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Greetings all. I have been reading this forum today and getting some great information from all of you. My name is Mike and I am 59 years old and am from Perth in Australia. I was a pack a day smoker for over 40 years until I gave up two days ago (using a vape to help me on that journey). I have had a fairly juicy cough for many years but have always just put this down to a smokers cough. Have lost count of the amount of times I tried to give up. Last successful one was almost 6 years ago after my sister died from Ovarian cancer. I gave up for 9 months until out for dinner and drinks on the first anniversary of her death when a friend offered me a smoke and I stupidly accepted and the cycle began again. During that 9 months my cough disappeared.

On a recent visit to my doctor he suggested at my age it would be a good idea to get a calcium score to see how my arteries are going. I had the CT on 1st April (Will spell out dates as US and us have the opposite day and month order when using numbers). On the 3rd my doctor rang me and said he had a report from the scan and it doesn't look good as it states there is a small spiculated lesion and spiculated is often a sign that it is cancer. He didn't know the size as he had only seen a report not the picture and told me he had referred it on to an specialist and I would hear from him the next day.  

The next night the specialist called me to discuss the next steps. He said he had a look at the scan and his words were it is a tiny suspicious lesion at the top of the right lung. He stated he thinks it is a small cancer but we need to confirm this. I asked the size and he said he didn't have any measuring tools there but about 1.5 cm (The call was at 8-30pm so I think he was at home after dinner). I asked if there was any indication of enlarged lymph nodes on the CT and he said CT scans are not really designed to show lymph nodes and he doesn't really want to go into much detail when first talking to a patient over the phone without have met them with time for a more detailed discussion. I am hoping if there were signs of enlarged nodes this would have been on the report to my doctor and he didn't mention that so I have my fingers crossed. He also said there are some signs of emphysema which was probably the reason for my cough! 

So next step is waiting for a PET scan booking and have a Lung Function test booked for 12th April. He said the plan will be to see if it has spread and see the results of the Lung Function test which will allow him to see the choices in surgery that I have but it appeared that his initial plan is to remove it immediately through surgery. I don't know at this stage if this would be removal of lesion or lobectomy. I just have to wait and see but as so many others state the waiting at this early stage is doing my head in. I spend so much time thinking about how stupid I was to smoke and not listen to all the research and give up years ago. I have myself to blame but I have read so many posts from non smokers and my heart goes out to them as what did they do to deserve this? I guess as I have always said life is just one big raffle where you don't want to win a prize!

Thanks for all your information and encouragement on this forum and thanks for your time. And by the way my calcium score was terrible so after this I have more work to do to reduce my chances of a heart attack. Oh dear!!!!

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Sorry mods, accidentally uploaded it twice by using back page arrow. Can you delete one please as I couldn't see how to!

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Hi mikey 

Sorry to hear your news Goodluck with everything it is very hard to digest in the beginning, when I was diagnosed I went to pieces for a while but it does get easier, I hope you get some good results and a treatment plan started soon all the best 

Take care Justin 

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Thanks Justin

Just sent a reply to your posts before I saw this response. You are a good man.

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This is a great community to be part of and there's a lot of fantastic survivors stories, I think we need to be a part of those stories so we all have to fight, all the best keep us up to date with everything 

Justin 

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Mikey,

I see that Tom Galli responded to your other post.  He gave you some good information and just know that lung cancer is not the automatic death sentence it once was.  You've come to a good place for fellowship and support.  We'll be here with you on this journey.

Lou

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1 hour ago, LouT said:

Mikey,

I see that Tom Galli responded to your other post.  He gave you some good information and just know that lung cancer is not the automatic death sentence it once was.  You've come to a good place for fellowship and support.  We'll be here with you on this journey.

Lou

Thanks Lou and also thankyou for the hours that you and others like you spend responding to and reassuring people regarding the journey ahead. I think I am becoming more optimistic each day after the initial shock. There seems to be no great urgency from my specialist to get things started which whilst frustrating as I just want the plan in place and to start it, I am also thinking if he thought it was really bad I would be in there straight away.

The waiting is the worst bit! Lets just get on and take care of this!!!

