More confused after MD Anderson eval than before....

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More confused after MD Anderson eval than before....

Postby Christylyn » Thu May 16, 2013 6:27 pm

Just returned home from our first visit and evaluation at MD Anderson for rectal cancer. I have to say I am more confused now than before we went. They repeated the CT of the abd/pelvis and chest that my hubby had already done at home. Also added and MRI, flex sig and ultimately a special ultra sound done with a flex sig. The surgeon we were put with told us initially that the CT and MRI were not clear enough for her to accurately "stage" the tumor. Apparently it just wasn't showing up well due to it's location in the rectum. Hubby was stuck in the MRI for over 2 hours while they tried to get the angles and cuts they needed to get a clear view, but it didn't happen. That being the case, they ordered this ultrasound which is done using a flex sig under full anesthesia. Following that procedure, the GI doc who did the test told me that he was staging it at T3 because a very small portion of it has gone thru the wall and attached to the rectum. We later got a call from the surgeon saying that she was going with T2 for staging right now and would not want to do chemo or radiation prior to surgery. She wants to do robotic surgery, have hubby at Anderson for a full week in patient, then have us stay nearby an additional week for follow up. My confusion is with the discrepancy of staging. The surgeon originally stated that she couldn't judge staging accurately by the CT and MRI because they weren't good images. Yet when the GI doc who actually visualized the tumor via scope and ultrasound staged it at T3, she disagrees and says she's putting it at a 2. How????I'm also confused as to her saying there is no need for chemo or radiation prior to surgery as it's my understanding that at stage 2 and 3 both are highly recommended. I also thought this helped greatly in preventing return of the cancer after surgery. Today I was going thru the recortds we brought home with us from Anderson and I see an EKG that was done on my hubby. It shows some issues---namley a conduction disorder and dysarythmia. No one at Anderson ever mentioned this to us. However, I called his PA today and she said yes, she had seen that and they would need him to also see a cardio at Anderson prior to his surgery in order to get cardiac clearance for surgery. Now, while we we there they had him under anesthesia. I'm a bit concerned that this point was brought up only after I saw it and called and now they're saying he shouldn't have anesthesia until he see's a cardio. Shouldn't that have been noticed BEFORE he was put under while we were there? I don't know. I am really having serious concerns about the care at Anderson and maybe I'm all wrong. Has anyone else had a negative experience there? Just seemed like they pushed and pushed regarding their research but our questions basically went unanswered and now I am questioning their level of care. Am I just reading everything all wrong and expecting more when in reality this is how it goes and there really IS no problem???????I spoke to our internal med doc here at home and she advised a second opinion locally at Rocky Mountain Cancer Center. He is scheduled there for next week. Thoughts and experience appreciated!

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Re: More confused after MD Anderson eval than before....

Postby chrissyrice » Thu May 16, 2013 7:58 pm

I don't have any answers for you, but I sure can understand your concern.

Excellent that you also seeking a 2nd opinion ... don't feel rushed into treatment or surgery until you have got all your questions answered. There are a lot of options out there so take some time to seek out the answers.

And yes you will find that even the most wonderful doctors and cancer centers are not perfect... you have to watch, read, and ask the questions on all tests and reports. You have to get your mindset on their side of the business of healthcare, treatment, and health insurance as well.

It's a new world you are entering... it's not as simple as we wish it could be. Heck, we are sick and scared and unlike a car mechanic they don't even want to give us an estimate of the costs before they start working on our bodies :?

Many of us here have set up our own medical binders with all our tests and cd's of scans. I used to caring around a portable file box and my laptop on all my appointments, tests, etc. I still get a copy of the cd before I leave the scanning office, becaused I learned that it's free if I get it right then and there... go figure! The report follows latter at my onc. visit.

This is one of the wonderful things about this site... you can find so many ideas and ways to navigate the medical world and dealing with cancer. While everyone on my medical team did their best for me... I had to partner with them to make the right decisions about my cancer treatment.

