Advice Needed: Is lung surgery the best approach?

Please feel free to read, share your thoughts, your stories and connect with others!
Megrmcd13
Posts: 11
Joined: Tue Aug 20, 2019 2:13 pm

Advice Needed: Is lung surgery the best approach?

Postby Megrmcd13 » Wed Oct 09, 2019 8:36 am

After 2 months of chemo “watching and waiting” (and being off chemo for 5 of the 6 past months) no new nodules popped up in my husband’s lungs so the surgeon is willing to do a 2 part open surgery to remove the 12 spots. The surgeon told us that this is more than likely not a “cure” and that while they don’t have hard evidence confirming that doing this surgery helps, anecdotally they feel that it does.

So some questions:
1. If you’ve had this 2 part open surgery, do you have any regrets?
2. What is your lung function like now?
3. Have Mets returned after?
4. Have you been on maintenance chemo?
5. I know surgery is typically the gold standard, but we obviously have some concerns that we’d be going through 2 major surgeries only for more mets to pop up. Am I being crazy for thinking this way?
6. Does having this type of surgery take away options down the line if more Mets pop up?
7. Anything else we should consider or be aware of?

Thanks in advance!

zephyr
Posts: 250
Joined: Thu Aug 18, 2016 7:31 am

Re: Advice Needed: Is lung surgery the best approach?

Postby zephyr » Wed Oct 09, 2019 11:15 am

Megrmcd13 wrote:So some questions:
1. If you’ve had this 2 part open surgery, do you have any regrets?
2. What is your lung function like now?
3. Have Mets returned after?
4. Have you been on maintenance chemo?
5. I know surgery is typically the gold standard, but we obviously have some concerns that we’d be going through 2 major surgeries only for more mets to pop up. Am I being crazy for thinking this way?
6. Does having this type of surgery take away options down the line if more Mets pop up?
7. Anything else we should consider or be aware of?


I have no medical background except as a patient and I'm not sure what you mean by a 2-part open surgery. I had two thoracotomies: first they operated on the right side and then the left a month later. My nodules were spread across both lungs. Has anyone mentioned a wedge resection? That's where they remove a wedge shaped section of lung. I never had that so my experience will be different. I had a laser procedure that targeted the individual nodules. Even so, I had deep central nodules that required me to part ways with the middle right lobe and part of my upper left lobe. I think maybe your first question about having any regrets should be your last because whether someone has regrets might depend on the answers to the other questions first. For example, someone who had other health conditions or who lost a lot of lung might have more regrets that someone who lost just a little.

In my experience:

1. I have NO regrets, not a one. Even having lost the middle right lobe and most of the upper left, NO regrets.

2. My lung function is back to normal. I don't know how much difference it made but I had no other medical conditions going into the surgery, I'd had a 6-week chemo break before surgery during which I'd been walking 4-5 miles a day, and I started the breathing exercises with an Incentive Spirometer about a month before surgery. I was back to walking 4-5 miles a day (10,000 steps) about a week after each surgery. I had a terrific physiotherapist, and I was diligent about walking and doing the breathing exercises she assigned, as well as the post-op exercises classes.

3. Yes, the mets returned. Three popped up a few months later. I had SBRT (radiation) on one but the other two are still with me and stable.

4. Yes, I'm on maintenance chemo. I take Xeloda five days a week and get an Avastin infusion every three weeks.

5. No, you're not crazy. The surgeries are a big deal. I didn't have a choice; surgery was pretty much my only chance to buy time. I hoped for cure but if I couldn't have that, I just wanted time. Early on in my journey, one oncologist told me that cancer research was moving very quickly and the next big thing was around the corner. He encouraged his patients to do whatever it took to keep going until that next big thing came along. That's probably not quite what he said but you get the idea.

6. I think the only thing that might limit future opens will be how much lung needs to be removed. Again, I don't have a medical background. To my understanding, they can only operate on one lung at a time. During surgery, the operated lung will be collapsed and the other lung will sustain you through the surgery. If you lose too much lung - let's say your right side - you won't have enough lung capacity on that side to get through another surgery on your left side.

7. The first really big thing: take the pain meds, do not try to grin and bear it. If you're in pain, your breathing will be shallow and you need to be able to breath deeply to get back your lung capacity. That's first and it's really, really, REALLY important. Second, it's temporary. The breathing tubes are uncomfortable but they'll come out in a few days. The pain can be intense at times but if you take the pain meds and do the exercises, it will lessen over time as you heal. The shoulder on the operated side may be sore for a while but if you do shoulder exercises, it will pass (you can fake swim from bed). I was in a speciality thoracic hospital where they had post-op exercises classes tailored to people who had just undergone a thoracotomy. If they don't offer the same to your husband, ask the PT person to recommend some exercises. I was in a country where they don't try to throw you out of the hospital as soon as possible; they kept me for a 7-8 days after each surgery. If you are released within the first few days, you might consider spending as much hospital time with the PT person and make sure you really know all the exercises and are doing them properly. If your husband is not connecting with the physical therapist assigned, ask for another.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

Megrmcd13
Posts: 11
Joined: Tue Aug 20, 2019 2:13 pm

Re: Advice Needed: Is lung surgery the best approach?

