pT1/pT2 What option to take?

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Ezyrider
Posts: 3
Joined: Thu Jun 17, 2021 9:23 am

pT1/pT2 What option to take?

Postby Ezyrider » Thu Jun 17, 2021 10:01 am

Hi All,
Im new to the Colon Club, I need to make a decision on my treatment and I am looking into medical literature and trying to make a best course decision, accounting I am 45 years old male, with 3 young children and looking to have to find a new partner, as current relationship is already out of whack and unsaveable.

My aim is to have the best possible quality of life, valuing that I would like to see my children grow up, but I don't want to have a miserable life. I think I can take a challenge and adapt to circumstances, and have a positive outlook on life, although I am already a lowner and worried that I might isolate my self if certain conditions occur during my treatment. I am also prepared to change my diet, my exercise platform (currently running 5km daily), and look into my emotional life to fully go deeper into the meaning of this desease.

I have the following options to choose from, and I would like to hear from other people's stories. I am very wary of Radiation.

I have been diagnosed with a T1/T2 Rectal cancer, N0 and M0. Size is approximately 2-3cm, and around 3 cm from my anus.

I currently have three options on the table.

1. Do a 5 Day high dose radiation followed by an 8 week stand by and the carry out a TEMS. Seems High Dose Radiation has less of a short term effect, but same long term effects than longer lower dose radiation.
2. Carry out a TME and have a colostomy. Golden Standard Solution.
3. Carry out a local excision, and carry out a pathological study and then take either a no further action, local radiation or a full TME with a collostomy. This is with a different Surgeon.

In both 1 and 3, I would have an intensive follow up every 3-4 months for the following 3-5 years.


I spoke to th e Oncologist and he was higly reserved with option 3, informing me how some patients had suffered greatly from takin this approach as the cancer could extend and there is no treatment for those cancer patients. I


Can anyone share their story or point me to others who have had to go down this road?
21st April 2021 - Colonoscopy Indicates Potential Rectal Cancer.
22nd April 2021 - Biopsy Confirmed out of 9 Fragments, in at least 2 fragments surrounded by desmoplastic stroma consistent with adenocarcinoma.
5th May 2021 - CT Scan : Primary Rectal Lesion not well assesed. No nodal or metastatic disease.
19th May 2021 - MRI Scan: T1/T2 polypoid lession in the lower recutm. No nodal disease identified.
24th May 2021 - UT Scan: Surgeon "thinks" is just invading the MP thus just a pT2.

Phillypatient
Posts: 42
Joined: Sun Aug 05, 2018 11:28 am

Re: pT1/pT2 What option to take?

Postby Phillypatient » Fri Jun 18, 2021 9:53 am

Have you considered the watch and wait option

https://www.mskcc.org/clinical-updates/ ... r-patients

MSK is leading a large study on this. Others on this board may chime in. I had the surgery and have found it quite life altering to be honest.

Good luck
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

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Green Tea
Posts: 421
Joined: Mon Oct 24, 2016 10:48 am

Re: pT1/pT2 What option to take?

Postby Green Tea » Fri Jun 18, 2021 1:59 pm

Ezyrider wrote:Hi All, I'm new to the Colon Club, I need to make a decision on my treatment...

Hello Ezyrider-

Welcome to the club!

Before drafting a reply to your message I would like to ask a few questions:
  • When is your deadline for making a decision on your treatment?
  • Are you willing to consider any options other than the three that you mentioned?
  • Where are you located? (i.e., which country/region?)
Thank you.

Ezyrider
Posts: 3
Joined: Thu Jun 17, 2021 9:23 am

Re: pT1/pT2 What option to take?

Postby Ezyrider » Sun Jun 20, 2021 3:01 am

[color=#00FF00]Hi Green Tea,

HEre is my reply to your questions.


