Just Diagnosed

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Gloriamazz
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Just Diagnosed

Postby Gloriamazz » Fri Jul 13, 2018 2:25 pm

Hi everyone my name is Gloria.I am from Ohio. Just turned 73 yrs on July 7.

I am a Diabetic2 and take Metformin and Glipizide.
For the past year I have had bowel issues of and on and thought it was what I was eating and thinking milk sensitivity.

I told the das about this and they did test for codify, h-pylori and parasites.

My regular Dr moved to Florida and I was waiting forever for an appt with my new primary.

We discussed the issue he said hemorrhoids and to apply cream take sit baths. I was in pain so called he was not available went to another doctor same thing hemorrhoid

Went to three more doctors was referred to the doctor who did my colonoscopy three years ago

He scheduled a colonoscopy for that Friday and called and said the results were concerning and sent me to colorectal surgeon.

I sat and met with him and he scheduled MRI, Cat Scan and ultrasound.

I had ultrasound yesterday and don't understand.
Can you help me with this.

It says This is adenocarcinoma. This
is staged uT2. uNO

Then it goes on to say a hypoechoic mass was founding the rectum The mass was encountered at 4 I'm from analverge. The mass was none circumferential. The mass measures 50 mm in length and 12mm in width.

There was pornographic evidence suggesting invasion into the muculatispropria (layer4). Without breakthrough into the parietal hat. There was no pornographic evidence of invasion into adjacent structures

Can you please tell me what all this means.

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

Re: Just Diagnosed

Postby NHMike » Fri Jul 13, 2018 3:05 pm

There's a chart at https://cancerstaging.org/references-to ... Medium.pdf which explains what you have. It looks like Stage I cancer to me.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Lee
Posts: 5740
Joined: Sun Apr 16, 2006 4:09 pm

Re: Just Diagnosed

Postby Lee » Mon Jul 16, 2018 4:54 pm

Hi and welcome, sorry for the reason you are here. It sounds like you have rectal cancer and as Mike stated, looks like stage I. Your chances are very good that you will beat this. Surgery for sure, more than likely, no chemo. Butt you might be getting radiation prior to the surgery to help shrink the tumor. It's best that a board certified colon rectal surgeon do this type of surgery.

Have you met with an Onc yet? Even if you are not getting chemo, it would be best to hear that from an Onc and not a surgeon. You consult an Onc for chemo type decision, and you consult a surgeon for surgery type decision.

Keep us posted,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Gloriamazz
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Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
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Re: Just Diagnosed

Postby Gloriamazz » Mon Jul 16, 2018 11:36 pm

Thanks for replying. You were so young when you got this disease. I have been complaining of diarrhea for over a year off and on to my PCP they never did a colonoscopy probably because I had one 3 years ago.

I did not have any blood until few weeks ago when they were telling me I had hemorrhoids. Two doctors told me that and prescribed an expensive cream and said to take sitz baths. I was in the worst kind of pain I used ice, the cream and did the sitz baths.

The pain was so bad I called a surgeon and made an appt for the end of July. I was going crazy with the pain so called and they said I should call my original who did my colonoscopy 3 (three) year's ago.

I called and as luck would have it his assistant could see me the following day. She ordered several test with one on them being a colonoscopy.

Had the colonoscopy and doctor said something concerning showing and I should gave an MRI.

I scheduled the test and the findings are as follows:

A hypoechic mass was found in the rectum. The mass encountered at 4 I'm (from the anal verge). The mass was none circumferential. The Mass measured 50 mm (in maximum length) 12 Mm (in maximum width). There was pornographic evidence suggesting invasion into the muscular is propria (Layer4). Without breakthrough into the perrirectal fat. There was no pornographic evidence of invasion into the adjacent structures.

Can you let me know that the mass is almost 2 inches. Isn't that high and the 4l centimeters from the anal verge isn't that to close to restructure?? Do you think it calls for a colostony?

Gloriamazz
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Re: Just Diagnosed

Postby Gloriamazz » Mon Jul 16, 2018 11:44 pm

I have an oncologist and surgeon both

Did you have a lot of pain? How far was the tumor away from the Anal Verge?

What made them do a colostomy?

God love you are a survivor.

Did you have any symptons

weisssoccermom
Posts: 5883
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Just Diagnosed

Postby weisssoccermom » Tue Jul 17, 2018 12:53 am

Gloria....
I'll try to answer some of your questions relating to your ultrasound report.

