Newly diagnosed and needing support.

[moto26261]

Following wedge resection in early May of a lung nodule which could not be reached for biopsy I was told last Friday that it was lung cancer. I am now booked in for a Lobectomy next month,but I am beyond shocked as I was originally told by one Dr that as the nodule was non spiculated it was nothing to worry about. I feel as though I am living with barely controlled hysteria and as if my whole life is out of control. I want to run away from everything and keep having outbursts of uncontrolled crying....everything everyone seems to say and do seems to be wrong. Is this a normal reaction, I actually feel as though I'm going mad. Thank you. x

[JoannaHoyle Roy Castle]

Hello Moto

I am sorry to hear your news and I think your reaction is 'normal' in what must feel like a very abnormal situation. You are in shock and this is understandable, you are not going mad - don't beat yourself up. I cannot imagine how you must feel. Please speak to your nurse and loved ones as you do need a great deal of support. You are understanably very fearful but it is early days and the outlook may not be what you are thinking. There are some wonderful people on this forum who will listen and understand what you are going through.

You are in my thoughts. Please keep us posted. Very best wishes, Joanna x

[Billculbard]

Hi there.

I don't know enough about the subject of lobectomy to offer any advice, other than that this procedure may resolve the problem.

Anything to do with cancer is almost guaranteed to leave you feeling how you are right now, so don't think you're different from the rest of us. I don't think it matters about how old you are, male or female, it's shattering news.

The best I can suggest is to try and keep positive, and try to get as much info and advice as possbile from the cancer nurse specialist, where you were diagnosed. They are usually fantastic.

Keep in touch with this site and best wishes. Bill

[moto26261]

Thank you, but I don't have a nurse or anyone professional to speak to as my surgeon is at Guys hospital in London and I live in Kent.I had to travel 80 miles from home for the wedge resection and will again for the lobectomy, which also makes it difficult for people to visit. I've seen nobody,but the surgeon and original Drs who found the lump incidentally whilst looking for something completely different. I've not been given any other help or advise,just that I need a further op and then maybe Chemotherapy. My family tell me not to keep looking on the Internet as I'll find mainly bad news (they're right!),but I really need some help. x

[JoannaHoyle Roy Castle]

Hello Moto

The travelling distance must be difficult which isn't helpful. I think you could perhaps speak to your doctors and ask about being allocated a lung cancer nurse specialist. As Bill says they are wonderful and will most probably be your first line of contact during your treatment. Please ask as it sounds as if you are in 'limbo' at the moment and understandably have many questions; your nurse can help with all of this. I agree with your family, the internet is not the best place to be looking. I can understand why you are doing it but it is obviously upsetting you. Take care Moto, best wishes, Joanna x

[Sam112011]

Hi moto, i am in kent as was my mum when she was still with us, have you tried contacting Macmillan Nurses ( search under Macmillan) they are fantastic and have local nurses (they visited us) whom i am sure would offer you lots of support and try to answer those never ending questions we all have at these times. I wish you luck and hope all goes well with your upcoming procedures. xx

[Hidden]

Hi there,

I'm stage 4 too and have a group/campaign on facebook. No one can believe I have lung cancer either as I look so fit and well and to be honest I'm now 14 months down the line and a doing very well. I belive being postive has a lot to do with it. look me up, lyn barrington, group is : I am a face of lung cancer, there is alot of community support out there x

[Hidden in reply to Hidden]

Hi Lyn

I find your posts so positive and uplifting. I've applied to join the Facebook group too it looks like just what I need. I've now seen a scar the same as my husbands!

Thanks

[Hidden]

Hi,

what you are feeling is totally normal, it is a very frightening thing to be told. The one thing I will say is don't read the stats on the internet, they are based on old figures and do not represent the treatment people receive today. You have to be aware that there are also different types of lung cancer and some are more aggressive than others. There are even different levels in the staging, the stats are an average of all these differetialls.

The waiting is the worst thing but once you have had the surgery you will have a complete picture and know what if any extra treatment you may require, please don't jump to any conclusions before you have all the facts. It was lucky that it was picked up by accident as it is ofen worse once symptoms appear (like mine, I'm stage 4 ) I know that probably doesn't help right now but it will, I promise. Please try and stay positive, we are all here if you need to talk to help you through it. And remember, there is always hope.

Much love

Lyn x

[ericbyrne]

Hi Moto,

I am sorry to hear of your diagnosis,welcome to healthunlocked,my reaction to my diagnosis I remember being exactly as you described.My sleep patterns were so upset,I thought I would never be able to have a normal night sleep again,even with taking a prescription sleeping pill,my brain was in overdrive constantly,I could dream up so many scenarios,mainly about I have lung cancer and its going to kill me -soon.When my treatment plan was presented to me by my oncologist,I now worried,will the chemotherapy make me violently sick?,will all my hair fall out?(I did'nt mind losing the gray ones) I was to receive 4 cycles of neo-adjuvant chemo to shrink my tumour which if successful,(it was) then proceed to surgery for a upper right lobectomy,so now my worries became,what if the surgery is unsuccessful?,will it be excruciatingly painful?,will I become, post surgery, a breathless invalid?will my wound site remain painful for the rest of my life,you name it I probably dreampt it up too.

