Researching Laser Surgery Germany

[sailor604]

Hi Everyone,

It’s a privilege to be part of this group, although I wish it were under better circumstances for all of us.

My primary tumour was successfully treated, but I now have lung metastases—13 nodules ranging from 1mm to 9mm.

I’m very interested in pursuing laser surgery in either Germany or the UK. While I’ve found some great posts here, I’m still struggling to pull all the information together, and online searches have been limited.

If anyone has been through this recently and would be willing to share their experience, particularly regarding timelines, costs, and other key details, I would greatly appreciate it!

Thank you!

ps - Happy Thanksgiving weekend to my fellow Canadians

[beach sunrise]

Sorry you have lung nodules. I have been in your shoes.
The Lung Hospital in Germany is something to consider. I contacted Dr. Kern and sent all scans so far and rad readings hoping I would be a candidate for Rolles surgery. Reply from Dr. Kern was a yes he could do it. He is so nice and has skills to get mets in hard places like 2 of mine were.
Cost in 2023 for just surgery (both lungs) was $35,000. A room for almost 3 months at a villa with air conditioning (haha) was $6,000. I think plane ticket (1st class) was around $4,000 round trip. Food I really have no idea, I cooked in my room which had a kitchen. Taxis were expensive!
Zepher has some good advice and things to think about when considering Rolles surgery on my post from Sept "CT Scan" you might want to read.
Good luck and let us know what you decide.

[sailor604]

Sorry you have lung nodules. I have been in your shoes.
The Lung Hospital in Germany is something to consider. I contacted Dr. Kern and sent all scans so far and rad readings hoping I would be a candidate for Rolles surgery. Reply from Dr. Kern was a yes he could do it. He is so nice and has skills to get mets in hard places like 2 of mine were.
Cost in 2023 for just surgery (both lungs) was $35,000. A room for almost 3 months at a villa with air conditioning (haha) was $6,000. I think plane ticket (1st class) was around $4,000 round trip. Food I really have no idea, I cooked in my room which had a kitchen. Taxis were expensive!
Zepher has some good advice and things to think about when considering Rolles surgery on my post from Sept "CT Scan" you might want to read.
Good luck and let us know what you decide.

Thank you so much for taking the time to reply to my post and share your experiences—I really appreciate it!

I had a couple of follow-up questions, if you don’t mind:

- How many nodules did you have, and what size range were they?
- Was the procedure invasive, and did you recover quickly?
- I assume the $35k is in USD?

Thanks again!

[mozart13]

Many thanks for sharing your journey with us. I love that you are considering things such as laser surgery –I have been told it helps in getting those nodules by directing the laser light accurately.

[beach sunrise]

I had 4 nodules removed measuring anywhere from 5mm to 7mm. Only 3 were cancer mets, one was a macrophage, M1.
Yes, I forgot the conversion for surgery cost. The surgery was $35,000 euros but in US dollars it converts to a few thousand more USA dollars. It was 17,000 euros per lung. I had 75g IVC administered 12 hrs after surgery then 2 more infusions before released on the 4th day. I believe IVC is why I did so well with no complications. Wait time between the 2 surgeries was 3 weeks. Discharge to fly home after second surgery was 2 or 3 weeks.
It is open surgery, so invasive but you retain your lungs (a big deal to me). Dr. Kern feels for any nodules down to the size of a grain of sand on every inch of your lungs. The sand grain size I have no idea. Didn't think to ask.
There is a German flight booking company called ABC something, can't remember but I posted it on one of my responses here on the forum. The company is much cheaper for flying than American booking businesses. I didn't know about them until I got home and German friends told me about it. That is how they fly to Germany and back. Who knew!

[Pagola44]

What Was your original staging?

[sailor604]

I had 4 nodules removed measuring anywhere from 5mm to 7mm. Only 3 were cancer mets, one was a macrophage, M1.
Yes, I forgot the conversion for surgery cost. The surgery was $35,000 euros but in US dollars it converts to a few thousand more USA dollars. It was 17,000 euros per lung. I had 75g IVC administered 12 hrs after surgery then 2 more infusions before released on the 4th day. I believe IVC is why I did so well with no complications. Wait time between the 2 surgeries was 3 weeks. Discharge to fly home after second surgery was 2 or 3 weeks.
It is open surgery, so invasive but you retain your lungs (a big deal to me). Dr. Kern feels for any nodules down to the size of a grain of sand on every inch of your lungs. The sand grain size I have no idea. Didn't think to ask.
There is a German flight booking company called ABC something, can't remember but I posted it on one of my responses here on the forum. The company is much cheaper for flying than American booking businesses. I didn't know about them until I got home and German friends told me about it. That is how they fly to Germany and back. Who knew!

