New cancer diagnosis...and will probably need to remove a lung

[jls4913]

Hi All,

Not technically "lung" cancer, but here goes...

I'm in my 30s and was recently diagnosed with a stage IV invasive thymoma. It's a rare tumor of the chest and it is currently invading my right lung. Currently on chemotherapy right now to shrink the size of the tumor before surgery, but the surgeon thinks I definitely need to lose my right upper lobe. On my last CT scans, there were also signs of it invading the other lobes of my right lung...so it is very possible that I will need to have my right lung removed with the pleura. Leaving me with just my left. 

 

I've been a jogger pretty much my whole life, jogging every day. I also do weight lifting and try to "keep in shape." Knowing that I'm going to probably lose my ability to keep this up is quite devastating, but I want to live. Any other survivors with 1 lung here? Mind sharing your experiences? How's the recovery and are you able to still keep an active lifestyle?

Thanks,

J

 

[LouT]

J,

Yes, there are other survivors with one lung here and I'm sure you'll be hearing from them soon.  In the meantime there are three things I'd like to share with you.  The first so you can educate yourself on this disease and the second to help you through your surgery.  I'll also let you know that you SHOULD NOT go searching for prognosis and survival data on Dr. Google.  The data there is based on five-year averages and do not consider new treatments and individual outcomes.  Stick around, educate yourself, and know that we will be here to support you.

1. "Lung Cancer 101" has volumes of information on this disease with everything from the causes, diagnosis, treatment, and survival.
2. The best primer I've seen on this disease is a blog titled; "10 Steps to Surviving Lung Cancer; From a Survivor" (from a survivor with one lung) and it can be found here.
3. Last is an article titled, "Tips and Trick for Thoracic Surgery".  It has information to help you through pre-surgery, hospitalization, and post-surgery.  

Know that there is hope, there are many survivors here (I'm one) as a group we've been diagnosed at all stages, with all causes, and varied treatments, so we have a great amount of knowledge and experience to share with you.  You're not alone in this.

Lou

[jls4913]

Thank you Lou! Yes, I’m doing my best to avoid searching “Dr Google.” The data on my specific cancer is very old and fortunately we know much more about it now…I’ve been told the goal of my surgery is to achieve prolonged long term control so I will probably live with this cancer for the rest of my life…however, I’m counting my lucky stars that this was caught before it spread to my other lung. And I have a supportive family and network to guide me through the process. 
 

looking forward to hearing from others and their experiences!

[Tom Galli]

J

I'm a survivor with 1 lung. Actually, less than 1 because of tumors that bloomed in my left lung after surgery do not support respiration. I'm nearing 20 years of life with significantly impaired respiration capacity, perhaps 30% of normal lung capacity. I don't live a 30% life, however!

I note your fitness routine. After surgery, there can be fitness in your life. You will need to find your stride but many of us do. One survivor on this forum, @Roz, is a self-described "gym rat". She's had 2 lobes removed and has active disease throughout her remaining lung tissue, yet she shows up and works out.

Welcome here. We don't have insight or information on thymoma but life after thoracic surgery is well within our scope.

Stay the course.

Tom 

[jls4913]

Tom, 

 

I can’t begin to describe how relieving it is to hear that someone else with 1 lung (leave alone 20 years survival!) is doing well. This itself has just made my day a whole lot better!

 

if you don’t mind, do you mind sharing what your daily life is like? Do you go for walks and hikes without problems? 
 

if you don’t mind, can I private message you?

18 hours ago, Tom Galli said:

J

I'm a survivor with 1 lung. Actually, less than 1 because of tumors that bloomed in my left lung after surgery do not support respiration. I'm nearing 20 years of life with significantly impaired respiration capacity, perhaps 30% of normal lung capacity. I don't live a 30% life, however!

I note your fitness routine. After surgery, there can be fitness in your life. You will need to find your stride but many of us do. One survivor on this forum, @Roz, is a self-described "gym rat". She's had 2 lobes removed and has active disease throughout her remaining lung tissue, yet she shows up and works out.

Welcome here. We don't have insight or information on thymoma but life after thoracic surgery is well within our scope.

Stay the course.