Postby Megrmcd13 » Wed Oct 09, 2019 1:11 pm

I have no medical background except as a patient and I'm not sure what you mean by a 2-part open surgery.


Thank you!! By two part surgery I meant two separate open surgeries (one on each lung). The surgeon plans to palpitate each lung to remove any additional tumors that may not be visible on the CT scan.

Claudine
Posts: 131
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Advice Needed: Is lung surgery the best approach?

Postby Claudine » Wed Oct 09, 2019 1:44 pm

The surgeon plans to palpitate each lung to remove any additional tumors that may not be visible on the CT scan.


How small does he think he can "feel"? On my husband's CT scan, they were able to detect lung lesions as small as 1mm. Could the surgeon "feel" even smaller ones? Or does that mean that some small nodules could be missed by the scan because of their location?
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, 17, 10, 6.4, 5, 4.8, 4.2, 3.6, 3.2, 3.3, 3.2, 3.7, 4.3, 4.2, 4.2, 5.0
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

Rock_Robster
Posts: 343
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Advice Needed: Is lung surgery the best approach?

Postby Rock_Robster » Wed Oct 09, 2019 5:51 pm

Rob’s view on question 5, based on a mixture of decent research, dubious research, and a year of personal observation. There’s a few caveats in there as I don’t know the age and health status of your husband.

In an otherwise fit patient with a good performance score, any surgery with a reasonable potential to remove all macroscopic disease could have a material survival benefit and should be pursued. Even more so if the patient can then tolerate systemic chemo to target residual microscopic disease. This, combined with any credible perioperative immunomodulatory work the patient can do, gives the best chance of long-term survival and even “cure”.

Does this mean the disease won’t return? Of course not. But if it does he will likely be in a position of a much lower disease burden, with a better chance of getting on top of any isolated recurrence again if necessary.

Of course the primary fear of the surgeons is that a prompt recurrence will mean no extension of overall survival, and the patient will have gone through an unnecessary procedure (and risks) for no benefit. When the alternative is essentially palliative treatment however, as an otherwise-healthy 37 yo, I’ll take that chance. I’ll also take the extremely low chance that I die on the table (certainly lower risk for lungs than livers, I believe!).

The other concern is that surgery and time off chemo may create a pro-metastatic environment for microscopic disease. Firstly, I already HAVE macroscopic metastatic disease, so let’s get our priorities straight. Secondly, whilst the risk can’t be eliminated there are certainly things you can do to mitigate it.

In short, in case you can’t tell, I’m pro-surgery in this case. Hope that’s of some help.

Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

Megrmcd13
Posts: 11
Joined: Tue Aug 20, 2019 2:13 pm

Re: Advice Needed: Is lung surgery the best approach?

Postby Megrmcd13 » Wed Oct 09, 2019 6:03 pm

Rock_Robster wrote:Rob’s view on question 5, based on a mixture of decent research, dubious research, and a year of personal observation. There’s a few caveats in there as I don’t know the age and health status of your husband.

In an otherwise fit patient with a good performance score, any surgery with a reasonable potential to remove all macroscopic disease could have a material survival benefit and should be pursued. Even more so if the patient can then tolerate systemic chemo to target residual microscopic disease. This, combined with any credible perioperative immunomodulatory work the patient can do, gives the best chance of long-term survival and even “cure”.

Does this mean the disease won’t return? Of course not. But if it does he will likely be in a position of a much lower disease burden, with a better chance of getting on top of any isolated recurrence again if necessary.

Of course the primary fear of the surgeons is that a prompt recurrence will mean no extension of overall survival, and the patient will have gone through an unnecessary procedure (and risks) for no benefit. When the alternative is essentially palliative treatment however, as an otherwise-healthy 37 yo, I’ll take that chance. I’ll also take the extremely low chance that I die on the table (certainly lower risk for lungs than livers, I believe!).

The other concern is that surgery and time off chemo may create a pro-metastatic environment for microscopic disease. Firstly, I already HAVE macroscopic metastatic disease, so let’s get our priorities straight. Secondly, whilst the risk can’t be eliminated there are certainly things you can do to mitigate it.

In short, in case you can’t tell, I’m pro-surgery in this case. Hope that’s of some help.

Rob


Thanks this is really helpful! My husband is only 34 and other than the whole cancer thing he’s in great health. He’s already gone through an open surgery to respect his rectal tumor, ablate a spot on his liver, and install a HAI pump (to lower chance of recurrence had only 1 liver tumor). He recovered from that surgery pretty quickly so hopefully he’d recover from these surgeries quickly as well.

Rock_Robster
Posts: 343
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Advice Needed: Is lung surgery the best approach?

Postby Rock_Robster » Wed Oct 09, 2019 7:15 pm

Megrmcd13 wrote:
Rock_Robster wrote:Rob’s view on question 5, based on a mixture of decent research, dubious research, and a year of personal observation. There’s a few caveats in there as I don’t know the age and health status of your husband.

