My dad needs help managing his cancer!

July 2, 2007 2:20 PM

Dad has rectal cancer. How can we negotiate contradictory advice from his physicians?

My father has cancer in his rectum. One physician argues that the cancer is in its early stages, and since it is low in the rectum (6 centimeters up) the cancer can be excised with a laparoscope up the anus. Resectioning the colon, according to this guy, poses a substantial risk of leaving my dad with a colostomy bag. The second doctor argues that the cancer is 11 centimeters up, and contends that it is impossible to say definitively what stage the cancer is in without looking at the tissue. He wants dad to have major surgery, arguing that if he has the cancer removed via laparoscope they may not get it all. He says that the risk of a permanent colostomy bag is low. My dad is 68, and obese, but otherwise healthy and strong for his age. He and mom, are, however, rather unsophisticated and have difficulty understanding doctors. I can't help much since I live across the continent. Their insurance is crappy, but they do have some money saved so they could pay for a third opinion. Should they seek additional opinions? How can we tell whether either of these doctors are worth a shit? What advice can you give to help the greatest dad in the world sort out his options? Thanks.

posted by Crotalus to health & fitness (10 comments total)

a third opinion seems warranted. make sure they get documentation from both previous opinions to show to the newest doctor.
posted by thinkingwoman at 2:26 PM on July 2, 2007

Yes, get another opinion, preferably from a doctor affiliated with an NCI designated cancer center. Plus, do your own research. I guess this q is a start on that. Best of luck to your dad.
posted by caddis at 2:31 PM on July 2, 2007

Get another opinion. But don't ask either doctor for the referral. One of my specialists told me that specialists will just send you to someone who agrees with them...they tend to trust the opinions of like-minded doctors.

Also, pick a doctor from a major urban centre. My GIs told me that the best GIs are usually located in big cities. YMMV.
posted by acoutu at 3:01 PM on July 2, 2007

If they were in central Florida I'd try to recommend you to my father, but that is perhaps due to a personal attachment to my father as well. He is, however, an oncologist specializing in gastrointestinal cancer.

I would be curious about trying to figure out what information led to the conflicting diagnoses. Did they do the same tests and see different things? Did they do different tests? I don't know of the right ways to ask the doctors "How do you know?" but I would be trying to do that.
posted by that girl at 3:31 PM on July 2, 2007

Third the third opinion, and get it from the most experienced doc you can find (likely one associated with the premier hospital in the nearest *major* city).
posted by zippy at 6:19 PM on July 2, 2007

A 5cm difference seems rather large when it comes to where they each think the tumour is located.

Has he had a PET scan? Ask him if he's had to have an IV with radioactive glucose before his scan, if he's liable to confuse the various Big Honking Scanning Machines. If he hasn't, the third-option doctor should probably do one.

I'm not sure how it would work with insurance in (I presume) the USA, but you could help them look into participating in clinical trials and cancer research studies if he/they is/are interested. My uncle was involved in two during his radiation, chemo and surgical treatments for rectal cancer. The researchers were very helpful with keeping him and us all informed of what's going on, what needs to be done and why.
posted by CKmtl at 6:45 PM on July 2, 2007

This is a hard situation because unfortunately it doesn't seem like even the doctors know for sure. A third opinion sounds like a great idea but if that doesn't clarify things enough, think of it this way. Either option comes with a potential bad consequence: resection risks the colostomy bag; laproscopy risks missing some cancer - and colorectal cancer is a rapid, deadly one. If either one of these options is completely 100% unacceptable, then that should make the decision pretty clear.

Also, as someone with some medical training (student pharmacist) who spends a fair amount of time in doctor's offices (2 kids, routine pediatric stuff) I am shocked at how good my instincts are. I know enough now to recognize when a doctor makes a mistake. It turns out that the people that I feel comfortable with on a gut level are the same ones my rational mind likes, too. I just wish I had known this years ago. I don't think there's anything wrong with your parents asking themselves which doctor they like better. If they just don't have a good feeling about one of the doctors, that's an important piece of information. Your subconscious mind knows a lot more than it gets credit for.
posted by selfmedicating at 7:15 PM on July 2, 2007

Oh, and check out clinicaltrials.gov if you are interested in finding a research trial. Someone I know with a rare condition found a specialist this way who has given him a lot of good information.
posted by selfmedicating at 7:19 PM on July 2, 2007

My dad was just released from the hospital after his second operation to remove a section of his colon due to cancerous polyps. It seems to be (IANAD) that CKmtl is exactly right, 5 centimeters is a huge difference of opinion. I'd get the docs to explain this, and if your parents don't feel comfortable with one of the versions (a la selfmedicating's advice on going with your instincts), then by all means, get a third opinion. Bear in mind that surgeons are going to have a more...er...radical view of what should be done.

Anyway, I'm not familiar with resectioning the colon for rectal cancer, but my dad had 18 inches removed the first time, and 12 inches the second. No colostomy bag needed, though we were made aware that it was a risk factor if any surgery complications arose.

My email is in my profile, if there's anything else I can do, please let me know.
posted by Liosliath at 8:48 PM on July 2, 2007

My 72-year-old mom had a laparoscopic lower anterior resection of her colon last year. Five inches of her colon were removed (which is not a lot -- the growth was pretty small.) She's absolutely fine.

When small polyps are discovered through colonoscopy, they are often removed at that time, with no follow-up needed other than regular colonoscopies. (Early polyps are often shaped just like little mushrooms -- they get snipped off at the "stem.")

If the polyp is shaped more like a lump, hugging the wall of the colon, it can't be snipped. Surgeons play it safe and remove a section of the colon, including little lymph nodes that serve that part of the colon. When possible, this surgery is often performed laparoscopically, which makes for much easier recovery. The whole tissue sample is analyzed by a pathologist, who determines whether the cancer did invade the wall of the colon, and whether cancer cells were present in the lymph nodes. At this point, the cancer is formally staged and decisions made about additional treatment, if necessary.

As Liosliath said, colostomy is a risk in case of complications, but the chances of needing a permanent colostomy bag are relatively low.

How did each doctor come to their conclusions regarding the location of the tumor? (My first paranoid worry would be that they each are looking at a different polyp, though that's just mad speculating on my part.) I would also clarify whether the second doctor intends to do the resection laparascopically, and if not, why.

One thing that I did with my parents was obtain their consent and their doctor's office for medical information to be released to me. The surgeon and his staff were really great to me, and my folks appreciated that they could go over what the doctor told them with me and I could help formulate questions that they should ask -- much easier when I could get the story from both them and the doctor, instead of just relying on their memory.

I think that your folks should make a appointment at the closest cancer center and yes, go through the whole colonoscopy shebang again. While resection of the colon is certainly a big deal to the person having part of their intestines removed, it is a very commonplace surgery, and if the cancer has not metastasized, it is often curative surgery. (And I do not use the word "cure" lightly.)

IANAD. However, I have an administrative position in the field of cancer research. My e-mail's in profile.
posted by desuetude at 8:12 AM on July 3, 2007