Before drafting a reply to your message I would like to ask a few questions:
  • When is your deadline for making a decision on your treatment?
    [color=#00FF40]Currently no deadline, as the oncologist has said it is growing slowly, but I should reach a decision by this week, from a pragmatic position, to get the treatment going.[/color]
  • Are you willing to consider any options other than the three that you mentioned?
    Potentially yes, I am open to other options.
  • Where are you located? (i.e., which country/region?)
I am in UK

Thank you.
Thank you too
21st April 2021 - Colonoscopy Indicates Potential Rectal Cancer.
22nd April 2021 - Biopsy Confirmed out of 9 Fragments, in at least 2 fragments surrounded by desmoplastic stroma consistent with adenocarcinoma.
5th May 2021 - CT Scan : Primary Rectal Lesion not well assesed. No nodal or metastatic disease.
19th May 2021 - MRI Scan: T1/T2 polypoid lession in the lower recutm. No nodal disease identified.
24th May 2021 - UT Scan: Surgeon "thinks" is just invading the MP thus just a pT2.

Ezyrider
Posts: 3
Joined: Thu Jun 17, 2021 9:23 am

Re: pT1/pT2 What option to take?

Postby Ezyrider » Sun Jun 20, 2021 3:04 am

Phillypatient wrote:
MSK is leading a large study on this. Others on this board may chime in. I had the surgery and have found it quite life altering to be honest.

Thanks for your input, can you elaborate with the surgery ? Do you mean the LAR has impacted you quite negatively or you are coping ok?

Good luck
21st April 2021 - Colonoscopy Indicates Potential Rectal Cancer.
22nd April 2021 - Biopsy Confirmed out of 9 Fragments, in at least 2 fragments surrounded by desmoplastic stroma consistent with adenocarcinoma.
5th May 2021 - CT Scan : Primary Rectal Lesion not well assesed. No nodal or metastatic disease.
19th May 2021 - MRI Scan: T1/T2 polypoid lession in the lower recutm. No nodal disease identified.
24th May 2021 - UT Scan: Surgeon "thinks" is just invading the MP thus just a pT2.

User avatar
Green Tea
Posts: 421
Joined: Mon Oct 24, 2016 10:48 am

Re: pT1/pT2 What option to take?

Postby Green Tea » Sun Jun 20, 2021 1:51 pm

Ezyrider wrote:Hi Green Tea,

Here is my reply to your questions.


Before drafting a reply to your message I would like to ask a few questions:
  • When is your deadline for making a decision on your treatment?
    Currently no deadline, as the oncologist has said it is growing slowly, but I should reach a decision by this week, from a pragmatic position, to get the treatment going.
  • Are you willing to consider any options other than the three that you mentioned?
    Potentially yes, I am open to other options.
  • Where are you located? (i.e., which country/region?)
    I am in UK
Thank you.
Thank you too

OK, I think I understand.

Your tentative diagnosis seems to be Stage 1, T2N0M0, Rectal Cancer with a 2cm-3cm tumor located 3 cm from the anal verge (AV). The three options that you have been given are shown below, and your objective, as I understand it, would be to eliminate all cancer while retaining a good quality of life (QOL).

    Your options
  1. Do a 5 Day high dose radiation followed by an 8 week stand by and then carry out a TEM [Transanal Endoscopic Microsurgery]. Seems High Dose Radiation has less of a short term effect, but same long term effects than longer lower dose radiation.
  2. Carry out a TME [Total Mesorectal Excision] and have a colostomy. Golden Standard Solution.
  3. Carry out a local excision, and carry out a pathological study and then take either a no further action, local radiation or a full TME with a colostomy. This is with a different Surgeon.
Although a slow-growing Stage 1 tumor is normally easy to deal with successfully, the fact that your tumor is only 3 cm from the anal verge presents a major challenge. If the tumor is removed by a Total Mesorectal Excision (the Gold Standard for rectal tumors), then this would likely be a ULAR (Ultra Low Anterior Resection) procedure, which would be very difficult to achieve with clear margins without cutting into, or damaging, the internal sphincter muscle or the levator ani muscles which would be very close to where the tumor is located. See the diagram below which shows where the sphincter muscles are generally located with respect to the anal verge:
Diagram of Anal Canal/Rectum

