Need advice for next steps

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onedayatatime
Posts: 11
Joined: Thu Dec 16, 2021 7:25 pm

Need advice for next steps

Postby onedayatatime » Thu Aug 03, 2023 9:47 am

Since my VATS surgery in 2021 I've had a sense that the cancer was still lurking. My CEA never got as low as I had hoped (lowest 1.6) and it continued to climb with every CEA test every 3 months. After my VATS, my CT scans were scheduled for every 6 months but with stable results each time, my oncologist suggested I get one every year. So from June 2022 to June 2023 my CEA steadily rose. It is now at 2.9 and my June '23 CT scan showed a new nodule at 9mm near the VATS site. At this point, I'm scheduled for another CT in September to see if it grows to 1 cm and if my CEA rises. At that point, if the nodule grows and CEA rises, I'll get a PET scan. My oncologist is a firm believer that a PET before 1 cm is not helpful.

Note: My CEA was 5 at diagnosis (stage IV) and rose to 6.7 just before VATS so it is a helpful marker even though the numbers are low.

When I had my VATS in '21, the surgeon said if the cancer returned then I'd have to have my lobe removed. I would rather not have it removed (knowing the complications that can arise from this surgery) and I would prefer another VATS. Does anyone have experience with mets returning to the same lobes and with multiple VATs to a lobe?

I never received chemo after my VATS and I felt that was a mistake. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4986771/ and one of the variables for success is chemo prior to and after VATS)

I did have issues with Chemo due to an ileostomy but this won't be an issue this time round because it's been reversed. However, I did get a blood clot and this does make me nervous.

So, I'm asking myself these questions:

1. Should I have chemo before, shrink the nodule, have VATS and then chemo after, saving the lobe?
2. Should I have another VATS (if possible) and then chemo?
3. Should I have another VATS (if possible) and no chemo?
4. Should I simply have surgery to remove the lobe and no chemo?
5. Should I have surgery to remove the lobe and then chemo?
6. Is there a role for radiation in order to keep the lobe?

My oncologist is not the most helpful person. He and I have a difficult time communicating. There is no hope of replacing him as he is the top guy in my city and I don't have the means to go anywhere else.

For those who have had lung mets, what has been your experience with VATs, lobe removals, and chemo prior to or after?

I'm really not sure the best way forward. Would love to hear from you!
57@dx:Oct19 emgncy Lt-side surgery/ostomy/Stage 4
CEA:5/T4N0M1/lung met 14.7mmabscess 7 wks hospital
Jan20port/CEA4.4/chemo 4 rounds/CEA3.7/bone scan
Mar20 chemo stopped due to ostomy/dehyd/kidney damage/neuropathy/blood clot
6 mths shots for clot/CEA3.2
Jun20 CT (7 nodules 1.3mm–7.64mm) met 9.9mm
Jul20 reversal
Sep20 Iron infusions
Dec20 CT met 18mm CEA6.7
Jan20 Biopsy,PET
Feb21 VATS
Jun21 CT Stable CEA2.1
Jul/Aug21 Cataractx2 due to chemo/CEA2.0
Dec21 2 new nodules at VATS surgery site/CEA1.8
Mar22 Port removed
Jun23 New Met 9mm/CEA 2.9

Rock_Robster
Posts: 1028
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Need advice for next steps

Postby Rock_Robster » Thu Aug 03, 2023 12:16 pm

I’m not a VATS expert, but on #6 there is some quite encouraging emerging data around the use of aggressive (high-dose) SBRT/SABR for isolated lung mets. I’d say worth adding a consult with a lung-specialising rad onc to your list of expert opinions to seek.

In my experience chemo is a funny one for lungs - it can clear them entirely, or do nothing at all. Given you have very low disease burden now strikes me as the time to be very aggressive, which would not mean delaying radical treatment for chemo. I get your concerns around lobectomy though and makes sense to assess other options.

Also there isn’t strong evidence for adjuvant chemo after surgery for recurrent/progressed metastatic disease. My onc’s view was to treat radically then go on very active surveillance, given the lack of proven benefit from chemo, and risks of treatment - including potentially accelerating chemoresistance (this is assuming the original adjuvant chemo had been done).

Also your onc’s view on lung PET is reasonable - I’ve had a few sub-cm lung things for a couple of years that have never been PET-avid.

