The Roy Castle Lung Cancer Foundation

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I'm new and so scared

During December I have various tests including a PET scan due to neck lymph nodes enlarged. Yesterday the doctors told me that this also revealed nodules on the lungs which could well be sinister. The neck node is to have a biopsy tomorrow. The doctors didn't seem to have anything encouraging to say. For 24 hours not sure I have really been functioning despite coming to work. I will not know biopsy results till 23 Jan and unsure how anyone can be expected (or does) cope in this period. I just can help thinking they should just start zapping me with whatever they can and that time is being wasted - sorry. I have managed to avoid Google but if it is what seems likely is that it for me or are there genuinely treatments and something to give me some hope?

Thank you for reading.

Mike

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Mike55Lon

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Hi Mike

I have a nodule on my right lung. They have been monitoring it since 2012. It is possible it may have been there since the year dot. I had part of my left lung removed as it had cancer in 2012. The surgeon wanted yo open to see if the nodule was cancerous but since then it either hadn't or it is extremely slow growing. He wouldn't find it until I was opened up. I didn't want to lose any more lung capacity so i still have it without any problems touch wood.

Wait till you get your results I know it is constantly on your mind until then.

Stay strong and wish you good results an let me know.

Best wishes

Hoggy

Thank you so much Hoggy. Really appreciate your taking the time. Feels like time has stopped in the middle of a nightmare!

Mike

Hi I just had my yearly pet scan and it said 2.5 cm soft tissue lesion rt epicardial phrenic fat extending into rt lung parenchyma worrisome for new metastic deposit. So I’m scared I think my cancer came back, maybe chemo and radiation to kill it but honestly I’m glad it didn’t spread anywhere thru my body just a small node and it will get zapped and might do a little bit of chemo ... does this sound right??

It is a hard time waiting for biopsy results. I know that from my own experience. It feels like your world has stopped and surreal as well. Not an experience that you want to go through. A normal response though. It is good that they are doing the biopsy to see if you do or do not need further treatment. If it is Lung Cancer then there are different type which have different treatments so I think that’s why they usually wait for the results so that they can decide on the best treatment. I wouldn’t google as lots of information is out of date and you don’t know what you are googling for. I know when I was waiting for the results of my biopsy my GP gave me some medication to help me with the anxiety and this did take the edge of things. Roy Castle Lung Cancer Foundation do have a helpline that you can phone too. It might be worth having a chat with your GP to get some support x

Thank you so much for your reply. Really helps hearing from others who (unfortunately) have been through this... x

Stay Strong!! Listen.... I know that feeling of having lost your stomach that you just can't shake for hours or days....this waiting is HARD! I was diagnosed Stage IV NSCLC in April of 2017 and know what you're going through! I wish someone would have told me that none of this moves as fast as I thought it would......I was so scared I was losing ground based on DAYS without treatment......but the reality is that all of this moves quite SLOW. And that's okay! Because 1st things 1st.... you have to keep living and loving! Let tomorrow worry about itself, enjoy today friend!

At diagnosis, I had hundreds of tumors in both lungs, wrapped around my heart, liver, spleen, adrenals, lymphnodes, ribs, spine, hip, femur

.......and if that wasn't enough..... we also found 23 brain tumors.....

BUT.....I'm sitting here 21 months into the battle and I have only ONE remaining tumor in my entire body....(half-inch) in my right mid-lobe lung... and we did radiation 2 months ago to hopefully destroy it. SOO, point being, Miracles happen every day.....stay positive, live and love!

Bren

Thank you so much for taking time out to ease my worries. Wishing you continued success. Thanks again.

Omg thats fantastic news. From all those tumours down to one. You have some guardian angel looking after you. I also like your " living and loving and letting tomorrow worry about itself ". I wish i could think like that. Your an inspiration to everyone and miracles do happen. Thanks for sharing. I love these happy stories.

