Low rectal tumor surgical options - LAR vs. APR

[weisssoccermom]

Rickker,
I know how deep a T3 has gone. If you read my post, the TAE would only be appropriate for a clincially staged T3 IF after neoadjuvant chemoradiation there was a very good response - meaning that the tumor had shrunk significantly to something pathologically a T1 or less. No, no nodes are taken although during the excision, some may be found in the excised specimen. This is also precisely why the follow up should include frequent rectal ultrasounds to check that cancer hasn't reappeared in the local pelvic nodes. Even with a T1 (clincially staged before neoadjuvant chemoradiation) there is no way to know if there is nodal involvment. Keep in mind that there are many many stage IIIA which mean that those people may have a T1 tumor and still have one or more nodes involved. My point is that even with a T1 tumor, depending on the individual's anatomy there could be nodal involvement. TAE surgery needs to be a decision made by the patient and if the patient is informed, is willing to be followed up meticulously and if his/her doctors are all on board with adjuvant treatment, then it's the right decision for that patient.

You know, not trying to be difficult here, but you could easily have any patient with no local nodal involvement that has nodal involvement somewhere else or even mets. Let's take a stage IIA patient who has surgery. The pathology report shows no local nodal involvement - but that doesn't mean that there's not cancer somewhere else in the body - maybe in a distant node, maybe in the lung or liver. It's not at all uncommon. My point is you just don't know which is why more oncs are routinely giving stage IIA patients adjuvant chemo - to be on the safe side.

It's up to each of us to decide what is right for us - with respect to surgery and/or treatment. Personally, I chose the excision after doing extensive research and making sure that all of my docs were 'on board' with the adjvuant plan. That was the right decision for me. You chose your surgical and/or adjuvant treatment options and again, those were right for you. We have to respect that each of us makes our own decisions based on many factors and for me, quality of life afterwards was a HUGE influencing factor. I'm also realistic enough to know that cancer follows no guidelines - follows no rules which is precisely why we are all watched like hawks. FYI - treatment plans change all the time based on new studies, new stats, etc. For example, more and more colorectal surgeons are changing their approaches to the timeframe after neoadjvuant chemoradiation before they do surgery based specifically on the newer studies showing a slightly longer wait time produces better shrinkage results. There have been and are right now clinical studies that are dealing with the issue of TAE after complete clinical or good response to neoadjuvant chemoradiation. My point is doctors have to be willing to change and they do as more and more studies come out proving the efficacy of one treatment or another.

You are quite right that TAE is not good for a T3 tumor - but that doesn't mean it isn't necessarily a viable option for a T3 tumor that has been downgraded to a T0 or a T1 after neoadjuvant chemoradiation. The trick is to figure out who is a good candidate and who isn't for this type of surgery. The small studies available have shown that those patients who DO respond quite well to neoadjvuant chemoradiation and who have follow up chemo do do quite well (provided of course they are followed up with the normal testing, etc.). I can only speak for my surgeon who was very insistent that based on the pathology report, we would decide what the next step was. In other words, if that path report came back with a tumor that was anything more than a T1 - it was an automatic LAR for me - something I agreed to. In my case, there were no cancer cells left but had that path report showed a T2 or higher, yes, I would have had the LAR.

It's not as cut and dry as saying that all clinically staged T3 tumors are not candidates for this type of surgery. The key is the response to the chemoradiation.

Jaynee

[PGLGreg]

... TAE surgery needs to be a decision made by the patient ...
It's up to each of us to decide what is right for us - ...

I very often see such things said, and it seems very odd to me. Our doctors can best estimate the odds for a given therapy. If they just discuss matters with us, then stand back and say now the decision is yours, and if something bad happens, that's your fault and not my responsibility, well, that's a cop out.

[weisssoccermom]

I'm not sure why that's a cop out. Patients all the time discuss a treatment plan with their doctors - whether it be for cancer treatment or not - and then make their own decisions. It really is up to us, the patient to decide what we do or don't want to undertake with respect to a treatment. Sure, a doctor can give us his/her opinion, and not take into consideration all the factors that we might...for example, quality of life, expense, side effects, etc. I guess I'm confused - are you saying it shouldn't be up to the patient to decide which treatment he/she wants or doesn't want???