The tumor DEPTH is staged as a T2. That means that the tumor has invaded a layer of the rectum that is called the muscularis propria but has not completely gone through that layer. Think of the rectal wall as having a lot of layers and look at the link that NHMike supplied.

Cancer is staged by three components.....the 'T' stage, the 'N' designation and the 'M' designation
The 'T' designation is simply the tumor DEPTH into the colon or rectal wall
the 'N' designation refers to how many LOCAL lymph nodes are suspicious of having cancerous cells in them
The 'M' designation refers to DISTANT metastasis.....these can be either distant mets to an organ (lung, liver, bones, etc.) OR to distant lymph nodes

The endorectal ultrasound that you had done ONLY was looking at the rectal area, hence there is nothing in the report to tell one way or another whether the cancer has spread to a distant site.

The uT2 uN0 simply says that the tumor is 'staged' at a T2 (this is not to be confused with the overall stage) and that the ultrasound (which is fairly accurate although nothing is 100% accurate) indicates that no LOCAL lymph nodes were suspicious for cancer.

The phrase adenocarcinoma means simply that you have a tumor has been confirmed, via pathology from the colonoscopy to be cancerous and the tumor is an adenocarcinoma....versus say a squamous cell tumor. The vast majority of colorectal tumors are adenocarcinomas.

A hypoechoic mass simply means that it doesn't bounce sound waves very well and is not as dark as 'normal' surrounding tissue.....i.e. its a mass. I assume you meant that the mass was 'not' circumferential.....simply means that it doesn't go around the entire circumference of the rectum. Remember, the rectum is an organ that is long and similar to a tube....it has a circumference. Your tumor does NOT go around the entire circumference. Your tumor was found 4cm in from the anal verge .....which is another way of basically saying 4 cm in from where your defecate from. 4 cm is about 1.5 inches. So basically, your tumor is NOT high up and this is probably why you are feeling pain (as opposed to if it was much higher up. It's been my experience that most doctors refer to the tumors in cm..not mm ....but regardless, your tumor is roughly 5 cm long by 1.2 cm wide. That's approximately a 2 inch by 0.5 inch (wide) tumor. You can look at the link that was in the prior email to see what the other terms mean with respect to how far the tumor has invaded. I assume you meant to type perirectal fat....which is the fat around the rectum. It appears that your tumor did NOT break through the layers of the rectum and into that fat...a good sign. When the report states that there is no evidence of invasion into adjacent structures...that simply means that the tumor is NOT broken through the walls of the rectum and, for example, going into the vaginal walls....again another good sign.

The reason your doctor has ordered a CT and MRI is to determine what, if any, spread there is in your body. These tests will look at your lungs, you chest, your liver, your abdominal cavity and your pelvis. Either one of these tests will help determine the "M" designation of distant lymph nodes and/or distant organs. These tests, along with the ultrasound, are together pretty accurate with respect to the LOCAL lymph nodes. So, let's assume that everything is clear on the CT and MRI.
Based on your clinical staging (rectal cancer is always clinically staged first), that would put you at a stage I. HOWEVER, if either or both of these tests picks up any distant (or even local) suspicious nodes and/or masses, that would change your staging.

The treatment protocol will depend on the results of these two tests. GENERALLY speaking...and this is NOT a definitive answer....IF a patient is a stage I...they 'USUALLY' do not undergo chemoradiation to attempt to shrink the tumor......HOWEVER, in certain cases it may be more beneficial to the patient....particularly when the tumor is low lying (near the spinchter muscles) that the patient does have radiation first to shrink the tumor.

RIght now, until you have the results of the MRI and CT you can't know what the next steps will be. Hopefully, I've been able to help you somewhat decipher your ultrasound report. BTW...the 'u' before the T2 simply means that this determination was made from an ultrasound. If you see a 'p' before it....it means that pathology made the determination. If one sees a 'yp' before it (example ypT2) it simply means that the patient had some form of treatment (chemo, radiation) before having the specimen looked at by a pathologist.
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!
Perform random acts of kindness

Gloriamazz
Posts: 35
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Just Diagnosed

Postby Gloriamazz » Tue Jul 17, 2018 9:19 am

Hi thank you for the info. You really know a lot. I was trying to copy my MRI of the pelvis withoutkuck so I will type it.

