Just got post-surgery results and they aren't good

[mpbser]

Thanks everyone...

In yesterday's tumult (husband is rather overwhelmed with the findings), I misread the following passage I had copied and pasted a month ago from one of the thread's comments:

Xeloda (oral) is just as effective as 5-FU (IV). In fact, some studies seem to imply the oral is more effective because it turns into 5-FU directly in the liver and passing into the colon, rather than having to travel through the entire body via the bloodstream first. If you search for the previous posts that compare the two, they should have links to these studies.

I read 5-FU as "folfox" when skimming it.

I'm still not convinced about Xelox/Capox. One point difference in the factors of "evidence quality" and "affordability" might provide a scintilla of data that Xelox/Capox is "stronger" than Xeloda, but "stronger" to me does not translate into "better" for me. I will be reading those guidelines and looking for further information after the weekend as I have to work today and tomorrow and then am leaving to go out of town for the holiday.

Karen,

My husband has a large vertical incision in the middle of his belly about 6 inches or so long that crosses his navel. There are four one inch or so long other incisions at other places. My husband says that the surgeon said that (I must have missed this part) he "pulled out the intestine" so we assume that that is how he accessed it to palpate it. He is very dubious that the surgeon was as thorough about "feeling the whole thing, squeezing it to feel for abnormalities." I suggested to husband that maybe these tumors are very soft so difficult to feel and that might explain why a tumor that looks near completely obstructive can have stool pass by it. He wants me to explore whether we have a viable malpractice claim, but I said that we first should wait until we find out if anything could have been done then and there during the surgery.

Have a good weekend.

- Christine

[MissMolly]

Christine:'
The 6 inch incision explains how the surgeon was able to access the intestines with his hands for tactile palpating. An incision of this length is not typical for laparoscopic surgery and may have been necessitated by the size of the tumor needing to be removed.

You are an attorney so I will not add much to a legal question of malpractice. But my professional opinion as a former health care consultant would be that you have no/low legal standing for a case of malpractice that the additional tumors were not found during surgery. There is no case for negligence of care.

The point is that intestines do not like to be touched or manipulat or manhandled in and of themselves. The intestines are very sensitive to physical trauma - especially surgical manipulation. Paralytic ileus is a frequent intestinal response to a surgical approach that overly handles the intestines. The intestines basically "shut down" and motility ceases due to overt handling.

All to say: Surgeon's are hesitant to overly handle the intestines due to concern of triggering paralytic ileus, which can be a serious and protracted outcome. Your surgeon would not have had the duty to palpate every inch of intestine to feel for abnormality, as doing so may have caused harm in triggering ileus.

You are also correct that growths in the intestinal tract can be soft and small and not amenable to tactile discovery by external palpating.

The small intestine is roughly 20 feet in length. The large intestine roughly 5-6 feet. With individual variations of redundancy of colon and loops and turns and twists. It is not reasonable to think that a surgeon could detect unbeknownst tumors or growths.

At least now your husband has had a colonoscopy of the full length of his large intestine. Full colonoscopy viewing was not feasible at the initial colonoscopy where the initial tumor was found. Now your husband has a full report of the findings and, while discouraging that there are further growths and polyps, you both now have full knowledge and information of his intestinal tract. Move forward and work with his medical team to address reclaiming his health. i see no basis or claim for egregious malpractice.

I have learned in my own jouney will frail health that health care is rarely perfect in its delivery.
- Karen -

[Maggie Nell]

Well, having worked in the medico-legal field myself, becoming a vexatious litigant is not a smart move. Ever.

[LeonW]

I'm still not convinced about Xelox/Capox. One point difference in the factors of "evidence quality" and "affordability" might provide a scintilla of data that Xelox/Capox is "stronger" than Xeloda, but "stronger" to me does not translate into "better" for me.

I didn't say that Xelox/Capox is "stronger" than Xeloda. I said that the NCCN considers the Quality of Evidence that it works is stronger for Capox then for Capecitabine.
Why would better evidence that it actually works, not be better for you / your DH ?

Also note that these NCCN 1-5 ratings are ordinals, not numerical values. Applying math to them doesn't make sense. The only difference between the meanings of ratings 2 and 3, is that 3 is better than 2. Nothing more / nothing less. 3 is not 50% better than 2; neither is '3' one point better than '2' - just 'better' on an ordinal scale

When diagnosed back in 2012 with nearly full obstruction and unresectable liver mets, the experts in my team jointly preferred to fight the disease aggressively, despite the fact that my file had 'Palliative' on the cover. That meant full blown going for Capox (and Avastin). Looking back I'm grateful they didn't skimp on being aggressive. My Capox with Avastin (trial with N=1) proved 100% effective - see my signature.