Good luck,
Rob
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

Nor Cal
Posts: 89
Joined: Sun Dec 06, 2020 8:18 pm

Re: Need advice for next steps

Postby Nor Cal » Thu Aug 03, 2023 5:44 pm

prayingforccr wrote:I would investigate cryoablation immediately.


I agree. Has anyone beside your onc reviewed the scans? I'd call the interventional radiologist and request them to do so, if your onc hasn't already done that.

Also interested if you have any insight as to why the onc thinks PETs aren't useful on <1cm nodules?
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 56 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

roadrunner
Posts: 465
Joined: Sun Jan 12, 2020 8:46 pm

Re: Need advice for next steps

Postby roadrunner » Thu Aug 03, 2023 7:53 pm

Your post raises several questions for me: (1) You refer to a prior “VATS,” but that just means “video assisted thoracic surgery.” I just had a lobectomy done by VATS. Was yours a wedge resection, a segmentectomy, or something else? (2) WHY does your surgeon say it’s got to be a lobectomy this time? Location, proximity to vascular or bronchial structures, etc.? These imply different things. (3) Which lobe is it? (They are not interchangeable.) (4) what’s your lung health, functional capacity, lifestyle right now? (4) Perhaps most importantly, are you confident you don’t have suspicious nodules in the other lobes?

Some info: I had a 7mm round, defined nodule that all agreed was likely a met from my RC. I opted for SBRT, and was advised that the likelihood of recurrence was low. It recurred about a year later and hid behind the atelectasis/radiation damage until it was quite sizable (perhaps 2cm, maybe a bit bigger). It was also very close to the pulmonary artery. My options were pretty limited. I could have explored cryoablation, but the proximity to vascular structures concerned me (there are techniques for this, but they are newish and hard to find). Plus there is a non-negligible recurrence rate, and it was large and obscured. So I went with lobectomy. The operation was easy, pain was minimal. Only one night in hospital. I am a little over three weeks out, and am walking 2.5-3 miles a day (briskly, including hills). I’m also a singer and guitarist and impacts on that are small. General life is pretty normal. Can climb ten flights and just get a little winded. Downsides are (1) I’m a runner, and so far am only approaching .25 miles before getting winded. Allegedly that will come back over time; (2) I have less margin in terms of lung tissue if stuff crops up. That’s a big one, but you gotta make calls with this stuff.

While I agree with PFCCR that cryoablation may be a good option, you say you can’t travel, so that may be out. If it’s offered near you it might be worth considering once you have the full context. But if you had a recurrence already you should discuss that with them, for sure. RFA is another option. As is SBRT, even though it didn’t work for me. As far as lobectomy goes, I had the LUL removed, which is a big one. You probably know the anatomy, and the lobes are not created equal. I did chemo before the surgery to try to address the risks associated with the surgery and to give my surgeon an edge, as he couldn’t be sure central structures weren’t involved. He got negative margins with no problems as it turned out. 4 FOLFIRIs shrank the metastasis, though I’m still trying to determine how much. FWIW, my understanding is that PET gets unreliable for small pulmonary nodules. Size, growth rate, and appearance give an experienced oncologist or thoracic surgeon a pretty good idea, honestly. You do have to consider context—e.g., smoking history, COVID or other respiratory infection, etc., but it gets pretty easy once it’s no longer a micronodule. Especially if you watched it grow.

Hope all that helps. Happy to answer anything related if it was confusing or raised questions for you.
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

onedayatatime
Posts: 11
Joined: Thu Dec 16, 2021 7:25 pm

Re: Need advice for next steps

Postby onedayatatime » Fri Aug 04, 2023 2:51 am

Thank you, Rob, for your input. It is appreciated.

Rock_Robster wrote:I’m not a VATS expert, but on #6 there is some quite encouraging emerging data around the use of aggressive (high-dose) SBRT/SABR for isolated lung mets. I’d say worth adding a consult with a lung-specialising rad onc to your list of expert opinions to seek.

In my experience chemo is a funny one for lungs - it can clear them entirely, or do nothing at all. Given you have very low disease burden now strikes me as the time to be very aggressive, which would not mean delaying radical treatment for chemo. I get your concerns around lobectomy though and makes sense to assess other options.

