Father Just Diagnosed With Rectal Cancer

[Crow23]

My Father (age 63) was diagnosed with Rectal cancer two weeks ago. He has already had a colonoscopy, a biopsy and a MRI done. He did not want me to attend any of these procedures
with him, preferring only that my mother be there. Some kind of Pride thing I guess. After asking them some basic questions, it is clear that my parents are in way over their head. The only
information that I could get out of him is that the tumor is in his upper rectum, It's 90% blocking and It is a low grade tumor. A nurse practitioner called him earlier this week and said
the surgery, which was planned for the 28th of this month, is now off. After reviewing the results of his MRI they now want to do radiation and chemo first to shrink the tumor (This Doesn't Sound Good To Me). I'm A little confused about why she didn't tell him what stage he appears to be? She also said nothing about lymph nodes for whatever that's worth. His next appointment is Monday the 26th and I will not be missing it. I'm Guessing that is when we will learn what stage he is. From what I've read having radiation done early in the process can eliminate you from certain Trials, and from being able to get the Hepatic Arterial Infusion Pump in case of stage 4 liver mets. Also, why wasn't a CT scan done? Seems like doing both CT and MIR scans would be better than just doing one of them. We Live in Centre, Alabama, but the doctors he is seeing are in Rome, Georgia. I personally think he would be better off seeking treatment in Birmingham Alabama at a major hospital, but I will know more Monday after I speak with his doctor. I plan on getting a copy of his pathology report also. Any advice would be greatly appreciated.

J.M.

[weisssoccermom]

Hello and welcome to our board.
First of all....take a breath and try to relax. I understand that you want to be involved, however, unless your father is incapable of making his own decisions, the doctors may very well not speak to you without his permission. I could be over analyzing your response...but my first piece of advice to you is to allow your mom/dad to be the decision makers (after all, 63 is not old) and you be the support person.

Rectal cancer is treated very differently from most other cancers, and from what you have said, the doctors are proceeding correctly. USUALLY, with rectal cancer, unless there is an emergent reason not to.....chemo and radiation IS done first in order to (a) shrink the tumor which tends to allow for a better surgery and (b) to 'sterilize' the local nodal field. Chemoradiation is generally NOT done with colon cancer as the colon is not fixed and it would be difficult, if not impossible, to radiate the correct area. The rectum, however, IS fixed and therefore, is much easier to radiate. So, from that perspective, yes, the plan to first do chemoradiation is on track.

Rectal cancer cannot definitively be staged without some more tests. While an MRI/CT can show some nodal fields, doctors like to either do a special MRI (rectal MRI ) or a rectal ultrasound (rectal EUS) to be able to better see the nodes around the rectum. Staging for cancers is done utilizing the TNM method.

In rectal cancer....the "T" stands for the tumor DEPTH....not the size....of the tumor. The doctors need to know how far down the tumor has extended into the rectal wall and/or possibly into the rectal fat surrounding the wall. That cannot be seen with an MRI/CT scan. The EUS will help them determine that information. Remember that the colonoscopy only shows the surface of the tumor.....not how far down it has extended into the rectal wall. What might appear to be a small tumor (via colonoscopy) could in fact be small on the surface that is readily seen by the scope but it could have extended quite far into the rectal wall AND the opposite is true as well. The "N" stands for number of LOCAL nodes involved. Until a patient has surgery, there is no 100% way of knowing how many nodes are/aren't affected. Let me clarify somewhat. Yes, it is possible to see what appear to be suspicious nodes via a CT/MRI in most regions of the body and with some clarity in the pelvic area surrounding the rectum. IF the doctor had seen DISTANT lymph nodes......he/she would likely have told him that. It is the doctor's preference as to what test....either the CT or the MRI to have done. Honestly, it sounds as though all the right testing has been done so far. The 'M" indicates mets and or DISTANT nodes. Without ALL of these pieces, your father can't be staged and the EUS or rectal MRI has to be done first.

So, first thing...just because surgery was called off....don't assume it is a bad thing. Honestly, with rectal cancer it is a GOOD thing because it means that by treating it with the proper treatments FIRST (in this case, neoadjuvant chemoradiation) the doctors are following a proven protocol. I personally believe that you are jumping the gun worrying about radiation and other clinical trials. Rectal radiation wouldn't likely negate someone from the HAI pump....they are in two different areas of the body ....and I'm sure you would be able to find people on this board who have done both.