Cheers

Mikey

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2 hours ago, Justin1970 said:

Hi mike 

How are you coping hope your well,  goodluck tomorrow with the lung function test,stay positive and strong all the best and take care 

Justin 

Thankyou so much Justin and I appreciate it more than you can imagine. I had a PET scan today and a imagining CT so hopefully I will get some results tomorrow. The last week has been a roller coaster and teaches you a lot about how your brain works! It can go from optimistic highs at one stage and an hour later you are in pessimistic lows! I spent 35 years in Air Traffic Control where pressure is not an issue and you deal only with facts and then you process and deal with them. But I haven't been in this position where you have to wait ages to get the facts before you can deal with them. Everyone is so right in that the waiting is the worst part of this whole journey. I will ensure that I keep my progress updated. I think it is vital for those that read these threads as it is frustrating to read those that start a thread but then never update. For newly diagnosed people you want to read the journey and find out the end result. That is why I appreciate your honesty and continued posting through your extremely difficult journey and I am so joyed to see you are finally getting on top of this and wish you nothing but the best for your long and happy future. I guess the thing we all have in common is that we are going to spend a fair bit of time in our futures being fed into cylindrical scanning machines! But I will be happy to do that for a long time I hope. I will keep you updated and for you to send me best wishes tonight is testament to what a magnificent person you are. Who would remember that! 

Cheers to you my friend.

Mike

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Hi Mike 

It's nice to keep in touch and update others going through the same process, I hate the fact that people are going through the same feelings I went through and just want some reassurance and good stories to help them,if I can help in anyway then it's worth more than anything, I know how hard this is I've really struggled with my feelings and depression and just wanted to give up but I did eventually get my head round it all and so will you mike and everyone else in our situation, I really hope you get some great results from your pet scan and tomorrow's test, everythings crossed for you and please stay in touch I really appreciate your replies it helps me aswell take care 

Justin 

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Hello all and especially to Justin for his thoughts.

I was determined to keep all updated with my progress as in the early days of diagnosis we are all filled with uncertainty and I took great solace in reading others posts on here reading about their journeys. When faced with a diagnosis in the first few days life is a roller coaster and as so many of you state the fear of the waiting for a diagnosis is the worst time. We all just want to know where we stand and what is my journey ahead. I was frustrated by those who make one or two posts at the early stages but never update as I really wanted to know what their journeys were and how they fared in their battle. To those of you that continued their updates and to be very open and frank as you battled your sometimes difficult journeys, I both salute you and thank you.

I have spent over six months planning a 7 month trip across the top of Australia with a couple who are good friends of ours and we have made so many bookings for once in a lifetime experiences such as swimming with whale sharks off the North Western Coast of Western Australia and helicopter flights over some of the biggest monoliths in the world and my world was shattered on the 1st April with the discovery of a lesion on my right lung. I have spent the last 10 days on this roller coaster ride of has it spread, how bad is it and where to from here and do I cancel all bookings?

I had a PET scan and CT imaging scan yesterday, and a respiratory test today. The receptionist told me it can take up to 10 business days to get PET scan results back and so my wife and I came home and spent the morning in deep depression thinking how can we last that long waiting to find out what the results are. My doctor said that is rubbish and they get them very quickly. Anyway the specialist rang me about 5 hours after my respiratory tests. He said the scans showed that there is a small active cancer cell in the top of my right lung and the good news is that they have caught it very early. He said this is unusual as like me there are no symptoms til much later stages, and it is only through some coincidence which in my case was my doctor saying at your age (59 years) we should do a CT scan to have a look at your heart arteries and the scan also sees your lungs and they picked up the abnormality. There is no spread anywhere in my body.

The respiratory test showed that although showing slight signs of early Emphysema they were in fact in excellent condition, much to my surprise after years of what I classified as a smokers cough! So I am booked in for surgery next Tuesday and it will be removed. I asked will I have follow up chemo and he said no we have it so early I have no doubt that after we take it out you will be declared No Evidence of Disease. I said I gather I will need another scan after about 3 months and he said no, not that quickly. Once we take it out and you recover go and do your 7 month trip as we wont want to see you before then! So I think my trip may be delayed about 2 weeks. But as far as I am concerned I have won the biggest lottery anyone could hope for today. I am feeling emotions that I don't think I have ever felt before going from the lows of this morning to the highs of this afternoon. 

I write this post to update you and celebrate my joy at my prognosis. But I also realise that there are many faced with a much more dire situation than mine and I would like to say my thoughts and prayers are with you and the advances in treatment give us all hope. I also write this for those that may have received news in the last few days to say stay strong as you don't know what your diagnosis is until they tell you and the waiting is the worst bit.

I will let you know how the surgery goes after I get home. I think its about 4 or 5 days in hospital but I am more than happy for that. Thankyou to all for your support and this is one of the best forums I have found in my life.

Cheers

Mike

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Hi mike 

Thats brilliant news I'm so pleased for you, goodluck with the surgery and enjoy your trip of a lifetime you certainly deserve it, I hope you stay in touch it's been really nice talking to you and hearing your news makes me so happy and if you can get NED Thats fantastic, you and the family need to celebrate now and put the lows behind you, I'll keep you updated on my journey and I hope its as good as yours is going all the best 

Take care Justin 

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Hi Folks

Time for my update. Met the surgeon on Wednesday and he cant do next week so am in for surgery on 26th April. He will take out a wedge and then send it off for biopsy and he said if t is benign then they just sew me up but this is highly unlikely as it is showing to be active so then he will take out the top third lobe of of my right lung, the connecting strands to my windpipe and the connecting entry to that part of my lung including the lymph nodes. He thinks it will be about a month and then I am free to travel and I am stuck with him for the next 5 years for scans each 6 months to to make sure there are no nasties that escaped. But no follow up chemo or anything as they are confident it is so early that nothing has escaped. 

