Quick intro -- diagnosed Friday

[Zackattack]

Hi All,

I just wanted to write and say that I understand that my worries and fears seem to be less warranted than most of the rest of you and I'm sorry if anything i'm saying is insensitive as I'm coming to terms with where I actually stand. I know that I'm extremely lucky to be given the current diagnosis.

So glad it’s not more serious than a noncancerous cyst and a kidney stone; thrilled that your wife and baby are doing well. Kudos to you for keeping your head through the fear and anxiety

Thank you jmn -- I really appreciate the well wishes and glad to hear your care at MSK are top notch. I'll keep in touch as we both seem to be in the NY area (Huntington here) I am feeling more positive each day that passes that this can and will be contained. In a few hours I will get the second opinion @ Mt. Sinai. Current hope is that after surgery (if recommended) that my Lymph nodes are deemed clear.

First, congratulations on the baby. New additions to the family are such a special and exciting time.

The wife and baby (en route) give me all the hope and strength I need to overcome the fears of surgery and the scary road ahead.
It sounds like we both found out very recently -- hope to hear good update on your end.

[Zackattack]

The Mt. Sinai Dr. believes TAMIS is on the table.

She can reach to the location using the tools, approx 12cm from Anal Verge.
If I go this route, a 2cm area all around, and through the rectum would be resected and sewn back together. Due to my low risk factor (shape of the tumor/genetic/etc) my risk of lymph node invasion if the biopsy shows T1 depth, then she'd say we're good here and monitor me for the next many years.

If it shows T2, then the TME would have to be done.

TAMIS is much less invasive and quick recovery, but it will ignore the swollen lymph node (and all of them). I understand that my odds are low of this but why is the lymph swollen regardless right now...

I'm slightly leaning TME because it sounds like one surgery vs two. I'm super afraid they'd miss a lymph and the next 3 years i'd be freaking out over the chance it will spread to lungs or liver.

What's your opinions? 17mm, blobby, less than 1mm clear margins. No Lynch, etc. Moderately diff cells. Questionable lymph node size.

[NHMike]

The Mt. Sinai Dr. believes TAMIS is on the table.

She can reach to the location using the tools, approx 12cm from Anal Verge.
If I go this route, a 2cm area all around, and through the rectum would be resected and sewn back together. Due to my low risk factor (shape of the tumor/genetic/etc) my risk of lymph node invasion if the biopsy shows T1 depth, then she'd say we're good here and monitor me for the next many years.

If it shows T2, then the TME would have to be done.

TAMIS is much less invasive and quick recovery, but it will ignore the swollen lymph node (and all of them). I understand that my odds are low of this but why is the lymph swollen regardless right now...

I'm slightly leaning TME because it sounds like one surgery vs two. I'm super afraid they'd miss a lymph and the next 3 years i'd be freaking out over the chance it will spread to lungs or liver.

What's your opinions? 17mm, blobby, less than 1mm clear margins. No Lynch, etc. Moderately diff cells. Questionable lymph node size.

Very hard decision. I'm living with LARS right now and it can be very hard - depends on the patient and circumstances.

After having been through several surgeries, I would focus on 1) Getting all of the cancer out and 2) Quality of life afterwards. I would personally prefer more surgery or more invasive surgery if it had meant taking care of both issues.

So I'm asking: can they do a more invasive surgery to guarantee that the cancer is gone and that you will have minimal quality-of-life issues afterwards? I am assuming that you don't have any co-morbidities that would complicate surgery.

[Zackattack]

After having been through several surgeries,

Thanks Mike for the response, much appreciated.
What sort of symptoms do you have after LARS? I'm super worried about the long term effects. I'm 36, thin but fit, no other health conditions. Tumor was located 12-15cm from anal verge so bathroom function shouldn't be affected too much.

The Dr belives 85% chance they already got the cancer out but wants to TME to just be 100% sure it's not into lymph (as it's swollen) as unlikely as it is.
The more invasive surgery to guarantee 95+% is the TME.
The TAMIS is around the 4% reoccurance, but the wildcard is really the lymph node (0-6%). I don't want a surprise 3 years from now that it found its way to my liver or lungs because I went TAMIS...thoughts?

[NHMike]

After having been through several surgeries,

Thanks Mike for the response, much appreciated.
What sort of symptoms do you have after LARS? I'm super worried about the long term effects. I'm 36, thin but fit, no other health conditions. Tumor was located 12-15cm from anal verge so bathroom function shouldn't be affected too much.

The Dr belives 85% chance they already got the cancer out but wants to TME to just be 100% sure it's not into lymph (as it's swollen) as unlikely as it is.
The more invasive surgery to guarantee 95+% is the TME.
The TAMIS is around the 4% reoccurance, but the wildcard is really the lymph node (0-6%). I don't want a surprise 3 years from now that it found its way to my liver or lungs because I went TAMIS...thoughts?

