Stage IIA, T3, N0, M0 rectal cancer - new diagnosis

Steven:

My experience with rectal cancer is almost identical to yours, including my questions and concerns.  If you can figure out how to search this forum for all of my posts (Airborne 72) then you can read my posts chronologically as I journeyed through this nightmare.  My initial post was in July 2017, I believe.

But, to give you some idea of my experience I will summarize.  During an annual physical exam in April 2017 I requested a colonoscopy because I had been experiencing chronic constipation and some bloody stools.  That test revealed a large cancerous tumor (stage 2). 

I underwent the neo adjuvant chemo/radiation treatment in July/August (Xeloda pills and radiation for 5+weeks).  After a few weeks of rest/recovery I underwent a resection surgery in early October 2017.  Based upon the surgeon's judgement, he placed an ileosotomy in me (high on my right side) to allow my colon ample time to heal since it appeared to have sustained some damage from the radiation.  I told him before the surgery that I trusted his judgement and authorized him to do so, but that was not what I wanted to hear when I came out of the recovery room.  Oh well.

Next, my oncologist recommended that I undergo the adjuvant chemo therapy (FOLFOX6) for 12 weeks.  I told him that I would only do 6 weeks because my hands already had been damaged from diseases (Reynauld's Syndrome and Dupytrens Contractures) and I would not accept any further medically induced damage to them.  He agreed.  However, the chemo therapy hit me so hard that my overall health was being devastated (weight dropped to 128 pounds) so I tapped out after three sessions.  My last chemo infustion was in mid December 2017.  I have had one CT scan since then and it was clear (NED = no evidence of disease).  I will have my next follow-up CT scan on 10 September (only a few days from now).

The radiation and Xeloda did not make my hair fall out.  It did cause some controllable diarheaa and fatigue, with the fatigue being the greater issue.  The adjuvant chemo did cause much greater impact (lack of energy, reduced appetite, chronic fatigue, and depression).

After I had my ileostomy reversed, I was very lucky and have not been plagued with the fecal incontinence described by others.  For about three weeks after my reversal I was not in control of my bowels, but that changed and now I do not have to wear diapers nor Depends pads.  However, my cycle for bowel movements is more frequent and occurs too often at night.  Consequently, my sleep cycle is interrupted and over time this degrades my quality of life.

Back to your basic question - what is the best course of action considering your age and stage of cancer.  With 20-20 hindsight and "my" particulars, I would not have submitted to the resection surgery.  That invasive procedure caused me more disruption than anything else.  I say this based upon the fact that after my neo adjuvant chemo/radiation my tumor was gone.  It did not show on the pre surgery CT scan nor did the surgeon see it during the resection surgery.  Afterwards, while I lay in the hospital bed with an ileostomy bag and a very sore midsection, I began to ask myself why I agreed to the surgery.

Each of us are different.  Please do not let my story be your "sole" determinant in your decision process.  Continue to ask questions and seek input from those of us who have walked this path.  By the way, I was 66 during my adventure.  Where you are in life influences your decisions.

Jim

airborne72 said:

My Similar Experience

Steven:

My experience with rectal cancer is almost identical to yours, including my questions and concerns.  If you can figure out how to search this forum for all of my posts (Airborne 72) then you can read my posts chronologically as I journeyed through this nightmare.  My initial post was in July 2017, I believe.

But, to give you some idea of my experience I will summarize.  During an annual physical exam in April 2017 I requested a colonoscopy because I had been experiencing chronic constipation and some bloody stools.  That test revealed a large cancerous tumor (stage 2). 

I underwent the neo adjuvant chemo/radiation treatment in July/August (Xeloda pills and radiation for 5+weeks).  After a few weeks of rest/recovery I underwent a resection surgery in early October 2017.  Based upon the surgeon's judgement, he placed an ileosotomy in me (high on my right side) to allow my colon ample time to heal since it appeared to have sustained some damage from the radiation.  I told him before the surgery that I trusted his judgement and authorized him to do so, but that was not what I wanted to hear when I came out of the recovery room.  Oh well.

Next, my oncologist recommended that I undergo the adjuvant chemo therapy (FOLFOX6) for 12 weeks.  I told him that I would only do 6 weeks because my hands already had been damaged from diseases (Reynauld's Syndrome and Dupytrens Contractures) and I would not accept any further medically induced damage to them.  He agreed.  However, the chemo therapy hit me so hard that my overall health was being devastated (weight dropped to 128 pounds) so I tapped out after three sessions.  My last chemo infustion was in mid December 2017.  I have had one CT scan since then and it was clear (NED = no evidence of disease).  I will have my next follow-up CT scan on 10 September (only a few days from now).