I am so lucky that this has been picked up early and I guess I wont know until the biopsy after the lung has been taken out as to what type of cancer it is and how aggressive it was/is. I am also intrigued to know if it the result of years of smoking or if it could be the result of home renovations and the removal and disposal of asbestos products about 25 years ago. I tend to think it will be smoking related!

I realise that this forum is generally US based and I am in Perth in Western Australia which is a city of about 2 million people. But you need to realise that we are one of the most advanced medical research and treatment cities in the world. We have produced people like Fiona Wood who produced the synthetic skin to treat victims of the Bali bombings. I guess what I am saying here is that I feel in very confident hands and the specialists and surgeon's are giving me so much confidence. I apologise if I appear condescending with my statements but I am sure many in the US would regard Perth as an outback town. However my specialists and surgeon that I have dealt with have been the nicest people you could ever meet and give you nothing but confidence. You know when you meet some doctors there can be a bit of an us and them syndrome but I have found the surgeons to be a much easier bunch of people to deal with that love a joke and just make you feel so much at home.

So just need to address my high Calcium score with the cardiologist this week to make sure its OK to have surgery. Will keep you updated  but all is looking positive at this stage.

Thanks for listening.

Cheers

Mike

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Mikey,

I'm glad to hear that your confidence in your medical care is high.  It's always a good thing to know that your health is in good hands.  Since you'll be having that surgery I want to share a blog I wrote called "Thoracic Surgery Tips & Tricks".  It discussed what to do pre-surgery, in-hospital, and upon return home.  It can be found here.  I hope it helps you to go through this more easily.

In the meantime, please keep us updated we will be waiting to hear about a successful surgery and that you are doing well.

Lou

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Hi mike 

Brilliant news shame about the wait but definitely fantastic outcome I'm so pleased for you, goodluck with everything and the cardio stuff aswell, I had a meeting yesterday with my oncology team there happy that everything is going back to normal and getting strength back in the right hand side, I've dropped the amount of steroids down for the next 2 weeks then stop altogether to see if swelling has gone and all is good,my next scans are in june so fingers crossed, anyway your news is the best ever take care speak soon 

Justin 

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8 hours ago, LouT said:

Mikey,

I'm glad to hear that your confidence in your medical care is high.  It's always a good thing to know that your health is in good hands.  Since you'll be having that surgery I want to share a blog I wrote called "Thoracic Surgery Tips & Tricks".  It discussed what to do pre-surgery, in-hospital, and upon return home.  It can be found here.  I hope it helps you to go through this more easily.

In the meantime, please keep us updated we will be waiting to hear about a successful surgery and that you are doing well.

Lou

Thanks Lou. A great post and I have read it and hopefully absorbed all of your tips. I am sure I will be reading it again in the near future.

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7 hours ago, Justin1970 said:

Hi mike 

Brilliant news shame about the wait but definitely fantastic outcome I'm so pleased for you, goodluck with everything and the cardio stuff aswell, I had a meeting yesterday with my oncology team there happy that everything is going back to normal and getting strength back in the right hand side, I've dropped the amount of steroids down for the next 2 weeks then stop altogether to see if swelling has gone and all is good,my next scans are in june so fingers crossed, anyway your news is the best ever take care speak soon 

Justin 

Thanks Justin.

I am so pleased to hear of your positive progress. I hope your right side strength continues to increase and that the June scans are the best that we can all hope for.

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Thanks mike 

I definitely feel a lot better about everything at the moment but it's still worrying I guess that never goes, how are you getting on with the no smoking it's not easy when your so stressed out is it, I gave up the day I was diagnosed last August, don't really know how I managed it but I don't miss it now nearly 8 months on but vaping does cost more lol, take care mate 

Justin 

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1 hour ago, Justin1970 said:

Thanks mike 

I definitely feel a lot better about everything at the moment but it's still worrying I guess that never goes, how are you getting on with the no smoking it's not easy when your so stressed out is it, I gave up the day I was diagnosed last August, don't really know how I managed it but I don't miss it now nearly 8 months on but vaping does cost more lol, take care mate 

Justin 

Thanks Justin

Giving up hasn't been too bad. Almost 2 weeks now. Helps when you have a very good reason for doing it! I am also vaping but it doesn't cost too much here as we have the most expensive cigarettes in the world thanks to a 200% increase on excise over the last few years thanks to our Government. A packet of 20 is over $30 (or about 15 pound) now.

