Can Chemo/radiation eradicate tumor?

Bradnjerzee

I have been diagnosed with rectal cancer 3cm, stage 2/3 T3 low rectum, 5cm from anal verge.  I went to Sloan Kettering in NYC and spoke to the Chief of colonrectal surgery.  He felt with surgery, he coould connect me together, BUT I would have inconsistent bowel movements for the rest of my life, meaning, I may be in bathroom 10x one day, 1 day the next, etc...He enrolled me in a nationwide trial to try and save the rectum and eliminate the tumor completly.  This involves chemo/radiation togehter followed by chemo only.  Could take up to 6 months and feels this is the best chance to save the rectum without surgery.  If this works, they would monitor and watch if growth retuns.  Has anyone had such luck?  My other surgeon in NJ, wants to do radiation followed by chemo followed by surgery in October.  He didn't tell me his idead for surgery.  I'm 51 and dont want a bag or bowel issues for the rest of my life!    Has anyone heard of this clinical trial to emliminate tumor without surgery?

mozart13

Yes it can!

Mine was eradicated by chemo/rad.

2 months after, my surgeon did re-staging, every thing came back negative, colonoscopy, MRI, CT.

Started chemo folfox in April, every 2 weeks, 10 rounds planned, had 6 so far with some delays beceause of blood results in the boots.

This is much better approach than previous watch and wait, where patients had only chemo/rad, now is different, we have extra chemo after just like people that go for surgery.

Radiation peak is about 16,17 weeks from begining of the therapy, and it stays there for years as per my surgeon.

Here is interesting link:

http://www.iwwd.org/wp-content/uploads/2015/12/ECC-2015-NF.pdf

Good luck to you, if you have any question feel free to shoot!

lp1964

Dear Friend,

That's a tough decision. I had the same tumor except my infiltrated the sphincter muscle and even got close to the tail bone. I wasn't given the option of no surgery and colostomy. Turned out that the initial chemo and radiation killed all the cancer then the mass was removed with clear margins 3 months later. That was almost 4 years ago and I'm doing fine. I have diet limitations and frustrations with the colostomy but still living a full life and glad that the cancer is out of my body. 

See the problem is even if the cancer cells are destroyed what happens with the reminence of it which is a bunch of radiated scar tissue. Is it gonna heal? Is it gonna perforate? Is it gonna cause you bowel movenent issues?

I talked to 4 surgeons until I felt comfortable with my decision and maybe you should get more opinions until you are.

My surgeon was Dr. Murrell at Cedar Sinai in Los Angeles and I have zero regrets about the whole process.

All the best!

Laz

NHMike

Tough choice overall

You'd do the chemo and radiation to begin with anyways so it sounds like you could delay the decision on whether to go with surgery or not. I'm just at the beginning of the surgery and the doctors that I've spoken to (2 oncologists, 2 radiologists, 1 surgeon) are all indicating conventional surgery. I have some infiltration of the levater (sp) muscle and she drew me a picture of the margins needed to save the rectum but I'm kind of resigned to getting a bag. If I don't get one and everything works out, then that would be great. But I'm assuming the worst for now. At this point, I guess I'm mostly focused on survival. When the tumor goes down, the blood work looks good, scans look good, etc. then I can deal with loss of function.

The surgeon said that she would look at an MRI before the surgery. At that point, if stuff can't be saved, she will tell me and I'll know my fate. If she can't tell before the surgery, then she will make the decision during the surgery and I won't have any say about it, which is reasonable to me. I've chatted with a few people on living life with a bag and people indicate that they adapt.

JanJan63

mozart13 said:

Yes it can!

Mine was eradicated by chemo/rad.

2 months after, my surgeon did re-staging, every thing came back negative, colonoscopy, MRI, CT.

Started chemo folfox in April, every 2 weeks, 10 rounds planned, had 6 so far with some delays beceause of blood results in the boots.

This is much better approach than previous watch and wait, where patients had only chemo/rad, now is different, we have extra chemo after just like people that go for surgery.

Radiation peak is about 16,17 weeks from begining of the therapy, and it stays there for years as per my surgeon.

Here is interesting link:

http://www.iwwd.org/wp-content/uploads/2015/12/ECC-2015-NF.pdf

Good luck to you, if you have any question feel free to shoot!

How big was the tumour to

How big was the tumour to start with? I'm concerned that my biggest one, which is about the size of a ping pong ball is too big to be eradicated by chemo.

