Treatment For Multiple Lung Nodules In Europe?

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O Stoma Mia
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Re: Treatment For Multiple Lung Nodules In Europe?

Postby O Stoma Mia » Sat Aug 14, 2021 1:39 am

There is Colon Club member Sophy who went to Germany and UK for lung met laser surgery.

You can read some of her posts here.

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O Stoma Mia
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Location: On vacation. Off-line for now.

Re: Treatment For Multiple Lung Nodules In Europe?

Postby O Stoma Mia » Sat Aug 14, 2021 12:51 pm

Although I have never had any lung mets, I have a few comments/questions.

It may be important to know where the lung mets are located. There are 5 lung lobes, two on the left and three on the right. If all of the mets are in the same lobe, then the procedure would be simple, I imagine. However, if the multiple mets are spread over all 5 lobes, then the surgeon might not even want to attempt laser surgery.

Do you have information on where exactly the mets are located? And also, are they located on the outer surface of the lungs, or somewhere deep inside? This might make a difference.

Image

stu
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Re: Treatment For Multiple Lung Nodules In Europe?

Postby stu » Sat Aug 14, 2021 1:25 pm

Stevieb had it too I am sure ! Dr Ladas no longer practices in the U.K. as far as I am aware he retired but Dr Drew is still in practice. I remember both Sophie and Stevie having their treatment. It was certainly successful at the time . Once the tumour burden is significantly reduced you can look at other methods to control it also .
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 .

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Sophy
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Location: New Zealand

Re: Treatment For Multiple Lung Nodules In Europe?

Postby Sophy » Sat Aug 14, 2021 8:57 pm

I had the lung laser surgery 3 times in 2014 to remove multiple mets. The location of the mets doesn't seem to rule out surgery, I had one about a cm from my heart and it was successfuly removed which Dr Ladas said could not have been done with traditional surgery. Up to 100 mets can be removed from each lung and the surgery can be repeated in the event of recurrence. My third surgery was a met which had been missed in the first surgery.

I have been NED for 7 years since my last surgery, PET scan last week was all good. I took low dose xeloda with celecoxib from surgery until last December when I stopped xeloda and now take just the celecoxib and cimetidine.

I would recommend this surgery to anyone who is able to access it. It was expensive and involved a lot of travel (I am a New Zealander) but it was worth it for me. When I had the surgery the cure rate with the lung laser was 27% which was a lot more attractive than the 0% my oncologist was predicting.

Good luck
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

roadrunner
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Re: Treatment For Multiple Lung Nodules In Europe?

Postby roadrunner » Sat Aug 14, 2021 9:19 pm

Sophy: If I may ask, how expensive is “expensive”? Fortunately, don’t appear to need this right now but if things go wrong it would be good to know.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

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

Re: Treatment For Multiple Lung Nodules In Europe?

Postby Sophy » Sun Aug 15, 2021 12:19 am

Roadrunner - I think the hospital charged about 25,000 Euros in total for all medical costs, fully catered 2 week stay in private room for me plus a second room for my companion. Probably very cheap compared to US medical but expensive for New Zealanders used to free healthcare.

I hope that you won't need to go but it is a good option if you do need to. I did not like the hospital food but Coswig in the snow was beautiful.
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

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: Treatment For Multiple Lung Nodules In Europe?

Postby roadrunner » Sun Aug 15, 2021 11:11 am

Thanks Sophy! Fingers crossed that I don’t need anything further, but it’s good to know this is an option (albeit an expensive one). It’s sad that this hasn’t caught on elsewhere. It appears to be a life-saving option in some, or perhaps even many, cases.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

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

Re: Treatment For Multiple Lung Nodules In Europe?

Postby stu » Sun Aug 15, 2021 2:35 pm

Well done , it’s a window of opportunity and I am praying it goes well for you !
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 .

henny-crc
Posts: 17
Joined: Mon Sep 14, 2020 6:09 pm

Re: Treatment For Multiple Lung Nodules In Europe?

Postby henny-crc » Sun Aug 15, 2021 10:51 pm

prayingforccr wrote:
stu wrote:Well done , it’s a window of opportunity and I am praying it goes well for you !
Stu


Stu. My report indicated that several of the nodules are showing new cavitation.

Does that mean they are dying/collapsing?

Perhaps my alternative treatments are working?

No, its obviously not working. Your nodules are growing. Stop wasting your time on this please.
Dx 06/20
23 yo
Stage 3A
T1N2a

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

Re: Treatment For Multiple Lung Nodules In Europe?