I hope you will continue to be such a great advocate for your husband. You are doing all the right things and helping him more than you may realize right now.

You are not alone here!

DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

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Re: More confused after MD Anderson eval than before....

Postby Bev G » Thu May 16, 2013 9:23 pm

Hello Christy, and welcome to the Colon Club. I'm sorry you had such a confusing visit at MDA. I don't know much about recommendations for rectal cancer urgery asI have colon, but I had gotten the impression over the years around here that some chemo and radiation prior to surgery were common. I claim NO expertise in this area, and I'm sure some of the experts will chime in. Re: the potential cardiac issue and anesthesia. I suspect he had very light anesthesia for the scope procedure, and all the medical clearances done before major surgery are not really required in the case of scopes and stuff, so I wouldn't worry about that. I wouldn't like it, however, that the EKG findings hadn't been brought to you attention, rather than the other way around. I'm glad you're getting another opinion closer to home.

Best wishes to you both,

58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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Re: More confused after MD Anderson eval than before....

Postby luvmymom » Thu May 16, 2013 10:18 pm

Hi again Christylyn. First off, you may already know this, but just to make sure you do, "T2" and "T3" are not the same as "Stage II" or "Stage III." They are classifications that have to do only with tumor size and penetration into/through the rectal wall.

The actual staging of the tumor also depends on (1) the number of lymph nodes invaded, and (2) whether there are metastases to other organs. If the scans do not suggest positive lymph nodes (which would put a patient in Stage III) or metastasis to other organs (which would put the patient in Stage IV) then I think it is not unusual to start with surgery.

A benefit of chemoradiation first can be that a tumor can sometimes be shrunk to the point where a colostomy/ileostomy is not necessary, whereas it would have otherwise been. On the other hand, radiation generates stiff scar tissue which I think can make it harder for a surgeon to operate.
Daughter of mom dx @ 68, Stage IIIB (T3N1) rectal.
Colonoscopy 11/19/12. Dx adenocarcinoma 11/28/12.
LAR 1/2/13. Port 2/4/13.
2-7/13: FOLFOX6 (4x). Xeloda+radiation (28x). FOLFOX6 (4 tx).
9/25/13--1st CT post-tx. NED.

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Re: More confused after MD Anderson eval than before....

Postby Christylyn » Thu May 16, 2013 11:34 pm

As always I learn more every time I come on here! Thanks so much! No, I didn't know T2/T3 were different than stage 2 or 3! That gives me a little peace knowing the difference! Geez! There should be a manual that comes with a cancer diagnosis, shouldn't there? From what they were able to see on the scans they said it appears there is no lymph node involvement. She did say that can only be confirmed when the pathology is done following surgery, but reassured us twice that they weren't seeing any signs of lymph node involvement from anything done so far. (However, the original CT scan done here at home did show "numerous shotty nodes" in the abdomen and pelvis) I am anxious to hear what the local oncologist has to say and if he agrees with the surgery first recommendation. I think hubby has pretty much decided if this doc concurs, he will have the surgery at Anderson. If this doc disagrees, a 3rd opinion will be sought and the majority will be given the strongest consideration. I feel that's sound thinking. I sure don't want him to have to go thru chemo and/or radiation if it isn't needed, but at the same time I don't want there to be a greater risk of it coming back because he didn't do that. The decisions are endless and I sit here and think, "How do people handle this every day for years at a time?" I have to say that every, single person who has gone thru or is going thru this is a hero. While we were at Anderson I sat in those giant waiting rooms and walked those hallways and everywhere you look are people, people, people. Thousands of people at any given time of day and every one of them is there because they have cancer or are there with someone who does. And that's just one institution out of millions of care centers all over the world. It just boggles the mind that there are so many people fighting this battle every, single day. I will say this about Anderson......the patients and their families are an awesome bunch. We met some of the most incredible folks while we were there. I hope that the friendships developed and the camaraderie that we felt there is something that is found in every treatment facility because that is where we drew our strength and hope from. I hope that everyone who is going thru diagnosis and treatment is fortunate enough to share that with others who are walking this road with them.

