Cancer Support Groups

I am currently assisting in a study involving RCLCF and the Cancer Care Research Centre at Stirling University (CCRC). People affected by lung cancer appear to be reluctant to become involved with support groups - such as RCLCF. We are trying to find out the reasons for this reluctance, and I would appreciate the views of anyone with ideas. Thanks, Bill

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  • Hi Bill, Let me apologise first if this is no help. When I was first told I may have lung cancer I didn't want to tell anyone. I felt embarrassed that a supposedly sensible person had carried on smoking with the notion that lung cancer only affected other people even though 2 of my aunts had passed away with it. Plus I wasn't aware that there were groups out there specific to lung cancer. Hope this has helped.

  • Thanks for this! Sadly, there is still a stygma attached to lung cancer. There doesn't appear to be a stygma reference if someone dies from various other "self imposed" illnesses, or even car crashes. No-one says you shouldn't have driven a car, and you wouldn't have been involved in an accident!! I was the same as you - stopped smoking about two years before I was diagnosed. I think it is important for NHS cancer hospitals and clinics to promote support services, as they are obviously a great help to patients/carers/family members. Bill

  • I think that the stigma may be a very large factor.

  • Hi Bill,

    Pleased to meet you,I have been asking the same question myself,where is everyone?.I am a member of the Stobhill Hospital Lung Cancer support group,we are setting up a information stall in the hospital's main concourse on Friday pm's to co-incide with the hospitals lung cancer clinic.We hope to "intercept" all its visitors and pass on to them a information pack of our support group,perhaps to encourage them to attend,or just simply be a friendly contact base,whenever they wish to chat.I am hoping with the support from the Roy Castle org,this could be rolled out to every lung cancer clinic in Scotland.it may not be possible to have a lung cancer support group for every clinic,but the means to setting one up would in my mind be a step forward.I don't know how many lung cancer survivors there are currently in Scotland,possibly 4000 +,would'nt it be great if we could all link up in some way?,what a more efficient pressure group we would become.I was at Stirling Uni last year at the Cancer Reasearch UK conference,I asked the question to the panel about why only 4%,of its budget was allocated to Lung Cancer,among the reasons given was Quote- "Lung Cancer survivors make for poor advocates in promoting their cause".Well that did sting me,so I have become pro-active in looking for ways where LC survivors can raise their heads above the parapet.Best wishes, Bill.

  • Hi Eric. Good to hear from you. So far in our study, we haven't come up with many fresh answers. The vast majority of the folk we have spoken with don't know of anyone with LC., who DOESN'T attend a support group. As for LC only receiving about 4% of the Cancer Research budget, it looks like we're only getting about 4% of patients into the support groups!! There needs to be a better method of getting the message across to patients, that support groups do a huge amount of good to patients/carers and that they are not just talking sessions. Be good to hear how you get on at Stobhill. Best wishes, Bill

  • I was diagnosed 6/11. I have not joined any support group. I believe there is one through the hospital. I was way to sick to attend any group in the begining, now I just haven't taken the time to investigate.

  • Hi Cathy. Not too sure just whereabouts you are, but I'm sure your hospital can help put you in touch with a group. I t's never too late. Best wishes, Bill

  • Hi Bill,

    I must admit I didn't want to know anything or join any groups when I was first diagnosed, not because of any stigma (I have never smoked) but because I didn't really want to hear anyone's experiences as it seemed to be all doom and gloom and I didn't want this to apply to me.

    Now however, although I haven't joined a support join I have joined groups 'online' like this one and one called Inspire. These have been of great help as there are so many positive stories which has given me hope and much more.

    I would like to start my own group in my own town. Since my diagnosis and positive attitude other friends who have since been diagnosed with cancer or have a relative who has seem to be coming to me for support. I have loved helping others.

    There is still a stigma though as everytime I tell someone I have lung cancer they ask if if I smoke, not only that some people even said that I may not have smoked but I had friends that did! It's a fact that more people develop heart disease from smoking than they do lung cancer and there isn't a stigma there! To counteract this I keep posting info on facebook!

    Lyn x

  • Hi Lyn.