Too often I have seen doctors (again in all circumstances) set in their ways. Recently someone on this board was giving her advice to a newbie about finding a colorectal surgeon. The comment was made that oftentimes a younger doctor is less rigid, set in his/her ways, than an older doctor and more open to suggestions. I found that remark to be, much of the time extremely correct. For most illnesses/ailments there is, I believe, the typical 'standard of care' which is fine but isn't necessarily the best option for everyone. In my case, I repeatedly heard that I wasn't following the 'standard of care' yet my doctors allowed me to make my own choices. I have a ton of respect for my oncologist because he knew that there were certain things I didn't want, knew what I was trying to accomplish and thought 'outside of the box' and went to bat for me and for my decisions. My surgeon talked with me about the potential risks of the excision but was also very interested in and willing to read the studies (which I brought with me) on the statistics of the excision surgery after a complete clinical response and agreed that I fit into that 'category' of patients perfectly.

Look how many patients are continually told by their oncs/surgeons, etc. that they should just continue with chemo and yet they seek out another doctor who tells them something totally different and they end up having a treatment that would have never been offered to them had they stayed with that original doctor. I'm sorry, I don't get your point. I realize that these doctors are intelligent, that they have an education and that they truly do want what is best for us, but, in the end, this is about each of us as an individual and each of us must make the choices that we want with respect to our treatment.

[PGLGreg]

I guess I'm confused - are you saying it shouldn't be up to the patient to decide which treatment he/she wants or doesn't want???

We shouldn't have doctors strapping patients down for forced surgeries, rubbing hands and chuckling evilly. Can't have that sort of thing. No, I'm saying that doctors should recommend the best course, and in almost all cases, rational patients will follow that recommendation. There is no need for patients to be rational, though --- they should be free to screw themselves up as they choose. I just have some difficulty understanding why you would recommend that. Why should patients substitute their own inexpert judgments for those of their doctors? Doesn't make sense to me.

[CRguy]

You know my friends .... I am coming to this discussion very late in the game, just the usual disclaimer....
BUT...and if this means nothing to you, I'm, OK...BUT when my uncle took me up to the northern reaches of the civilized world, when I was but a youth.... he told me " Always look for a Bush Pilot with one leg and a lot of scars..."
I said WTF !!????
He said "they WALK AWAY from their crashes, and will on the next one too !"
OK trial by fire, and never had to test the bush pilots BUT....
EXPERIENCE is golden !

Do the docs say "yeah" ? gotta mean something , right ???
Do the docs say "NO" ? gotta mean something , right ???

Don't know all the inside info about YOUR situation, and neither does anyone else on this forum unless they ARE your doctor ... ???

BUT... if it comes down to patient versus doctor...who has the most experience ?????
If your doctor has less experience than you...find a new doctor.
If your doctor doesn't value your input as the patient he/she is "doctoring"...find a new doctor.

BUT..in the final analysis..your body, your life, your choice.

Follow your gut ???
Follow your docs ???

Been doing medical stuff for 30 + years. ALWAYS question my docs, and if I think they have my best interests foremost AND I am onboard with what they want to do to me ( my body)...then good to go.
If NOT...mileage may vary, but I would go for second or third opinion.... AND I have and will continue to do so.

Cheers
CRguy

[weisssoccermom]

Greg,
If all doctors are experts, then what do you do when one doctor has one opinion and a different doc has a different opinion - whether it be about a treatment plan, diagnosis, or surgery??? Who do you then say is the 'expert'??? Which doctor's opinion does the patient follow? The fact is, we, as patients, go to a doctor for their opinions, for their expertise but we ultimately have the right and the obligation to choose what we want to do or not to do.
There are many patients on this board who have gone to a surgeon or an onc, gotten an opionion and ultimately, something about that doctor/opinion just doesn't seem right so they seek out another and make the decision based on THEIR criteria, not the doctor's. Does that make the patient somewhat less rational?? Don't think so. The doctor follows the 'standard of care' - nothing wrong with that but.....does that same doctor take everything into consideration such as side effects or quality of life???