Given that you would like to start treatment soon and still retain good QOL, I think that your first option might be the best. Also, this option could be modified somewhat to allow a Watch-and-Wait decision to be made at the end of the 8-week rest period. In other words, you could start the treatment as planned but when the 8-week pause is finished they could test whether or not the tumor has been completely eradicated. (The tests would involve a combination of clinical examination, pelvic MRI / pelvic CT scan, endoscopy, ultrasound scan and biopsy.) If the tests show that the tumor has been completely eradicated, then you could cancel the planned TEM procedure and then follow the standard protocol for Watch-and-Wait as Phillypatient has suggested. This would allow you to avoid surgery -- at least for the time being.

Phillypatient
Posts: 42
Joined: Sun Aug 05, 2018 11:28 am

Re: pT1/pT2 What option to take?

Postby Phillypatient » Sat Jun 26, 2021 6:36 pm

Ezyrider wrote:
Phillypatient wrote:
MSK is leading a large study on this. Others on this board may chime in. I had the surgery and have found it quite life altering to be honest.

Thanks for your input, can you elaborate with the surgery ? Do you mean the LAR has impacted you quite negatively or you are coping ok?

Good luck


I also had a low tumor and a ULAR. And yes, it did impact me quite negatively. It’s so impactful that the head colorectal surgeon at MSK is leading the study to find a non surgical alternative.

If I recall, there is a member here that had an transanal excision and her quality of life has been quite good.
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

User avatar
Green Tea
Posts: 421
Joined: Mon Oct 24, 2016 10:48 am

Re: pT1/pT2 What option to take?

Postby Green Tea » Sat Jun 26, 2021 11:19 pm

Phillypatient wrote: ...
I also had a low tumor and a ULAR. And yes, it did impact me quite negatively. It’s so impactful that the head colorectal surgeon at MSK is leading the study to find a non surgical alternative.

If I recall, there is a member here that had an transanal excision and her quality of life has been quite good.

weisssoccermom
Posts: 5979
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: pT1/pT2 What option to take?

Postby weisssoccermom » Sun Jul 04, 2021 6:15 pm

I just saw this post so I have no idea what, if any, decision you have made. If you look at my signature, I chose what appears to be pretty close to what you refer to as option 3. I did 28 days of radiation followed by more chemo...and had my excision 8 months later. There were a few bumps along the way...most notably a hospilitazation for a dozen or so blood clots...caused by a combination of a birth control pill called YAZ and chemo.

I've been cancer free since 2007 and I don't regret for one minute the decision I made. I had to fight and fight for even the chance to have a surgeon consider the excision option. We're talking 15 years ago and TME/LAR was then and still is the Gold Standard. Had it not been for the concerns about my QOL with respect to LAR I would have been a compliant patient and would not have ever questioned anything. Is my choice right for everyone? No and I would never push it on anyone. I did a lot of investigating and reaching out...in fact my first "reaching out" was to Dr Habr-Gama and from there, her 'protégé in the USA ...a surgeon in Pittsburgh named Dr David Medich. I emailed both and they responded, sent me info on their data...and I am eternally grateful for their help.

You are very lucky to have even been given the choices that you have gotten. 15 years ago, surgeons basically dismissed you if you even brought up the subject of excision. My surgeon who eventually operated on me only did so after trying to "sell me " on thr LAR. She eventually caved because as she said..I didn't my homework, was informed and had a plan if the biopsy results from the excision came back I'm an unfavorable way. I also had to agree to a meticulous and thorough follow up schedule that would last for at least 5 years.

You have to be comfortable with whatever you choose...no one can make or should they the decision for you. You can always go for a more expansive surgery but you can't go the other way. I know how hard it is to make this decision...as I said earlier...at least you are in the position to have choices. Trust your gut.

Best of luck.
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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