The radiation and Xeloda did not make my hair fall out.  It did cause some controllable diarheaa and fatigue, with the fatigue being the greater issue.  The adjuvant chemo did cause much greater impact (lack of energy, reduced appetite, chronic fatigue, and depression).

After I had my ileostomy reversed, I was very lucky and have not been plagued with the fecal incontinence described by others.  For about three weeks after my reversal I was not in control of my bowels, but that changed and now I do not have to wear diapers nor Depends pads.  However, my cycle for bowel movements is more frequent and occurs too often at night.  Consequently, my sleep cycle is interrupted and over time this degrades my quality of life.

Back to your basic question - what is the best course of action considering your age and stage of cancer.  With 20-20 hindsight and "my" particulars, I would not have submitted to the resection surgery.  That invasive procedure caused me more disruption than anything else.  I say this based upon the fact that after my neo adjuvant chemo/radiation my tumor was gone.  It did not show on the pre surgery CT scan nor did the surgeon see it during the resection surgery.  Afterwards, while I lay in the hospital bed with an ileostomy bag and a very sore midsection, I began to ask myself why I agreed to the surgery.

Each of us are different.  Please do not let my story be your "sole" determinant in your decision process.  Continue to ask questions and seek input from those of us who have walked this path.  By the way, I was 66 during my adventure.  Where you are in life influences your decisions.

Jim

Were you diagnosed in 2017 or 2012?

abita said:

Were you diagnosed in 2017 or

Were you diagnosed in 2017 or 2012?

Abita:

I had prostate cancer in 2009 with some residual complications from the original surgery that required even more surgical interventions.  Somewhere in there I discovered this site and joined in 2012.  My rectal cancer was diagnosed in May 2017.  Once again I found this site and tried to join.  That's when I received a message informing me that I was already a member.  Duh - I had forgotten.

The neo adjuvant chemo and radiation totally eradicated my rectal tumor but the surgeon recommended the resection because it is standard practice.  As you know, we live in a state of fear (low or high depending upon several factors) regarding recurrence, so most often we will do exactly what the medical community recommends.  As I said, with 20-20 hindsight and a sense of bravado since my cancer has not metastisized, my resection surgery caused me more lifetime disruption than any of the other treatments and my question was and is - did I really need to have the surgical procedure?

I will have a CT scan tomorrow, followed by an appointment with my oncologist on Friday.  Those of us in the stage 2 zone have only a small chance of recurrence, but still that thought (fear) moves to the forefront of our conscientiousness when we submit to these screenings.  For the next few days my sense of bravado will be "shaky" until the results are reviewed.

Jim

airborne72 said:

Clarification

Abita:

I had prostate cancer in 2009 with some residual complications from the original surgery that required even more surgical interventions.  Somewhere in there I discovered this site and joined in 2012.  My rectal cancer was diagnosed in May 2017.  Once again I found this site and tried to join.  That's when I received a message informing me that I was already a member.  Duh - I had forgotten.

The neo adjuvant chemo and radiation totally eradicated my rectal tumor but the surgeon recommended the resection because it is standard practice.  As you know, we live in a state of fear (low or high depending upon several factors) regarding recurrence, so most often we will do exactly what the medical community recommends.  As I said, with 20-20 hindsight and a sense of bravado since my cancer has not metastisized, my resection surgery caused me more lifetime disruption than any of the other treatments and my question was and is - did I really need to have the surgical procedure?

I will have a CT scan tomorrow, followed by an appointment with my oncologist on Friday.  Those of us in the stage 2 zone have only a small chance of recurrence, but still that thought (fear) moves to the forefront of our conscientiousness when we submit to these screenings.  For the next few days my sense of bravado will be "shaky" until the results are reviewed.

Jim

I think that the Total Neo-Adjuvant Therapy trials are even for Stage 3 patients. The additional percentage that avoids surgery is small (8%) but that translates to a lot of real people.

