I'm new here; meeting the radiation oncologist on Wednesday

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georgemma
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Location: Cincinnati, OH

Postby georgemma » Fri Jan 19, 2007 10:08 am

This is a question for wdt or anyone who is reading today and cares to answer. wdt has written here that radiation is standard for rectal cancer, but I haven't come across that in the books and other websites that I have used. I would be interested in any information/resources to learn more about this. Thank you!

wdt
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Location: Little Rock, AR

Postby wdt » Fri Jan 19, 2007 11:33 am

I have attached some of the highest quality links. Put your cursor over it and click on it to get directed there.

You can get to this information by going to the american cancer society website at www.cancer.org and at national cancer institute at www.cancer.gov each of these sites allow you to search by "type of cancer" and they have colon and rectal cancer together in the selection, but they separate the information later.

On the NCI website once you select colon and rectal cancer, click on Treatment. Keep on clicking on "next section" at the bottom and you will eventually get to where it talks about radiation.

The american cancer society (ACS) has a link to the NCCN website so you can get there from it or you can go directly to www.nccn.org and select "treatment guidelines"

If you prefer to go via the ACS website to get there, click on "choose a cancer topic", select "colon and rectal", and select "treatment and decision tool" and it will direct you the the NCCN guidelines (along the left hand margin). From the NCCN website, choose "rectal cancer" since they have it addressed separately. It is addressed separately like this because they are treated differently (ie, radiation).

It may be a bit overwhelming with all the "medical-ease" but it has protocols used by surgeons and oncologists.

Also, if you are going to Cleveland Clinic, type in cleveland clinic colorectal in your web-browser (google, MSN, whatever you have) and you will get a link there.

I hope this helps. I have not included each and every "click" or even ALL of the information that you can find on these sites. But believe me, I have been very deep into all these sites - clicking on every single topic I can find when it comes to rectal cancer.

Let me know if you have any other questions or need additional help to find something specific on these sites.

georgemma
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Location: Cincinnati, OH

Postby georgemma » Fri Jan 19, 2007 8:54 pm

Thanks so much for the response. I had been on the ACS site and done their test, but the nccn was new for me and very helpful. Thank you, wdt.

wdt
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Location: Little Rock, AR

Postby wdt » Sat Jan 20, 2007 9:44 am

One thing that makes your situation a bit different than many of the other posts on this site is that you said you had a TEM procedure. If I remember correctly, your post is the first that I have come accross regarding this. I know about the TEM procedure because we had researched it for my husband early when he was first diagnosed and also they do this surgery a lot at the Clev Clinic. They have info on their website about it. It is a transanal microsurgery that is done when the cancer is found very early and still confined to the bowel wall -meaning the procedure was done completely through the anus with no incision. I think that we don't see a lot about that on this forum because most people treated in this manner tend to be stage I, occasionally stage II, so they get their surgery and move on - no chemo, no radiation, no nodes, no mets....you see what I am saying? Most people here have been diagnosed at stage III or IV when the cancer was found and were plunged immediatly into surgery, chemo, and/or radiation and have come here looking for help and support.

So, seeing a situation like yours with the TEM procedure is a bit out of the ordinary for what most of us in this forum have gone through and I would imagine that not many of "us" here are very familiar with the TEM procedure. With that said, you need to weigh some of the information that has been said here a bit more carefully. Margins in the TEM are not like surgical resection margins for those who have had resections and anastamosis. (resection= part of colon or rectum wirh the tumor has been cut out and completely removed. Anastamosis= where they have stapled or sewn the ends of the colon or rectum back together at the spot that they surgically removed the cancer (ie the resection area).

In one of your posts, you said the margins were not good - meaning that some questionable and/or cancer cells could still be seen microscopically within the specimen that was submitted to pathology. The very small margins would be expected with TEM because it is a microsurgery technique and they take very little of the bowel wall when they do this. So, when it came back, they most likely have suggested radiation to the operative site in order to kill those remaining cells.

Not to alarm you, but when you go to Cleveland Clinic they might (and I stress MIGHT) suggest that you have additional surgery to cut that portion of the bowel out (and could at that time take some lymph nodes to examine). The surgeons there are very experienced at these surgeries and have done a lot of TEM's so I feel they would be able to give you the most complete information on what would be best for you and your particular cancer at this time. I am sure they have seen situations similar to yours and know how best to deal with it.

If I recall, you had decided to go to Cleveland, so let me know what they say. I just hope in trying to help, I haven't confused you further. If you need me to clarify something, just let me know.

georgemma
Posts: 73
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Location: Cincinnati, OH

Postby georgemma » Sat Jan 20, 2007 1:39 pm

Wdt, your advice today was invaluable! You helped to clear up a lot of confusion. You made such a good point about the margins and TEM, and I thank you for that. I am reminded of what the surgeon said, that little research has been done on TEM and local recurrence. I really appreciate the time that you took to respond to my postings. Whether I am in the same boat with other people on this site or not, I enjoy the company!

wdt
Posts: 138
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Location: Little Rock, AR

Postby wdt » Sat Jan 20, 2007 6:47 pm

thank you for all the kind comments, georgemma. I just hope you do not think that I implied in some way that you didn't belong here. I certainly would never mean to convey that. I love this site and have found so much valuable information here and feel like everyone is so very supportive.

Keep in touch and let us all know how things are going. I am interested in knowing about your experience with Cleveland clinic, because we may still end up going there. -wdt

georgemma
Posts: 73
Joined: Mon Jan 15, 2007 1:45 pm
Location: Cincinnati, OH

Postby georgemma » Sun Jan 21, 2007 11:25 am

Second opinion at the Cleveland Clinic -- ?

