The Colon Club

Hello and sorry that we are all here.

My dad’s latest CT scan showed 5 to 6 tiny spots in the lungs. His oncologist said that if there were fewer spots, he would suggest surgery, but with this number of spots, he’s recommending mild chemo instead. He said that we pursued aggressive treatment after the original diagnosis (4 liver mets) because we had a curative intent, but he no longer thinks my dad’s cancer is curable and would prefer to focus on maintaining QOL for as long as possible.

I don’t currently have the CT scan report, so I don’t know much about the location of these spots and their exact sizes.

I’m not quite sure what to think. I feel like we are giving up by not exploring ablation or surgery or more aggressive chemo, but at the same time, I want to be realistic. From this forum, I have read about laser lung surgeries in Germany & UK, but I am not sure if we can afford that or if my dad would even be willing.

My dad has been enjoying NED status since early 2015, taking road trips to national parks and living fully. He says he feels great. He still has several trips planned, so he asked for a re-scan in two months and start chemo then. The doctor is fine with that.

I would appreciate any advice, encouraging words, your experience with lung mets. I’m looking for hope — my tears don’t seem to stop.

I'm sorry to hear about your dad's new lung nodules, but I'm glad to hear he's feeling so well!

With lung nodules, it's all about location. Five to six is a larger number, but it's still possible for them to be treated with either surgery, RFA, immunotherapy, or all three. But it all depends on where they are located, if they are scattered or closer together, etc. The first thing though is to try and control them with chemo. If they shrink from the chemo AND are in a good location, then it's worth asking a thoracic surgeon what he might be able to do. See if you can get a copy of the CT scan report. And, of course, ultimately, it's up to your dad. See how he feels about pursuing a more aggressive approach. It doesn't necessarily have to mean a reduction in QOL.

You seem like such a loving and caring daughter that I'm sure this is hitting you hard. Take care of yourself, okay?

Hugs to you!
Juliej

I would be looking for doctors that could help me with off-label stuff, like ADAPT and extra modulations, the Life Extension stuff, and/or other natural immune therapies to try to slow the beasts down and improve QoL, or just maybe shrink and dissolve some of the mets. IV vitamin C (+ K2 or K3) may make some chemo (xeloda, or Folfiri) better with fewer side effects.

If you know his peak CEA and CA19-9 and / or Kras, that might help with the off-label stuff.

Simultaneously, I would look for an affordable laser lung surgery site. Perhaps a doctor less fussy about acceptance criteria than Rolle. Rolle, the excellent originator in Germany, sounded like the best financial deal unless someone in Eastern Europe or Asia has come online with a better deal.

We take a more aggressive view of existing technologies. One dr, or even 5 doctors saying "no", or "no hope", doesn't make it so unless it diverts effective actions by the patient, as it often does. We find somebody that knows, paper or flesh, and does better, higher up the pyramid of knowledge.

Thank you Juliej and rp1954 for your replies. Much appreciated.

Hmm, it seems that I've been away from these boards a little too long. I guess I got complacent while my dad was NED. I'm going to have to get up to speed on immunotherapy and Life Extension. I thought ADAPT was for folks only on maintenance, but if my dad is a candidate, then I'll look more into it. Sounds like a good idea to look more into laser lung surgery as well.

This board is such a good source of info. Thank you for sharing.

I have a friend who has lung spots after being diagnosed with rectal cancer two years ago. I do not know the locations, but there are "several." She (in her 50's) and her medical team have tried various mixtures of chemo drugs. The earlier ones were not too successful. She has now finished 8 of 12 chemo sessions of her latest combinations, and the spots have either shruck or have remained stable following her PET scan two weeks ago. I guess what I'm trying to get across is that you need to make sure chemo could be an option before deciding it can't be done.

I had 5-6 lung spots pop up in Dec. 2014 after laser lung surgery in the UK with Dr. Ladas in Oct and Nov 2014. We treated with Folfiri and Avastin for a few months and 5 out of the six completely disappeared on CT scan. I began maintenance 5FU and Avastin and two of the nodules reappeared (very small) and drew about 1mm/month. This past November, i was able to have both of them cryoablated at MDA and am currently NED. Seek out a large cancer institution for possibly more options if you haven't already. Don't give up!

Stephen

I agree with StevieB., seek out a large cancer center and get a second opinion. I had liver mets, had it resected, then had lung mets treated twice with SBRT (two different years) which got rid of most....then had lung mets again and had VATS. Currently NED. Had five lung mets treated with SBRT one time, and three treated the other time.

UPMC hospital in Pittsburgh.

Thank you Andretexas, Stephen, and Rob for your comments. Very happy and encouraged to hear of your successes. Continued best wishes to all of you.

My dad is currently at a large cancer center in California (City of Hope). So far, we’ve been extremely happy with all the doctors and nurses. I didn’t accompany my dad to his last appointment, so I wasn’t able to ask the oncologist any questions. Our next appointment is two months from now. Is that too long to wait to ask about options, etc.?!

Do the lung mets have to be a minimum or maximum of a certain size to be candidates for VATS, SBRT, and cryoablation, or is it all about location? I’ll do more research on these procedures as I clearly have a lot to learn. What were your recoveries like from your lung procedures? I wonder if my dad's age is a significant factor in determining whether these procedures are appropriate. He turns 70 this year.

Again, thank you for sharing.

When I had SBRT it was because I did not qualify for VATS, and then when I did have VATS, it was because I did not qualify for SBRT! Location, location, location.

My first SBRT was part of clinical trial. I had 5 mets and at the time, there was only approval for up to 3 mets....hence the trial.

Recovery from VATS was not a piece of cake (although some on here reported very easy recovery), I had pain for a couple weeks and to this day (VATS was 1.5 years ago) I still have numbness on outside of my chest). BUTT, it all worked so far, so I'm happy with results and choices I made.

Best to you and your Dad.
Rob

Thank you for the info, Rob. Great to hear that you're happy with your decisions and results. That's all we want, too — to be comfortable with our decisions and not have any regrets later. Continued successes to you.

Sue

I have been very lucky with my procedures! Both if my VATS surgeries went well and was back at work in three days. The laser resections took a little longer but was back to work in two weeks. My cryoablations were smooth and was back at work in two days. I have been very lucky! Best wishes!

Wow, Stephen, back at work so soon after your procedures! That's awesome. Continued NED to you.