Honestly, it sounds like the doctor is being VERY cautious and following all the steps to ensure that your father is getting the best care. I WOULD suggest, however, that your father seek the care of a board certified colorectal surgeon. Many doctors can and do perform surgery for rectal cancer, however, because the pelvic area is small and not as easily accessible as say the abdominal area, IMO, it is better to seek the care of a board certified colorectal surgeon. Remember that all surgeons are board certified in GENERAL surgery....but that doesn't necessarily mean that he/she has taken all the necessary steps to be certified in colon and rectal surgery. Here is a link to verify the surgeon. http://www.abcrs.org/verify-a-physician-2/. Now, there may very well NOT be a specialist surgeon in the Rome area (I have no idea), HOWEVER, that doesn't mean that your father can't or shouldn't have his chemoradiation and see an oncologist from that area. Many people, myself included, have those parts of their treatment done locally and go elsewhere for their surgery. In my case, for example, I stayed with a local oncologist and had my chemoradiation done locally as well, but traveled up to Seattle (a little over an hour away) for my surgeon. I still see her (surgeon) for my 5 year scopes (I'm 13 years out) and initially for all of my followups. Remember that generally, after surgery, the patient does his/her long term follow up with the oncologist and not the surgeon. IMO, if your father likes and trusts the local oncologist (not sure who he has seen at this point), then he should stay locally for that and IF he wants to go somewhere else for surgery....do that. It's not at all uncommon.

Right now, your father and the doctors really don't know a lot and won't know until the next test is done that will give them all more clarification. Rectal cancer is staged differently than many cancers. After all the tests are done, the patient will get a CLINICAL staging and not a pathological staging (cTNM vs pTNM). The reason for this is simple. IF the patient has a neoadjuvant treatment (chemo, chemoradiation, radiation) done prior to the surgery, it is very possible that the tumor could have shrunk (both in depth and size) and/or nodes could be eliminated from the treatments, etc. so a TRUE pathological staging can't be determined with accuracy. That actually is a good thing. Think about it....if, for example, chemoradiation takes a (example) 6 cm tumor that has been ascertained to be a T3 (how deep the tumor has invaded the rectal wall) and shrinks it down to a (example again) 1 cm tumor that is now T1 (not nearly as deept) that is FANTASTIC. However, if a doctor ONLY looked at the results of tests AFTER the treatment, it wouldn't give the doctor a clear and accurate picture of the true staging of the patient. It gets confusing, I know.

What I am trying to say is this. So far, your dad's doctor has followed all the correct steps and while it is frustrating that with rectal cancer, things don't necessarily move quickly, you want the doctors to get all the facts before deciding what to do next. I might suggest that you ask the doctor if he/she is planning on running blood tests before your dad starts treatment and, in particular, having his CEA checked. That is a test which MAY give some insight into his tumor markers. Approximately half of all patients, however, have NORMAL CEA tests and definitively have cancer. Doing it as a baseline prior to any type of neoadjuvant treatment is appropriate. Don't be surprised, however, if his CEA comes back within normal limits. I had a large 4 X 6 cm tumor and my CEA was 0.5 ......depending on the specific test (there are two different ones), the normal range is 0 - 2.5 or 4 for a non smoker and higher for a smoker.

I would suggest that you have someone get a 3 ringed binder, complete with dividers. Start a section for: pathology reports, other reports (CT, MRI, ultrasound, Colonoscopy), blood work, etc. After each test, have your father request a copy of those reports. If your dad is ok with it, allow him to have your name with the doctors office so that you can also request a copy of those same reports. I would also suggest that if your dad has a good relationship with his GP that he has that doctor cc'd for all test results as well. That way, you can go to the GP and get a report that you may have missed. From my experience, having one doctor (GP) have everything in his/her file is ideal....less time to go around and seek information from hospitals, clinics, other docs, etc.

