How to deal with Doctors reluctance to use surgery as part of treatment

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pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

How to deal with Doctors reluctance to use surgery as part of treatment

Postby pdp497 » Wed Aug 16, 2017 11:03 am

I have now received a second opinion and again been told surgery is not an option for me. They can't remove the liver tumors so they won't even think about removing the colon tumor. I was told there is no point as if all the cancer can't be removed it would just come back. I can't figure out why the doctors want to take the option off the table it seems that several others are in the same boat, while I've seen others in here that have receive numerous surgeries. Is it just that my doctors are not as aggressive? Do I need to be pushing more? I'm still months out from hearing the effect of my first round of chemo but the waiting is killing me. I just wish I knew my doctor was being as aggressive as possible.
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: How to deal with Doctors reluctance to use surgery as part of treatment

Postby Volfan » Wed Aug 16, 2017 11:26 am

My wife and I had this discussion over the weekend. I will have treatment number 10 this coming Monday and if doc doesn't act like he wants to be real aggressive with my treatment after first line of treatment is done I'll be getting a second opinion.
Now I'm really pleased with my doc and he has told me earlier that there could be numerous scenarios going forward but before I just accept chemo for life I at least want to hear from someone else.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

KimT
Posts: 695
Joined: Sat Feb 20, 2010 8:53 pm

Re: How to deal with Doctors reluctance to use surgery as part of treatment

Postby KimT » Wed Aug 16, 2017 11:32 am

I would agree with the opinions of your doctors. If you can't remove all the cancer, there is no point in doing surgery at this time. It might be possible later if the tumors are shrunk via chemo to do surgery. You have to wait a good 6-8 weeks after surgery to even start chemo. Doing surgery to remove only part of the cancer will just delay starting chemo and other areas are just going to continue to grow. From what I have seen for stage 4 patients, chemo is the first line of treatment, then surgery later if it's possible to get it all.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: How to deal with Doctors reluctance to use surgery as part of treatm

Postby veckon » Wed Aug 16, 2017 12:17 pm

pdp497 wrote:I have now received a second opinion and again been told surgery is not an option for me. They can't remove the liver tumors so they won't even think about removing the colon tumor. I was told there is no point as if all the cancer can't be removed it would just come back. I can't figure out why the doctors want to take the option off the table it seems that several others are in the same boat, while I've seen others in here that have receive numerous surgeries. Is it just that my doctors are not as aggressive? Do I need to be pushing more? I'm still months out from hearing the effect of my first round of chemo but the waiting is killing me. I just wish I knew my doctor was being as aggressive as possible.


I am currently considered inoperable as well, so I understand your frustration. However my liver surgeon at Sloan Kettering felt that he could fully resect the liver and still leave enough to recover and my initial surgical consults were not optimistic at all. Thanks to MSK’s willingness to give it a shot, the surgeon realized he could actually perform the surgery in the end with only about 1/3 of the liver removed. Initial estimate was more like 2/3, so a clever surgeon can seemingly sometimes do things others find impossible. Unfortunately it didn’t work out because of damn peritoneum metastases, but I still feel appreciative that they tried and I am now satisfied with why I am inoperable.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Re: How to deal with Doctors reluctance to use surgery as part of treatm

Postby pdp497 » Wed Aug 16, 2017 12:50 pm

veckon wrote: I am currently considered inoperable as well, so I understand your frustration. However my liver surgeon at Sloan Kettering felt that he could fully resect the liver and still leave enough to recover and my initial surgical consults were not optimistic at all. Thanks to MSK’s willingness to give it a shot, the surgeon realized he could actually perform the surgery in the end with only about 1/3 of the liver removed. Initial estimate was more like 2/3, so a clever surgeon can seemingly sometimes do things others find impossible. Unfortunately it didn’t work out because of damn peritoneum metastases, but I still feel appreciative that they tried and I am now satisfied with why I am inoperable.


Veckon,

I recall seeing you were being treated with Keytruda, are the docs hoping it can lead to another shot at surgery in the future?
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: How to deal with Doctors reluctance to use surgery as part of treatm

Postby veckon » Wed Aug 16, 2017 12:54 pm

pdp497 wrote:
veckon wrote: I am currently considered inoperable as well, so I understand your frustration. However my liver surgeon at Sloan Kettering felt that he could fully resect the liver and still leave enough to recover and my initial surgical consults were not optimistic at all. Thanks to MSK’s willingness to give it a shot, the surgeon realized he could actually perform the surgery in the end with only about 1/3 of the liver removed. Initial estimate was more like 2/3, so a clever surgeon can seemingly sometimes do things others find impossible. Unfortunately it didn’t work out because of damn peritoneum metastases, but I still feel appreciative that they tried and I am now satisfied with why I am inoperable.


Veckon,

I recall seeing you were being treated with Keytruda, are the docs hoping it can lead to another shot at surgery in the future?


