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I HATE THIS CANCER!!!


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I’m a 62-year old man with Stage IV Non Small Cell Lung Cancer (NSCLC)

In May of 2017 I was diagnosed with Stage 1 Non Small Cell Lung Cancer (NSCLC) in my left lung, and I was scheduled for surgery within the next 2-weeks. It was devastating news for me and my partner Bob of 30-years and we had much difficulty accepting the news, not to mention my 26-year old nephew who lived with us and whose own mother had died from lung cancer some 10-years prior. On the scheduled day, I got up at 3 AM and showered with surgical soap as instructed, and by 5 AM I was making my way across the still dark hospital parking lot as the sun began to barely rise above the horizon. Once in the hospital, time seem to accelerate and before I knew it I was waking up in the recovery room while being told that the surgeon had removed an entire lobe of my lung. My healing from the surgery went well and in follow up scans 3-months later I was free from cancer and given a good prognosis. Thank God I had dodge the cancer bullet.

Then in May of 2018 routine scans showed the cancer had returned in the same lung and so I spent the summer on chemo and radiation with luckily very little side effects. By fall my scans showed that the cancer had disappeared and I was now considered in remission. I couldn’t believe my good fortune and that I had now twice dodged the cancer bullet. Everything moved along fine and follow up scans still showed no sign of cancer throughout 2019. We were so relieved and thankful to God for this blessing.

Then in May 2020 my CT scan showed the cancer had returned again in the same lung, but this time had also spread to my right lung, lymph nodes in my chest, and my liver. I was diagnosed Stage IV and told that without treatment I had only 6-9 months to live. I don’t cry easily but I just broke down in the doctor office and couldn’t stop crying. How was I going to tell my partner and my nephew this news? Would I have the courage and strength to be able to do it? Would they have the courage and strength to handle it? I left the doctor office in a daze and when I got to my car I immediately called my brother and broke the news to him and my sister-in-law. They were so stunned that they didn’t say anything for the first 10-minutes of the conversation. Finally my brother spoke and told me he was so sorry to hear this and that he and his wife would do everything they could to support us through it all. I then left and went to my partner’s work and broke the news to him. In disbelief all we could do was hold each other and cry. Neither one of us knew how to process such awfulness. I left there after some time and went home where I sat down and talked to my nephew. Since both of his parents have been deceased for some time I am more like a father to him. He did not take the news well at all. It opened up all the old emotional wounds of his mother having died of lung cancer. The news left him emotionally wrought and he has been unable to adequately deal with it in the months since.

I started chemo and immunotherapy in May and will have to continue the treatments until told otherwise. My last scans showed the cancer hasn’t shrunk nor grown and we are thankful for that. However, side effects from treatment have left me very sick some days and very fatigued other days. Over several months and through palliative care the doctors have managed to get my side effects under control and I am physically doing a lot better. Unfortunately I have days that I deal with a lot of depression and anger because of how cancer has changed my life and the lives of people I love. I have friends that were supportive at first but then have gradually slipped away until I no longer see them. I have family members I am close to that I hardly ever hear from anymore. My family that has stuck around and my own partner treat me like I am going to drop dead any minute as they are constantly buying me things or trying to do too much for me. Don’t get me wrong I appreciate the love and concern but it is as though they have already dug my grave and are prepared to put me in it. But the biggest blow came from my own nephew who broke down one night crying saying over and over “everyone I love dies.” My heart broke in pieces over that. Things were so hard for him that he left October 1st to go live with his brother in another state. I miss him so much as he was here with me every day while my partner works so now I am home alone all day. I truly miss his company and have been so depressed over him leaving.

I hate this cancer and what it does to all of us that have it, and the caretakers and loved ones that have to deal with it. I know cancer isn’t easy for any of those involved and I know some folks have a much harder path than I have had. It breaks my heart especially to see the children that are suffering with this wretched disease. I don’t mean to sound like I am complaining because God has truly blessed me and continues to, but this is the hardest road I have ever been on in my life because of the emotional aspects and believe me my life wasn’t easy from the beginning. I just needed to sit down and type this out because I can’t really share any of these feelings with people I know. I have always been the strong one that people come to and now I am not so strong anymore. May God bless all of you that reads this and know my heart goes out to you and your loved ones for your cancer journey.