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Re: More confused after MD Anderson eval than before....

Postby luvmymom » Fri May 17, 2013 8:27 am

Christylyn wrote:As always I learn more every time I come on here! Thanks so much! No, I didn't know T2/T3 were different than stage 2 or 3! That gives me a little peace knowing the difference! Geez! There should be a manual that comes with a cancer diagnosis, shouldn't there? From what they were able to see on the scans they said it appears there is no lymph node involvement. She did say that can only be confirmed when the pathology is done following surgery, but reassured us twice that they weren't seeing any signs of lymph node involvement from anything done so far.

Well CL, if it turns out to be the case that there is no node involvement then you caught things extremely early: T2 and no positive nodes and no mets (T2N0M0) is still Stage 1, T3 and no positive nodes and no mets (T3N0M0) is the beginning of Stage II (Stage IIA). Both are very early stages.

I am surprised that MDA did not explain to you about staging; that seems a really basic thing to talk to someone about after doing all that imaging.

Best to you and DH.
Daughter of mom dx @ 68, Stage IIIB (T3N1) rectal.
Colonoscopy 11/19/12. Dx adenocarcinoma 11/28/12.
LAR 1/2/13. Port 2/4/13.
2-7/13: FOLFOX6 (4x). Xeloda+radiation (28x). FOLFOX6 (4 tx).
9/25/13--1st CT post-tx. NED.

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Re: More confused after MD Anderson eval than before....

Postby SkiFletch » Fri May 17, 2013 8:35 am

A few things. First, yes, T2 and T3 are different than stage II and III. It seems like the discrepancy lies with how many layers of the rectal wall are penetrated. When you're right on the border like this, it might make sense to do the surgery first, see what the pathology reveals, and then decide on chemo/rad later. It doesn't HAVE to be chemo/rad--->surgery--->systemic chemo. The order can be changed around if pathology reveals the need.

You don't mention location... Tumor location (near the anus, or near the colon) can affect the decision on chemo/rad first/second especially with boarderline tumors.

Lastly anesthesia, Bev is right. Usually they just use a light dose of fentanyl and versed similar to what's used for colonoscopies. Yes, it's anesthesia, but it's not ANESTHESIA. These drugs are usually not contra-indicated with minor cardiac issues and it's more than likely that the docs looked at the ECG and considered it safe to proceed.

This stuff is hard to understand so I'm glad you're here asking. A manual would be great huh? :). You're doing the right thing seeking a second opinion regardless when there are boarderline issues in play. I hope you can figure out a good solution for your husband
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
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Re: More confused after MD Anderson eval than before....

Postby shmurciakova » Fri May 17, 2013 10:52 am

I would strongly recommend e-mailing your doctors at MD and just straight up asking them your questions. All docs at MD have e-mail addresses, first initial, last name, at
They don't mind and I have found it to be the very fastest way to get answers to those nagging questions! I still write to my liver surgeon/med oncologist and ask him stuff. He does not mind! and usually anwers me w/in 24 hours.
Also, if you have not already done so, you should sign up on web page. There you can make appointments,
change appointments, look at all of your test results, I think there is a forum like this on there too. Tons of valuable info.

It has been my understanding that rectal cancer patients have radiation first to shrink the tumor prior to surgery. Perhaps your husband does not need this. There is absolutely no doubt that the surgeons over there are some of the best out there.

Weigh your options thoroughly, but if you have questions, don't be afraid to ask them!

Best wishes, Susan H.
diagnosed at 31 in 2002, Stage IV
Sigmoid colectomy - 6 mos 5-FU/Leukovorin
liver resection - 6 rounds XELIRI (xeloda/irinotecan)
lung wedge resection Oct. 2004 - no chemo

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Re: More confused after MD Anderson eval than before....

