neoadjuvant chemoradiotherapy

I too had chemo radiation to address at T2N0M0 low rectal tumer (6 cm from anal verge).  I also had a complete clinical response to treatment which was 28 radiation doses and chem of 5FU administered thru a portable infusion pump for 24x7.  Had LAR surgery in April and pathology revealed I was now T0N0M0.  My research showed favorable results in shrinking tumors and/or having a complete response in many cases.  My dr. felt it was worth it to at least shrink the tumor to give more space to work and prevent permenant colostomy.  I have a temp ileostomy now to allow healing of the connection.  Expect reversal in about 3 months or so.  I still had to go thru LAR as the only way to absolutely know the stage and if LN impacted.  Simple excision would have left doubt about LN's.  A lot to consider, but am glad I went the path of pre chemo/rad to address the tumor.

Scott

Chickspeed said:

I don't want to push my luck

I don't want to push my luck with questions but could I ask what your timelines were from discovery to where you are now in treatment.

I sometimes get the idead that things should be moving a little faster, but then I am the one feeling the urgence of having the tumour.

Would it bother anyone if I posted my total experience so far?

Most of us post our stories on our profile page, so others can easily check the details and progress. You just click on our blog name. If you want to put it all down for present and future reference, click on your name and go to the "about me" subtitle.........................Dave

Chickspeed - I waw Dx 10/2016 thru routine colonoscopy (had turned 50 last year). No symptoms.  Started Chemo/Rad mid December and wrapped that end of January.  LAR was late April.  My colonoscopy dr. said at the time that I would be in for a challenging year...and he was right.  I too was eager to move things along, but needed to get consults, see some surgeons, understand treatments, etc.  Lots to consider and options as well as self education.  My big considerations were to do chemo/rad or not and to go LAR or APR.  In an effort to ensure greater success and syphincter sparing we pursued LAR but with pre chemo/rad to shrink tumor.  I also could have done an excision of the tumor, which would have been thru anus and less impactful, but risk of recurrance (local/distant) and unkowns on LN were not something I could live with... I needed to know.  If positive on LN I would have then done a clean up round of chemo...which thankfully was not needed.  Right now in recovery mode and focused on reverals of the ileostomy.  You will get thru this...take it one step at a time and educate yourself as much as you can.  I think I read every study on these treatments by the time I got to the surgery.  Its not easy, but you can get thru it...stay positive and best of luck!!

Scott

Please ask as many questions as you want. It's helpful for other people, too. I think sometimes people check these forums and might never post or join but are able to get information they need. Hearing what's happened in another survivor's life is much more helpful than just getting info from your onc who has not likely had it and only hears what other patients tell them in the limited amount of time they're in their office. And they likely never discuss the day to day questions and how to live with this.

And I agree about posting your story on your personal information page. I've never read anybody else's but some people do and, if they want to know your story, then it's right there. Mine was pretty long and I hate going over it again but I've brought up parts of it to add to something I'm saying, so that it has context.

I didn't get surgery until almost 6 months after diagnosis because he wanted to shrink the tumour as much as possible with radiation and chemo. And I had to get a port and an illeostomy not long after diagnosis as well. The illesotomy was because he was scared my tumour would grow enough to block my colon off completely. And while a tumour is undergoing radiation it swells up before it shrinks. Mine was the size of a large chicken egg when it was removed.

Jan

It is very overwhelming.  Sounds like the course of treatment is appropriate for what you state, but again everyone is different.  From my standpoint the gold standard was LAR surgery and pre chemo radiation.  At this time that seems to be the best avenue given your  TNM scoring.  Your dr's are right in that final pathology is what really determines staging and any next steps wtih chemo, etc if needed.  I felt things moved quickly, but it was still about 6 months from Dx to surgery.  And its not really  a one and done...I have ileostomy reversal coming and all that can bring...i.e. LAR syndrome.  Need to take it day by day and keep on fighting.

6 months between diagnosis , with chemo/rad in between, than surgery is about right, that would've happen to me, if I didn't have full response. I did psych myself for surgery, but once mentioned no need, no way anybody would drag me to the OR.

Re-staging would give you some answers, about your response to theray, but the surgery is definitlly the best known approach at this time.

Good luck!

JanJan63 said:

Please ask as many questions

Please ask as many questions as you want. It's helpful for other people, too. I think sometimes people check these forums and might never post or join but are able to get information they need. Hearing what's happened in another survivor's life is much more helpful than just getting info from your onc who has not likely had it and only hears what other patients tell them in the limited amount of time they're in their office. And they likely never discuss the day to day questions and how to live with this.

And I agree about posting your story on your personal information page. I've never read anybody else's but some people do and, if they want to know your story, then it's right there. Mine was pretty long and I hate going over it again but I've brought up parts of it to add to something I'm saying, so that it has context.

I didn't get surgery until almost 6 months after diagnosis because he wanted to shrink the tumour as much as possible with radiation and chemo. And I had to get a port and an illeostomy not long after diagnosis as well. The illesotomy was because he was scared my tumour would grow enough to block my colon off completely. And while a tumour is undergoing radiation it swells up before it shrinks. Mine was the size of a large chicken egg when it was removed.

Jan

Hi Jan, My name is Brad here in New Jersey, Great photo of both you and your beautiful horse!  I read your post and just wondring what you went through and I wanted to hear about your surgery.  I have rectal cancer stage 2-3 withT3 in the lower rectum which is the worst place becuase surgery can have consequences.  I went to the top hopsital here in NYC, Sloan Kettering and was seen by the Chief of colon rectal surgery.  After evalauation, he is suggesting that we try to save the rectum by doing chemo/radiation treatments to try and totally eliminate the mass.  This is his goal. Surgery even with the best Da Vinci robotic device, I risk having a bag or even if surgery is a success, he did say I would have bowel contol issues for the rest of my life, meaning, urgency to go, going often etc...Please tell me about your experience and what your surger entailed.

I hope to hear from you.  Brad, 51 in New jersey

Chickspeed said:

I will be 6 months and 5 days

I will be 6 months and 5 days from discovery via colonoscopy to LAR surgery June 20. I have never had surgery and I am feeling a little uneasy about it. Both the radiation and medical oncoogist have stated i caught it early and they are taking curative aproach. I am uneasy over the MRI report saying I have three larger than normal LN's but the oncologist say they anticipate shrinkage after chemoradiation and it could be infection causing the enlargement. thats why they chose to call them Nx in the clinical report.

I read in a couple papers on the internet that low pretreatment CEA levels play a roll in prognosis?

My name is Brad, I am 51 just discovered 3cm mass in lower rectum, and I went to Sloan Kettering the top rated cancer hospital in NYC and the world, and they suggested, to try and save rectum by doing chemo/radiaiton to see if it totally disappears.  Another surgeon at a diffrent facilty wants to radiation then chemo followed up by surgery.  All of this is confusing to me, tell me about your story and surgery.  Surgery is my fear, Sloan Kettering told me, that I risk of having a bag and if they can re-connect me, I will have bowel control issues for the rest of my life..meaning, I might have to go very often and at any time or may not go for a day or two...tell me about your story.  Where are you from?