Hi Bren, very encouraging story. Thanks so much for sharing. I am interested to know if you had a mutation and what kind of therapy you are on. I was diagnosed in Dec 2018 with stage IV NSC Lung Cancer with EGFR + 19del. Came to light due to a sudden malignant puerperal effusion in the left lung with metastasis to plural lining, plural cavity and lymph nodes in chest and upper abdomen. All the best! Basha

Same exact thing here.... EGFR, Exon 19 Deletion. Please reach out via email (I messaged you here on this platform). God Bless! - Brendan

What does this mean help????

Wow That is a positive story I know it was not aimed at me ,but you have inadvertently helped me too .For that I thank you . To Mike I say each of us are different and you are at the hardest point no one wants cancer pitching up await all test results first to be sure of the facts ,and if it is cancer read this book which is good at the beginning of the journey to spell out how things work ie treatments and how cancer develops which is not as fast as we all think ."Cancer is a word not a sentence ,Dr Robert Buckman",I wish I had looked at this book in the beginning it would have calmed me a little .The trouble with clinics is there is never enough time to discuss stuff oncology is busy and the big stuff sometimes gets side stepped a little ,when you get home you think of a million questions you forgot to ask .Make a list before you go it helps . I will be thinking of you try not to let it gobble you up easier said than done and remember you are not alone .Diane

Diane.. some great advice ...thanks and really moved by everyone giving me a little of their time. I will look up the book. Mike

Mike the wait for decisions on a treatment plan is awful. My husband had an mri scan, pet scan , brain scan and biopsy’s . These were all done within three weeks in late November early December. The biopsy’s had to be sent to a lab in Birmingham so the genetic markers of the cancer could be identified. That took 10 days. Which was like torture. But it is really important that they know precisely what they are dealing with before treatment starts. There are so many variations on treatment that it needs to be targeted. I’m new to this and trying to be as informed as possible to help my husband and to ask the right questions at consultations. This site has been very helpful ,so also has the Macmillan nurse allocated by the hospital.

We now know he has cancer in the upper left lobe of his lung, both sides of the lymph nodes and two small spots in the brain. We saw the oncologist mid December but because of Xmas treatment (chemotherapy) doesn’t start until the 16th January. I’ve no idea how he has held it together over Xmas and now. He just wants it to start, to find out what he’s dealing with and give it his best shot.

The wait is dreadful but hold on to the fact they need to know what exactly they are going to treat so they don’t waste time on not giving you the best and most suitable treatments.

Thank you for replying and the advice which has helped understand a two week wait from today.. off now to Guys for biopsy! I suspected something was brewing over Xmas and being jolly was certainly tough so understand what your husband had to go through. Fingers crossed for the 16th.

Sorry to read of your distress and anxiety which is perfectly normal in the circumstances. In our 24/7 world we want everything to happen quickly but when you see some of the processes that have to happen now in lung cancer to determine the specific treatment, it is really amazing that it happens in the timescale it does. In Dec 2010 I had surgery to remove half my left lung and a 'mass' that had shown on a chest x-ray when I turned up in A&E mid October with breathing/swallowing difficulties. Due to the various scans (CT/PET) they did not do a biopsy, stating the mass had to be removed and then determine what it was and then determine the treatment. I did not get the results until 13/1/11 which was mucinous BAC - a type of adenocarcinoma - non small cell lung cancer so I had 3 months of not knowing what it was. Yes, we tend to think that every day or second is wasted time but it isn't - giving patients the incorrect treatment or in the incorrect order (as many patients have combination therapies) can harm the outcome so it's imperative that all the tests are done upfront. As others have said, the internet contains woefully out of date information although Roy Castle lung cancer foundation has some good information on its site even if it's not the best to navigate - find it under the top bar ' how we help', 'information', 'lung cancer', living with cancer, lung cancer treatments. However I'd wait until you have a definite diagnosis - otherwise you will worry yourself witless. Better to let the process take place, get on with living as best you can, and then cope with whatever is rather than what ifs. Glad the book helps others - I found it about 9 months after my diagnosis - after also reading 'anti-cancer - a new way of life' by Dr Servan Schreiber. Macmillan and Roy Castle have telephone lines to call. Good luck with your journey whatever the outcome - and keep fingers crossed for you.