Tom 

 

[Tom Galli]

J

What is daily life like for me? To be precise, that answer should address two different periods: life after NED (no evidence of disease) from 2007 to COVID in 2019 and life after COVID because they are vastly different. Now, age is intersecting marginal pulmonary capacity.

When treatment ended in 2007, my wife and I embarked on an aggressive vacation experience. We both enjoy cruising and took a total of 7 transatlantic cruises to Europe, a Baltic Sea cruise, and a Mediterranean Sea cruise. Each had a substantial (at least 2 weeks) self-guided tour starting at the European port of arrival. We did Italy twice, Spain and Portugal, Ireland twice, England and Scotland, and the Baltic Sea Nations. My 3 thoracic surgeries caused significant chronic pain. On the first return transatlantic flight, I discovered airline cabin pressure had the effect of expanding my chest and I spent 9 hours in agony. But, we found Iceland and booked return air from European cities to spend a day or so in Iceland exploring before continuing home. This broke "up in the air" time into manageable painful periods. My physician introduced me to Lidocaine transdermal patches that when applied shortly before the flight would tamp down incision pain. 

Walking around during these trips on level ground was easy. Climbing the "million" stairs to Edinburgh Castle or negotiating the elevation changes along the pathway to the Cliffs of Moher was difficult but I took my time.

When COVID hit, I confined myself to quarters. The last thing I wanted was a dangerous pulmonary virus. I walked my neighborhood but avoided neighbors and air travel, even masked and after all the vaccinations and boosters. I turned 70 with COVID's onset, and age now adversely intersects pulmonary capacity. Now, I'd likely not attempt to climb 3 flights of stairs let alone the steps to Edinburgh Castle. My daily life now is restricted to about a mile of walking around on level ground. We tried air travel twice and caught a respiratory bug (not COVID) each time and had a 10-day Caribbean cruise. I enjoyed 5 days before catching a shipboard malady, again not COVID. So COVID isolation has likely weakened my immune system to whatever is circulating throughout the population. When I catch a chest cold now, it puts me down for at least 3 weeks. Long periods of breathing in an N95 mask are extremely difficult. My traveling days are likely over.

You can private message me. Use the Forum private message function. But, our purpose is to provide open-source information on treatment and recovery and therefore encourage you to keep our dialogue in the open so others in the future can benefit from the information exchange. I learned in years of online message board discussions that cancer survivors seem to have the same questions.

Stay the course.

Tom

 

 

[jls4913]

Thank you so much for sharing your experience Tom - it sounds like even after your surgeries you were able to make the most of your life, which is very reassuring. Me, having been diagnosed in my 30s, the fear is that i only have a few years left of “the good life” before my lungs start limiting me. And I want so much more. But it sounds like age is starting to play more of a limiting factor…which oddly gives me a sense of relief, at least for my myself (I do hope you’ll be able to travel again though!).
 

btw I just noticed your book on your profile. I think I’ll spare you the constant blogging and read it instead to address the many follow up questions I had for you😂

thank you again and if there are any 1 lung survivors out there…feel free to post and wish you the best!

[BridgetO]

I've been following Tom's posts for years and have read his book. I met him personally at a Hope Summit. I have seen that he really does, as you said, make the most of his life and he's been an inspiration to a lot of us here, including me.  You can have a good life. It may look different than what your life before cancer, what we call " a new normal." 

My lung cancer was Stage 1a and I only needed one lobe removed. Neither the loss of the lobe nor the surgery affected my life much. But an earlier non-lung cancer did affect me a lot. Actually it wasn't the cancer itself, but the treatment-- a big surgery that took out a whole load of lymph nodes as well as other things, some of which I didn't even know I had (what's an omentum?). Then concurrent chemo and radiation that damaged a lot of what was left. And additional chemo that left me with some neuropathy.  I for sure have a new normal! But it's a good normal. It continues to change with age. (I'm 77).  I didn't think I would live this long. I'm grateful for survival. 

I can still travel, one of my great joys. But the style of travel has changed.  I'm working part time at a job I enjoy and which is really flexible. All is well in my life. Who woulda thought?

Rooting for you to have successful treatment and find your new (good!) normal.

Bridget O