Wdt, should we be privately e-mailing, since this has become a two-way dialogue? My surgeon called yesterday afternoon (Saturday), and we reviewed the path report together. That then led to a discussion of getting a second opinion at "the Clinic," as he referred to it. As you mentioned, he said that they are very conservative there, they would want me to have a LAR. He also felt that there was nothing to debate, I need to have radiation in case there is possible node involvement. It might be overkill, so to speak, since I am technically T1 N0 M0. He humbly stated that his skills were not great enough to detect a possible recurrence, even seeing me every three months. He reviewed the slides from my surgury with a colleague, and they were both in agreement that I needed to have radiation. By the way, wdt, you were right about the margins for TEM being much tighter than in the LAR. Okay, I hope this helps anyone out there who has also had or is a candidate to hae TEM.

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eitter
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Postby eitter » Sun Jan 21, 2007 12:31 pm

I do not mind you two having this conversation, we can read if we want or not. :)

I do have a question? What is TEM and LAR, sorry I am not sure I have heard those acronyms before.

Thanks!
Blessings,
Liz DENNIS
Tempe,AZ
DX 05/06 Rectal
6 Weeks radiation with 5FU
LAR 10/06 Stage III
Temp Ileo, reversal failed in 05/07 after 1m in hospital came out with a permanent colostomy
http://www.runlizrun.com

georgemma
Posts: 73
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Location: Cincinnati, OH

Postby georgemma » Sun Jan 21, 2007 1:29 pm

Transanal Endoscopic Microsurgery (minimally evasive, for tumors in lower part of rectum, no lymph nodes removed) vs. Low Anterior Resection (tumors in upper 2/3rds of rectum, abdominal surgery, some lymph nodes removed).

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eitter
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Postby eitter » Sun Jan 21, 2007 3:07 pm

Thank you Georgemma!

LOL I guess I even had a LAR......My rectum was resectioned to remove the tumor, had abdominal surgery and lymph's were removed, what do you know I had LAR! Wished I only needed TEM. :)

Thanks for the info I appreciate it! Love this group!

God Bless!
Blessings,
Liz DENNIS
Tempe,AZ
DX 05/06 Rectal
6 Weeks radiation with 5FU
LAR 10/06 Stage III
Temp Ileo, reversal failed in 05/07 after 1m in hospital came out with a permanent colostomy
http://www.runlizrun.com

wdt
Posts: 138
Joined: Sat Dec 30, 2006 10:52 pm
Location: Little Rock, AR

Postby wdt » Sun Jan 21, 2007 3:19 pm

Actually, it sounds more like you may have had an abdominoperineal resection (APR). If they removed your entire rectum and you have a permanent colostomy, then it was an APR.

A low anterior resection (LAR) can sometimes have a temporary colostomy to allow healing, (especially if there was reconstruction of the rectum involved called a J-pouch). But if that is the case, the colostomy is reversed in about a month or 6 weeks and and then you are again eliminate through your rectum.

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eitter
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Postby eitter » Sun Jan 21, 2007 5:52 pm

I have a temp ileostomy to allow for healing which is taking forever because of the radiation. He is going to check again in Feb to see if it is healed, in mid-dec it was not, surgery was October 2nd. He orginally told he could reverse in 8-12 weeks.....but it is is taking longer to heal. He was able to slavage some of my rectum, hence the temp ileostomy.

I love learning about all of these acronyms. So I guess I did have a LAR. :)

Thanks!
Blessings,
Liz DENNIS
Tempe,AZ
DX 05/06 Rectal
6 Weeks radiation with 5FU
LAR 10/06 Stage III
Temp Ileo, reversal failed in 05/07 after 1m in hospital came out with a permanent colostomy
http://www.runlizrun.com

georgemma
Posts: 73
Joined: Mon Jan 15, 2007 1:45 pm
Location: Cincinnati, OH

Postby georgemma » Sun Jan 21, 2007 7:52 pm

Best wishes, Liz. I hope that you are feeling better and are not in any pain. I hope that my somewhat-ridiculous questions have not offended you in any way. On Tuesday I am having a PET/CAT scan. I am sorry if this has been asked before, but am I supposed to skip milk and dairy products tomorrow and Tuesday morning? Also, can I swim laps, or would that be strenuous exercise? Thanks for any response.

wdt
Posts: 138
Joined: Sat Dec 30, 2006 10:52 pm
Location: Little Rock, AR

Postby wdt » Mon Jan 22, 2007 9:59 am

It might be best if you call the radiology department where the PET/CT is scheduled and ask to speak to a PET technician and tell them you have some questions about the instructions.

It is true that you are supposed to follow a low carbohydrate diet and no milk/dairy products. Our instructions said no milk/dairy products and low carb diet beginning the day before the scan - but the instructions can differ slightly depending on where you get the test.

Also, exercise leads to an increase in metabolic rate. This is why they usually restrict it for about 24 hours prior to the test in addition to the diet.

Here is the science behind it in a nutshell: The PET scan uses an infusion of radiolabled glucose (sugar) and cancer cells will take up the glucose faster than normal cells. Hence the low carb diet and exercise restrictions. The theory is that cancer cells utilize more glucose for energy because they divide (grow) more rapidly than normal cells.

If it were me, regardless of what they tell you, I'd rather err on the side of caution with regard to the exercise just to be sure the scan is as accurate as possible.

georgemma
Posts: 73
Joined: Mon Jan 15, 2007 1:45 pm
Location: Cincinnati, OH

Postby georgemma » Tue Jan 23, 2007 7:23 pm

Hi, wdt: I didn't exercise, stuck to the limited foods, and everything was fine with the scans today. Thanks for your support --


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