Date of exam July 6, 2018
Reason: Hemorrhage of anus and rectum, C21.1, Malignant Neoplasm of Anal Canal

Result:

Tumor location
Location Anal Canal
Distance to top of internal anal Sphincter: N/A; Tumor is centered within the anal sphincter
Distance to Anal Verge 1.9
Relationship to peritoneal reflection below:

Type polypoid, heterogeneous enhancing, mildly T2 hyper intense, 2.4 x 2.3 x1.4 cm

Circumferential extent: Left anterior, approximately 40-50 percent.
Wall Invasion: in the left anterolateral position there is likely invasion: in the left anterolateral sphincter and interspincter fat with long segment (1.3 cm) abutment of the left external anal sphincter complex (6.25). -- this does raise the possibility if microscopic tumor invasion.
However no gross tumor signal within the external anal sphincter complex itself.

Study result: anal neoplasm with trans mural invasion through anterior left lateral aspect of internal sphincter into intersphincteris fat. Lesion contacts the left external sphincter complex and posterior wall of vagina/perineal body, but without gross intramuscular tumor signal.

No suspicious lymphadenopathy
By MRI would be a T2 No Leision


Please interpret the MRI. Pelvic test

weisssoccermom
Posts: 5883
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Just Diagnosed

Postby weisssoccermom » Tue Jul 17, 2018 10:27 am

Gloria,
Please keep in mind that I am NOT a doctor so please be sure to ask your onc or surgeon to specifically and in terms you can understand, interpret the results of both of these exams.

First of all, this MRI appears to ONLY be a rectal MRI.....meaning it didn't look at (or at least based on what you typed) the abdominal,chest area or the entire pelvic area. IF it had been done on those other areas, there would have been some mention of what, if anything, they saw in the lungs, liver, distant lymph nodes,kidneys etc. That is why you are still having a CT scan. I also wanted to tell you that when you have the CT, don't be alarmed if there are a lot of findings....totally UNRELATED to cancer! For example, when I was diagnosed, I was told that I had a kidney stone but, of course, the report didn't refer to it simply as a kidney stone. Mine was referenced as a left renal calculus...which totally freaked me out until I talked with my doctor....a simply kidney stone. That same initial CT exam also mentioned that one lobe of my liver was enlarged which again was not significant.....and no mets. One of my reports, much later in the process, showed that I had arthritis in my spine...but again, of course, they don't say it in those terms. Just be prepared to find out you likely have some or many other findings which the CT report will entail that may not have anything to do with the cancer.

The MRI confirmed that there are NO local nodes which is a good sign. It also confirmed that the tumor is a T2 although it did put the tumor much lower down (1.9) cm than the ultrasound did. This most recent test is more specific where the tumor is in relation to the sphincter muscles. The sphincters are circular muscles, at the beginning of your anal canal that control your bowel movements. These are the muscles that help a person hold in a bowel movement or stop a person from passing gas. A person has both internal and external sphincter muscles. From what I can interpret, your tumor invades the INTERNAL sphincters and the thin layer of fat between the two sphincters. The report states that it doesn't appear that the tumor invades the external sphincter BUT.....there are subtle findings that may suggest it does.

The reality of this MRI report is that it quite clearly states that the tumor is within the sphincter area of the anus itself. That means that the tumor is lower than expected and encompasses the sphincter muscle itself.
https://healthiack.com/encyclopedia/pic ... r-external
It is extremely unlikely that even a colorectal surgeon would be able to save anything because once the sphincters themselves are affected, they would need to be taken out. However, there are always new surgeries/approaches, etc. that may be done rather than immediately performing an ostomy surgery. I would HIGHLY suggest that you seek out the services of a BOARD CERTIFIED Colon/rectal surgeon. Please understand that even a general surgeon can and will perform this surgery but, again, IMO, you WANT and NEED the services of a board certified colorectal surgeon. Research the surgeon's credentials. Verify (I will attach a link) that the surgeon is indeed board certified in colon/rectal surgery and not just a general surgeon who says that he/she 'specializes' in this surgical area.

Recap: the MRI basically reinforces that your tumor is a T2 and that there are no local lymph nodes affected. The MRI also shows that the tumor is lower down than the ultrasound (and the doctor who performed the doctor) stated. It appears that your tumor is located on the left anterior wall of the rectum and not the other side.

The next step will be the CT test which will look at the chest/abdomen/pelvis. The MRI may only have been a rectal MRI and didn't look at the entire pelvis. You may also want to make sure that your onc orders some specific blood tests....a CEA which is a tumor marker test and a full blood panel. Just a bit of preemptive information. MANY people have very normal CEA tests (within normal limits) even though they have a big tumor. Do NOT assume that if you have a normal CEA test that it means the tumor isn't really cancerous. A normal CEA test simply means that YOUR tumor doesn't express the protein that the tests is looking for.

