1. < Lung Cancer

Update: Treatment begun

Posted by corywh @corywh, May 8, 2023

Hey all. I just wanted to share an update on things. Brief catch up from other post: I'm 42, diagnosed with Stage 3 SCC. I found out after my diagnosis actually that I am one of 4 people diagnosed with the exact same cancer from a pest control employer I worked at in the early 2000s.... but that's a whole other story. . .

I just completed my first round of chemo and immunotherapy. This is one round of 4 total. I have two treatments over two weeks, then a week break and so on. I am strongly considering getting the port even though I don't really want to. I can't bear being stuck 6 times to find a vein :).

Since I last posted they were still unsure of the staging. I had another biopsy and another PET scan and MRI. My supraclavical lymphnode "slightly" lit up on the PET scan so they wanted to test this before coming up with a treatment plan as it can significantly alter the staging and treatment. I know that 90% of the time this comes back malignant.

I may not have beat the other odds... but I beat those odds :). The lymphnode came back clean! Now, it has affected other lymphnodes in my chest but they are all "regional", it has not impacted the left side at all and it is in the mediastinum as well. So its not an ideal situation, but its certainly better than it could be.

So long story short.. they feel that my condition is Operable. I am so relieved. I know it's not necessarily a "cure" but I do know that it's better for them to do surgery if they can. So the plan is 4 rounds of chemo/immuno, and then I will be hopefully going for surgery after that (they will do another scans etc. to be sure). As of right now, it has not metastasized and it is still regional. Late stage, but operable.

I feel really blessed and more encouraged than I have since this all started. The doctors at Vanderbilt are amazing. They actually reviewed by case with the thoracic board (a gathering of all the different types of cancer doctors/surgeons etc. every 2 weeks between Vanderbilt and the Sarah Cannon Cancer Institute here and they look at one or two cases) and this is how they came up with my plan.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

franciekid | @franciekid | May 8, 2023

Congratulations may sound strange, corywh, but all in all, good news. Keep us posted.

REPLY
Mentor
Lisa, Volunteer Mentor | @lls8000 | May 9, 2023

@corywh, 'Regional' sounds great! I'm glad you are moving forward with a solid plan. Knowing that there are some hard times ahead, you still sound strong and up-beat. Did your first round of chemo & immunotherapy go ok? Do you have support of family or friends?

REPLY
corywh | @corywh | May 9, 2023

Thanks, Lisa. My first round went okay yes... the second part of the first round was definitely rougher than the first but I feel mostly normal after 2-3 days. I have lots of support 🙂

I was a bit worried about hearing loss since I've been having ringing in the ear with loss of hearing for 10-15 seconds, but they are going to watch it closely. They sent me for a comprehensive hearing test and those results came back good.

I'm not totally sure what to expect in terms of how hard the surgery is but I am sure it's not easy and it's obviously a major surgery.

REPLY
vlanmi | @vlanmi | Jun 14, 2023

I wish you good health and lots of luck in the future. I was also diagnosed with lung cancer in April. Same story, undergoing chemotherapy and then surgery.
I am confident that these moments will bring us smiles in ten years' time.

REPLY
1 reply
corywh | @corywh | Jun 14, 2023
In reply to @vlanmi "I wish you good health and lots of luck in the future. I was also diagnosed..." + (show)
@vlanmi

I wish you good health and lots of luck in the future. I was also diagnosed with lung cancer in April. Same story, undergoing chemotherapy and then surgery.
I am confident that these moments will bring us smiles in ten years' time.

Jump to this post

Thank you, and I very much hope the same for you. Like you, I am confident 🙂

Chemo is "tolerable" so far but I am definitely looking forward to completing round 4 and moving to surgery. I am on the second half of round 3 tomorrow.

REPLY
1 reply
Mentor
Lisa, Volunteer Mentor | @lls8000 | Jan 14 12:54pm
In reply to @corywh "Thank you, and I very much hope the same for you. Like you, I am confident..." + (show)
@corywh

Thank you, and I very much hope the same for you. Like you, I am confident 🙂

Chemo is "tolerable" so far but I am definitely looking forward to completing round 4 and moving to surgery. I am on the second half of round 3 tomorrow.