Have you tried Imodium for sleeping through the night? One pill seems to shut me down from 24 to 36 hours. I might try half a pill.

jonesy2315 said:

Words of wisdom

Hey Mountainhiker

 

I was recently diagnosed with pretty much exactly what you described, the one day at a time comment from your nurse resonates with me now. I've done enough depressing reading, ie: stats etc, I avoided doing it until the shock wore off, which has happened and now I'm ready to join my surgeon and oncologist in the battle ahead. I don't know where to start on this forum regarding chats or discussions, I'm glad I found this forum, hopefully I can contribute and learn here. Not really saying much here I don't think...maybe I'm not quite over the shock yet. Have you now started chemo ? I apologize if I could have found this info out elsewhere but it's late and I'm quite tired, I suppose I'm just looking to speak with people who understand what it is I'm going through. 

Thanks

Jonesy

 

Here is the forum home page.  A great place to post a new thread and introduce yourself

https://csn.cancer.org/forum/128

You have found the right place for support. We all know the ins and outs, and we're all willing to learn and to share what we have learnt. 

Look forward to seeing your posts.

Tru

I did not really have any horror stories from radiation but I did have some pretty painful anal issues from radiation burns and from lack of anal control.  In addition to darcher's post, I bought a simple cold water bidet to install on my toilet (about 50 bucks)  and I built a "squatty potty).  This platform for my feet while sitting on the toilet really helped make my bowel movements easiser with much less straining.  This seemed to help to keep the hemmoroidal inflamation down some.  The best thing for the anal pain and irritation was a hydrocortisone cream along with a lidocane cream.  I would mix the two and apply to the anal area and this would do two things, 1. reduce inflammation and 2. numb the area for awhile.  while not a permenant fix by any means, it sure helped me cope with the nearly constant pain in and around my anus. 

TIm

BTW darcher, you are not alone with the whole lack of ejaculation thing.  I have the same issue and it has been over two years since my radiation therapy.

Reshma said:

Chemo and targeted therapy

I had colon surgery and liver surgery and chemo. Recurrence in liver last year November.  Microwave ablation and the tumours in the liver  just became more vicious.  MRI Scan revealed more tumours. Doc says no hope for another liver resection. Treatment options panitumamab but its a scheme exclusion so medical aid will not pay. Other option keytruda immunotherapy but medical aid does not pay for that either costing R1.8 m. He had put me back on Erbitux with xeloda. But he does not have much hope. Don't know what to do anymore. just  living each day without much hope. 

I am sorry to read about your prognoisis, but please, don't give up, because there is always hope. 

Here is the link to the forum home page.https://csn.cancer.org/forum/128 .  PLEASE post there and introduce yourself. Let people know you fears, copy and past your post from here, if you want.

We really want to help you face this journey. We will help you find that hope.

Tru 

I had no issues with radiation. If it's rectal, I think you'll be lying on your tummy so less tissue will be damaged. I'd do radiation over chemo any day. What helped me was that my radiation was in Feb/March and it was still cold out and after I'd get into my car with leather seats and I think the cool seat helped to reduce the burn because I never had any burns. My tumour was low but not quite in the rectum so I had to lie face down during radiation. 

The radiarion is really quick and there's no pain during it. It takes maybe a couple of minutes from the time they get you positioned. I already had an illeostomy so I didn't worry about incontinence. 

For nausea, I've tried a very expensive anti-nausea drug designed for people on chemo which does nothing for me, also a CBD/THC pill that's supposed to combat nausea but doesn't help, and now I just take Gravol and it works great, ironically.

Try to stay off pf Google and look at stats. They're depressing and not necessarily accurate. They can be outdated and everyone's cancer journey is different. I'm coming up to five years post diagnosis and intend to be here for a long time. I was diagnosed at stage three and am now stage four due to mets in one lung. I will be in maintenance chemo for life to keep the lung tumours at a safe size but my onc thinks they'll never actually be gone. I'm okay with it. My quailty of live isn't what it was but it's acceptable. I had surgery recently and previous to it they figured I had mets in my liver as well and that the cancer had progressed in my abdomen. It turned out that neither is true. They opened me up and went through everything carefully and took out any bowel that looked like it might give me grief in the future so my quality of life should imptove once I fully recover from the surgery.

Good luck! We're here for you and the other new membrs who have posted on this thread.

Jan

mozart13 said:

was easy!

I had 25 sessions of chemo/rad, was breeze. Was T1T2N0M0 RC, got completlly erased with chemo/rad.

Avoided antioxidants during chemo, protein diet was my main diet,kept active. Would eat before taking xeloda, no issuess there.

Almost 2 years negative , finished so now call TNT, didn't need surgery, never looked back.

Good luck!

 

Where were your tumors? I have been hoping that it is possible that my 2 small lesions that I got as recurrence in liver can be gone with just the chemo