Postby init0 » Fri May 17, 2013 1:16 pm

I am very sorry to hear the amount of confusion and frustration you are having to deal with, I hope it get better for you as time goes by. I will state the obligatory "I am not a doctor" stuff, but I did stay at a Holiday Inn last night! :wink: With that out of the way I can relate to you my chemo or non-chemo before surgery experience. I was diagnosed with Stage 3 CC with colon wall penetration and two lymph-nodes malignant as well and I did not have any chemo before surgery and did not require any type of ostomy temporary or otherwise. I am now well over 5 years out and so far so good (knocks on wood loudly) so I please just keep in mind that there are no steadfast rules and your best bet is to do exactly what your doing, go to a Major cancer center, get an opinion and follow that up with a second opinion. Make the best choice you can given all the information your doctors give you and never look back, just focus on now and your future together, hind site, when it comes to cancer treatment, can drive you mad! Good luck!
Stage 3c 1/30/2008 at 38yrs old
2 Resections, no ostomy
12 rounds of Folfox completed 8/15/2008
In Remission for over 5 years now!

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Re: More confused after MD Anderson eval than before....

Postby sbrainbolt » Fri May 17, 2013 1:38 pm


Sorry you are going through all of this confusion and that you had to join this club in the first place....

It is very overwhelming just walking into a facility like MDA, I can remember how surreal it was the first time. Take a deep breath and go in prepared. Make a list of questions and take it with you so you don't forget to ask them. Keep in mind when dealing with any Dr. no matter where they are located is that you deserve to have all of your questions answered in a manner that you can understand. SOMETIMES you have to demand it. Be your own medical advocate and don't stop asking until you understand.

I feel like I received fantastic care overall at MDA Houston. Was it perfect? - probably not, but I was always treated very well and I am disappointed that you had such a negative experience there.

I loved my surgeon and feel like he was top notch in his field and did a great job on my surgery. I didn't get a full explaination on the staging until I met with the surgeon and his PA did explain it to me and my husband. They thought I was stage 1 going in, but found 1 lymph node hiding out in there that was positive for cancer, so I went from stage 1 to stage 3A (T1N1M0). I had a tumor in the lower sigmoid colon. I was completely put back together with no issues other than chronic constipation which I have had all of my life. My tumor was completely removed during my colonoscopy and I did not require any chemo or radiation prior to my surgery. In fact I was diagnosed on Jan 26th 2012 and had surgery on February 3rd, 2012. 6 weeks later I started 12 rounds of FOLFOX.

FYI...If your husband does have his surgery there and it is not offered to him when you talk to anesthisia, tell him to ask about an epidural as part of his pain management program. I wasn't told about it until I was in the pre-op area and IT WAS A LIFE SAVER at managing pain after surgery. I don't know if it is something offered for every colorectal surgery, but worth asking about!

Hang in there and good luck at your second opinion.

Susan R
DX 1/12 50 yrs
LAR 2/12 CR 3A T1N1M0
chemo 3/12- 9/10/12 FOLFOX, issues with platelet counts every 4th treatment
CEA normal
CT 3/15 stable lung nods since 1/2012 NED.
SBO kinked small bowel 10/13 - LAPRO surgery to fix
yrly scans now
09/25/2017 - Graduated to the Survivorship Clinic at MDA! Cured!!!

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Re: More confused after MD Anderson eval than before....

Postby alphagam » Fri May 17, 2013 1:59 pm

Please continue to ask questions until you and your husband understand. After rectal ultrasound, I was told I had a T3 tumor very low in my rectum. I was kinda slotted for chem, radiation, rest, APR surgery, recovery and more chemo. I would have had a permanent colostomy as well. My surgeon does not like rectal ultrasounds, so he ordered a PET scan. That came back with no uptake except in the rectum. After consultation with radiologist, oncologist and surgeon, we decided that we really needed pathology. I was scheduled for a transanal resection. The tumor, 5 cm, was "easy" to remove as it was only in the mucosal lining. Long story short, cancer in situ, high dysphasia and a Stage 0 diagnosis. No treatment, but lots of follow up.

