Harrypalmer

Hi Rob, sorry that you have found yourself on this site but welcome and be assured you couldn't be in better hands than of these incredibly amazing, caring, helpful and supportive people. As hard as it is you'll just have to be patient just a little bit longer for your results, we've all been there and know what a frightening time it is. For the sake of your family put on a brave face and smile until you have a full diagnosis and then it might not be as bad as you think and even today with advanced treatment there are so many survivors stories. You can also speak to one of the nurses on this site. Stay strong and above all positive. Moni x

Hidden

Hi Rob, It must really scary and frightening for you and your family at the moment but as Moni says you must wait until you have a full diagnosis. It took several different tests for my diagnosis to be confirmed but luckily I was able to have surgery. There are many people on this site than will confirm that even if the diagnosis is not what you want to hear there are many treatments available and although it is easy to say, stress and worry won't help. I was pretty scared myself. What you should do is write down a list of questions to ask your oncologist at your next appointment and try and have someone with you who can help you to take in any answers. Please come back on and let us know how you get on, we are all rooting for you.

Rab

suesal123

Hi Rob,

I think that the waiting to find out what is wrong is almost the hardest part as you can only imagine the worst. As with the other comments I too had to wait a few weeks for my diagnosis with one test leading to another.

Try not to worry too much as there are so many different treatments available with more coming all the time. Make sure you are tested for any gene mutations as there are some excellent new targeted therapies which are showing good results. I had amazing shrinkage in my tumour with Gefitinib/Iressa with hardly any side effects.

This site is great for information and support. We're all here to help each other through good times & bad.

Keeping everything crossed for you

Sue

robber12 in reply to suesal123

Hi Sue. Did they tell you anything at the beginning? The oncologist said I had a tumour that was more than likely cancer and the Nurse said she couldn't tell. I realise they cant tell till they have done all the tests but the waiting is sooo nerve wracking. This lest 3 weeks seems like an eternity. What were your symptoms and how did you feel. Regards.

Rob...

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robber12

Hi all.

Thanks for all your replies.

I have just heard from the nurse and she said:

"The bronchoscopy was negative, so we will be proceeding with a CT guided lung biopsy and EBUS at Gloucester, so please expect letter through the post".

I don't fancy another tube down my wind pipe but will have to put up with it.

On top of that my lung feels inflamed again and feels warm also my back hurts.

Thanks for listening to me.

Regards.

Rob....

Hidden in reply to robber12

Hi Rob, I also had the CT and PET scans followed by a bronchoscopy then a mediastinoscopy then the EBUS to try and get a sample and eventually the CT lung biopsy worked. I didn't think the EBUS was as bad as the broncho but that may just have been me. Please let the nurses know about your concerns and they can then do their best to relax you, and your windpipe, before the procedure. Good Luck

Rab

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robber12 in reply to Hidden

Hi Rab and thanks for your replies.

The Broncho wasn't very nice so im glad to hear that the EBUS wasn't quite so bad.

I will try to not think about it.

Regards.

Rob....

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suesal123

Hi Rob,

Like you they just told me that it was likely to be cancer but could not confirm that without a biopsy. I had a bronchosopy but they couldn't get a sample so I had to have a CT guided biopsy as you are going to have.

Don't worry it's not another tube down your throat. They give you a local anaesthetic in the back of whichever lung they are taking the biopsy from and then insert a needle. They then put you through the CT scanner to make sure the needle is in the right place and then take the sample. It really isn't too bad - the worst part is the anaesthetic injection. You'll probably have to stay in for a few hours and lie still and then have an xray to make sure there's no air in your lungs and then home. Then it's just another wait for the results I'm afraid

Regards

Sue

robber12 in reply to suesal123

Hi Sue.

I went to my doctor today and she gave me some Amoxicillin 500mg anti-biotic for my inflamed lung. The oncologist also told me to ask for a PSA blood test. I think I am going to have a bone scan as well because my back is aching but I think that is just my lung and coughing so much. I googled EBUS and that looks like another tube down my wind pipe

It sounds like you were in exactly the same position as I am now so I hope you don't mind me going on

Regards

Rob...