If a patient wants to 'screw themselves us as they choose' (your words) , then yes, they have that right. It doesn't mean that you have to agree with their choices or that in the same situation you would do it, but YES, any patient does have the right and should bear the responsibility to be a member of his/her health care decision making team. That's why most of us encourage people to seek out a second opinion.
I am the only one who knows me and what I can or can't do, what I can or can't feel comfortable with and ultimately what I want. I can and do listen to the doctor's and their opinions. I research the facts, I ask questions (and if they don't like it, tough and bye bye) and I assimilate all the facts and I also trust my gut instincts as to what I think is best. If it means that I walk away from a particular doctor, so be it.

A very good friend had a MIL dying of pancreatic cancer. The poor woman was old and miserable. Had given chemo a try for a little over a year. This woman didn't speak English very well and the onc was really pushing for another cycle or two of chemo....for what...to extend this poor woman's life a month or so....and at what expense. This woman's son is our vet, so having a medical background, he intervened and stopped the treatments. Does that make him an irrational person??? He went against the doctor's recommendation because his mom was dying and there was no ifs ands or buts about it. Do I think he made the right decision?? I wasn't there, didn't see his mom, but based on what my friend (his wife) told me, yes I do. Do I believe that the doctor was wrong??? You bet I do! One of the surgeons I had consulted (and who I liked and trusted) recommended that I go to Chicago for a particular type of surgery called the Kraske procedure. My gut told me NO and looking up the procedure, I found it wasn't utilized very often as it has a fairly high complication rate. Ok, so was I irrational for going against what my surgeon had said??? Don't think so.

Everyone has the choice to decide what type of patient they want to be. There are the 'just do whatever the doc says' type of patients, those that ask questions, listen but ultimately allow the doctor to decide and finally those who listen, ask questions, research and then make their own decisions based on their own criteria. There's no right or wrong to what type of patient an individual wants to be. Me, I want to be the type of patient who feels comfortable with my doctor and my decision and sometimes, the two just don't go together. So, I stand firm on the opinion that, question your doc, listen to what they have to say, talk to my gut and others and then if I'm good to go - fine but if I'm not, then I walk away. I'm sorry, I just don't believe that doctors are some sort of gods.

[PGLGreg]

He went against the doctor's recommendation because his mom was dying and there was no ifs ands or buts about it. Do I think he made the right decision?? I wasn't there, didn't see his mom, but based on what my friend (his wife) told me, yes I do. Do I believe that the doctor was wrong???

When I say that a patient's most rational course is to follow his/her doctor's recommendation, the unspoken premise is that the goal is get well, or at least to extend life. In the situation you describe where your friend wants his mother to die, I agree, he should not follow the advice of the physician, who is pledged to heal and not to kill.

[Surroundedbylove]

He went against the doctor's recommendation because his mom was dying and there was no ifs ands or buts about it. Do I think he made the right decision?? I wasn't there, didn't see his mom, but based on what my friend (his wife) told me, yes I do. Do I believe that the doctor was wrong???

When I say that a patient's most rational course is to follow his/her doctor's recommendation, the unspoken premise is that the goal is get well, or at least to extend life. In the situation you describe where your friend wants his mother to die, I agree, he should not follow the advice of the physician, who is pledged to heal and not to kill.

This seems very inflammatory - choosing not to continue treatment when treatment isn't working or may only make quality of life worse is not "killing" - this is getting off topic and too inflammatory.