Thanks,

Jan

Bradnjerzee

lp1964 said:

Dear Friend,

That's a tough decision. I had the same tumor except my infiltrated the sphincter muscle and even got close to the tail bone. I wasn't given the option of no surgery and colostomy. Turned out that the initial chemo and radiation killed all the cancer then the mass was removed with clear margins 3 months later. That was almost 4 years ago and I'm doing fine. I have diet limitations and frustrations with the colostomy but still living a full life and glad that the cancer is out of my body. 

See the problem is even if the cancer cells are destroyed what happens with the reminence of it which is a bunch of radiated scar tissue. Is it gonna heal? Is it gonna perforate? Is it gonna cause you bowel movenent issues?

I talked to 4 surgeons until I felt comfortable with my decision and maybe you should get more opinions until you are.

My surgeon was Dr. Murrell at Cedar Sinai in Los Angeles and I have zero regrets about the whole process.

All the best!

Laz

Hey Laz

Thanks for your response.  I confident with this team and the plan, I mean they are the bset of the best here in NYC...Im nervous of how I wil respond to chemo, but im in great shape phycially with no other issues so I hope I can toloerate.  Being this is all new for me, my tumor is 4-7cm from anal verge and they said using the Davinci robot he could reconnect, but the Dr said I may have bowel issues where I may have to go often daily, sometimes in bathroom for hours or somedays not at all..does this make any sense?  Tell me about your surgey, was your tumor close to verge where it was going to be an issue reconnecting?  You said mass was removed with clear margins, so they had room to reconnect, do you have issues with incontinence or bowel issues?  I appreciate your insight!  I got blind sided by this, thinking I had hemmorroids, I now have a mass at stage 3..he said bordering3 becuase 2 lymph nodes lit up as non-detetable, therfore satege 3 with T3.

thanks again!

Brad

Bradnjerzee

JanJan63 said:

How big was the tumour to

How big was the tumour to start with? I'm concerned that my biggest one, which is about the size of a ping pong ball is too big to be eradicated by chemo.

Thanks,

Jan

H iJan

Hi Jan,

3cm, 3-7cm from anal verge..have you had surgery?  I have the best cancer center in the country, Sloan Kettering, maybe you baev heard for them..I have to put my trust in them..tell me more about how you are now

Brad

lp1964

NHMike said:

Tough choice overall

You'd do the chemo and radiation to begin with anyways so it sounds like you could delay the decision on whether to go with surgery or not. I'm just at the beginning of the surgery and the doctors that I've spoken to (2 oncologists, 2 radiologists, 1 surgeon) are all indicating conventional surgery. I have some infiltration of the levater (sp) muscle and she drew me a picture of the margins needed to save the rectum but I'm kind of resigned to getting a bag. If I don't get one and everything works out, then that would be great. But I'm assuming the worst for now. At this point, I guess I'm mostly focused on survival. When the tumor goes down, the blood work looks good, scans look good, etc. then I can deal with loss of function.

The surgeon said that she would look at an MRI before the surgery. At that point, if stuff can't be saved, she will tell me and I'll know my fate. If she can't tell before the surgery, then she will make the decision during the surgery and I won't have any say about it, which is reasonable to me. I've chatted with a few people on living life with a bag and people indicate that they adapt.

Dear Friend,

My tumor was very close to the sphincter muscle and I could not be reconnected. Colostomy is frustrating but after almost 4 years I got used to it and live a full live. I Cannot eat fibrous food and raw vegetables because I have gas and cramps after. But thats due more to the chemo and radiation than to my surgery.

I cannot tell you which route to go, but if I as you I would get more opinions. You have plenty of time until you decide to have or have not surgery. When we looked at the post chemo/radiation CT It looked like almost nothing changed. There was a big mass of later turned out to be dead cancer. I personally could not imagine living with that and the uncertainty in my body. You also have lymph node involvement which I didn't. I felt a great relief once the surgery removed my cancer. 

Also traditional VS robotic surgery. Mine was manual becase the anal area was removed as well so the surgeon had good access and visibility from below. However if the anal area can be saved the surgeon actually sees better with tobotic because it's a very tight place in the pelvic area. The recovery time is also much shorter.

All the best!

mozart13

Surgery

My surgeon told that most important thing is to get clear edges and not to poke wholes in specimen during surgery, to get specimen out in one piece, I didn't ask why, but what I found online , one doesnt want to disturb cancer cells.

My tumor was 4.5 cmin size, 8 cm from anal verge, no infiltration of surounding tissue. T1/T2N0M0.