Yes. Might be possible if no further metastasis happens in the meantime and peritoneum becomes clear. So I have hope.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Re: How to deal with Doctors reluctance to use surgery as part of treatment

Postby pdp497 » Wed Aug 16, 2017 12:57 pm

Volfan wrote:My wife and I had this discussion over the weekend. I will have treatment number 10 this coming Monday and if doc doesn't act like he wants to be real aggressive with my treatment after first line of treatment is done I'll be getting a second opinion.
Now I'm really pleased with my doc and he has told me earlier that there could be numerous scenarios going forward but before I just accept chemo for life I at least want to hear from someone else.


Volfan,

What options has your doc discussed with you? One of my frustrations is almost all my communication has been with the doctors PA so I haven't had much feedback from her on what comes next. Obviously I hope I respond well and other options become available but in the interim it is so hard without knowing what the exact plan is.
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Re: How to deal with Doctors reluctance to use surgery as part of treatm

Postby pdp497 » Wed Aug 16, 2017 12:59 pm

[/quote]Might be possible if no further metastasis happens in the meantime and peritoneum becomes clear. So I have hope.[/quote]

Good Luck.
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: How to deal with Doctors reluctance to use surgery as part of treatment

Postby Volfan » Wed Aug 16, 2017 2:52 pm

The scenarios doc went over with me depends on how well I respond to the treatment.
1. I get a complete response on liver mets and they go in and remove what needs to be from rectum.
2. I get complete response on one liver met and go remove the other.
3. The liver mets become stable (not sure what that means) and we continue with chemo. 5fu and avastin.
4. I get complete response on one liver met the other is stable and we wait and watch.
5. Try to get the cancer to a chronic status and I go on and off chemo by watching my cea and scans.
Since I'm kind of in the groove of treatment now I see the doc once a month. We have even talked about just seeing him once every 6 weeks.
Doc checks my cea once a month and for the foreseeable future it will stay that way.
I know you just started treatment and everything looks pretty screwed up right now but after only 5 treatments my liver mets had shrunk 40% on average. So try to stay positive.
For me the hardest part so far is the stage you are in. Just diagnosed and just starting treatment is scary with all the uncertaintys we have. But for me once I got into a routine my mindset improved greatly.
After the chemo started killing some cancer I got my energy back. Felt like going out and went back to work.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

pdp497
Posts: 41
Joined: Thu Jul 13, 2017 3:17 pm

Re: How to deal with Doctors reluctance to use surgery as part of treatment

Postby pdp497 » Wed Aug 16, 2017 3:01 pm

Volfan wrote:The scenarios doc went over with me depends on how well I respond to the treatment.
1. I get a complete response on liver mets and they go in and remove what needs to be from rectum.
2. I get complete response on one liver met and go remove the other.
3. The liver mets become stable (not sure what that means) and we continue with chemo. 5fu and avastin.
4. I get complete response on one liver met the other is stable and we wait and watch.
5. Try to get the cancer to a chronic status and I go on and off chemo by watching my cea and scans.
Since I'm kind of in the groove of treatment now I see the doc once a month. We have even talked about just seeing him once every 6 weeks.
Doc checks my cea once a month and for the foreseeable future it will stay that way.
I know you just started treatment and everything looks pretty screwed up right now but after only 5 treatments my liver mets had shrunk 40% on average. So try to stay positive.
For me the hardest part so far is the stage you are in. Just diagnosed and just starting treatment is scary with all the uncertaintys we have. But for me once I got into a routine my mindset improved greatly.
After the chemo started killing some cancer I got my energy back. Felt like going out and went back to work.


Thanks for the info and offering some hope. I had been feeling so sick before treatment (hemoglobin at 5.6 when I ended up in er) that the prospect of having something resembling normal energy is exciting.
Dx 7/17 stage 4 inoperable colon cancer with "numerous" mets to the liver (one large 2.6cm x 2.3 the rest 1 to 1.5 cm)
MSS
KRAS
8/4 CEA 240

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

Re: How to deal with Doctors reluctance to use surgery as part of treatment

Postby juliej » Wed Aug 16, 2017 4:09 pm

Volfan wrote:The scenarios doc went over with me depends on how well I respond to the treatment.
1. I get a complete response on liver mets and they go in and remove what needs to be from rectum.
2. I get complete response on one liver met and go remove the other.
3. The liver mets become stable (not sure what that means) and we continue with chemo. 5fu and avastin.
4. I get complete response on one liver met the other is stable and we wait and watch.
5. Try to get the cancer to a chronic status and I go on and off chemo by watching my cea and scans.
Since I'm kind of in the groove of treatment now I see the doc once a month. We have even talked about just seeing him once every 6 weeks.
Doc checks my cea once a month and for the foreseeable future it will stay that way.
I know you just started treatment and everything looks pretty screwed up right now but after only 5 treatments my liver mets had shrunk 40% on average. So try to stay positive.
For me the hardest part so far is the stage you are in. Just diagnosed and just starting treatment is scary with all the uncertaintys we have. But for me once I got into a routine my mindset improved greatly.
After the chemo started killing some cancer I got my energy back. Felt like going out and went back to work.