Right now, your dad sounds like he is getting good care. The next step, IMO, is to find him an oncologist that he likes/trusts. This doctor will be of utmost importance in the next years and will be the main doctor that your dad works with. Honestly, it isn't necessary to travel for chemo (oncologist) and/or radiation (radiation oncologist....not the same as a radiologist) and oftentimes it is just easier to have that treatment done locally. I got an opinion from Seattle Cancer Care Alliance (rated around 5th in the country) but the idea of traveling everyday over 1.5 hours in rush hour traffic to have my radiation wasn't attractive at all to me. Why would I? Unless your dad's case is something super unique....he can have his radiation done locally. It's easier all around (IMO). The same thing is true for his chemo. Oncologists follow the standard protocol and your father most likely will get the same treatment locally as he would if he traveled to a large medical center. Until you know his clinical staging and the specifics of his pathology report (what type, if any, negative factors he may have.....what's his tumor grade....well/moderately/poorly differentiated, signet or mucinous cell, etc.) you shouldn't assume that he MUST go to a major cancer center. I have personally know of people who are stage 1 or II that have gone to a major cancer center and have felt that the doctors there wants to OVER TREAT them.

Right now, let the doctors run all the tests....EUS/Rectal MRI, blood work and get a clinical staging done. Generally, radiation will be advised and that should be done next. Your dad should find an oncologist he likes/trusts, get recommendations for a surgeon and possibly even visit those surgeons (remember, second opinions are just fine) and then likely see the rad onc to get marked for radiation. The oncologist MAY recommend that your dad get a port placed right away or may not. Some oncologists prefer that a patient has a 24/7 pump during the 6 weeks of radiation.....others are fine with the oral form during radiation. I tried the pump but hated the 24/7 part and switched to the oral form. Others have done fine with the 24/7 pump. That, IMO, should be a choice that your dad, in conjunction with the onc, makes. It's hard enough (again, IMO) to be getting zapped everyday and for me, the constant reminder of the pump was just too much. The whole cancer journey takes so much control away from the patient that sometimes its just nice to avoid the constant reminders that you are sick....which in my case was that 24/7 pump.

Back to my beginning advice....relax, take a breath. Honestly, from what you have stated, your father is getting exactly the treatment and following all the protocol that he should be getting. Let the doctors get all the tests done and then see what everything shows.
Best of luck.

[Jacques]

Crow23 -

Here is an 88-page e-book that you could read to familiarize yourself with rectal cancer protocols. This booklet gives a good, balanced overview to start with and it has a brief Dictionary and Acronym list at the end to help with the technical terms. I would suggest that you have a look at some of the sections relevant to initial diagnosis and staging (e.g., Part 1 and Part 2 ) before your father's appointment with the doctor on the 26th. This may help you better understand the procedures that are involved in the diagnosis-staging-treatment sequence.

NCCN Guideline for Rectal Cancer Patients
https://www.nccn.org/patients/guidelines/rectal/index.html

Note: To access the e-book once the e-book has been loaded in your computer, click on the arrow-head on the far right to get started .

- - -

Also, you might want to read up on the NCI designated Comprehensive Cancer Center located in Birmingham so that you can speak with authority about the services that they offer there:

O'Neal Comprehensive Cancer Center at UAB Hospital, Birmingham
https://www.uabmedicine.org/patient-care/conditions/colon-cancer

[Crow23]

Thank you both for your replies, especially you weisssoccermom. That's a lot of useful information, and I really appreciate you taking the time to write it for me. I have A LOT of questions that I want to ask you right now, but since I'm meeting with his doctor in less then 12 hours I will save them for him. I do kind of understand what you are saying about staging AFTER chemoradiation is done but before surgery. And Until a patient has surgery, there is no 100% way of knowing how many nodes are/aren't affected. The one thing that I just can't get my head around is why not do a CT scan Also? Why either/or? I read where CT scans are the best at showing distant nodes and mets. It just seems to me that a clinical diagnosis of Stage IV rectal cancer could be made pretty
early in the Process by doing a CT and MRI scan both. However, It seems like this is all going to move slower than I expected, and for all I know he may order a CT scan tomorrow.

If he wants to ask for a second opinion I'm going to recommend the O'Neal Comprehensive Cancer Center at UAB or The Winship Cancer Institution at Emory University in Atlanta. Both of these are NCI designated (Thanks Jacques!). If anybody has any first hand experiences with either of these two places please let me know.

Last thing, If anybody knows an excellent ABCRS surgeon in Alabama, Georgia, or Tennessee please let me know. I was looking on the internet yesterday and I got the American Board of Colon and Rectal surgery mixed up with the American Society of Colon and Rectal Surgeons.

Again, Thanks for the Replies!
J.M.

