent on the stage of the cancer and location/size of tumour and fitness of the patient. If they haven't yet confirmed a diagnosis it won't be guaranteed that you will need chemotherapy and there are many different agents used in chemotherapy - and not all have the same side effects. There are many who during the pandemic have had immunotherapy instead so that sounds irresponsible to tell you of one type of treatment before any diagnosis is confirmed.
I didn't have it for example even after a 7cm tumour was removed with half my lung during open surgery (thoracotomy) in Dec 2010 and was back at work some months later. Most lung surgery for those eligible is now done by keyhole method.
Try not to jump ahead and deal with things as they happen rather than thinking the worst - so many things have changed in lung cancer research and treatments even in the last 6 or 7 years and google is woefully out of date. Use trusted resources like Roy Castle lung cancer foundation that regularly updates its information when you have a confirmed diagnosis. good luck...
Hello ValentinaI feel sad when I read your post, your never alone, even if you don't have family who can support, you'll find us on here waiting to encourage, advice and support you, and of course the professionals like Roy Castle Lung Foundation, Macmillan and GO2 to name but a few.
Some chemotherapy you lose hair and others not, if you do lose it, it's not all completely just patches in some cases. When I go for treatment some of the hats are quite trendy wouldn't look out of place at a fashion show!!
My diagnosed of NSCLC Stage 4 in June 21 was followed my immunotherapy that didn't work so started chemo, 2 to go and then see outcome. I know I have small brain mets which are dealt with radiotherapy.
I have lots of other issues related to the cancer but that's another story! The support on here is amazing.
Hello tike that is very kind of you to message, yes I am so glad I came across this site as the last time I had liver cancer in 2018 I was very much alone my friends were never around and I was very much alone only had my family and never new that websites like this existed. I am so glad I have found them as it is helpful to talk to others who understand what it feels like. Unfornatley tike , I cannot have chemotherapy the doctor made a mistake and has now told me that my cancer is terminal giving me 2-5 years left. The only thing available is immunotherapy. I am on a bit of a dilemma as I heard of a clinical trial and at this point will try anything but they will take my blood test on Monday to see if my blood is okay and if it is I can take part if it’s not then I can’t. However because of the bank holidays in the uk they are saying it might not come back in time before Friday and my doctor has booked me in for immunotherapy this Friday. I asked her if I could delay it as I really wanted to see first if I’m eligible for this trial she said if I cancel ur immunotherapy I don’t no when you can come in next as we are fully booked next month so it’s not giving me much choice. Also she told me last week there is no point in having children as I won’t live to see them when at 31 that’s all I ever wanted, to start a family of my own. This week she said if I wanted to freeze my eggs I can but it will take a month so really she is not giving me a choice. As if I want to do the trial which is I. 3 weeks or if I want to freeze my eggs both options would affect my Fridays immunotherapy date. I am very very upset about this as if I am lucky enough to live if fingers crossed a miracle happens and I get better my right to freeze my eggs has been taken away from me as she is saying if I do so I won’t have a place booked for immunotherapy in the future. It is very stressful and upsetting looking back at my earlier post of chemotherapy I feel so guilty as I wish that was my problem now as it would give me a chance of life. Sorry for the depressing post but that’s my update! I hope you are doing well ♥️
I really do sense your pain and anxieties, it's not easy is it. Sites like this help tremendously because in some cases people may have friends and family but they just don't know what to say.
As for not being able to have chemo I say don't worry I wasn't suitable for immunotherapy, there's always something out there. I can understand your concern though when you have an oncologist who gives you a set survival time!! No one can predict, and that upset me along with freezing your eggs!! It's not my place to say but I'd get a second opinion, you have got a chance of life, take no notice.
I'm sure you will get some very strong responses to your post, it upset me greatly.
Yes I am upset because I feel like although my oncologist has no mentioned to me about freezing my eggs( in her words “ I have to mention it to you”) she has booked me in for immunotherapy this Friday. I asked her I would want to freeze my eggs and she replied well if you do that will take a month and I won’t have a place for you for immunotherapy as we are fully booked so I won’t be able to tell you when you can receive treatment. So really it’s not a choice it’s an ultimatum either receive treatment and loose the choice of having kids forever if I get better one day that is or freeze your eggs but don’t get treatment. The clinics trial that I want to join I’m going for a blood test tomorow to see if I’m eligible I cross my fingers I am even though that starts in 3 weeks it might give me a chance to freeze my eggs if not I have heard that some liver cancer patients have responded to it so at least it’s a glimmer of hope but it all depends on my blood. Yes I am trying to get a second opinion but my doctor said she cannot give me my records and I have to ask other doctors to email the hospital and request it which takes time, which makes it very difficult and the fact that my immunotherapy is on Friday gives me very little time to some how get a doctor to look at my records who’s available. It’s just one hurdle after another! But I am trying my hardest to be postive even though it’s very hard. I just hope that I respond well to whatever treatment I can get. I want to hear from anyone who’s had liver cancer and that the immunotherapy has worked for them to give me some hope! I hope you are doing well tike ❤️Thank you for kind messages it really makes me feel at ease
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