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suesal123 in reply to robber12

Hi Rob,

Nobody here minds you "going on" we've all been there and in the future will need advice from others who have had treatments or situations which we encounter later. Only too happy to offer any advice. Sorry I had not heard of EBUS so could only comment on the Ct biopsy. Good Luck anyway and hope you get some answers soon

Sue

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Hidden

Hi Rob,

You are correct in thinking that the narrow flexible tube is inserted into your mouth. The test is not painful but you may have a sore throat for a few days.

If you would like any further information on tests or other procedures you can call our helpline on 03333237200 to order any of our booklets.

Best wishes,

Beth.

robber12

Hi Beth.

Thanks for your reply.

I'm just desperate for my results as its been over 3 weeks since my first diagnosis.

I'm still waiting for my appointment for the biopsy.

It seems like forever.

Thanks.

Rob....

robber12

Hi all.

Just a quick update.

I have received my appointment for a CT guided biopsy of lung on Wednesday 7th August at Worcester hospital.

Is this the one where they use a needle to get a biopsy? and does it hurt much?

Thanks a lot.

Rob...

Hidden in reply to robber12

Ho Rob, good luck for tomorrow. Hopefully it will all go well.

Rab

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robber12 in reply to Hidden

Thanks Rab.

I have also had an appointment at Gloucester hospital on Friday 9th August arrive today for a Bronchoscopy. I think this might be the EBUS one, im not really sure.

Regards

Rob....

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jeannieA

Hi Rob

Its not too bad. You feel a slight scratch when the anaesthetic goes in .I suffered a punctured lung which happens quite frequently so I'm told and that hurt. Had to stay in hospital for a couple of nights but needed no treatment as it resolved itself. It was painful for a couple of weeks after though. The biopsy was negative and the team were convinced I had cancer so I had to undergo another biopsy. That time everything went OK. I didn't suffer any pain. That biopsy tested positive for Cancer

Jean

swampduck

Hi Rob,

The waiting is a nightmare, reading your post and sensing your anxiety brings it all back for me and guessing a lot of us here.

They also found a 7cm mass in my left lung. I had to have a CT scan then PET scan at Cheltenham, bronchoscopy sample at Kidderminster. I was fortunate enough to have the mutation that enabled me to have Iressa, a targeted therapy, that I am very grateful for.

I am still new to site, and feel so much better since finding it. The people here are wonderful, and support you all the way. I will be keeping my fingers crossed for you next week. Take care.

Karen x

robber12

Hi Karen.

I think the waiting is the worse part for us.

Once we know the prognosis then we can start to make plans.

I am also a keen biker with my Vulcan 1500 but I was on the waiting list for a hip replacement which I suppose will be put back now so I cant even go out for a spin with out hip pain

They say it never rains but pours

Hope all goes well with you.

Rob .....

swampduck in reply to robber12

Hi Rob,

This is true, sound strange but once diagnosed I felt a litte better...now you can start to fight it....

I hope you are able to sort your hip soon...I love going out on the bike...its my escape...you will get there, stay strong, we're all here for you.

Take care

Karen x

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robber12 in reply to swampduck

Thanks x

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RMGillespie

People are mixing up 2 kinds of exams, one with an external needle guided by CT and EBUS which is indeed another tube but this one has a more complex end . I have done both, depending on where the suspect lesions were. EBUS today left me with scratched throat, very tired from sedation but quik report that "it looks benign." Plan to pamper yourself some after, especially with lots of healthy fluids. Best wishes.

swampduck

Hi Rob

Just to say good luck tomorrow. Will be keeping fingers crossed all goes well for you.

Take care

Karen

robber12 in reply to swampduck

Thanks a lot Karen.

I don't know why but I feel really nervous about tomorrow. Silly isn't it.

Rob.. x

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swampduck in reply to robber12

No it isn't silly at all...its a stressful time...may I suggest try to stay calm & relaxed...think of all the places you want to go on the bike...it helped me x

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robber12

Hi all.

Well I had the CT guided needle biopsy yesterday.

They had to go in through the front of my chest and at one point I almost passed out because of the pain.

They managed to get a couple of good samples out though.

The lung nurse phoned me today to tell me that there were abnormal cells found in the tumour i.e. cancer and I would hopefully see my specialist next Thursday.

Although I half expected it I was still really upset.

I just have to wait for the prognosis and course of treatment now.

I hope its not too bad.

Thanks for listening.