Also there isn’t strong evidence for adjuvant chemo after surgery for recurrent/progressed metastatic disease. My onc’s view was to treat radically then go on very active surveillance, given the lack of proven benefit from chemo, and risks of treatment - including potentially accelerating chemoresistance (this is assuming the original adjuvant chemo had been done).

Also your onc’s view on lung PET is reasonable - I’ve had a few sub-cm lung things for a couple of years that have never been PET-avid.

Good luck,
Rob
57@dx:Oct19 emgncy Lt-side surgery/ostomy/Stage 4
CEA:5/T4N0M1/lung met 14.7mmabscess 7 wks hospital
Jan20port/CEA4.4/chemo 4 rounds/CEA3.7/bone scan
Mar20 chemo stopped due to ostomy/dehyd/kidney damage/neuropathy/blood clot
6 mths shots for clot/CEA3.2
Jun20 CT (7 nodules 1.3mm–7.64mm) met 9.9mm
Jul20 reversal
Sep20 Iron infusions
Dec20 CT met 18mm CEA6.7
Jan20 Biopsy,PET
Feb21 VATS
Jun21 CT Stable CEA2.1
Jul/Aug21 Cataractx2 due to chemo/CEA2.0
Dec21 2 new nodules at VATS surgery site/CEA1.8
Mar22 Port removed
Jun23 New Met 9mm/CEA 2.9

onedayatatime
Posts: 11
Joined: Thu Dec 16, 2021 7:25 pm

Re: Need advice for next steps

Postby onedayatatime » Fri Aug 04, 2023 3:07 am

Thank you, Roadrunner.

roadrunner wrote:Your post raises several questions for me: (1) You refer to a prior “VATS,” but that just means “video assisted thoracic surgery.” I just had a lobectomy done by VATS. Was yours a wedge resection, a segmentectomy, or something else? (2) WHY does your surgeon say it’s got to be a lobectomy this time? Location, proximity to vascular or bronchial structures, etc.? These imply different things. (3) Which lobe is it? (They are not interchangeable.) (4) what’s your lung health, functional capacity, lifestyle right now? (4) Perhaps most importantly, are you confident you don’t have suspicious nodules in the other lobes?


I had a wedge section on my lower left lobe. I was in ICU for one day and then on a surgical floor for 2 days and then released. They had issues with intubating me and tried for over an hour before using a child's tube which was not ideal for the surgeon. He had to take quite a bit of the lung to get clean edges so that's why he mentioned taking the lobe if another met formed in the same area. I have never smoked, I have not had Covid, I do have 8 other nodules in all lobes which are stable and have not changed for the past 4 years (we're assuming they are from a previous case of pneumonia in 1999 and other non-pneumonia infections/100 day cough otherwise known as whooping cough). My lung function test was excellent prior to the VATS. I guess I just don't know what will be offered once it's confirmed by a PET. Your experience below is helpful and hopeful that, if I should have my lobe removed, it might be fine.


Some info: I had a 7mm round, defined nodule that all agreed was likely a met from my RC. I opted for SBRT, and was advised that the likelihood of recurrence was low. It recurred about a year later and hid behind the atelectasis/radiation damage until it was quite sizable (perhaps 2cm, maybe a bit bigger). It was also very close to the pulmonary artery. My options were pretty limited. I could have explored cryoablation, but the proximity to vascular structures concerned me (there are techniques for this, but they are newish and hard to find). Plus there is a non-negligible recurrence rate, and it was large and obscured. So I went with lobectomy. The operation was easy, pain was minimal. Only one night in hospital. I am a little over three weeks out, and am walking 2.5-3 miles a day (briskly, including hills). I’m also a singer and guitarist and impacts on that are small. General life is pretty normal. Can climb ten flights and just get a little winded. Downsides are (1) I’m a runner, and so far am only approaching .25 miles before getting winded. Allegedly that will come back over time; (2) I have less margin in terms of lung tissue if stuff crops up. That’s a big one, but you gotta make calls with this stuff.