Please keep us updated. When is the CT scheduled for??
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!
Perform random acts of kindness

Gloriamazz
Posts: 35
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Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
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Re: Just Diagnosed

Postby Gloriamazz » Tue Jul 17, 2018 10:38 am

Hi
Thank you for your response.

I already had the cat scan. I'm just waiting for the surgeon to call and set up an appointment

Gloriamazz
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Re: Just Diagnosed

Postby Gloriamazz » Tue Jul 17, 2018 10:49 am

Hi. Does all this mean I am going to have a colostomy bag?

Or does it mean there is nothing the surgeon can do?

I noticed that this report is a lot lower

weisssoccermom
Posts: 5883
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Just Diagnosed

Postby weisssoccermom » Tue Jul 17, 2018 12:23 pm

Gloria,
Super quick response as I am on the way to the doctors.

1. I cannot say one way or another whether or not you will/won't have a colostomy. That is the surgeon's call. He/she is the ONLY one (don't let onc tell you the surgery you need....he/she is NOT a surgeon) that can make that decision.

2. Get a copy of your CT report. That will give you information regarding the possibility of spread.
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!
Perform random acts of kindness

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

Re: Just Diagnosed

Postby NHMike » Tue Jul 17, 2018 12:28 pm

Gloriamazz wrote:Hi. Does all this mean I am going to have a colostomy bag?

Or does it mean there is nothing the surgeon can do?

I noticed that this report is a lot lower


Your surgeon would tell you about the odds of a colostomy. I had chemo and radiation to shrink the tumor. It shrank more than 90%. The surgeon wasn't able to give me odds on a colostomy until after the radiation had done its work. After the shrinkage, she said that odds of a colostomy was 5% but she would make that decision during the surgery. I was diagnosed Stage 3B so you're in much better shape than I was in.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

weisssoccermom
Posts: 5883
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Just Diagnosed

Postby weisssoccermom » Tue Jul 17, 2018 1:55 pm

The determination of whether one needs a permanent colostomy is also based on the location of the tumor. GENERALLY, the lower down the tumor and the more the sphincters are involved....the higher the likelihood that a person will need a colostomy. Surgeons don't generally like to cut into the sphincters......the functionality of them isn't the same if they are traumatized.

Even IF the surgeon says you may need a permanent colostomy, you may have a complete response and the 'wait and watch' option may be viable in your case. Again, wait for the results of the CT and see what the surgeon says.
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!
Perform random acts of kindness

Gloriamazz
Posts: 35
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Just Diagnosed

Postby Gloriamazz » Tue Jul 17, 2018 2:47 pm

Thank you,

I called Doctors office let them know alltests were done. Doctor should be calling me this week. I will keep you abreast.

Thank you again

Gloria

Lee
Posts: 5740
Joined: Sun Apr 16, 2006 4:09 pm

Re: Just Diagnosed

Postby Lee » Tue Jul 17, 2018 3:26 pm

Gloriamazz wrote:Hi. Does all this mean I am going to have a colostomy bag?

Or does it mean there is nothing the surgeon can do?

I noticed that this report is a lot lower


You've got some WONDERFUL advice from weisssoccermon. I have a permanent colostomy and believe me, it gave me my life back. You really should seek 2nd opinion regarding this. Because there have been a lot of advancements since my surgery. Butt if it looks like this may be the best solution, really they are not that bad.

Radiation destroyed 2/3 of my rectal muscles. I was tied to the toilet for several hours once I ate anything. My only solution was not eating until I was home for the day. With 2 young kids sometimes that was not until 3 or 4 in the afternoon. When I learned what a colostomy bag was, i knew I wanted it (with my husband 100% support). I gave my surgeon carte blanc to take what she wanted, just get all the cancer. I'm a 14 yr survivor, and I truly believe this is one of the reasons why.

Today, I can eat what I want and not worry how it will effect my bowels. I can eat whenever I want and not worry where the nearest bathroom is. I've played in the ocean and go horseback riding with my bag. No ones know I have it until I tell them. I would be out on all day field trips with my son when he was young. the point is I'm in control when to use the bathroom, not my bowels.

If the surgeon's suggest your best course is the colostomy bag, know that it is going to be okay. There are many people out there with this bag, including a few famous people. You just don't know they have one.

Talking to a Ostomy nurse is a good idea if your surgeons wants you to consider it.

Good luck, know that we are here for you. You are not alone here.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!


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