[weisssoccermom]

I think everyone defines 'extending life' as something different or 'getting well' as something different as well. Again, quality of life comes into play. For me, going against the 'standard of care' has been the right decision and I might add, the best decision for me. I'm certainly not saying it's the right decision for everyone - just that it did fit and continues to fit into what I felt was right, what I wanted and what I needed. I honestly don't feel that it was the best 'rational' choice for me to follow one doctor's recommendation because for me, it wouldn't have been extending my life in the way that I wanted. Your supposition bases everything on the fact that all patients want what the doctor has decided is the 'correct' extended lifestyle. The goal may very well be to 'get well' but at what cost????? Does 'getting well' mean that, for example, a patient should undergo a treatment that leaves him/her with an altered quality of life that maybe the patient doesn't want?? I certainly can't tell you or anyone else how much you can handle and neither can a doctor tell me or anyone else how much I can handle. What if that same doctor was the patient??? Could he/her or more importantly would he/her (the doctor) undergo the same treatment that he/she is recommending to a patient?? I have no idea...but the point is....each of us has to do what we feel is best for ourselves and not just because a doctor recommends it.

The whole 'recent' discussion on this topic began because dscheffler posted that he had decided to have a particular surgical procedure done...and in his case, it was based on his doctor's recommendation. Yes, he had seen more than one doc but his 'gut' feeling, his research, his whatever had led him to pick a certain course of action. According to your theory, that makes him rational....because he is following his doctor's recommendation. Ok, so he has had two other recommendations.....both different from each other and both different from his current doc's recommendation. In other words, three docs - three different opinions..so what does he do???? He goes with what HE feels is best for him in HIS situaiton. Rickker made a comment that this particular decision wasn't a good one...based on what HIS surgeon said and nothing else. None of us are in dscheffler's shoes. It's his choice and he (dscheffler -sorry if I am misspelling it) has every right to do what he wants and none of us have the right to tell him that it's not the best decision for him. It's HIS life to live, not the doctor's and certainly not ours. You chose a course of action that was right for you and that's great. I chose a course of treatment that was right for me and that's also equally great. If there are people unwilling to take chances....and that includes doctors as well....then we will never have any new treatments, any new choices, or any new options.

I am a FIRM believer that every person should be proactive in his/her own life and particularly in your own health care. Be informed, ask questions, get opinions, talk to other people and find out their experiences...whether it be in the medical arena or anywhere else. I don't just blindly assume that because a 'professional' tells me something it is necessarily the 'gospel' truth or that it's the best 'answer' for me in my situation. Without patients and physicians who are willing to think 'outside the box'....who are willing to take what some might term as 'risks'....without these how would we know what other solutions might be out there for someone in maybe ours or the next generation????? Cancer certainly isn't a 'one size fits all' disease and frankly, neither are the treatments/options available to us.

After I hit the 'submit' button, I saw SBL's post and yes, she's right. This is getting off topic and again, the ONLY reason I am submitting this particular post is to again repeat that this is the original posters decision and not ours. Just because any one of us does something slightly different or radically different from a particular doctor's recommendation doesn't make us irrational. I would also like to add that my friend didn't 'want his mother to die' and frankly, I take offense at that statement. What he wanted was his mother to stop suffering and to have what remaining time she had left to be spent with as much dignity and peace as possible and as SBL indicated, the doctor is not killing her....he was only doing what he thought was best.

[eitter]

OkOk....this is it I am locking the topic vs deleting.

Oddly enough I was not paying attention to this post when I posted my NewBie Welcome, but I think we all should go read what I posted.

I am sure people thought that my choice NOT to do Postsurigical Chemo at Stage III was irrational but it was MY CHOICE and I have made that clear each time I told my story. We call all tell our stories and if anyone likes what they hear then go back to your doctor and see if my plan would work for them.

To the newbies reading this post....this happens every once inawhile where we have some disagreements and tempers rise and things get said. Sometimes posts like this get deleted but I think there is to much good information beyond the bickering that started so I am leaving the post for you to read. And again everyone has their own opinions and we each have our own treatment plan that may not work for you or the next person. Some of our doctors are very progressive and will help us through some alternative procedures and some of our doctors are VERY conservative and go by the book and some like mine support MY decision even though they disagree with it.

And please everyone lets each respect each other!