Cancer Research UK on Google+ Cancer Research UK on Facebook Cancer Research UK on Twitter
Donate

Let's beat cancer sooner

Newly diagnosed

7 May 2018 00:41

Hi All

I'm so rubbish at this kind of thing!

I was diagnosed with lung cancer about 10 days ago, I'm oddly calm which is unsettling but i don't know if it's "head in the sand" syndrome or an inability to accept the enormity of the journey I am having to face?

I am having a PET scan this week along with the breathing test to determine which treatment I wil have, although a lobectomy has been mentioned, the test results will be reviewed on the 15th May, I'm hoping I won't have to wait to long before I am told.

I guess keeping busy will help until then.

Re: Newly diagnosed

7 May 2018 07:34 in response to K53

Hi K53

I'm very sorry to hear of your diagnosis of lung cancer.

I myself received my diagnosis calmly but was then unsettled by the wait between each investigation and result. I then found everything was more intense, meeting family and friends and so on, which to some extent filled those days.
So, yes, I think keeping busy is a good strategy. Come on here and have a chat might also help and of course avoid Dr Google.

Kind regards

David
 

Re: Newly diagnosed

7 May 2018 10:32 in response to Dafra

Thank you Dafra

Sorry your going through the same!

It is unsettling, I have to remind myself this is real, just waiting in between appointments seems to drag on forever, but like you say, It will become more intense once the decision is made.

I'm so glad I found this site last night, it's lovely to have the suppport and a place to turn to with people who get it. Family and friends are the toughest to break the news to, I'ts exhausting!

Regards

Karen

Re: Newly diagnosed

7 May 2018 17:40 in response to K53

Hi Karen

I'm also newly diagnosed with lung cancer. Just doesnt seem real. Had PET scan ( thats a weird one!!!) and told no spread but advising lobectomy. Everything moving very fast and I keep thinking I will wake up!

This site is the best- we are not alone

 

xxx

Re: Newly diagnosed

7 May 2018 17:56 in response to K53

Hi Karen

I have to apologise for giving the impression I was diagnosed with lung cancer. I just meant that my diagnosis time and wait experience was similar. I have melanoma spread to lymph nodes but my sentiments of the post are correct

It may be hard to tell family and friends but I think you will find that the support you get from a select few is worth the world

 

Kind regards

David

Re: Newly diagnosed

9 May 2018 12:41 in response to Mushti

Hi Mushti

Your right, it is a weird one,I had my PET scan yesterday, now in limbo until next week, the wait is the hardest part, keep having to remind myself this is actually real. 

So happy for you there is no spread, such a relief, Do you have a date yet?

Regards

Karen

Re: Newly diagnosed

9 May 2018 13:10 in response to Dafra

Hi David

At the end of the day, we all have cancer, we're all here for that connection and from where I'm sat it's priceless.

It's the oddest thing, I feel frightened to tell friends, worried what thier reaction will be, but at the same time feeling guilty for bringing this on myself, I've still to tell a lot of people, but putting it off until I have all the results and dates, (head back in the sand)

Regards

Karen

 

 

Re: Newly diagnosed

9 May 2018 18:36 in response to K53

Hi Karen

I'm booked in for surgery on 24th May. This is happening so fast and I feel so out contol. Like you, I dont know how to tell people, who to tell  or how. I feel stigmatised and to blame for my condition  - an embarrassment to all my friends who think they will live  forever and illness is somehow our fault. I have let myself down somehow.

 

I am scared  beyond words but  will face this  - the staff at the Leeds Cancer Centre are amazing.

Thinking of you on your journeyt - please keep in touch

Love

xx

Re: Newly diagnosed

11 May 2018 13:31 in response to K53

Hi Karen

Don't feel guilty please. I think you have great control waiting until diagnosis is clearer.  You are unfair to yourself bearing this alone. Anyway others here will give you support. Try and post any outcome. I'm sure I'm not alone in finding people here you want to care about.

Kind regards

David

Re: Newly diagnosed

12 May 2018 15:02 in response to Mushti

Hi Mushti

It's torture isn't it, we are strong though and can face this head on, technology is so advanced these days, we will get the best care they have to offer, and lobectomy is the best option for us, so i've been told.

I don't have a date yet but think it will be sometime in June.

I've no idea how many people in my life need to know, Ive only told my immediate family, and a few close friends, all of which have been supportive and not crittercised my choice to smoke, had they been different, I would question the relationship and keep my distance, we have enough to worry about.

The irony of giving up smoking when our stress levels are sky high? 

Self preservation kicked in when I had to tell my childern, I played it down to minimise the backlash, I've not had it yet but due to fly down for a vist in 10 days time and I know it's coming, but I find out on the 15th what the results are and the plan of action so no hiding after that.

Sending you hugs xx

Re: Newly diagnosed

12 May 2018 15:18 in response to Dafra

Hi David

Thank you, that's so kind of you to say that, I think it's more a case of not accepting this is actually happening, but all will sink in next week.

I've not ventured out of this chat yet, but I'm sure there will be lots of people to find and support each other. I was nervous chatting like this so thank you for being there.

I will let you know how it goes on Tuesday.