L

[mpbser]

I just popped in at lunch time. Leon, this is what you said verbatim: "Hence: Evidence that CapOx works is stronger (Quality of Evidence) than Xeloda"

SO, yes, you did say that I didn't say that Xelox/Capox is "stronger" than Xeloda.

I really don't have time for this so just please don't respond. Wait until after this weekend.

P.S. You called my husband childish in my other ongoing thread -- well maybe most people act vulnerable and "childish" when they are first diagnosed with cancer. Maybe those who recently almost died from congestive heart failure a month beforehand due to complications from the cancer were more vulnerable than they had ever been in their lives, which is where my husband was at that time. Those people who reacted to him absolutely did not care and did not show the "support" that the purpose of this site says this place is for.

[Lee]

P.S. You called my husband childish in my other ongoing thread -- well maybe most people act vulnerable and "childish" when they are first diagnosed with cancer. Maybe those who recently almost died from congestive heart failure a month beforehand due to complications from the cancer were more vulnerable than they had ever been in their lives, which is where my husband was at that time. Those people who reacted to him absolutely did not care and did not show the "support" that the purpose of this site says this place is for.

I, Lee, referred to your DH as being childish in that other ongoing thread. LeonW is someone else. Butt we do tend to think alike at times .

Lee

[Maggie Nell]

The aftermath of congestive heart failure can often produce psychotic symptoms and there
is no way that this forum can be a substitute for the level of psychiatric support and
management that is needed while the cardiovascular system restores homeostasis. And
that is without a comorbidity of colorectal cancer adding to the strain.

[stu]

You know if it was me I would close this down for a bit. Spend precious time with your husband and take each day as it comes. What's to be gained and you have a lot to get your head round with his diagnosis and other health problems. This seems to me to be circling and without benefit . I have found over the years a supportive role has a lot of factors to meet and you want to put your energy into that and not to have conversations swirling in your head that detract from that process.
I wish you both every success in getting a treatment plan together. My mum had Xeloda and it required a bit of management but worked well. Jump into the plan , embrace it and May it work really well .
Stu

[mpbser]

Thanks, Stu. After a very productive day working today, I think that is wonderful advice. I have enough information at my fingertips at this point that I won't be engaging in as much dialogue here for a bit... e.g. won't bother getting back to what Leon wrote - will use the info but I don't really have any response except to say I appreciate the input.

Maggie, I am a consummate litigant. LOL. It's my profession, so I ought to be. That being said, I won't be pursuing any claims against husband's medical caregivers until they are no longer his caregivers. He was just very angry at the tumor and large polyps being missed and was lashing out. Regarding his mental state and CHF, I appreciate the input. The connection between CHF and mental issues doesn't surprise me and explains a LOT.

Cheers!

- Christine

[LeonW]

. . . this is what you said verbatim: "Hence: Evidence that CapOx works is stronger (Quality of Evidence) than Xeloda"
SO, yes, you did say that I didn't say that Xelox/Capox is "stronger" than Xeloda.

? ? ? What exactly did I say that you did not say ? ? I've no idea what this sentence is supposed to mean.

P.S. You called my husband childish in my other ongoing thread

Did I? Where ?

Those people who reacted to him absolutely did not care and did not show the "support" that the purpose of this site says this place is for.

Sorry, but I disagree. I've followed your and your husbands discussions from day-1 and seen that both of you have been met with the same empathy as other newbies that found their way to this club. What makes things so difficult in the mpbser exchanges, is that after a while such well intended comments get challenged, as if they are inspired by some hidden agenda. As if the contributors need to defend what they learned in dealing with our common disease if that doesn't agree with the way you wish/need/want to look at it.

I understand that you are worried. Please try to absorb the advice and idea that is being offered so generously.

Leon

[mpbser]

Hi Leon,

I apologize if there was any misunderstanding... I was in a rush to get to some work for a client when I wrote that. I just posted a long comment in my other ongoing thread and I'm trying really hard to take Stu's advice and shut this page down for a little while. My husband should be home from work soon, so now is a good time as any.

Have a great weekend!

Christine

[menreeq]

This thread has become somewhat emotionally charged, but I hoped to provide some insight as a physician. I am a Radiologist. But I have seen my share of colonoscopies and lap colectomies during training. And I read cross sectional imaging exams on a regular basis. Nothing I say here should be taken as medical advice, but perhaps it will round out the information you have. Also, I have just been diagnosed, so your husband and I are going through this journey simultaneously. I look to this forum for advice on the non-medical, and I have found it helpful in the harrowing last 3-4 weeks.