Jump to this post

Hi Cory (@corywh) How were your scans after chemo? Were you able to have surgery?

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1 reply
corywh | @corywh | Jan 15 10:07am
In reply to @lls8000 "Hi Cory (@corywh) How were your scans after chemo? Were you able to have surgery?" + (show)
@lls8000

Hi Cory (@corywh) How were your scans after chemo? Were you able to have surgery?

Jump to this post

Hey, I'm sorry I haven't updated this in a while. I should have... sometimes it's just a lot going on and you have to sort of deal with it however you can. Thank you for checking on me though.

I actually have good news to share. Well, great news... I will try to keep it brief for now.
Following all of my rounds of chemo and immunotherapy I had surgery on August 18th. They removed my entire right lung. Obviously the surgery was difficult and the recovery has been tough, but they confirmed with lots of pathology that all of the affected areas were successfully dealt with (the primary tumor obviously, and then affected lymph nodes and surrounding tissue). I can't say enough about how great the team at Vanderbilt has been.

Although the surgery was very difficult, believe it or not, I actually feel better now than I did. It's amazing at how slowly this happens and you don't even realize that you're not yourself, until you can look on the other side of it. Even with one lung... I feel better. Still crazy to think that I have one lung, but although it's very rare, a bit more common than I thought. My left lung was doing over 80% of the work in terms of airflow and blood flow they found out after several tests preparing for surgery.

Now, I am doing immunotherapy for a year following surgery and so far I am tolerating that very well overall.

I did have a scare over the holidays unfortunately - we did a follow up scan to check on my heart and general post operation stuff (not for cancer per se). They discovered my supraclavicular lymph node and some around it were enlarged from the last time it was imaged. They were very concerned... so obviously I was. This was the day before Thanksgiving (3 months after surgery). Due to the holidays etc. they were not able to do a biopsy until early January, just two weeks ago. So it was an interesting holiday season, though I tried very hard to put it out of my mind, you guys know how that goes.

When I got the results back on my phone, I barely wanted to look at it. I ignored the notification for several hours, and then decided to open it with my wife with me. It's hard to explain the emotions you go through but... following an extremely difficult surgery, despite all the pain and difficulty I knew that I was cancer free, so I felt like I was alive again I guess is the best way to say it. Then, when you get a scan like that, it sort of takes you back to when it all began and you have those emotions again, and even stronger. A doctor has told me since that recurrences are usually where people really decide if they want to keep treating, or just live the best they can. They are harder emotionally and I totally get that after that scan.

Anyway. The pathology came back completely clean. No malignancy found in the lymph nodes and they are likely just reacting to everything going on.

I feel extremely blessed, and lucky, and fortunate, to be where I am. You always know there is a chance this can come back, but as of this writing... I am cancer free. I am very grateful for the perspective on life that this experience has given me. I feel like a new person in many ways. Once you realize that none of us are getting out of this life alive and none of us know when it's going to happen, there's a certain freedom to that. I can say that I appreciate my life, way more, than I did before. It doesn't mean I am going to go skydiving every day or travel the world... all of that is great... but what it means really is that I am enjoying the small moments and understanding the value of life more.

To be honest, I think part of the reason I haven't posted here, or in some facebook groups I am in, in awhile, is that a part of me feels guilty for having a good story to tell. I know that is silly, because the good stories used to encourage me. So, I hope that this post can encourage someone at some point.

My road has been really difficult... but right now, I am beating the odds and statistics. I'm cancer free right now, and I am typing this with one lung, feeling better than I have in probably 10 years. All things are possible.

I sincerely hope everyone here is finding peace and doing well.

REPLY
3 replies
geraldkl | @geraldkl | Jan 15 11:07am

Your message is very heart warming. Congratulations on being cancer free. I know that when I was told that my worries were eased and I was able to concentrate on the now instead of the past. Take care.