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Hello and Welcome 

To your new family here where it is safe to say anything.  You’ve elegantly articulated what almost everyone here has experienced to one degree or another.   The loss of a support system is quite common however no one really ever talks about it.   I had a similar experience and what I’ve done over the course of the last two years is rebuild my support network starting with a Lungevity Life Line Buddy.  The phone buddy is a great resource who really understands. Another face to face resource is our Zoom Meet Ups 

https://lungevity.org/for-patients-caregivers/support-services/virtual-meetups-for-lung-cancer-patients-survivors-and

When I was diagnosed my Integrative Oncologist told me to find someone other than my spouse to really lean on to navigate the inevitable dark days.  It was excellent advice, my husband isn’t resilient. 
 

I have learned I can not control how other people cope with my diagnosis but I can manage with all the help I receive here.  I have found over time people take their cue from me and the death stares have slowly disappeared.  
 

Diagnosis is not prognosis, with all the advances many of us are living with this disease as a chronic condition. 
 

I’m glad you found us.  
 

Michelle

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Welcome also.

Yours is a compelling story that matches the pain and anguish of all of us here. I can only offer my experience as a measure of hope. I had 5 recurrences, after chemo/radiation, 3 surgeries, more chemo, then more again, and finally precision radiation. I was diagnosed in February 2004 and progressed to Stage IV. If I can live, so can you!

Stay the course.

Tom

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I'm really sorry to hear about your predicament; cancer is no easy journey. A lot of people on here have had multiple recurrences and are stage 4 and have been living with their cancer being stable for many years. You'll meet many of them on here.

There are many treatment options out there for lung cancer. Perhaps you could try another immunotherapy drug to shrink the tumors. Also you could get a second opinion from a different doctor if you're not satisfied with your current one. My mum's consultant was awful so she switched to another one who is miles better and has more experience. You shouldn't have to settle for what you get.

I wish you strength, hugs and prayers ❤️. Even if a cure is out of the question, lung cancer is no longer the death sentence that it used to be. People are living with stage 4 for many years and treating it like a chronic condition which in the past was unthinkable. Also there have been many advances in treatment over the past decade. My mum was diagnosed with stage 3B NSCLC in Feb and the doctor said that ten years ago her prognosis would have been poor but treatment has come so far and her outlook is positive. Hopefully you'll start seeing good results soon. Keep us updated x

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Glad to see you join us. You certainly had your share of disappointments and bad surprises like many of us but were very good at describing them and getting them of your chest. I have a unique experience because I was a care taker of my first wife who died of colon cancer after 2 1/2 year battle. During that period I was completely ignored by some of my best friends and family members. I am also a lung cancer patient and have been for 7 months. I learned a lot from my first encounter with cancer. I can see both sides of your story.  We can get emotional. We can be disappointed. We can lose faith. We can feel sorry for ourselves but there is one very truth that never goes away. We must first and foremost beat cancer. Our emotions, goals and efforts must all go toward surviving because without surviving nothing else matters. 

The best thing that happened to me is joining this group. It put life in perspective for me and I found friends I never thought I had. I can complain, vent, ask questions and most of all get inspired each time I feel weak. I look up to many survivors here and say if they had the courage and wisdom to beat cancer so can I.  So my friend I invite you to do the same. Make it a mission to get better and concentrate first on beating cancer. We are  here to help. I wish you the best.

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I'm so sorry to hear of your recurrences.  Did you have biomarker testing done?  Do you have any mutations?

Also, to echo what Michelle said, there are many different ways to get support through LUNGevity.  We even have virtual meetups you can attend with or without your partner.  If you have any questions about any of our programs, please just let me know!

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This disease is full of surprises and none of them are good.  But, there are more treatments everyday and you've already heard from people who are still surviving and living full lives.  I've learned in life that what Michelle says is very true; you can't change or control what anyone else does or feels about a situation, you can only change or control your own thoughts and actions to get through difficulty as well as possible.  I pray for you to have the strength and support to be the person writing to someone in the future much as Tom has done for so many people.  You've a got a support family now so please don't be a stranger.