In an otherwise fit patient with a good performance score, any surgery with a reasonable potential to remove all macroscopic disease could have a material survival benefit and should be pursued. Even more so if the patient can then tolerate systemic chemo to target residual microscopic disease. This, combined with any credible perioperative immunomodulatory work the patient can do, gives the best chance of long-term survival and even “cure”.

Does this mean the disease won’t return? Of course not. But if it does he will likely be in a position of a much lower disease burden, with a better chance of getting on top of any isolated recurrence again if necessary.

Of course the primary fear of the surgeons is that a prompt recurrence will mean no extension of overall survival, and the patient will have gone through an unnecessary procedure (and risks) for no benefit. When the alternative is essentially palliative treatment however, as an otherwise-healthy 37 yo, I’ll take that chance. I’ll also take the extremely low chance that I die on the table (certainly lower risk for lungs than livers, I believe!).

The other concern is that surgery and time off chemo may create a pro-metastatic environment for microscopic disease. Firstly, I already HAVE macroscopic metastatic disease, so let’s get our priorities straight. Secondly, whilst the risk can’t be eliminated there are certainly things you can do to mitigate it.

In short, in case you can’t tell, I’m pro-surgery in this case. Hope that’s of some help.

Rob


Thanks this is really helpful! My husband is only 34 and other than the whole cancer thing he’s in great health. He’s already gone through an open surgery to respect his rectal tumor, ablate a spot on his liver, and install a HAI pump (to lower chance of recurrence had only 1 liver tumor). He recovered from that surgery pretty quickly so hopefully he’d recover from these surgeries quickly as well.

That’s great to hear; whilst it sucks that he’s so young, it definitely stands him in a great position to cope well with the surgery. I had a doctor tell me yesterday that surgery is like playing cards with a stacked deck - every one that goes well increases the chances that the next one will be fine, as you demonstrate your ability to tolerate anaesthesia and recover from what is essentially a trauma.

One more thing - I’m gonna make a shout out for the benefit of adding a signature on this forum. I think folk will be able to give you much more targeted advice with this. There’s some guidelines for this floating around somewhere if you need some help.

Cheers
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

Rock_Robster
Posts: 343
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Advice Needed: Is lung surgery the best approach?

Postby Rock_Robster » Wed Oct 09, 2019 7:39 pm

Just one other more general comment on stage IV treatments... There are a lot of treatments for metastatic CRC which appear to have pretty disappointing results on average, but may have profound benefits, potentially even curative, for a modest subgroup of patients. The problem is we don’t yet have a good means of stratifying these patients beforehand to work out who will benefit most.

This seems to include things like cyto-reductive surgery, R1-margin surgery, HIPEC, and Y90 therapy. Given the trauma involved, some docs seem uncomfortable recommending these due to the fairly mediocre average outcomes. I remind my doctors that the “average” patient also has one breast and one testicle, so clearly that’s not me. So I’d prefer the opportunity to be in the success cohort please.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

zephyr
Posts: 250
Joined: Thu Aug 18, 2016 7:31 am

Re: Advice Needed: Is lung surgery the best approach?

Postby zephyr » Wed Oct 09, 2019 9:03 pm

Megrmcd13 wrote:
The surgeon plans to palpitate each lung to remove any additional tumors that may not be visible on the CT scan.


That's terrific. My surgeons did the same thing and found more nodules than showed up on my CT scan. The CT scan reported 7 nodules but between the two surgeries, they removed 11. Of those, 8 were CRC, 1 was filled with dead cells that they thought might be where chemo wiped out the cancer, and 2 were benign growths.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

Megrmcd13
Posts: 11
Joined: Tue Aug 20, 2019 2:13 pm

Re: Advice Needed: Is lung surgery the best approach?

Postby Megrmcd13 » Thu Oct 10, 2019 9:04 am

This is what I would put in my signature! How do I add this to all of my posts. Let me know if this info changes anyone's advice or thoughts!

Wife to Husband DX with Stage III RC at 33 11/18
Moderately differentiated Adenocarcinoma
MSS, No Known Mutations (MSK IMPACT Testing pending)
2/19: MRI shows 1 met to liver – Stage IV
5/19: Open LAR, Liver tumor ablation, Installation of HAI pump, Temporary Illeostomy – Clear Margins, 0/15 lymph nodes positive
12/18 – 2/19: 4 rounds of Folfox; 2/19 – 4/19: 4 rounds of Folfoxiri; 7/19 – 8/19: 4 rounds of Folfiri; 6/19 – Present: 6 intended rounds of FUDR via HAI pump
8/19: Chest CT shows 12 enlarging bilateral lung nodules; NED elsewhere – “Watch and Wait”
10/19: Chest CT shows slight increase in lung nodules, no new nodules
Next Steps: Surgeon willing to perform staged open lung surgery to remove nodules – must decide if we will do surgery now, do chemo, or potentially look into clinical trials


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



Who is online

Users browsing this forum: Beckster, Gloriamazz, Majestic-12 [Bot], nz1 and 38 guests