Kindest regards

Karen

Re: Newly diagnosed

12 May 2018 17:45 in response to K53

Hi Karen

Lordy I'm  glad you are on here!! I  feel like we have a bit in common here!

I have to find way to tell my work colleagues and I cant bear the idea of sympathy or blame.  A lot of people I know are health freaks and think they will live forever and I feel like I've let the side down - how daft is that????????? Confused

No kids so that is one nightmare I dont have to face.

Pre op information session on Tuesday to tell me and my partner what to expect post surgery. Think all kinds of ***** will kick in  then.

Thinking of you and so glad to have you to "talk " to

I will let you know  what Tuesday brings

Hugs

Mushti - my cat's name!

 

Susan

xxxxxxx

 

 

Re: Newly diagnosed

12 May 2018 18:58 in response to Mushti

Awesome name for a cat!

Oh bless, I did think the same while I was replying, some of the things you said resonated with me.

I'm feeling your pain, (I have my mum head on)....... the people you work with may or may not have an oppinion about your news, but plenty of people who have never smoked get lung cancer, and healthy ones die after running, who's to judge?

The important one's in this scenario is us, it's happening to us and our sanity needs to be preserved so we have to try not to dwel on it, tell your boss and see what happens.

Me personally, I chose to smoke, I chose to ignore the warnings, and stupidly thought "it will never happen to me" so I am trying to suck it up and own it. I don't want sympathy, just a little bit of kindness to ease me along the unknown road ahead, and if people are indiffernt so be it. 

I would really like to know how you get on with your pre op meeting, as your further along than me, and I will let you know what my cruel hand of fate has given me.

Thinking of you and thank you for being there to talk to.

More hugs xx

Re: Newly diagnosed

12 May 2018 19:54 in response to K53

Hi Karen

I just wanted to send a message of solidarity and hope to you as you wait for the results of your PET scan, your lung capacity test, and then your meeting on the 15th - and as you process what's happened and think about how to tell friends and children.  It's tough, very tough.  And I think the time you're going through now is probably the worst - it's the waiting and the uncertainty.  

I was diagnosed with lung cancer (7 cm tumour in the top right lobe) in February last year. I found that it can feel as if you're on a roller-coaster as you go through PET scans, CT scans, a bronchoscopy (that was terrible, I will never accept to have another one! and the results were inconcusive anyway, so they scheduled a CT guided lung biopsy which was fine.) I was under the care of the team at Worthing hospital and they were amazing.  I was referred for surgery to Guy's hospital in London, had the pre-assessment meeting in mid-April and had the surgery just over a week later. I am so so lucky that the surgery was successful, they removed the top right lobe, and all the mediastinal lobes on the same side (down the middle of your chest, next to your trachea) as a precaution and two of the nodes were found to have "micro-involvement" according to my surgeon but the cancer hadn't spread anywhere else.  In June and July I had three rounds of adjuvant chemo, and then in November I was given the all-clear.  

Like you I felt extremely calm.  I felt I had no control over what was happening, but I could control how I behaved and reacted. I honestly thought I would only live 2-4 months so I told everyone about my diagnosis as soon as I found out, and put my affairs in order, and that somehow made me feel a lot better about everything.  I also felt (and feel) guilty about smoking for most of my life, but the irony is that I had given up over four years previously!  Telling my husband was very hard, and telling my children was heart-breaking, my three big sons, and one of them sobbing.... like you I felt so guilty. 

I send you every good wish for the next few weeks as you go through the process of the diagnosis, the staging, your options. And I wish you much strength.  You will meet some wonderful people, and I've found that no matter how bad things are, you will _always_ hear stories that are worse than yours, which can be very humbling.  Please keep in touch and let us know what happens. 

Pamela x

 

Re: Newly diagnosed

12 May 2018 20:10 in response to Mushti

Hi Mushti

I wanted to send you best wishes for your pre-op meeting on Tuesday, and for your surgery on the 24th - that's my birthday, so I will think of you specially!  I must tell you that my lobectomy surgery was a whole lot easier than I imagined, the state of the skill and expertise of our surgeons these days is amazing.  Don't get me wrong, it's not a total walk in the park, but it's certainly OK and do-able.  They will give you good pain relilef afterwards, including a little pump which you administer yourself when you need it.  And they get you up and out of bed asap, you will probably have a drain or even two, and a little cart which you have to take everywhere with you hooked up to all the tubes and things.  I met some wonderful women in my ward, all having similar surgery and it was a very positive experience, so I hope this encourages you.  That lovely feeling when you wake up and you know the cancer is _gone_!  

I managed the notification process by telling everyone very soon after I found out tht I had lung cancer.  I told family and close friends in person. And then I told others (all over the world) on Facebook.  The response was absolutely fantastic, so I could recommend this.  We need to take some of the stigma out of lung cancer - it can happen to anyone, and one out of six have never smoked, apparently.  I hope your work mates are as lovely about this as you deserve. 

Sending you every good wish, and I hope you'll let us know on this amazing chat list how you get on. I'm waiting for my 12 month follow-up CT scan and feeling a bit nervous - it feels as if the feeling of holding your breath never quite goes away!  Knowing others who are on the same journey is very comforting!

Pamela x