While I agree with PFCCR that cryoablation may be a good option, you say you can’t travel, so that may be out. If it’s offered near you it might be worth considering once you have the full context. But if you had a recurrence already you should discuss that with them, for sure. RFA is another option. As is SBRT, even though it didn’t work for me. As far as lobectomy goes, I had the LUL removed, which is a big one. You probably know the anatomy, and the lobes are not created equal. I did chemo before the surgery to try to address the risks associated with the surgery and to give my surgeon an edge, as he couldn’t be sure central structures weren’t involved. He got negative margins with no problems as it turned out. 4 FOLFIRIs shrank the metastasis, though I’m still trying to determine how much. FWIW, my understanding is that PET gets unreliable for small pulmonary nodules. Size, growth rate, and appearance give an experienced oncologist or thoracic surgeon a pretty good idea, honestly. You do have to consider context—e.g., smoking history, COVID or other respiratory infection, etc., but it gets pretty easy once it’s no longer a micronodule. Especially if you watched it grow.

Hope all that helps. Happy to answer anything related if it was confusing or raised questions for you.
57@dx:Oct19 emgncy Lt-side surgery/ostomy/Stage 4
CEA:5/T4N0M1/lung met 14.7mmabscess 7 wks hospital
Jan20port/CEA4.4/chemo 4 rounds/CEA3.7/bone scan
Mar20 chemo stopped due to ostomy/dehyd/kidney damage/neuropathy/blood clot
6 mths shots for clot/CEA3.2
Jun20 CT (7 nodules 1.3mm–7.64mm) met 9.9mm
Jul20 reversal
Sep20 Iron infusions
Dec20 CT met 18mm CEA6.7
Jan20 Biopsy,PET
Feb21 VATS
Jun21 CT Stable CEA2.1
Jul/Aug21 Cataractx2 due to chemo/CEA2.0
Dec21 2 new nodules at VATS surgery site/CEA1.8
Mar22 Port removed
Jun23 New Met 9mm/CEA 2.9

onedayatatime
Posts: 11
Joined: Thu Dec 16, 2021 7:25 pm

Re: Need advice for next steps

Postby onedayatatime » Fri Aug 04, 2023 3:23 am

Nor Cal wrote:
prayingforccr wrote:I would investigate cryoablation immediately.


I agree. Has anyone beside your onc reviewed the scans? I'd call the interventional radiologist and request them to do so, if your onc hasn't already done that.

I'm not sure. I know that initially, there was a team that met to discuss my first met (the surgeon who did my initial surgery, the onc but I'm not sure who else was part of the meeting). I just went along with the VATS resection because chemo was off the table as far as my onc was concerned. Thank you for your question, Nor Cal.

Also interested if you have any insight as to why the onc thinks PETs aren't useful on <1cm nodules?
57@dx:Oct19 emgncy Lt-side surgery/ostomy/Stage 4
CEA:5/T4N0M1/lung met 14.7mmabscess 7 wks hospital
Jan20port/CEA4.4/chemo 4 rounds/CEA3.7/bone scan
Mar20 chemo stopped due to ostomy/dehyd/kidney damage/neuropathy/blood clot
6 mths shots for clot/CEA3.2
Jun20 CT (7 nodules 1.3mm–7.64mm) met 9.9mm
Jul20 reversal
Sep20 Iron infusions
Dec20 CT met 18mm CEA6.7
Jan20 Biopsy,PET
Feb21 VATS
Jun21 CT Stable CEA2.1
Jul/Aug21 Cataractx2 due to chemo/CEA2.0
Dec21 2 new nodules at VATS surgery site/CEA1.8
Mar22 Port removed
Jun23 New Met 9mm/CEA 2.9

roadrunner
Posts: 465
Joined: Sun Jan 12, 2020 8:46 pm

Re: Need advice for next steps

Postby roadrunner » Fri Aug 04, 2023 10:29 am

OneDay: Definitely consider this carefully, balancing all factors discussed in this thread and any others you may have. I’m not sure I understand why a larger wedge the first time requires lobectomy now, frankly. Perhaps it is location. I’d try to get clarity on that. Impact is certainly greater from lobectomy than even segmentectomy. Perhaps recurrence has other implications, though, as well. Don’t know there. Possibly a point for a second opinion. Of course, with luck it turns out not to be a met.