Most docs want to see a response to chemo before considering surgery. Volfan, your 40% response is exactly what they're look for! :D If a patient has a poor response to chemo, then it's dangerous to start removing tumors because the remaining ones will continue to grow. Surgery itself often triggers growth hormone (to help the body heal), which makes the matter even worse. There's a problem with chemo-for-life too. There's a chance the cancer will eventually mutate and you run out of chemo options to keep it stable.

What's upsetting is that many oncologists refuse to even consider surgery for Stage 4 patients, even those who have a good response to chemo. We're often written off as "chemo for life" patients, which is unfortunate. You really have to search for a doc with an aggressive attitude about treating Stage 4 patients.

In my case, I was diagnosed with metastatic tumors to both my liver and my lungs. That's a Stage 4B. My local cancer center said I wouldn't ever be a candidate for surgery despite having a very good response to chemo. I got a second opinion at MSKCC and they not only said I was a good candidate, but they wanted to do surgery immediately! :D So a few weeks later I had my primary tumor removed and my liver resected (tumors in all lobes of the liver, by the way). Three months later I had another surgery and they removed a tumor from each lung (double-lung surgery) and reversed my ileostomy. I had one more lung tumor removed about a year later and have been NED since then.

The lesson here is to be your own advocate. Look for second or third opinions. Stay strong and stay aggressive about treatment options!
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

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

whittling away at inoperable

Postby rp1954 » Wed Aug 16, 2017 4:35 pm

For you, the degree of dissemination might be most important if a large load in a few spots could be removed over two surgeries with small residual cancer to be mopped up. If your cancer is confined to liver and bowel, there could be a multimodal approach with high class surgical talents, even ALPPS or HAI. From my point of view, if more than 2 sites, what is key is the maintenance of no metastasis between surgeries and knocking off some of the mets outside of surgery. The question of maintenance between surgeries would be whether anyone would extend ADAPT with other items for you, mostly high dose nutrients for better cancer control and less side effects. For the things you've mentioned, we also checked CA19-9, AFP, LDH, ALP, quantitative d-dimer for the mets or load, MCV for the chemo activity (its initially slow) and ESR, hsCRP and PT/INR. In our case, the drs were chemo prescriber and initial support, where we expanded substansive integrative adjuncts ourselves with other physicians asap.

In retrospect, there were a lot reasons for my wife to be inoperable, at diagnosis and a year later.

First she had cancer grown into the omentum (peritoneum) and the CT had scanned a 1 inch+ para-aortic lymph node cluster at diagnosis but there were some uncertainities(?). Also some liver objects were classed then as cysts and 3 lung thingies that might be something else. A lot of things were not well communicated to us or misdiagnosed but she had a trump card for her 1st surgery then - she was obstructing at 95%+ closure and the surgeons could take first shot.

She took a lot of natural immune boosters, cimetidine and approximated a natural formula FDA registered as an orphan drug, as a salvage therapy for recurrent cancers, all before initial surgery. This neo adjuvant treatment appears to have destroyed a lot of cancer tissues before surgery. So much destruction that it messed up her formal staging under the AJCC 6th edition, in her surgeon's eyes. (7th edition was just coming out later in 2010) The surgeon was formally not crediting the para-aortic nodes were cancerous because the peritoneal stuff couldn't be recognized cellularly any more after 4 weeks of off label treatments. The peritoneal stuff was too necrosed at 4 weeks treatment to be pathologically recognizable cellularly - in essence wiped out, although still macroscopically readily visible and swarmed with granulocytes (very unusual, "rare").

Later scans at 1-2 years would show the lung and liver objects to be immunochemo reactive, and the para-aortic cluster was 6 cm long at 2nd surgery a year later, after being read as 3.2-3.5 cm long several weeks earlier on partially effective chemo.

We avoided and hurdled several inoperability traps.
1. We implemented pre-op cimetidine at high dosage, along with several immune boosting and cancer toxicity strategies.
2. We found mild adjuncts that could be used every day without trashing organ function or blood results, rather her blood sugar and cholesterol improved dramatically. Her her bloodwork stayed readable and we stablized her platelets, WBC and Hgb while on chemo.
3. We used immune treatment and 5FU right up to surgery itself. None of this 3 weeks off for chemo only or 6 weeks off with Avastin, before and after. (with liver operations, 5FU would probably need more time off than 12 hours before surgery but this is in part responsive to wound healing nutrition)
4. We got second opinions on radiology and surgery. "Our" radiologist said the para-aortic nodes were not involved with the aorta, which gave us two surgical teams, once the monkey was off their back. Our last surgical interviewee (top dr of top regional hospital) said he would cut and splice the aorta if necessary AND gave us conditions that supplements could be used before surgery. The surgeon also allowed high dose PO cimetidine to be used for the prophyllaxis of aspiration during surgery.
5. I found papers that showed resection benefits to the para-aortic node surgery for "isolated" mets/sites instead of futility. I projected that my wife wasn't actively metastatic while on daily treatment (scans, bloodwork) and remained mostly silent on any of their assumptions of only 1 met.
6. After several years, we've been able to reduce the supplement requirement for marker reduction somewhat with celecoxib, high graded supplements, and targeting via 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


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