Take care and Ill update when home from hospital hopefully about the end of April.

Cheers

Mike

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  • 2 weeks later...

Hello All and time for an update.

However firstly my greetings to you Justin. You are a very special person and despite your personal battle you have the time to comment and offer encouragement to new posters, but an even more special trait is to remember others significant upcoming dates and offer your thoughts and best wishes when those dates come around. I find this truly remarkable and Izzy I know you are proud of your son and so you should be as he is a special person.

So I had the surgery on 26th. Went into pre op about 0730 and was back in my room by 1130. All went well and the wedge biopsy showed an active cancer and so right top lobe was removed. Was eating bacon and eggs by 1300 as I was starving. Hospital staff were amazed that I needed no pain relief and seemed to have no adverse effects. Did not need to administer any patient controlled medication and I think the regional epidural helped enormously. The worst thing for me was the catheter! Sleep has been difficult especially with regular obs by hospital staff and having a 30 degree angle on the top half of the body due to the drainage tube. Liquid drainage dried up very quickly but I had some surgical emphysema so the bubbling has continued and delayed my release.

However I have seen the specialist today and the biopsy has been completed. It appears that it has been captured very early and the biopsy has shown no spread to anywhere else confirming the lack of lights on the PET scan. The biopsy report states Invasive Adenocarcinoma in right upper lobe up to 14 mm and 90% acinar predominant. Only one lymph node examined being Station 10 which is not positive. 

I am having the tube out tomorrow and being released with the next action being a scan in 6 months time. I have people telling me I should buy a lotto ticket but I say why as I have already had my piece of luck and I have avoided a huge bullet. Whilst I am thankful for my result I cannot help but feel guilty for those that do not experience the luck that I have and are diagnosed at a much later stage and face a very different journey to me. However what I do say to myself is that 4 weeks ago I was not part of this family and now I am. And every family has members of many various traits, however if they are a close family they treat all as equals and look after every member. And that is how I have felt since reaching out to you good people.

During my short time on this journey I have been surrounded by fantastic supportive people. The medical staff I have dealt with and the hospital staff over this last 6 days have been outstanding and I am truly humbled by what these people do on a daily basis. Even though my journey has only been 4 weeks I can look back now at the wisdom of some on this forum. The initial stages of uncertainty when all you want are answers is probably the most frustrating thing I have ever experienced in my life. I tried to be positive by saying I think its been found early and it should be OK, but of course specialists will never give you false hope as they need facts so you have to rely on yourself to give you hope. However in that situation the human brain will never allow you to get too positive and will then start to throw in the 'what if's' just to play with your mindset!

The night before I had surgery I was talking to my night nurse about what would happen the next day and I told her I will be up and walking after surgery tomorrow no matter what. I didn't see her again for a couple of days by which time I told her I was on track to do 1500 steps that day just walking back and forth in the corridor as far as my 10 metre length of suction hose would allow me to go. She said I knew you would be doing this as it was obvious from your attitude before surgery that you had the mindset to beat it. She said she has been watching people for so many years that the most important weapon in any battle against illness is the mindset.

So I guess from my roller coaster journey and what I have learned is that I would say to anyone newly diagnosed, your brain is your greatest ally but you need to learn how to use it and that is not easy. I may expand on my beliefs later but I think I have rambled for long enough. I thank you for listening.

Best of luck to all.

Mike

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Hi mike 

I'm so pleased everything went well and your on the mend that's brilliant news and thank you for your kind words, I'm glad your up and about and can go home soon I absolutely hate hospital lol,I wish you all the best luck with everything in the future, 

I have a ct body ct scan on the 9th may to see if everything is still shrinking and no spreading to anywhere else and an MRI scan on my brain at the end of june to see whats going on with the mets, I did get a letter from the oncologist which has still staged me at 3b because they are sure the mets have been sorted so that's a bonus as I didn't like being stage 4 lol, they also said they are still treating me with curative intent so maybe I will get lucky, anyway you take care and get better quickly speak soon 

All the best Justin 

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Hi Mikey, great to hear your news, so pleased with your result, yes Jus is a very special person and a credit to me as a son, he is very mindful of others and tries to support, I hope your future is now brighter and you continue to improve, all the best Isla xx 

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Mike, what a great post. I'm glad you've had such a positive surgical experience. Not everyone does. 

My oncologist is a firm believer in the mind-body connection, and in fact both he and another doctor friend of his have written books that discuss it. I work hard to eliminate any what-if or negative thoughts. Although I've been through some rough times myself, I have mostly retained my positive attitude as well as my health. 

I hope you have an easy recovery and get back to your normal life very soon. 

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