Well I have to say nothing of all above came to fruitition,nor even close to it,I promise you, I sailed through the lot,the surgery was a bit uncomfortable,and the wound site was a bit achey for a time,a small price to pay I thought I can live with this,but even that disapeared imperceptively over the passing weeks.

Like you,I started to research lung cancer,off to my local

library, I devoured all the books they had,I learned so much,also from the internet and so many other sources,the Roy Castle advisory leaflets etc,but what I was really looking for,was stories of long term survivors of lung cancer.One day I picked up a newspaper and found an article about a guy starting up a lung cancer support group in a local hospital to me,I could'nt believe what I read next,this guy had survivied lung cancer for 19 years,originally dxd with SCLC in 1993,given 2 months to live,he survives,then in 2007 is now dxd with NSCLC,receives treatment,survives,I just had to meet this guy,and I did,Robert Lowe and I have become such good friends,not only were we from the same district in Glasgow,but we went to the same schools,despite Robert being ten years my senior,we even shared the same teachers.

Moto,I have discovered that although lung cancer my have rained on my parade,but it sure came with a great big silver lining,since becoming a Roy Castle advocate,I have never looked back,my life has taken on a new

meaning,I have since met so many wonderful people on my advocate journey,it have refound the life I enjoyed prior to my dx.May you also refind that person within yourself.God Bless.

[moto26261]

Thank you to all of you who have taken the time to reply. It is a great comfort to read of all your experiences as I am having a particularly tearful day today. Eric, every thing you say is so true, my imagination has come up with every scenario of me not making it through this and it does bring you down. My operation has been confirmed for 18th June so need to try to get myself straight for then. Once again I appreciate your input and hope to speak to you all on here regularly.

[loopyloo]

Hi Moto, I too had a lobectomy in 2010 using vats. I agree with Lynba forget about trawling the internet for info besides a lot of sites using a lot of medical jargon they can also get you worrying even more. It is quite normal to feel the way you are doing. It did help me having a lung cancer nurse specialist at the other end of the phone. Have you been offered the number of a specialist nurse? I also never seen an oncologist, the people I had appointments with were a respiratory consultant and the surgeon. But your case would have been discussed at their MDT meeting and there is normally an oncologist in attendance. Good Luck with your upcoming surgery

Loopyloo xx

p.s. hope this has been of some use to you : )

[moto26261 in reply to loopyloo]

thanks, no I've not been offered any support at all. I'm thinking that maybe it's because I have to go to London (80 miles away) as they don't do the operation at my local hospital and so no ones dealing with me locally? I've only seen the surgeon since before the wedge resection.

[loopyloo in reply to moto26261]

I really do think I was quite lucky. I was under my local hospital but the op had to be carried out at another hospital that was only about an hour away by bus. I was given the contact no of the nurse at my local hospital. If you go onto both hospitals websites and navigate to departments you are under they sometimes have a list of staff for that department, see if there is a named lc nurse specialist, I hope there is. Let us know how you get on.

Take Care

loopyloo xx

[moto26261 in reply to loopyloo]

I will ,thanks. I suddenly realised today that I wasn't even told which specific Lung Cancer I even have. I contacted my surgeons secretary and she passed my query onto the "clinical team", but not heard back from them yet. It came as such an unexpected shock to hear it said that I barely said a thing and thought of so many things later that I would like answers to. My mind is still a complete mess and it still hasn't really sunk in, it pops into my head and it's like I'm shocked all over again. It will certainly be nice to move on a bit from this absolute turmoil. xx

[loopyloo in reply to moto26261]

Write some of your questions down, I often thought of questions when I left the hospital, write them down so you remember for next time. There is so much to take in we do forget x

[Hidden]

Hello Moto,

Everyone has pretty much said what I would say in reply, so we are all thinking along the same lines!

I've always compared how you feel to being similar to the stages of grief - you will go through so many emotions, up and down, like a rollercoaster, but dont be afraid of that, its your brains way of processing what is going on. Perfectly normal. We've all had that "going mad" feeling at some stage. My husband had a pneumonectomy (total removal of his right lung) 18 months ago, and he has also had a kidney removed. You would be amazed what the body can cope with.

Get as much support as you can, especially for hospital visits, you really need someone with you if you can, its very very hard for the patient to take everything in. I would write everything down and ask questions, it was almost too much for my husband to take in. You will have a lung team, we have lung nurses we keep in touch with who are really good.

Take care, good luck and keep us posted on how you are doing. Keep strong.

[moto26261]

Thank you..I think I've just been talking to some of you on the Facebook group. x

[Hidden in reply to moto26261]

Yes you have :)).

xxx