Rob x

Harrypalmer

Hi Rob, ouch, at least the biopsy is over and done with, it's funny because I don't remember mine being that painful. Next Thursday must feel like a life time away but do stay positive and have a list of questions about treatment ready to ask the specialist. Let us know how you get on and try and enjoy your weekend. Moni

robber12 in reply to Harrypalmer

Yeah thanks.

To be honest I don't think it usually hurts but I think they probably hit a nerve in my chest due to me being awkward. lol. It feels like I have got another chest infection coming on again and I feel a bit groggy, it is probably due to the stress.

Speak soon.

Rob...

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robber12

Well I got the news today that I have advanced lung cancer with possible spread to my hip. BUT that might be due to arthritis or the arthritis might be cancer? Having a bone scan on Monday. The cancer cant be operated on due to the location and size. I am seeing other specialist within 2 weeks to start chemo and radiology. I feel good at the moment but I know there will be hard times. I am fit and strong and WILL fight this a much as I can x

Harrypalmer

Hi Rob, I'm really sorry to hear about your diagnosis but from your posting you sound much more positive and are so right it could be arthritis in you hip. I also have advanced LC and after 3 rounds of chemo found out today that the tumours have shrunk. Good luck for Monday and keep in touch. Moni x

LorraineDPartner

Hello Rob

sorry to hear your news is not more reassuring. It does sound as though your team are making sure you get all the investigations that will help you get the most appropriate treatment. I hope Monday goes well. Meanwhile if you are looking for any background information we have lots of useful publications on our website or which can be sent to you. I have attached one link below if it is of interest,

documents.roycastle.org/AYQ/

best wishes

Lorraine

on behalf of the Information& Support team

robber12

Hi all.

I went to see the oncologist today and have been told that I do have quite a few spots in both hips and a few in my chest.

They are still doing tests to see if I have a mutation that they can target.

I am having radiotherapy in Cheltenham soon and will be starting my chemotherapy in around 2 weeks.

He expects me to live for around 1 - 2 years or may be a little more due to my relatively young age and fitness level.

We feel remarkably calm under the circumstances and are going to try and fit what we can in to our lives and live a few dreams.

Of course my family and myself are gutted but we can not live being miserable.

We believe that life is for living so make we are making the most of what we have got left.

At least we have got time together.

Thanks for listening.

Rob.. xx

Harrypalmer in reply to robber12

Hi Rob, Grrrrr it makes my blood boil when oncologists make a prediction on how long you have to live. They are not God or mystics Megs and cannot know for sure and should not be playing the guessing game. Everyone reacts differently to treatment and if the first one doesn't work there is always a plan B, C & D. Can I suggest you also join an American forum inspire.com only because they have a much wider network and I think you'll be able to liaise with others who have the same symptoms as yourself. Good luck with the radiotherapy and chemo and keep us updated on how you progress with the treatment. Sending huge positive hugs. Moni x

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LorraineDPartner

Rob

It is good to hear from you and sounds like you are coping well with the information you have. I hope the treatment goes well and that as test results come back you have some treatment options.

You are dealing with this positively, but appreciate it is a lot to process and for your family to come to terms with. Your lung cancer nurse specialist should be able to sign post you to any useful local support services and financial advice (including our grant scheme).

You may also find the Maggie's Centre a useful resource for you and your family

maggiescentres.org/cheltenh...

best wishes with your treatment,

Lorraine on behalf of the Information & Support Team

Lauraquilter

I know the feeling ! I have been planning gifts for my granddaughter as she grows up without me ! Panic , and when I think i get the all clear someone threw a monkey wrench in it . Vent whenever and wherever you feel like it ! I don't want to much of it out on Facebook so i have to do it on sites like this and a few friends . I hope you get great news and are done with bad news !

catlozano2003

Hi Rob,

I just joined and was intrigued with your optimism and strength. I am a Stage 4 colon cancer survivor.

God Bless to All!

Cat.

brenda61

a 3 inch tumor was found on my left lung along with a nodule towards the center of my chest 2 weeks ago have done ct scan pet scan and bronco dr says its definately cancer just waiting on bronco test to come back to find out what kind and what stage so i know how you feel it is very scary but all we can do is be patient and wait for the results my thoughts and prayers go out to you and your family

Sky22

Hi

Sky22

Just. Want to kno how you getting on