Postby stu » Mon Aug 16, 2021 3:33 am

Hi,
I honestly would not know what that means in terms of prognosis but you have a good plan in laser surgery and don’t loose sight of that !
You have had some wonderful input from people who have experienced this treatment first hand !
Praying your accepted and can put a good plan into place !
Hold on tight . We are here for you !
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 .

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: Treatment For Multiple Lung Nodules In Europe?

Postby roadrunner » Mon Aug 16, 2021 11:48 am

Prayingforccr:

If it were me, I’d ask my team about this. Cavitation appears to occur in about 10% of pulmonary metastases of CRC (one study), and various processes appear to be linked to it. I think the question of what it means for prognosis is complex and may be dependent of the circumstances of your individual case. While I totally understand your interest in views of people on here, the question of what this particular radiologic finding means for you is likely beyond us. So I’d listen to your doctors on this question. I understand that you want to see confirmation that “alternative treatments” are working (completely understandable under the circumstances), and that you may feel that your (conventional) doctors are hostile to those, but this is just a limited question of what the impact on the finding of cavitation means for your prognosis, not a judgment on those treatments. Thus, I think they will give you a valuable answer, one that you should take seriously. It is important to have hope, but it would be a mistake to engage in magical thinking. As Stu says, you still have therapeutic options to pursue, and I’d want to make those decisions in light of full information, rationally evaluated.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

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

Re: Treatment For Multiple Lung Nodules In Europe?

Postby stu » Mon Aug 16, 2021 12:52 pm

Will you act on Dr Drew’s laser surgery if offered to you ?My mum had to wait a bit for the cure ! Just twelve years . Our way of managing it was to consider each step in the process a reduction in the tumour burden then the next step in the process had a bit less work to do and reduced it further ! Many steps to NED as they say but it got her there with many , many good times too!
She was open minded to using all clinical options available to her . So chemo first , then surgery ! That was the way she went !

This is a very difficult stage but seeking out windows of opportunity is what I credit to her longevity back when it was not so popular to do so ! If you have some reduction , great but that does not stop you from looking at the benefit of other approaches to augment that !
Many steps to NED but well worth it in her case !
Take special care and I will look out for your posts !
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 .

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: Treatment For Multiple Lung Nodules In Europe?

Postby roadrunner » Mon Aug 16, 2021 1:50 pm

You are the captain of your own ship, so I’ll step back on this, but I feel compelled to give this last cautionary note on the subject:

Cavitation can show central necrosis, and you’re right that it can appear (at least according to one study) as a treatment effect. However, it also appears to have vascular causes unrelated to treatment, at least in some cases (basically, the structures in place can’t support the tumor), and at least some tumors that show cavitation appear to retain viability. Furthermore, even if the cavitation is prognostically significant for some mets in your case, some nodules are showing it and others aren’t. And I think it’s likely a bridge too far to go from a finding of cavitation in some lesions to the conclusion that alternative treatments are working and will eventually eradicate disease.

So it appears you have a significant metastatic disease burden, and even if cavitation is positive in your case, failing to treat that disease now could very well have adverse consequences. For example, while it was traditionally believed that pulmonary metastases of CRC do not themselves metastasize, animal studies, and current views, on this are equivocal. Systemic chemotherapy and/or other treatment might address that issue, and/or might buy you significant time (and thus potentially other options), even if it isn’t curative right away. Additionally, such therapy might address other preexisting, occult disease.

For these reasons, I think another period of waiting may not be a good idea. Especially if your team counsels against it.

I well understand how hard it is to dive back into treatment when you feel fine. But I would try as hard as possible to drop that psychological factor from my calculus. You still have legitimate, potentially productive (and even curative, particularly in stages, down the line) chemotherapeutic (and immunotherapy) options, potential laser surgery, etc.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

zephyr
Posts: 363
Joined: Thu Aug 18, 2016 7:31 am

Re: Treatment For Multiple Lung Nodules In Europe?

Postby zephyr » Tue Aug 17, 2021 12:59 pm

Replied to your message. Have you seen the research and papers on this surgery? If not, let me know and I'll forward them. This surgery is not new; they've been doing it for over 20 years. NED is a possibility but I don't think you'll find any treatment that is guaranteed. That said, I think waiting another 3 months is probably a good idea given the circumstances. I've explained more in my reply.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: Treatment For Multiple Lung Nodules In Europe?

Postby roadrunner » Tue Aug 17, 2021 1:40 pm

It’s reassuring to hear your oncologist is recommending a path you favor as well. Did he/she express a rationale for waiting?
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23


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