Unusual Journey?

Hi,

A few posts have spurred me on to write this. I am a 51 year old guy who enjoyed good health and a good life up until 2 1/2 years ago. I started to feel very tired and thought that age was beginning to tell. After a few months I had a medical at work and it was noted that I had lost weight. I then decided to seek help from my GP and after ongoing fatigue and other issues I was sent for a CT scan in March 2016. Great news, all clear! In December 2016 I had further referal to the hospital and after seeing a few consultants, I eventually received my diagnosis of small cell lung cancer. Now it is not clear if my 25 months of symptoms were connected to the lung cancer diagnosis or if they were unrelated and in some way helped uncover the lung cancer earlier than it would otherwise have been found. As you probably know, time with consultants are quite rushed and my oncologist says he only normally gets to see patients once diagnosed, so can't really comment on my journey. I was wondering if it is indeed as unusual as it feels. Were my earlier symptoms in any way connected. I would be be pleased to hear your views or share professional experience.

7 Replies

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  • Hi this sounds. Similar. To ny partner. He had health issues. 2year ago after xrays and mri scan was told he had trapped nerve. Un his neck and carpel tunnel in his hand but always being fit and active found himself. Getting tierd and had lost some weight 2year on went to docs in September. 2016 was told he had chest infection. He was given antibiotics. Which did not clear it so was sent for xrays which showed shadow on his lung by this time he was in a lot if pain so i took him to hospital. He was admited and within 2days was diagnosed. With sclc. Our wotld was turned upside down the doctor said all his symptoms. Over tge 2years could be realated he his now on his. 4th chemo and doing ok but has it carnt be cured. Chemo can extend life he lost a stone. And a half in. Over a week the shock and anxiety the unknown is very hard but thibgs are getting. Easier now and chemo working. well. Hope all goes well for you

  • Thanks for the reply Brogan. It is good to hear that your partner's chemo is working well. I did speak to another patient at the hospital the other week. They also had sclc and had been unwell for a couple of years. I just don't understand that when I speak to the medical professionals that they pretty much discount the symptoms I had based on the length of time when it appears other patients have had similar journeys. I don't have much of a network in the dreaded world of cancer, but surely our presentations can't be all that unusual if it has happened to three of us? I would have hoped that the doctors would be trying to learn all the time, especially when we all know how early diagnosis is so important.

    Glynn

  • Yes well I complained. At his local doctors surgery. 2yeat is a long time. Tobe unwell. Thry said they eould learn by there mistakes but its not the point wr didnt haveany knowledge. Of this awful. Illness. Until it happened. It wad unexpected. The rmotions and anxiety of the unknown. Is hard but up to press apart. From being tierd. With the chemo he feels well. Hope u do well on your journey. And it eould be nice. To keep in touch take care for now

  • I just found that there is a similar community called free to breathe. I asked the same question and instantly someone replied saying they too had symptoms for 2 years before being diagnosed with small cell lung cancer. I just don't understand how this information is not made more widely available. Perhaps the way the information is recorded show the diagnosis period from the last GP visit that led to the successful diagnosis rather that the whole period where the patient was tripping back and forward to the doctors where they get incorrectly diagnosed with - fibromyalgia, depression, stress/anxiety, IBS, CFS and so on.....

    Course I could be wrong.

  • My husband went to the dr for 3

    Months c/o back pain. They only did x rays that showed nothing.

    He kept complaining but dr didn't do

    Further tests. Finally I took him to ER demanded a Cat scan & they

    Came back in 10 mins. It's Stage

    IV lung cancer. He died in 3 mos.

    Needless to say, I am upset with

    The medical community!!

    (Our last name is Glynn!)

  • I am sorry to hear about your husband and how he was failed by the medical community. The medical community should know, more than anyone else, the limitations of different imaging modalities. Being a doctor must be the only profession where they bury their mistakes. I wouldn't mind as much if they said when they were unsure about something. But in my case they told me that lung cancer was categorically off the table because I had felt unwell for over two years and if it was cancer, I would be in a much worse state if not already dead. I am still alive and facing cancer, so guess they might have got it wrong, or that I am facing two illnesses which is possible. I must admit that I have been surprised to hear a number of people complain of symptoms a couple of years before diagnosis. It doesn't seem to make sense based on what we are told about small cell.

    Glynn (first name!)

  • HI Glynn

    Welcome to the forum and thank you for sharing your journey.

    Sorry to hear about your diagnosis and it is interesting to read the replies that have came through.

    Your lung cancer specialist nurse may be able to offer some insight to this as he/she will have heard many patients perspectives of their journey to diagnosis. It may come down to no individual has the exact same route to a final diagnosis and everyone has their own story to tell. However it is good to share them to perhaps see if a similarity starts to occur.

    We do wish you all the very best and offer lots of information on our website roycastle.org or if you wish to discuss anything we have a free nurse-led helpline on

    0333 323 7200

    Kind regards

    The Roy Castle Support Team

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