The more my husband and I asked questions to understand, the more the docs talked to each other. Never saying that any two cases are the same, but even before the miraculous results, we understood the whys and wherefores. We could make informed decisions.

Keep asking until you understand!
Dx Feb 2010 4 cm tumor, just inside rectum
EUS stated T3 tumor
2nd opinion, need better path
Mar 2010 transanal surgery. Surgery by board certified CRS found tumor only in lining
6 exams of surg site, 3 PET, 3 scopes laterNED.
Scope in Mar2015, clean colon
Next scope/test in 3 years

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Re: More confused after MD Anderson eval than before....

Postby Christylyn » Mon May 20, 2013 7:09 pm

Thanks so much for all of the answers you've given. I swear, I truly do learn more on here than I do from the care team! Part of that is because I don't think of the questions until after we're back home, so not necessarily the fault of anyone other than me! His tumor is located about 6 inches into the rectum. Apparently it's a very difficult surgical location from what we were told. The surgeon is saying she hopes to accomplish the surgery robotically, then depending on surgical pathology he may or may not need chemo/radiation. She plans to do a temp. ileostomy which she says will eventually be revered, but she didn't really indicate when that would be likely to happen. That's all assuming everything goes as planned and she doesn't end up having to do more invasive surgery. His biggest fear right now seems to be about not wanting to have a colostomy and about not wanting to have to do chemo and radiation. Understandable fears, but as I told him.......if that's what it takes to make you healthy and allow you to continue to be here with us, then you just have to do what has to be done. In his mind, he pictures the colostomies done back in the day. He had a friend way back when who had one and I guess had great difficulties with odor, leakage, etc. I have explained 100 times that it wouldn't be that way, but it's in his mind and that's how he thinks it would be.

I am really surprised hearing that our Anderson experience was so different. We left with most of our questions unanswered, despite our best efforts. Phone messages left for the surgeon and PA went unreturned. We had such difficulty with even getting an answer on what the plan was going to be following that ultra sound that we actually went to the patient advocacy office and asked for their help in getting an answer so we could return home after having been there for 9 days. I do have a great deal of faith in the abilities of the surgeon, Dr. Nancy You. She certainly did seem to know her business. Our issue was being unable to talk to her and unable to even get her PA to talk to us other than at the one appt. we had with her. I guess I just need to be more assertive in asking questions and making sure we get answers!

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Re: More confused after MD Anderson eval than before....

Postby weisssoccermom » Mon May 20, 2013 8:52 pm

Sorry I just got around to reading this thread. You've already been informed that T2/T3 are not the same as stage II/ is a link to the ACS page that should clear some things up and help you with other questions you may have. ... cer-staged

Next, you shouldn't feel that you must go to MD Anderson for surgery when likely as not you have some equally qualified surgeons in your own back yard. I think you indicated in one of your posts that you would be seeking an opinion from the Rocky Mountain Cancer Center so you must be in the Denver area that correct? I know oftentimes people feel that with cancer you MUST go to the highly renowned cancer centers but honestly, you shouldn't feel as though you need to travel, particularly if your husband is a stage I (T2N0M0). The most important thing with rectal cancer is to have a board certified colon and rectal surgeon do the surgery as opposed to a general surgeon who can also do the surgery. Here is a link to verify a surgeon's credentials.

Let me also clarify another part of the treatment plan. Stage I patients RARELY get neoadjuvant chemoradiation (chemoradiation prior to surgery). The risk v benefit just isn't worth it. In addition, 'most' rectal cancer patients who don't receive neoadjuvant chemoradiation don't have to have a temp ileostomy. Radiated tissue is much more difficult to work with and takes a lot longer to heal - hence the reason why those receiving radiation prior to surgery almost always have the temp ileostomy.

