Recently diagnosed

[swampduck]

Hello,

I am 52 yr old lady, non-smoker, and have recently been diagnosed with lung cancer.

Still trying to deal with it, still feeling bit numb, any help or advice would be greatly appreicated.

[Billculbard]

Hi there.

Join the club! There are lots of folk on this site going through the same as you. It's the easiest thing in the world to say "don't get too downhearted and stay positive" - but not quite so easy to do.

Lung cancer is a terrible illness and scares everyone who gets it. But you really DO have to try and be positive, because so many improvements have been made in treatment, over the years.

Your best bet is to liaise closely with your cancer nurse specialist, who can generally give you the best advice. You'll also get great help from the Roy Castle staff, and organisations like Macmillan Cancer Care. It's important to remember that you are not alone, and there are scores of folk on this site who will be able to give you support and encouragement.

Best wishes, Bill

[swampduck in reply to Billculbard]

Hi Bill,

Thank you for your kind words. I feel a little better after reading the messages on this site, so glad I found someone I can talk with.

I have been in contact with the Roy Castle staff, who have listened to me (unlike my GP's) and after careful consideration, have chosen to go with a different oncologist to the one originally offered to me by Lung Nurse, since his main area of expertise was breast cancer, and I have advanced Lung Cancer that is in-operable, and has spread.

I have noted, the area I live in 'appears' to be short on cancer care staff and back-up, so have looked further afield. I feel that I am in much better hands now, after my condition has been missed for the past 12 months.

Thank you again Bill

[Harrypalmer]

Hi, I can only reiterate what Bill has said and take one step at a time and above all remain positive. This site offers fantastic and encouraging support and we will be here for you every step of the way if it's for advice, or if you 're feeling down or just want to shout at someone then we'll be here holding your hand along the way. Let us know how you get on and what treatment you are being offered. Stay strong and positive. Moni xx

[swampduck in reply to Harrypalmer]

Hi Harry,

Thank you for your reply, will do my best, but if honest still feel really cheesed off. Doesnt help I know, but a lot of my condition could have been avoided.

The best news I have had so far, is that my EGFR is postive and I can have the Gertifin treatment......first time I've cried since receiving the news I have cancer.

My appointment is Wednesday to see nurses, ward etc., just want to get the tablet so I can really fight this thing.

How are you?

[suesal123]

Hi,

Sounds very similar to my situation. I am a 52 yr old non-smoker and was diagnosed with Lung cancer last summer. Like you it came as a total shock and took some time to get used to. I tested positive for an EGFR mutation which meant I could take a drug called Iressa which, for me, had very few side effects but a good response in tumour shrinkage. Have you been tested for this?

Unfortunately Iressa stopped working for me in January although there are some people on this site who are still on it 2 years down the road. I am now on IV chemo (carboplatin & pemetrexed) which isn't as bad as I had expected

There are other treatment options after this and there are new drugs coming along all the time. I know it's hard but try to stay positive and keep in touch with this site, I found it really helpful and gave me hope.

Take Care

Sue xx

[swampduck in reply to suesal123]

Hi Sue,

Yes, I had my appointment with oncologist last Thursday, he said my EGFR was postitive, due to go back Wednesday for tablets, meet nurses and ward staff, not sure which ones though.

I have not been told what stage it is, only its advanced, been there 2-3 years and in-operable, and spread to my adrenals, lymph nodes, sacrum. Alongside this I have also got shingles, and currenly taking medication to clear it.

During the investigation into my cancer, I found out that when I was 2 yrs old I had TB, and was hospitalised for 3 months, and monitored for 12 years (now makes sense my fear of needles, and hospitals). I wish that I had been told. It has been reported on internet that those that test postitive for TB are 11 times more likely to get this type of cancer, I would have had insisited on regular chest x-rays, and ensured my GP had my TB information flagged on his screen. Not sure about other surgeries, but mine only keep details of patients from 2006 onwards, everything else is in the archives!!!

I now feel a bit better that the tablets can help ...and kind people like yourself are here to support, and talk to.

I hope your treatment is going well, and you are ok.

Take care,

Karen

[Hidden]

I am an 45 year old non smoker diagnosed with stage 4 inoperable lung cancer. I have found this site extremely helpful, all my fears and worries are answered by wonderful people going through the same thing. They help keep me positive and stop my fears spiralling out of control. I'm sure you will find the same. Treatments are coming on leaps and bounds. When I heard the word 'cancer' I immediately thought it was a death sentence, I now know that's no longer the case. Wishing you all the luck in the world. Keep posting please x

Tallulah x

[swampduck in reply to Hidden]

Hi Tallulah,

Thank you for your message. I have only just found this site, and still finding my way around. I havent completed 'about me' yet, but have so many questions, feelings, fears........dont know where to start really.......feel isolated at the moment x

[Harrypalmer in reply to swampduck]

Hi Swampduck, with this site you really do not need to feel isolated. There are so may inspirational people waiting to support you. Like you, my head is still reeling with the diagnosis and I spend hours at night awake thinking about it. I'm putting on such a brave and positive face for the family but on my own my darkest fears take over and that's why it's so helpful to use this site and talk with other people going through the same process. Shout and scream all you want, ask all the questions spinning around in your head in the knowledge that someone will reply and support you. Moni xx

[swampduck in reply to Harrypalmer]

Hi Harry think I will feel better once I know the team around me. I havent really got a cancer nurse at the moment. Sure this will all change on Wednesday when I go to the cancer ward, and get my cancer tablets....would have finished my shingles tablets by then too.

The only advice I am getting so far is talking about hospices, encouraging my husband to take over the house finances, final days care etc....making me feel very agitated....Im trying to be positive here,

Hope that when I see the lung nurse there, she can answer my questions, and explain a few things to me. about my symptoms

Thank you again....sorry to rant just feel so ratty

Take care

Karen...

[LorraineD Partner Roy Castle]

Hello all

Please do make the best use of this site to share experience. It is a place where you can park the brave faces and positive approach at the door step if and when you need to. We are looking at how we can improve face to face support as well as online activity, so please monitor the site for more information. If you are looking for any written information on testing or treatment do either have a look at our website roycastle.org or call us on 0333 323 7200 option 2.

There is currently a survey being run by the UK Lung Cancer Coalition, through which we hope to improve experience. You can find a link to the survey on my blog or via our website.

best wishes

Lorraine

Information & Support team

[swampduck]

Thank you Lorraine, will take a look, and fill it in as best I can

Karen x

[clarkejacks]

hi,i am 45yr old lady.i got diagnosed with lung cancer in 2011.i had my full lung removed and chemo..i am doing really well now.it is a shock when u get diagnosed but staying positive helped me alot.they can do great things now with treatin cancer,and on your journey you will meet lots of new friends who are going through the same.i know its hard,but never give up hope.x

[swampduck in reply to clarkejacks]

Hello,

Thank you for your kind words...its good to hear you are well. My cancer is imoperable since GP missed it for over 12 months. I have just started Iressa tablets, and so far so good. I am feeling ok at the moment, and hope to continue feeling this way. Its lovely that there are so many kind people here with words of encouragement, and support. Thank you again, and stay in touch

Regards

Karen