Lou

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Exceptional post. It captured the cancer journey better than any I have read.

I have nothing to add except to wish you the best.  FWIW I am about to start my second journey. Not looking forward to it but going to do it for my family.

Stay strong

Tom

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Thank you everyone for the resource links, sage advice, hope, compassion and concern. I've not talked about any of these things with anyone since my initial diagnosis and it felt good to get it off my chest. I knew that sharing here would be easy since we are all on the same path of sorts.

And to LUNGevityKristin in particular -- I think that my doctor did biomarker testing because when I was diagnosed Stage IV, he registered me for 2-trials and told me that they would use tissue from the original biopsy to determine if I was a candidate. Unfortunately I was not. I'm not sure about mutations at all, as I don't really understand all that. However you can believe i will be asking him about biomarker testing and mutations at my next Thursday Chemo appointment. Thanks so much for asking me those questions. While I have had cancer for 3 years I have pretty much just trusted the doctor and didn't really ever know what kind of questions to ask.

 

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Hello and welcome from me, too. Your story is heart-wrenching. I'm glad you found us. I don't have a lot to add to what others have said. I just want to repeat and emphasize that you can come here and vent and tell us anything and it's OK. It's also OK to ask us any questions  you may have. This is a good place for infomation and support.

Hang in there,

Bridget O

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On 12/1/2020 at 3:18 PM, Tom Galli said:

Welcome also.

Yours is a compelling story that matches the pain and anguish of all of us here. I can only offer my experience as a measure of hope. I had 5 recurrences, after chemo/radiation, 3 surgeries, more chemo, then more again, and finally precision radiation. I was diagnosed in February 2004 and progressed to Stage IV. If I can live, so can you!

Stay the course.

Tom

Tom, you are a true inspiration!  I'm still waiting to get the results from my biopsy on adrenal glands back (should hear sometime this week) but when I think of the possibility of it being a met, I think of you and think "Tom's had bumps in the road and HE'S STILL HERE!".  Lots of inspirations on this forum, that's for sure!  I think so highly of each and every one of 'em!

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You have already received some wonderful advice.  The only .02 I'm going to add is regarding friends and family who seem to have removed themselves from the situation.  I think what happens is people don't know how to "act" or what to say around someone who has cancer and has had their share of bumps in the road as you have.  Some are afraid to say anything about the cancer, some feel that if they don't say anything that they are ignoring the issue.  They might feel in between a rock and a hard spot not knowing how you may feel about it....or they may be afraid of losing control of their own feelings.  I'm sure they are afraid of losing you.  When I was first diagnosed, I was pretty forthcoming about it (and I have to admit I had some pretty twisted humor as well and that really helped me and probably others get through it).  As a result, people would just ask "how are you doing" and I knew what they were referring to and I'd give them the nutshell version, if there was even a version to give.  Then we continued on to talk about other things.

Just a nutshell on me....I was diagnosed Stage 3A in Fall 2019.  Treatment on that was successful and so far it hasn't recurred.  However, I might be having a met in my adrenal glands.  Am just waiting on biopsy results.  But the way I look at it, as long as I'm alive there is always hope.  Treatment for folks like us is advancing in leaps and bounds and my goal is to be like some of these other folks on this forum......perhaps dealing with some nasties here and there but STILL ALIVE YEARS LATER!  Keep your eyes on the prize!  :)

And welcome!  I'm new here, too, and I am so grateful for this forum and these wonderful people!    

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If you are going in with questions, you can always cross check your list with this list.  It is broken down into different sections, so just click where you are on your journey and it will give you an idea of everything to ask. :) https://lungevity.org/for-patients-caregivers/asking-right-questions/questions-to-ask-your-healthcare-professionals

Also, here is more about biomarker testing: https://lungevity.org/for-patients-caregivers/lung-cancer-101/diagnosing-lung-cancer/biomarker-testing

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