Thanks for the additional details! You've been very helpful.

Did you feel that the 3-week gap between surgeries was adequate for recovery? Why did you choose Germany versus being treated in the USA?

[sailor604]

What Was your original staging?

I was initially diagnosed with Stage II, with a suspicion of Stage III, but the primary tumour couldn’t be located right away.

After a ski accident, a tumour was discovered on my liver and successfully removed. One year later, during a routine scan, the original tumour reappeared and was again successfully removed.

I remained NED for a year, but then nodules started to appear in my lungs. First, there were 2, then 5, then 7, and now 13, all measuring under 1 cm. A lung biopsy confirmed that the largest nodule was metastatic.

My latest scans and PET show only nodules in the lungs.

[zephyr]

Why did you choose Germany versus being treated in the USA?

The German surgery uses a unique laser procedure developed by a thoracic surgeon at the Coswig hospital and is not available in the USA.

[beach sunrise]

For me the 3 week gap was good. I sailed through both surgeries, no complications.
Here in the USA 2 consults with lung surgeons. One wanted to use heavy chemo "and see what happens", Uhmmm no I am not an experiment. I said I was going to contact Germany. His reply was "medical tourism is dangerous." My response was "I'm sure other countries tell their patients the same thing." 2nd consult with a different lung surgeon was all about taking out the RML because the met was on a bronchial tube then do heavy chemo. Uhmm no thanks. With laser lung surgery it preserves your lungs. So, it was a good decision that I contacted Germany instead of taking USA SOC treatment here and still have my lungs.

[sailor604]

For me the 3 week gap was good. I sailed through both surgeries, no complications.
Here in the USA 2 consults with lung surgeons. One wanted to use heavy chemo "and see what happens", Uhmmm no I am not an experiment. I said I was going to contact Germany. His reply was "medical tourism is dangerous." My response was "I'm sure other countries tell their patients the same thing." 2nd consult with a different lung surgeon was all about taking out the RML because the met was on a bronchial tube then do heavy chemo. Uhmm no thanks. With laser lung surgery it preserves your lungs. So, it was a good decision that I contacted Germany instead of taking USA SOC treatment here and still have my lungs.

I'm glad it went well for you!

It is disappointing that there isn't better support for seeking treatment elsewhere. Canada has a similar approach: " Let's try this and wait and see." They won't consider local control if the tumours are beyond a few.

I've been gathering my research in this document. Your input has been invaluable. https://docs.google.com/document/d/1Dyg ... it?tab=t.0

I plan on contacting the hospital in Germany after my next scan in Nov.

[beach sunrise]

Great! I really hope you are a candidate for Rolles Laser surgery.
Based on the link you posted the contact would be Schorm (sp?) as Drewes is no longer there. Dr. Kern is who I would recommend.
Please keep us up to date.
Good luck, fingers crossed.

[beach sunrise]

Hey Sailor, any updates yet?

[sailor604]

Hey Sailor, any updates yet?

Thanks for checking in! I haven’t moved forward with the procedure in Germany yet due to an unrelated health issue that required surgery. Thankfully, that’s now resolved, but I’m still in the process of healing.

At the moment, I’m considered "stable" thanks to the targeted therapy, which is a relief. That said, I’m still seriously considering the laser procedure for 2025. I plan to discuss it with my oncologist in January, though I don’t expect he’ll be particularly supportive of the idea. I may have to go without his support.

On a side note - my genetic testing results uncovered some genetic insights and potential targets. Two of the most promising options involve repurposed drugs: metformin, commonly used for diabetes, and leflunomide, an arthritis medication. So my care team wants to explore those, though they have been clear about managing expectations.

The journey continues.

[beach sunrise]

What were the targets if I can ask?
I am glad you got a successful surgery and are healing well. I've been thinking about you.
Remember you are in the drivers seat with your cancer! Often times they try to get you to stay in their facility and just take what they have to offer (keep the money there).
If I had given up my care to the professionals I am sure I would have been dead probably about 4 years ago. First onc was a scary Dr. Frankenstein and the surgeon "they" referred me to was a bottom of the barrel minimum knowledge, jack of all trades type that thought more of running off to Vegas to gamble. I still remember him walking in the room starting off with a damn joke about fruit... Whew....opened my eyes!!!