Jeanette, your reply was helpful and I appreciate they need to know what they are dealing with. I am avoiding the internet and wife has ordered some recomended reads. Waiting now to get the full conclusions but so hard no to think the worse. Mornings seem the most difficult for some reason. Thanks, Mike

Hi Mike - I was told what it almost certainly was just prior to a bronchoscopy then had to wait 5 days because of August bank holiday etc to get a “negative result but were not convinced it is so more testing”. result! The next 2 weeks of testing /waiting were agony - mixture of fear and very slight hope -so I feel for you. I walked miles and to be honest had the doctor give me 10 days of a mild sleeping pill and I took half (‘!) a pill when I got desperate! Confirmed adenocarcinoma nsclc tumour with suspected lymph glands as they lit up on the PET scan too. Late September 2016 had lobe lobectomy via open Surgery Lymph glands when tested post removal were clear!No chemo! Surgery only .Checked every 3 months for two and a gal years now on six monthly checks and annual MRI of brain. Take one step at a time - even if things are bad they are sometimes not quite as bad as WE think .

Thank you for the reply. They have all helped me lots over the last week. Mike

My brother has had a benign nodule on his lung for several years - being monitored by x-rays every two years and removable if it starts to grow. Meanwhile I didn't have any nodules but got lung cancer last year - half a lung removed and low risk of recurrence which has changed my view that a lung cancer diagnosis is an automatic death sentence - it needn't be. Lymph nodes enlarge for reasons other than cancer I think...eg infection. The best phrase I heard from a mental health therapist is 'don't catastrophise - go with what you know' . Excellent advice. So natural to start fearing the worst based on speculation of what you don't know and may never happen, wasting these days of life you have been gifted. Nevertheless - the waiting is hell - I agree!.

Hi.. thank you so much for replying. I'm am working not to speculate! Best wishes, Mike

Hello Mike, firstly welcome to the club no one wants to join! As you can see from my posts I had my entire lung removed in July 2018 as a result of a large squamous tumour. I also got the bonus ball with emphysema. Following the evacuation of my left breathing vessel I struggle with breathlessnes , but continue to walk up to three miles a day so far. Tends to take care of the morning lol. I’m currently awaiting a ct scan result.

Personally I would never take advice from me, but I would say stay strong physically and mentally, maintain a sense of humour and keep away from google ‘the modern day harbinger of doom lol .

Be Lucky

Col

Thank you for your reply - I will take your advice re staying strong or at least work hard at it! Take care and wishing you luck.

Hello Mike55Lon,

I am sorry to hear that you have had this news, the responses above are great and must give you some reassurance, there is an abundance of positive information in them. As many have said the this period is very difficult and it is only natural that until you get the results that you will feel anxious. This is an understandable reaction as no one can give you direct answers until your test results are complete.

If you would like to talk things over please give us a call on our nurse led helpline freephone 0800 358 7200

Kind regards

Roy Castle Helpline

Hi Mike I really do feel for you. I went through exactly the same un October. The waiting is so hard. I was diagnosed with Lung Cancer stage 111b which is a tumor on the lung also in the lung lymph nodes and lymph nodes in my collar bones. The test results always felt like they took ages and I kept panicking they had to start treatment asap or it might spread. But it was explained by my oncologist that all tests had to be done to find the right treatment that would be best for me. Glad to say I am now on immunotherapy Keytryda. Which I may say is less cruel than chemo. All I can say is stay strong I prayed a lot and hopefully you have family to help keeo you strong and positive. My thoughts and prayers are also with you. You will get through this. Stay away from Google it will only scare you. This is a good site for help and advice. There are many people on here that have been where you are now and here to listen and help.