REPLY
Matthew K | @flusshund | Jan 16 10:23am
In reply to @corywh "Hey, I'm sorry I haven't updated this in a while. I should have... sometimes it's just..." + (show)
@corywh

Hey, I'm sorry I haven't updated this in a while. I should have... sometimes it's just a lot going on and you have to sort of deal with it however you can. Thank you for checking on me though.

I actually have good news to share. Well, great news... I will try to keep it brief for now.
Following all of my rounds of chemo and immunotherapy I had surgery on August 18th. They removed my entire right lung. Obviously the surgery was difficult and the recovery has been tough, but they confirmed with lots of pathology that all of the affected areas were successfully dealt with (the primary tumor obviously, and then affected lymph nodes and surrounding tissue). I can't say enough about how great the team at Vanderbilt has been.

Although the surgery was very difficult, believe it or not, I actually feel better now than I did. It's amazing at how slowly this happens and you don't even realize that you're not yourself, until you can look on the other side of it. Even with one lung... I feel better. Still crazy to think that I have one lung, but although it's very rare, a bit more common than I thought. My left lung was doing over 80% of the work in terms of airflow and blood flow they found out after several tests preparing for surgery.

Now, I am doing immunotherapy for a year following surgery and so far I am tolerating that very well overall.

I did have a scare over the holidays unfortunately - we did a follow up scan to check on my heart and general post operation stuff (not for cancer per se). They discovered my supraclavicular lymph node and some around it were enlarged from the last time it was imaged. They were very concerned... so obviously I was. This was the day before Thanksgiving (3 months after surgery). Due to the holidays etc. they were not able to do a biopsy until early January, just two weeks ago. So it was an interesting holiday season, though I tried very hard to put it out of my mind, you guys know how that goes.

When I got the results back on my phone, I barely wanted to look at it. I ignored the notification for several hours, and then decided to open it with my wife with me. It's hard to explain the emotions you go through but... following an extremely difficult surgery, despite all the pain and difficulty I knew that I was cancer free, so I felt like I was alive again I guess is the best way to say it. Then, when you get a scan like that, it sort of takes you back to when it all began and you have those emotions again, and even stronger. A doctor has told me since that recurrences are usually where people really decide if they want to keep treating, or just live the best they can. They are harder emotionally and I totally get that after that scan.

Anyway. The pathology came back completely clean. No malignancy found in the lymph nodes and they are likely just reacting to everything going on.

I feel extremely blessed, and lucky, and fortunate, to be where I am. You always know there is a chance this can come back, but as of this writing... I am cancer free. I am very grateful for the perspective on life that this experience has given me. I feel like a new person in many ways. Once you realize that none of us are getting out of this life alive and none of us know when it's going to happen, there's a certain freedom to that. I can say that I appreciate my life, way more, than I did before. It doesn't mean I am going to go skydiving every day or travel the world... all of that is great... but what it means really is that I am enjoying the small moments and understanding the value of life more.

To be honest, I think part of the reason I haven't posted here, or in some facebook groups I am in, in awhile, is that a part of me feels guilty for having a good story to tell. I know that is silly, because the good stories used to encourage me. So, I hope that this post can encourage someone at some point.

My road has been really difficult... but right now, I am beating the odds and statistics. I'm cancer free right now, and I am typing this with one lung, feeling better than I have in probably 10 years. All things are possible.

I sincerely hope everyone here is finding peace and doing well.

Jump to this post

Good for you! I've been living with Stage 4 EGFR mutation for 3 years now and had my scare last August, just before leaving for vacation. My doctor saw lymph nodes behind my kidneys that had grown by 50% in 3 months - the time since my last CAT scan.

My attitude is, "Until they tell me the cancer is back, I'm cancer-free." So I took another blood test, had a PET scan, and didn't tell anyone but my wife before going on vacation. I came back from vacation, and, like you, everything came back negative.