Colonoscopy
It is not uncommon to do limited colonoscopies in partially obstructing or obstructing tumors. Even if they can get the scope past the proximal edge of the tumor that they first see, it can be very difficult to maneuver the scope beyond that point. I recall this from my training, but also from watching my second colonoscopy and endoscopic ultrasound on the monitor (I declined sedation that time). It can be fairly painful as they insufflate and bend the scope. So, it is standard of care to do a limited scope at first, get the biopsy you need, get measurements that will help with surgical planning, maybe put some tattoos to help guide the surgeon (usually these are placed a little bit distal to the distal edge of the tumor so the surgeon can know how much colon/rectum to take out). After surgical resection, they go back and make sure there aren't other tumors. I am sorry that they found others.

Laparoscopic Colectomy
Most of the time, tumors are not visible to the surgeon during the lap colectomy. The tumor would have to be fairly locally invasive for them to see it invading the pericolic fat and adjacent organs. These resections are done "en bloc," meaning they take out the segment of colon, the fat surrounding it and any lymph nodes and vessels in it. The surgeries are planned based on the information they are able to gather beforehand, especially from colonoscopy. They will see the tattoos the GI doctor left, and plan distal margin accordingly. Some cancer types are harder than others. I would think that most are not, since they are able to take out a fairly large block of tissue through a linear incision that is usually 5-6 cm (they make it longer if they have to). The tissue has to collapse down to do this, and it can do that because the tumors are not hard. So, even though they palpate the colon, they won't feel most of them. They just do that on the off chance that they do feel something and can do something about it at the time of surgery. Surgeons *are* able to palpate the mobilized portion of colon during laparoscopic surgery. They take the cut end of the colon out through the extraction site (the longest incision), and are thus able to palpate it when it's outside the body (but still connected proximally to the rest of the colon). They cannot palpate the rest of your colon though -- just the distal part that has been mobilized (fat and peritoneum cut so it's not stuck to the back of the abdominal cavity anymore). This means the splenic flexure, transverse colon, and ascending colon are usually not evaluated.

Chemotherapy
I didn't read the discussion carefully enough to know where the confusion stemmed from. But, as someone already mentioned, I think you may find it useful to go the NCCN website and download their guidelines. It will let you know where the current evidence is. The data does change fairly quickly, but the NCCN tries to update their site multiple times a year. It can be reassuring to know that your husband's treatment is following evidence-based guidelines. From my understanding, Xeloda monotherapy *is* considered inferior to combination chemotherapy for metastatic disease. This is not true for Stage II. So you also have to know what subgroup of patients they are talking about. As to XELOX vs CAPEOX vs FOLFOX, I have not done my own research, but it is my understanding that the choice of which combination chemo your Onc recommends is based on things like side effect profiles, personal experience (the Onc's experience with those chemo cocktails), and other patient factors. If there was one cocktail that was shown to be more effective (increasing disease free survival or overall survival) than all the others, everyone would be on that protocol. On the NCCN guidelines, you will see that they mention multiple options for combination chemotherapy (and then there are multiple footnotes!).

Financial Gain
I am biased as to this topic. I am a physician. I know lots of physicians, the overwhelming majority of whom do their jobs to help people and not try to make a profit. It is sad to me how the media portrays our profession. The few bad apples have definitely ruined the reputation of thousands of caring and giving docs. What I would say is that you and your husband do not seem to trust this Oncologist (and perhaps surgeon). I think that the lack of trust will create undue stress for you. You need to find a team that you trust so you can focus on the things you can do to improve your husband's outcome, rather than double checking someone's "claims." If it's not a good fit, just move on. I'm sure this Oncologist will also be glad of it, because they are there to help, and if they're not helping you, they'd rather you be with someone who is. My husband and I have had the benefit of asking multiple medical colleagues for opinions, curbsides or official second opinions. We expect differences of opinion as to treatment strategies, and we find it helpful to hear the rationale behind each person's decisions. I think it is good to have an inquiring mind and to want to be fully informed. Just remember, everyone has the same goal -- and that's to get the best result for your husband as possible.

I wish you luck on this journey.

[JudeD59]

This thread has become somewhat emotionally charged, but I hoped to provide some insight as a physician. I am a Radiologist. But I have seen my share of colonoscopies and lap colectomies during training. And I read cross sectional imaging exams on a regular basis. Nothing I say here should be taken as medical advice, but perhaps it will round out the information you have. Also, I have just been diagnosed, so your husband and I are going through this journey simultaneously. I look to this forum for advice on the non-medical, and I have found it helpful in the harrowing last 3-4 weeks.