Mine was 5 CM and I am to some extent disabled. I have to spend a fair amount of time in the bathroom unless I fast. I typically fast three days a week in order to be functional at the office.

Can they determine whether or not it's cancerous by removing the lymph node and then doing a tumor analysis on it? They could do that with me (three suspicious lymph nodes) because I had radiation first and they couldn't tell after the radiation as it had shrunk the tumor (and, I'm assuming any potential tumors in the lymph nodes) by 90%.

Is a TME the removal of the whole rectum?

The rectum is a buffer and accumulates waste until it is convenient to go to the bathroom. Not having a rectum means that things come out as they're processed through your GI tract. This can mean spending a lot of time in the bathroom or waste coming out when a bathroom isn't convenient. There are various ways that people deal with this.

[Zackattack]

The Mt Sinai Dr called tonight to let me know that after she ran a better pathology report on it, it was found to be SM3. Not possible or safe to do TAMIS. She was surprised that depth wasn't mentioned on the original.

TME it is. Have to pray that no lymphovascular invasion. It was uncertain on the new pathology. I'm scared and worried. Seemed like almost for sure stage 1 and now it's 50/50 1 or 3.

One day at a time...

She wanted me to come in tomorrow to have the remaining clips removed and do an MRI. I would have regardless gone to Sloan Kettering for the TME and treatment. This Mt. Sinai Dr Is great but MSK has quite the great reputation.

Sounds like 20-50% chance of lvi right now.

Mike-- from My understanding it would only be a partial resection and I would just probably have to use the bathroom more frequently. Maybe some sexual distinction. I'm okay with this but this is the first piece of not positive news in this crazy week. Sorry to hear about your disabilities but hey man, if we can overcome it, it's all worth it. Keep up the good work my dude

[NHMike]

The Mt Sinai Dr called tonight to let me know that after she ran a better pathology report on it, it was found to be SM3. Not possible or safe to do TAMIS. She was surprised that depth wasn't mentioned on the original.

TME it is. Have to pray that no lymphovascular invasion. It was uncertain on the new pathology. I'm scared and worried. Seemed like almost for sure stage 1 and now it's 50/50 1 or 3.

One day at a time...

She wanted me to come in tomorrow to have the remaining clips removed and do an MRI. I would have regardless gone to Sloan Kettering for the TME and treatment. This Mt. Sinai Dr Is great but MSK has quite the great reputation.

Sounds like 20-50% chance of lvi right now.

Mike-- from My understanding it would only be a partial resection and I would just probably have to use the bathroom more frequently. Maybe some sexual distinction. I'm okay with this but this is the first piece of not positive news in this crazy week. Sorry to hear about your disabilities but hey man, if we can overcome it, it's all worth it. Keep up the good work my dude

The disability is just a challenge and I have no choice but to deal with it.

It sounds like you have a plan and will go from there. I would agree on getting the surgery done at a top hospital.

Partial definitely sounds better than total. Best of luck on going forward.

[ANDRETEXAS]

Sounds like you are doing all you can do. Stay positive and stay strong, but also stay vigilant. I had a colonoscopy in 2008, was given a clean bill of colon health and told to come back for my next one in 10 years. I was diagnosed with Stage 3 colon cancer in 2013....flat cancerous polyp in my cecum. Must have missed it in 2008. Don't let anything abnormal like bleeding go without finding out what the problem could be. Remember the old saying...an ounce of prevention is worth a pound of cure. All the best....Andre

[KathyLynn]

I had one lymph node that was enlarged. They can do a procedure to look at the lymph. Also, they could see how deep the tumor was. Mine was negative for the lymph node and they could see it was a T2 from the procedure
I can’t think of the name, but I’m sure someone here will know the name of the procedure. Or it will come to me, lol. So from there I had robotic LAR and was good to go.
Maybe this is something you could consider?

KathyLynn

[jmn]

Stay positive and stay strong, but also stay vigilant.

Zack, I think Andre is spot-on about staying positive and strong AND staying vigilant.

After my resection surgery last July, pathologists at a local community hospital identified no high-risk factors. My local oncologist therefore recommended surveillance and no further treatment. However, when I asked Memorial Sloan Kettering to analyze my tumor specimen, their pathologists arrived at a very different diagnosis. They identified several high-risk factors, which prompted Dr. Leonard Saltz, my MSK oncologist, to start adjuvant chemotherapy right away. The good news is that I finished chemo in April, had my NED status confirmed in May, and had a clear colonoscopy two weeks ago.

I am convinced that we need to be vigilant and advocate for ourselves. For me, it was all about gaining greater peace of mind by doing my due diligence, understanding my diagnosis, considering the risks and benefits of treatment options, and choosing a treatment plan that was best for me.

[Zackattack]

also stay vigilant.