[weisssoccermom]

Crow23..
Sorry for the confusion. Let me try and explain it better.
Because rectal cancer most oftentimes has some form of NEOADJUVANT treatment (before surgery), a CLINICAL staging is first done based solely on the tests (EUS, MRI/CT). Even after surgery, there is no definitive way to know how many nodes may have been affected. The objective of the radiation is to annihilate the lymph nodes completely. IF the radiation has done a perfect job, when surgery is performed, there may very well be ZERO nodes that show as cancerous....simply because those that were suspicious (if there indeed were any to begin with) would be gone! That is why it is impossible to stage a patient who has had any form of neoadjuvant treatment after surgery. It wouldn't be reliable.

Here is a perfect example. I had a 4 X 6 cm tumor....that, based on EUS, was staged as a stage IIA. NO lymph nodes were suspicious on either the CT or the EUS. After chemoradiation, the tests all showed nothing....tumor was gone and again, no nodes showed up as suspicious. However, that wouldn't mean that I never had cancer. I was always considered to be a stage IIA and treated accordingly. Let's take another example. Suppose a patient comes in with rectal cancer.....a 5 cm mass......T3 and four suspicious local lymph nodes. No distant nodes/mets were seen. Ok, that patient is staged as a IIIB. Now, let's say that the same patient completes the usual 28 day course of chemo/radiation and then another EUS is done. The patient has surgery and the pathology shows a ypT1N0M0.....BUT that patient is NOT a stage I (T1N0M is a stage 1). That patient's pathology (p) after a neoadjuvant treatment (y) just indicates that the neoadjuvant treatment did a fantastic job. He/she will still be treated, after surgery, as a stage III patient and will follow up with the appropriate chemotherapy.

Some doctors don't like CT scans....they prefer the MRI and visa versa. It really is rather redundant to do both. Honestly, if there were distant mets, either one of those scans would show those. I wouldn't worry about that. A PET scan may be ordered if there is a suspicion that there is an active met. Another consideration is the insurance. Some insurances won't cover both.....saying that they are unnecessary. For what it is worth, I never had an MRI....just CT scans. Now, I've had MRI's on other parts of my body for other things....knee injuries, etc. but never for my cancer. It does seem to be moving slowly HOWEVER, with rectal cancer, the doctors NEED to make sure everything is being done in the right order. In the distant past, the plan usually didn't include neoadjuvant chemoradiation (or even just radiation) and the studies found lower local recurrence rates for those (except early stages .....stage I....where the risk of radiation outweighs the benefits) who did have neoadjuvant chemoradiation as opposed to those that did not. I remember when I was diagnosed with rectal cancer. I seemed like an eternity before I started radiation but the doctors were making sure that everything was done just right. All these steps have to be taken in order to have the best possible outcome.

What doctor is your dad seeing tomorrow....surgeon or oncologist? If a surgeon, then I would make sure that he is finding an oncologist right away and finding one that he likes/trusts. Don't worry about getting a second opinion from them as well.

Let us know how it all goes.

[Jacques]

Another few questions to ask the doctor:

- What was the baseline value of the tumor marker CEA?
- What is the MSI status (microsatellite instability) of the tumor?
- Did the colonoscopy go all the way to the end of the colon, or was it not possible to get past the blockage caused by the tumor?

Also, is your father obese, or is he a heavy smoker? These are known risk factors both for surgery and for chemo.

- - -

... If he wants to ask for a second opinion I'm going to recommend the O'Neal Comprehensive Cancer Center at UAB or The Winship Cancer Institution at Emory University in Atlanta. Both of these are NCI designated (Thanks Jacques!). If anybody has any first hand experiences with either of these two places please let me know...

Emory Winship first-hand experience

[NHMike]

I had the CT, pathology, Neo-Adjuvant Chemo and Radiation before my first MRI and the pathology for that indicated my staging. But nobody told me what my staging was. I had to determine that from what was written in the pathology report for the MRI. But this was after 28 days of chemo and radiation. I just guess 3B and I was correct.

The thing is that I was either 3A, 3B or 3C and the treatment would have been the same. So the pragmatic thing to do would be to just go through the Neoadjuvant treatment. The staging, as a pragmatic issue, is more of an issue for chemo after surgery. I did have suspicious lymph nodes but they were indeterminate after radiation which I think is the usual case. So you might be able to ballpark the Stage based on the reports that you have and the guidelines but the early treatment would likely be the same.