The Colon Club

DH has about 5 nodules. Surgeon has agreed to go in and remove them and DH will lose about 25 percent lung capacity. DH has been off chemo since June 2016 and this is all that has popped up.

What are thoughts on this? I am a nervous wreck as to whether or not this is a good decision. They can't ablate them, we asked. DH hasn't one ablated and had a bad reaction.

Is the laser surgery in Germany less invasive? I worry about more spread after surgery.

Have you looked into radiation? SBRT or Proton Beam?

No, that's sort of what I am wondering. Are these a better option than surgery? No idea if we should jump into surgery or look into other options.

Hi ,
My mum had surgery nearly two years ago . Two small nodules showed up after surgery and then disappeared . Her lung function has not been impacted . She would do it again and she is 75 .
Surgery is better for her than chemo . She has not had chemo since 2010
Take care,
Stu

The laser surgeries in London and Germany are not less invasive, they are pretty invasive and I had a more nodules pop up just 1.5 months after my laser surgeries. I would look into SBRT or cryoablation. Surgery is usually the gold standard for a cure but I have had 5 cryoablations with much success and don't really notice any lung abnormalities in function.

Stevieb

Wondering why you opted for laser surgery instead of surgery in US. Trying to be thankful the surgeon is willing to do it but he gave us the whole "this only buys some time" speech. I hate these doctors sometimes. We get it, why remind us all the time. Ugh.

I had to go to London (Dr. Ladas) because no doctor in the US would do surgery, had too many nodules. Dr. Ladas removed 12 bilateral lung nodules during my two surgeries with him.

stevieb wrote:I had to go to London (Dr. Ladas) because no doctor in the US would do surgery, had too many nodules. Dr. Ladas removed 12 bilateral lung nodules during my two surgeries with him.

Gotcha. Doctor mentioned my husband is pushing the limit with 5 nodules, so makes sense. Do you know if having surgery (removal of a lobe) would disqualify him from laser lung surgery in the future?

Would like to keep it on the table if/when recurrence happen she in the lungs.

Read your story to DH and he is totally inspired by you! Thanks for responding.

crazylife wrote:

stevieb wrote:I had to go to London (Dr. Ladas) because no doctor in the US would do surgery, had too many nodules. Dr. Ladas removed 12 bilateral lung nodules during my two surgeries with him.

Gotcha. Doctor mentioned my husband is pushing the limit with 5 nodules, so makes sense. Do you know if having surgery (removal of a lobe) would disqualify him from laser lung surgery in the future?

Would like to keep it on the table if/when recurrence happen she in the lungs.

Read your story to DH and he is totally inspired by you! Thanks for responding.

Sorry it took so long to respond, I don't check the forum that often anymore, out living life!!!! I do not think that would disqualify him from getting the surgery done. I will definitely keep it in my bag of weapons should i need it again in the future. Dr. Ladas had removed up to 100 nodules in one patient during a surgery before!! Best wishes!!

I had my left lung operated on twice, the second time by Dr Ladas. He said that the scar tissue from the previous surgery made it much more difficult for him to detect tiny mets with his fingers, ones that were too small to see on scans, it did not prevent him getting to the ones which were known about. However, it is a consideration as Ladas said in 40% of surgeries he removed mets which he had discovered by feeling the lung, as small as 1mm which would otherwise have been unnoticed - which is why he didn't recommend VATS.

Very wierd - he said that when the lung is taken out for the surgery most surgeons just put it back in place and sew up. He said that he lubricates the outside of the lung which helps prevent scar tissue forming and prevents the returned lung sticking to the insde of its cavity and makes subsequent surgeries easier.

Ladas said he had repeated surgery on one patient four times for the same lung. The technique in Germany at Coswig is just the same so even though Ladas has retired the surgery is still available.

Hope this helps
Sophy

Thanks sophy and Stevieb!

DH is recovering from right lung surgery. 3 mets found and nothing else after a thorough check. Left lung surgery in 6 weeks.