While lobectomy is major surgery and does require real rehab, I think the biggest concern I think is keeping as much lung tissue as you can in case you get other stuff in the future.
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

onedayatatime
Posts: 11
Joined: Thu Dec 16, 2021 7:25 pm

Re: Need advice for next steps

Postby onedayatatime » Tue Mar 26, 2024 4:17 am

I posted this quite a while ago. In June, the met was around 6 mm (the size of 9mm was a mistake by the radiologist). There was a recommendation to get another scan in 3 months but my cea didn't rise so I deferred the scan to December. I've had 19 CT scans so I thought it would be better to wait the 6 months. Well, our hospital experienced a cyber attack so the Dec CT scan was delayed until January. At that point, the scan showed at 9mm and my cea was 3.2. My oncologist met with a team and since then I've met with a surgeon, a radiologist oncologist, had a biopsy, a breathing test, am having a PET scan on Thursday and a colonoscopy April 1 (a colonoscopy because I'm experiences symptoms I had when I had the first cancer). After all these meetings/test are complete I need to make a decision.

1. The surgeon cannot guarantee that my lobe won't be removed. When I asked him what he would do, he said he was a surgeon and would have surgery. However, he did say surgery is always an option should the radiation not work or should it delay the inevitable surgery.

2. The radiologist oncologist said he would agree to do the tests necessary, and if a candidate, would perform radiation. When I asked him what he would do, he said surgery is always the first option if the patient is healthy enough for it.

3. I have a meeting with my oncologist on the 9th of April and I need to make a decision. He thinks surgery is the answer, as well.

The first time I had a met in my left lower lobe all I wanted was to have the cancer removed and I jumped at the wedge option. Now, I'm not sure I want to risk losing a lobe. I have two mets on my right lung (top and bottom ends) that are stable and could begin growing again.

Has anyone had chemo to make a met smaller prior to having the VATS wedge surgery? Is this a thing/option? I want to ask my oncologist when I see him next. Perhaps, then, the lobe can be saved.

Also, I do worry about mets metastasizing (my surgeon said it's generally understood that this occurs) as this seems to have taken longer than I wanted, however, the met at first was small and is probably only now the size it needs to be to make the PET scan effective. My CEA wasn't rising too quickly (1 or 2 points every few months for the past three years) then all of a sudden in one month it jumped from 3.2 to 5.4 and I'm not sure what it is now since the last time it was taken as the end of January.

Thanks for reading, and I welcome your insights.
57@dx:Oct19 emgncy Lt-side surgery/ostomy/Stage 4
CEA:5/T4N0M1/lung met 14.7mmabscess 7 wks hospital
Jan20port/CEA4.4/chemo 4 rounds/CEA3.7/bone scan
Mar20 chemo stopped due to ostomy/dehyd/kidney damage/neuropathy/blood clot
6 mths shots for clot/CEA3.2
Jun20 CT (7 nodules 1.3mm–7.64mm) met 9.9mm
Jul20 reversal
Sep20 Iron infusions
Dec20 CT met 18mm CEA6.7
Jan20 Biopsy,PET
Feb21 VATS
Jun21 CT Stable CEA2.1
Jul/Aug21 Cataractx2 due to chemo/CEA2.0
Dec21 2 new nodules at VATS surgery site/CEA1.8
Mar22 Port removed
Jun23 New Met 9mm/CEA 2.9

rp1954
Posts: 1855
Joined: Mon Jun 13, 2011 1:13 am

Re: Need advice for next steps

Postby rp1954 » Tue Mar 26, 2024 6:30 am

The best lung surgery option may be in a specialty lung hospital in Coswig, Germany, near Dresden. They are radically more efficient in tissue sparing and more mets recovered in an operation than any North American hospital. Read/search on this forum for Rolles laser (lung) surgeries for lung mets. Last quoted price I recall was $20,000 per lung for a week or so as an inpatient.
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

roadrunner
Posts: 465
Joined: Sun Jan 12, 2020 8:46 pm

Re: Need advice for next steps

Postby roadrunner » Tue Mar 26, 2024 8:10 am

You included in your new post what looks like material new information. You say you have two mets in your right lung (seemingly RUL and RLL) that “are stable and might begin growing again.” I have to assume this is a mistake, because if these are known metastases, I believe the treatment plans you’re being offered would be very different. If you can clean this up (either way), I could venture some comments. You situation shares similarities with mine, so that may be useful, or at least supportive.
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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