I'm a pretty positive, never tell me the odds, kinda guy, but that had to be concerning so soon after your surgery. I'm glad it turned out to be nothing. It'll get easier to stay positive the longer you stay cancer-free, which I hope is a long time!

Thanks for letting us know. Inspiring story!

REPLY
Mentor
Lisa, Volunteer Mentor | @lls8000 | Jan 16 10:36am
In reply to @corywh "Hey, I'm sorry I haven't updated this in a while. I should have... sometimes it's just..." + (show)
@corywh

Hey, I'm sorry I haven't updated this in a while. I should have... sometimes it's just a lot going on and you have to sort of deal with it however you can. Thank you for checking on me though.

I actually have good news to share. Well, great news... I will try to keep it brief for now.
Following all of my rounds of chemo and immunotherapy I had surgery on August 18th. They removed my entire right lung. Obviously the surgery was difficult and the recovery has been tough, but they confirmed with lots of pathology that all of the affected areas were successfully dealt with (the primary tumor obviously, and then affected lymph nodes and surrounding tissue). I can't say enough about how great the team at Vanderbilt has been.

Although the surgery was very difficult, believe it or not, I actually feel better now than I did. It's amazing at how slowly this happens and you don't even realize that you're not yourself, until you can look on the other side of it. Even with one lung... I feel better. Still crazy to think that I have one lung, but although it's very rare, a bit more common than I thought. My left lung was doing over 80% of the work in terms of airflow and blood flow they found out after several tests preparing for surgery.

Now, I am doing immunotherapy for a year following surgery and so far I am tolerating that very well overall.

I did have a scare over the holidays unfortunately - we did a follow up scan to check on my heart and general post operation stuff (not for cancer per se). They discovered my supraclavicular lymph node and some around it were enlarged from the last time it was imaged. They were very concerned... so obviously I was. This was the day before Thanksgiving (3 months after surgery). Due to the holidays etc. they were not able to do a biopsy until early January, just two weeks ago. So it was an interesting holiday season, though I tried very hard to put it out of my mind, you guys know how that goes.

When I got the results back on my phone, I barely wanted to look at it. I ignored the notification for several hours, and then decided to open it with my wife with me. It's hard to explain the emotions you go through but... following an extremely difficult surgery, despite all the pain and difficulty I knew that I was cancer free, so I felt like I was alive again I guess is the best way to say it. Then, when you get a scan like that, it sort of takes you back to when it all began and you have those emotions again, and even stronger. A doctor has told me since that recurrences are usually where people really decide if they want to keep treating, or just live the best they can. They are harder emotionally and I totally get that after that scan.

Anyway. The pathology came back completely clean. No malignancy found in the lymph nodes and they are likely just reacting to everything going on.

I feel extremely blessed, and lucky, and fortunate, to be where I am. You always know there is a chance this can come back, but as of this writing... I am cancer free. I am very grateful for the perspective on life that this experience has given me. I feel like a new person in many ways. Once you realize that none of us are getting out of this life alive and none of us know when it's going to happen, there's a certain freedom to that. I can say that I appreciate my life, way more, than I did before. It doesn't mean I am going to go skydiving every day or travel the world... all of that is great... but what it means really is that I am enjoying the small moments and understanding the value of life more.

To be honest, I think part of the reason I haven't posted here, or in some facebook groups I am in, in awhile, is that a part of me feels guilty for having a good story to tell. I know that is silly, because the good stories used to encourage me. So, I hope that this post can encourage someone at some point.

My road has been really difficult... but right now, I am beating the odds and statistics. I'm cancer free right now, and I am typing this with one lung, feeling better than I have in probably 10 years. All things are possible.

I sincerely hope everyone here is finding peace and doing well.

Jump to this post

@corywh, Thank you for sharing your deeply personal story. You put into words what so many of us feel, the highs and lows, the fear that we feel when faced with questionable scan results. Experiences like these do change our outlook. I'm happy that you are feeling so good and are living your beautiful life!

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