Surgery is going to be difficult and there will be follow ups with the surgeon to consider. I don't know exactly where you live but, in an relatively uncomplicated case, you seriously can consider having surgery closer to home. It would make things much easier on both you and your husband. I realize that when you're hit with the diagnosis of is frightening and you only want the best. That doesn't mean, however, that you need to travel to find a good surgeon. Assuming I am correct and you are in the Denver area (or if a major metropolitan area is closer) it is not necessary to travel to have surgery for an uncomplicated case of rectal cancer (particulary a stage I/II or even a stage III).

I'm also not sure why someone told you that a tumor 6 inches into the rectum (rarely do the surgeons use inches - perhaps it was 6 cm??) is in a difficult place. 6 inches or 6 cm in is definitely NOT considered to be difficult. I'm not saying you shouldn't go to MD Anderson if that truly is what you want to do but.....don't rule out a qualified colon/rectal surgeon (check the link) just because he/she doesn't practice at some place like Sloan or MD Anderson. As you can see from my signature, my surgery was 6 years ago, and like your husband, I was initially diagnosed, by the GI doc with a T3 tumor making me a stage II. The surgeon, however, after looking at the ultrasound images disagreed and staged me as a T2 (which, btw, would have meant that I was truly a stage I all along). In my case, that was done months later and I had already gone through the chemoradiation. BTW - an ultrasound for rectal cancer is standard for staging.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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Re: More confused after MD Anderson eval than before....

Postby kellywin » Tue May 21, 2013 1:14 pm

Christy - I just want to echo what weissscoccermom said about a surgeon close to you. In my totally personal, non-medical opinion, the surgeon is the biggest player in all of this. For the most part, chemo is chemo and radiation is radiation. I live in a somewhat small town (we don't even have a department store here) but for some reason we have a pretty good cancer center owned by the Hospital. More than that though is we have a wonderful colo-rectal surgeon in town. He's not affilitated with the cancer center itself, but works with them and the hospital. My surgeon is what got me through chemo/radiation prior to surgery and got me through surgery with clear margins and even with the radiation, he was able to complete the surgery with no illesostomy. My tumor was probably a bit higher, but I don't think that much higher. He was able to do the procedure laparoscopic so recovery time was minimized. My surgeon was available to me anytime, he returned phone calls and emails late at night knowing I needed answers.

I'm not de-bunking a major cancer center, just offering my personal experience that you can get incredibly good care without going to one.

Good luck to you and your husband in this very difficult time. Know that you will get through this, it's so overwhelming.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

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Re: More confused after MD Anderson eval than before....

Postby hannahw » Tue May 21, 2013 4:26 pm

I think sometimes docs forget, or lose awareness, or never realized to begin with, how difficult it is for patients and caregivers to enter this brand new world with all it's terminology and challenges and decision making. Sometimes docs just cut to the chase and tell you what they recommend, which for some patients/caregivers, is fine. But for others, they want to know the thought process behind the recommendation. It's understandable to want insight. Your life, or the life of your loved one, is potentially at stake. It's all the more challenging for patients/caregivers when the recommendations conflict. It's probably the time when explanations are most needed. How/why were these different conclusions drawn and what are the decision making points? When docs give you different recommendations, you have to chose so it helps if you have some info on which to base your decisions.

With that in mind, do not hesitate to ask more questions. Ask the surgeon for more info on why she's not recommending chemo/radiation. It probably has to do with risk versus reward, but hearing it from her mouth will give you a chance to understand the thought process. It can also help build trust which is important. Especially when there are likely to be challenges along the way. You really want to feel good about your team of doctors so that in the event of complications, setbacks, etc you feel like you're in good hands.

Part of the docs job is to go over your questions and concerns. Sometimes it's tough to formulate your questions during the appointment so don't feel bad if ou need to go back later and get clarification.

Communication is critical. The doctor isn't always going to communicate with you in a way that works for you. It's no one's fault when that happens, but it's to your benefit to seek clarification.
Daughter of Dad with Stage IV CC

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