Hi Andre--thanks for the advise. I will stay strong and vigilant. I'm not one to take my health lightly and my wife thought i was being a hypochondriac the for the 6-12 months leading up to the colonoscopy. Glad that I finally did it though I REALLY wish I did it a year sooner.

advocate for ourselves.

I agree completely and thank you as well. I will be at MSK and will stay on top of this whilst doing research and following up as recommended. If the TME surgery removes the lymph nodes and finds there is no lymph-vascular invasion or cancer in any lymph nodes - Stage 1 -- no mop up Chemo typically, right? I just want to ensure that there is NOTHING residual anywhere, even if it means 3 months of feeling ill but assume they won't do any chemo if so.

KathyLynn -- thanks for the response. The surgery you are referring to I believe is TAMIS - which is completely off the table at this point due to the new pathology report showing sm3 depth.

[jmn]

If the TME surgery removes the lymph nodes and finds there is no lymph-vascular invasion or cancer in any lymph nodes - Stage 1 -- no mop up Chemo typically, right?

Right.

[ANDRETEXAS]

I'm not a hypochondriac, but I now go to the doctor when something is not right with my body, unless it's something I know can be healed with time (i.e. a strained muscle), I go to my GP and discuss it. If it turns out to have a simple solution, so be it. I'm not going to let it go. This point was clarified for me during my chemo regimen. I had finished my chemo with the help of a wonderful oncologist. We discussed my side effects and problems before each session. In early 2016, I was returning for a regular follow-up when I learned my oncologist had taken a leave of absence. Six months later he died of pancreatic cancer at the age of 42. He may not have had symptoms, but I will no longer ignore symptoms and now always have my annual physical. It's in tribute to my oncologist. He helped save my life. I owe it to him and ME.

[Jolene]

Sounds like you are doing all you can do. Stay positive and stay strong, but also stay vigilant. I had a colonoscopy in 2008, was given a clean bill of colon health and told to come back for my next one in 10 years. I was diagnosed with Stage 3 colon cancer in 2013....flat cancerous polyp in my cecum. Must have missed it in 2008. Don't let anything abnormal like bleeding go without finding out what the problem could be. Remember the old saying...an ounce of prevention is worth a pound of cure. All the best....Andre

In the beginning, I thought all colonoscopy are the same as it's considered "general surgery" where I am from until my onc mentioned that it actually takes skills and experience for someone to do a thorough scope, recognize sinister appearances and not actually miss out on anything hiding the corners of the colon.

Basically, not all colonoscopy are the same ! I would advise everyone where possible, try to get to a colorectal specialist to do it instead of a general doctor. I understand that there are doctors of different specialty who offers colonoscopy services as an extra income on the side ! I have come across breast and hernia specialist offering colonoscopy. I would like to think that someone looking up my colon should have years of experience with the colon instead of breast or hernia.

Sorry to hear about the possibility of yours getting missed in 2008 but I hope all is going well for you and it looks like it from your signature !

[NHMike]

Sounds like you are doing all you can do. Stay positive and stay strong, but also stay vigilant. I had a colonoscopy in 2008, was given a clean bill of colon health and told to come back for my next one in 10 years. I was diagnosed with Stage 3 colon cancer in 2013....flat cancerous polyp in my cecum. Must have missed it in 2008. Don't let anything abnormal like bleeding go without finding out what the problem could be. Remember the old saying...an ounce of prevention is worth a pound of cure. All the best....Andre

In the beginning, I thought all colonoscopy are the same as it's considered "general surgery" where I am from until my onc mentioned that it actually takes skills and experience for someone to do a thorough scope, recognize sinister appearances and not actually miss out on anything hiding the corners of the colon.

Basically, not all colonoscopy are the same ! I would advise everyone where possible, try to get to a colorectal specialist to do it instead of a general doctor. I understand that there are doctors of different specialty who offers colonoscopy services as an extra income on the side ! I have come across breast and hernia specialist offering colonoscopy. I would like to think that someone looking up my colon should have years of experience with the colon instead of breast or hernia.

Sorry to hear about the possibility of yours getting missed in 2008 but I hope all is going well for you and it looks like it from your signature !

I went into the ER and they found the mass and I was in luck as a GI doctor was doing colonoscopies that day and he had an opening. I was out for the colonoscopy. The GI doctor was basically my doctor and organized oncology and radiation for me. So I did have a specialist. I didn't know that general surgeons did this as well. This guy was voted best doctor in my state and received an offer to become Chief Medical Officer at a local hospital later on.

My colonoscopy this year was done a Brigham and Womens in Boston. I asked my surgeon and she referred me to someone who works in her hospital and I think that all she does is colonoscopies. They do them in an assembly line in Boston.

I'm somewhat surprised that there are non-specialists but there may be parts of the country where you don't have a large number of specialists.