Lung surgery advice

Please feel free to read, share your thoughts, your stories and connect with others!
crazylife
Posts: 256
Joined: Wed Dec 30, 2015 11:29 am

Lung surgery advice

Postby crazylife » Mon Oct 30, 2017 9:36 am

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.
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

User avatar
mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: Lung surgery advice

Postby mypinkheaven » Mon Oct 30, 2017 10:01 am

Have you looked into radiation? SBRT or Proton Beam?
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

crazylife
Posts: 256
Joined: Wed Dec 30, 2015 11:29 am

Re: Lung surgery advice

Postby crazylife » Mon Oct 30, 2017 10:22 am

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.
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Lung surgery advice

Postby stu » Mon Oct 30, 2017 10:58 am

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
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

stevieb
Posts: 410
Joined: Sat Feb 09, 2013 12:26 am

Re: Lung surgery advice

Postby stevieb » Mon Oct 30, 2017 11:16 am

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.
Dx age 33
12/19/12 Stage IV liver/lung
1/14-2/28/13 Folfox
3/27/13 rectal/lung rst; temp ileo
7/11/13 liver res/ileo rev
9/30/13 - Folfox
11/13,2/21 NED
3/14 lung recur;6/16-VATS
7/14 5 bi lung mets
10&11/15 laser lung surg
2015 Colondar Model
12/15 5 lung met-folfiri
5/15 NED
11/15 2 lung mets; cryoablation
1/4/17 2 lung mets; cryoablation
NED as of 1/23/17

crazylife
Posts: 256
Joined: Wed Dec 30, 2015 11:29 am

Re: Lung surgery advice

Postby crazylife » Tue Oct 31, 2017 7:25 am

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.
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

stevieb
Posts: 410
Joined: Sat Feb 09, 2013 12:26 am

Re: Lung surgery advice

Postby stevieb » Tue Oct 31, 2017 9:48 am

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.
Dx age 33
12/19/12 Stage IV liver/lung
1/14-2/28/13 Folfox
3/27/13 rectal/lung rst; temp ileo
7/11/13 liver res/ileo rev
9/30/13 - Folfox
11/13,2/21 NED
3/14 lung recur;6/16-VATS
7/14 5 bi lung mets
10&11/15 laser lung surg
2015 Colondar Model
12/15 5 lung met-folfiri
5/15 NED
11/15 2 lung mets; cryoablation
1/4/17 2 lung mets; cryoablation
NED as of 1/23/17

crazylife
Posts: 256
Joined: Wed Dec 30, 2015 11:29 am

Re: Lung surgery advice

Postby crazylife » Tue Oct 31, 2017 12:16 pm

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.
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

stevieb
Posts: 410
Joined: Sat Feb 09, 2013 12:26 am

Re: Lung surgery advice

Postby stevieb » Mon Dec 04, 2017 1:07 pm

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!!
Dx age 33
12/19/12 Stage IV liver/lung
1/14-2/28/13 Folfox
3/27/13 rectal/lung rst; temp ileo
7/11/13 liver res/ileo rev
9/30/13 - Folfox
11/13,2/21 NED
3/14 lung recur;6/16-VATS
7/14 5 bi lung mets
10&11/15 laser lung surg
2015 Colondar Model
12/15 5 lung met-folfiri
5/15 NED
11/15 2 lung mets; cryoablation
1/4/17 2 lung mets; cryoablation
NED as of 1/23/17

User avatar
Sophy
Posts: 261
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Re: Lung surgery advice

Postby Sophy » Mon Dec 04, 2017 4:10 pm

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
dx T3N1M0 Feb 2011 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
June 20 CT shows nodule, bronchoscopy confirms is scar tissue, still NED
Dec 20 stopping Xeloda continue celebrex, cimetedine
Aug 21,March 23 scans show still NED
March 2023 CURED - discharged from Oncology, no more scans or follow up

crazylife
Posts: 256
Joined: Wed Dec 30, 2015 11:29 am

Re: Lung surgery advice

Postby crazylife » Tue Dec 05, 2017 7:16 pm

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?
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Lung surgery advice

Postby juliej » Tue Dec 05, 2017 8:54 pm

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! :shock:

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
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: Lung surgery advice

Postby AppleTree » Tue Dec 05, 2017 9:36 pm

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.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

crazylife
Posts: 256
Joined: Wed Dec 30, 2015 11:29 am

Re: Lung surgery advice

Postby crazylife » Sat Dec 30, 2017 3:45 pm

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.
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Lung surgery advice

Postby rp1954 » Sat Dec 30, 2017 11:36 pm

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.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 104 guests