I want to look into adapt. Who did you guys contact?

crazylife wrote:DH is recovering from right lung surgery. 3 mets found and nothing else after a thorough check. Left lung surgery in 6 weeks.

I want to look into adapt. Who did you guys contact?

Hope he is recovering well. Tell him to use his incentive spirometer to gain back lung function and strengthen that lung before the next surgery. I had both lungs operated on at the same time which made it really challenging!

Dr. Edward H. Lin, an oncologist at Seattle Cancer Care Alliance, is the "father" of the ADAPT protocol. However, I believe his study ended. You can probably have your onc reach out to him though.

Or you yourself can contact Stacey Cohen, the principal investigator of the study and ask if she knows of any current research: Phone 206-288-6658 or Email shiovitz@uw.edu

Hope this helps!
Juliej

Exactly 1 year after pre chemo/radiation and rectum removal...a met showed up on my left lung. Just 1. Within a month I had it removed at Mass General, had my port installed on Cape Cod and am now doing chemo on Cape Cod. My platelets are not liking Folfox! Anyway, when I asked the surgeon at MG what happened if more mets came back, he said he probably could do more VAT surgery. He seemed confident that he could do maybe 5.

Be aware that in Europe they tend to keep you for days and days in the hospital. I was in the hospital in Austria for my first surgery. It was summer and extremely hot. No a/c. Maybe this was part of my cause of infection. I was in the hospital almost 60 days! No WiFi, no TV and 4-6 patients in a room. If you are considering Europe, just be aware it could go longer. I did have excellent care there...not that I always understood what was going on because of the language issue. I was in one of the best colo rectal hospitals...in Graz. A city of 300,000. And they had maybe 5 parking spots! My experience is that European hospitals do not generally have the "frills" that USA hospitals have. Going to the lab to have my blood taken was always an ordeal. I was so sick and there were only about 6 chairs up there and everyone had to stand out in the hallway...often times about 45 minutes! I went to a few different hospitals for various things. But, they are leading edge. My OBGYN here was very pleased with my radiation sites. Said it looked very good and he has seen so many bad situations. And, no atoms even though they had to cut into sphincter muscles.

Where ever you go, it is a big decision. Lots to think about. Hugs.

Hi all!

DH is 5 weeks post-op and still having lots of nerve pain and general tiredness. He is going for pre-testing for the second surgery in two weeks. Is pain at this stage normal and expected and ok for second surgery? Would love to hear your experiences with recovery.

He's also lost ten pounds which is mostly muscle I think since he was lifting weights daily before this.

If you survey around internationally, a global list of surgeons currently using Rolle's laser technique would sound like an important option (please share) for preserving lung volume, removing more mets and preserving any later options as needed.

Btw fellow CC members, in the annual goals area, perhaps Colon Club should try to raise funds to honor and get Rolle and Ladas to lecture, share, advocate their methods.

For any surgery, most people miss out on important immune and targetable therapies from available small footprint, "low tech" biochemistry, in part or in toto (cimetidine, celecoxib, high potency nutraceuticals, etc). Once this latter area is implemented well enough, preferably maximized with immunochemo, and achieves some metastatic control, then patients can be multimodal instead of inoperable, and chip away at the mets with multiple therapies and diagnostics if necessary. This seems especially important in those off times when no chemo is normally used or available, although immunochemo methods allowed us success much closer to surgery.

My major concern with Dr. Lin and (separately) integrative/alternative/naturopathic drs is whether they go far enough to achieve consistent target states (e.g. "trying to bat a 1000" in certain normally adverse conditions), rather than narrowly limit themselves to some fixed protocol(s) that don't anticipate addons. I don't think so, in our experience. There are extra options where drs are unfamiliar or are slow to go despite obvious benefits and attractions of improved recovery and well being as well as better cancer control.

In my eyes, any way you can tag a met "out" is legit, especially if it makes you stronger, feel better, and/or improves your bloodwork.