    Good luck in starting up a group in your area. I think we need to start annoying the Government and NHS into setting up groups in every area where there are cancer clinics. It can't be left toone or two organisations Like RCLCF. They also need to blast the dangers of lung cancer all over the TV., till folk get it into their heads that ANYONE can get it. My wife distributes Roy Castle literature to health clincs, chemists and some stores, at Lung Cancer Awareness month. Many of them don't realise, for instance, that LC in females is on the increase. Your positive attitude is excellent, and as you say, helping others is great. Keep up the good work. :) Bill

  • Hi Lyn,

    Its a pleasure to meet you,best wishes i wish you every success in setting up your own support group.I think there are too few support groups and hoping more can be introduced,in my group the last way to describe it would be all doom and gloom,far from it,I have gained a lot of new friends to share with.The stigma attached to smoking and lung cancer is deep rooted,and will take some effort to educate not only the general public but also health professionals at all levels.There are many other diseases that are caused by poor life style choices,you mention one,what about the many others caused by poor diet or alcohol,yet dos'nt seem to have the same stigmas attached.?.

  • I have just started my own campaigne this morning by contacting GMTV, A well known womens magazine (easy living) and the Mail on Sunday!

    lets see if any of them are interseted in doing an article??

    I'll keep going until someone ddoes lol

  • That's fantastic Lyn. Good luck! Let us know what response you get. This is an encouragement to the rest of us. You can test the water. :)Bill

  • So far, I've had automated replies saying someone is looking into it, but the Mail on Sunday has written to say that they have passed it to their health editor, and if they think it's something they can use they will be in touch!

    Fingers crossed :))

  • Consider them crossed. :)

  • Hi Bill,

    I am a 47 year old female living in Cornwall, UK and was diagnosed with Lung Cancer aged 38. I had a pneumonectomy after radiotherapy, then more Radiotherapy as well as Chemo. Now, I am still cancer free after almost 8 years. I was a smoker, although I gave up a few years before my diagnosis and was told by my Oncologist that my adenoidcystic carcinoma was not a smoking related cancer. Both of my parents died young from cancer...Mum at 31 from breast C and Dad at 58 from bowel C.

    I have hidden away from support groups as I too believed they might make my illness too real and therefore be the death of me! At this stage however, I find myself bereft of support apart from my wonderful family, and would love to be in touch with other survivors in my area. I believe that fear does spread contempt, and I too was a victim of this mindset. Now I want to reach out to fellow survivors/fighters and be a part of the positive side that still exists despite our initial fears.

    Much love,

    Jane xxx

  • Hi Jane

    Great to hear from you. I'm sure all the other folk reading your post here, get a great deal of encouragement when they see yet another person doing well after this terrible illness. I was ten years older than you when I was diagnosed, and had stopped smoking a couple of years earlier. It's actually 12 years ago this month, since diagnosis!

    I think it is a difficult decision for some folk to become involved in a support group, as they think it may be all doom and gloom. Far from it! I have visited a few support groups over the past few months and the actual moral support you get, is second to none. Being several hundred miles north of where you are, I don't know the locality of Foundation groups anywhere near you, but I'm sure the Roy Castle office can advise.

    Keep in touch with this site, and I hope you get plenty of support from everyone who contributes.

    Bill x

  • I'm a carer for my husband, and I havent yet found a local support group for carers like me. It does take quite a bit of time and energy to even get round to doing this but I would be interested in finding someone who can help. We do have the Roy Castle Lung Cancer org in Liverpool. I didnt find Macmillan online support that useful (may sound strange!). I do feel a bit isolated.

  • Hi Godfrey, Whereabouts in Liverpool are you and I'll see if I can find your nearest group for you. Emma

  • Thanks Emma I am near to Old Swan/Tuebrook.

  • Hi there,

    Your nearest group is In Wirral. If that is of any use to you, I can send you further details. Beth.

  • Thanks Beth - I was looking for something in Liverpool - quite surprised really that the closest is Wirral, which isnt really convenient for me right now. I'll continue to look for help online at the moment. Thanks.

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