Hi Ollie, sitting at work with sore neck from biopsy this morning. The hospital staff were so lovely and kind and put me at ease. Sorry to hear you are going through similar. Clearly the 'zap me now' worry is common! After a few looks on Google I firmly believe Dr Google should be banned and must do more damage than good.

Thanks so much for reading my post and taking time to help.

Mike

Mike you are not alone. As you can see many of us have been where you are. My initial reaction when I found out I had first breast cancer then lung cancer, which was found by accident, was "get this out of me". I did have surgery for both but surgery is not always the best approach. Since 2015 when I had my surgeries, many tests and targeted treatments have been developed. The wait may be well worth it if your treatment can zero in on your particular tumor type. The waiting is excruciating, but you will make it.

I hope this helps. Take care. Jean

Hi Jean. Your mail did help a lot so thank you. I think the comment "Get this out of me" sums up very well how I was feeling. I now understand that the doctors need a little time to do their work. Wishing you well. Mike

Glad to help. Let us know how things are going. Often once they have all the information, things move quickly.

Take care.

Interested to hear you've had breast and lung cancer too - as have I. Do you think there is a link?

It's hard to say. My oncologist was shocked when they found the lung cancer while preparing me for radiation therapy after a lumpectomy. I had no symptoms. The radiation never occurred because everything shifted to diagnosing and treating the lung cancer. I guess it's the luck of the draw.

Gosh - you were lucky to get the lung cancer discovered - although you can't have felt lucky at the time. Sounds like they were both primaries as were mine. Mine were 20 years apart. Your lung cancer clearly wasn't caused by radiotherapy. Perhaps just bad luck as both are common. I think cancer twice over is enough don't you?!

Definitely. Yes, both were primaries, so treatment for one could have encouraged growth in the other. Damned if you do and damned if you don't, so surgery for the lung cancer and anastrazole for the breast cancer after a lumpectomy.

It's so hard when people get another cancer to understand whether it's linked to the first or not - my dad had his first bowel cancer almost 30 years ago when he was in his late 50's and 6 months after his first resection had a colostomy (but had a surgical trial - irrigation method rather than bag). He will be 89 next month and 2 years ago had another bowel cancer and yet more of his bowel removed - and has had skin cancers removed in the intervening years. The skin cancer they believe was caused by ultraviolet light treatment he had as a young man for acne/bad skin and possibly working outdoors but they said the third bowel cancer was unrelated to the others and is another primary. We're just grateful he's still with us as we did not expect him to reach 60 never mind almost 90! There has been recent evidence that some people have developed lung cancer who had radiotherapy for breast cancer some years ago. I have a friend who has had to have heart surgery and a device like a pacemaker fitted due to heart failure caused by the radiotherapy treatment she had when she was younger for Non Hodgkins Lymphoma. Back then, they did not know that radiation damaged the heart but as she says, at least she is alive to experience it. Treatments and knowledge through research to gather evidence change all the time. good luck.

I’m going thru the samestuff Mike, don,t be scared , nowadays a lot of stuff can be cured and if we think positive itwill help. I find talking with others helps alot. I will pray for you ,,, and as you can see many people get well and live long lives. I take xanaxto sleep and help with anxiety. Keep in touch

Thank you so much your taking the time to read my post and reply is really appreciated as are the kind words. Mike

Hi mike good luck for Wed got fingers and toes crossed for you please please when you feel ready let me know how things went. Pray you get good results. Prepare for the worst and hope for the best.

Janet x

Hope you are doing well, Mike, two months later. I just got word chest CT shows two nodules, pulmonologist believes they are cancer. Just the beginning. "Waiting" for PCP to call me. Need to identify next steps (biopsies?), find oncologists in two different locations (we are moving in a month), it's all quite numbing & overwhelming at the same time.

Any recommendations of most important steps to take?

Thanks in advance.

Irene

Have you asked for liquid biopsy? Basha

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