Colonoscopy
It is not uncommon to do limited colonoscopies in partially obstructing or obstructing tumors. Even if they can get the scope past the proximal edge of the tumor that they first see, it can be very difficult to maneuver the scope beyond that point. I recall this from my training, but also from watching my second colonoscopy and endoscopic ultrasound on the monitor (I declined sedation that time). It can be fairly painful as they insufflate and bend the scope. So, it is standard of care to do a limited scope at first, get the biopsy you need, get measurements that will help with surgical planning, maybe put some tattoos to help guide the surgeon (usually these are placed a little bit distal to the distal edge of the tumor so the surgeon can know how much colon/rectum to take out). After surgical resection, they go back and make sure there aren't other tumors. I am sorry that they found others.

Laparoscopic Colectomy
Most of the time, tumors are not visible to the surgeon during the lap colectomy. The tumor would have to be fairly locally invasive for them to see it invading the pericolic fat and adjacent organs. These resections are done "en bloc," meaning they take out the segment of colon, the fat surrounding it and any lymph nodes and vessels in it. The surgeries are planned based on the information they are able to gather beforehand, especially from colonoscopy. They will see the tattoos the GI doctor left, and plan distal margin accordingly. Some cancer types are harder than others. I would think that most are not, since they are able to take out a fairly large block of tissue through a linear incision that is usually 5-6 cm (they make it longer if they have to). The tissue has to collapse down to do this, and it can do that because the tumors are not hard. So, even though they palpate the colon, they won't feel most of them. They just do that on the off chance that they do feel something and can do something about it at the time of surgery. Surgeons *are* able to palpate the mobilized portion of colon during laparoscopic surgery. They take the cut end of the colon out through the extraction site (the longest incision), and are thus able to palpate it when it's outside the body (but still connected proximally to the rest of the colon). They cannot palpate the rest of your colon though -- just the distal part that has been mobilized (fat and peritoneum cut so it's not stuck to the back of the abdominal cavity anymore). This means the splenic flexure, transverse colon, and ascending colon are usually not evaluated.

Chemotherapy
I didn't read the discussion carefully enough to know where the confusion stemmed from. But, as someone already mentioned, I think you may find it useful to go the NCCN website and download their guidelines. It will let you know where the current evidence is. The data does change fairly quickly, but the NCCN tries to update their site multiple times a year. It can be reassuring to know that your husband's treatment is following evidence-based guidelines. From my understanding, Xeloda monotherapy *is* considered inferior to combination chemotherapy for metastatic disease. This is not true for Stage II. So you also have to know what subgroup of patients they are talking about. As to XELOX vs CAPEOX vs FOLFOX, I have not done my own research, but it is my understanding that the choice of which combination chemo your Onc recommends is based on things like side effect profiles, personal experience (the Onc's experience with those chemo cocktails), and other patient factors. If there was one cocktail that was shown to be more effective (increasing disease free survival or overall survival) than all the others, everyone would be on that protocol. On the NCCN guidelines, you will see that they mention multiple options for combination chemotherapy (and then there are multiple footnotes!).

Financial Gain
I am biased as to this topic. I am a physician. I know lots of physicians, the overwhelming majority of whom do their jobs to help people and not try to make a profit. It is sad to me how the media portrays our profession. The few bad apples have definitely ruined the reputation of thousands of caring and giving docs. What I would say is that you and your husband do not seem to trust this Oncologist (and perhaps surgeon). I think that the lack of trust will create undue stress for you. You need to find a team that you trust so you can focus on the things you can do to improve your husband's outcome, rather than double checking someone's "claims." If it's not a good fit, just move on. I'm sure this Oncologist will also be glad of it, because they are there to help, and if they're not helping you, they'd rather you be with someone who is. My husband and I have had the benefit of asking multiple medical colleagues for opinions, curbsides or official second opinions. We expect differences of opinion as to treatment strategies, and we find it helpful to hear the rationale behind each person's decisions. I think it is good to have an inquiring mind and to want to be fully informed. Just remember, everyone has the same goal -- and that's to get the best result for your husband as possible.

I wish you luck on this journey.

What a wonderful post, chockfull of helpful information! Thank you for taking the time and I hope to get to know you better through this board as you continue on your own journey.

Judy

[MissMolly]

Meenreeg:
What an amazingly informative, insightful, thorough, and empathetic post and contribution. I look forward to reading and hearing more from you. You will be a genuine asset to this forum.
- Karen -

[mpbser]

Thanks for the comments, everyone. I hope to set back to the NCCN guidelines and this discussion but I have been sidetracked by the pathology results from colonoscopy #2 and the abdominal MRI. I will be posting an update in my PET scan results ..more cancer? thread.