Good luck to you, whichever way you go, wish you excellent response to chemo/rad!

Bradnjerzee

mozart13 said:

Yes it can!

Mine was eradicated by chemo/rad.

2 months after, my surgeon did re-staging, every thing came back negative, colonoscopy, MRI, CT.

Started chemo folfox in April, every 2 weeks, 10 rounds planned, had 6 so far with some delays beceause of blood results in the boots.

This is much better approach than previous watch and wait, where patients had only chemo/rad, now is different, we have extra chemo after just like people that go for surgery.

Radiation peak is about 16,17 weeks from begining of the therapy, and it stays there for years as per my surgeon.

Here is interesting link:

http://www.iwwd.org/wp-content/uploads/2015/12/ECC-2015-NF.pdf

Good luck to you, if you have any question feel free to shoot!

Hey Mozart

 Thanks for your response!  Only after 2 months your tumor was gone?  How large was tumor?  how far from anal verge?  Here in NYC, Sloan Kettering is the best cancer hospital in the area.  I'll be taking same chemo as you, how were the side effects?  Also, where are you from?

thanks

Brad

lizard44

I'm another watch and wait patient

My rectal tumor was diagnosed in April, 2015 following a colonoscopy. The colorectal surgeon was  ready to do  surgery resulting in a  permanent colostomy as  he didn't think he could save the sphincter muscle and without the colostomy, I would most likely  have little control of the sphincter muscle. I was referred to an oncologist and scheduled to begin neoadjuvant radiation with chemo. However,  a CT  scan  showed a lesion in  my liver.  The surgeon said it was most likely a hemangioma, but the oncologist said she wanted to be sure. A PET scan was ordered and confirmed that I was Stage 4 with mets to the liver, so the plan changed and the surgeon became concerned   that  we take care of the liver  mets before doing the  rectal surgery.

I began a regimen of Folfox plus Avastin in  late May 2015 and received  eight treatments.  I developed neutropenia and  received 17 Neupogen shots over the course  of the treatment, which finished up on 9/30/15. Overall, I tolerated the treatment well with few side effects, although I did get some neuropathy in  my feet toward the end, which is still there to a degree. A CT scan on 10/12/15 noted that the liver lesion had shrunk and the rectal mass was "not well seen." I then began radiation treatment with a  5FU pump five days a week. That  finished up in late December. A CT scan in late January showed everything had remained stable except for the liver lesion, which had enlarged. I began Avastin with  5FU and  Fusilev in Feb. 2016 and received  4 treatments.   A scan in  late March showed the liver lesion had enlarged 18%. I began a regimen of Erbitux and Irinotecan in April 2016. After six treatments, the  liver mass had shrunk down to 1.5 x1.5 cm and I had an ablation  in mid August then went back on the  Erbitux and Irinotecan  in September and am still on it.  I did begin having some rectal bleeding a few weeks ago, but a CT scan  showed no  changes and no inflammation. However, the surgeon is concerned that we might need to go ahead with surgery.  The colonoscopy showed that  scar tissue has formed and  I have radiation coiitis, but nothing new showed up.  The surgeon and oncologist are supposed to be getting together after they've all seen the written reports from the gastroenterologist and we'll decide on what course to take then.  Meanwhile I  received my 28th infusion of  Erbitux and Irinotecan  this week and  still feel pretty good, although I'm beginning to have some problems with dry skin, ingrown toenails and  skin splits  on the tips of my fingersand have an appointment  with my PCP next week to see if I need a referral to a podiatrist. I've had my original port replaced and a second implanted, which resulted in a pneumothorax, chest tube and a stay in the hospital I hadn't counted on in late November last year but other than that, I've had just over two good years with minimal side effects and have been pretty much able to work around the house and in the garden and get out and about. And I've actually gained weight, which has surprised everyone, since  my low weight when I began (85 lbs) was a concern. I'm a whopping 95 pounds now! It does seem to take me a bit longer to fully bounce back after an infusion day, but  I'm not sure if that's  not  age-related (I'm 72) as much as anything.  I hope you tolerate the treatment  well and that it is effective for you in getting rid of the beast or at least keeping it at bay for a long time.  Sorry for the long  post- I do tend to get verbose at times.

Bellen

Erbitux - lizard44

Did you have acne/rash side effects from the erbitux?  Were you prescribed an antibiotic or cream to deal with this?  I talk to someone who has started on erbitux and he said the acne developed overnight - very suddenly.  He has only had two treatments of this and he thinks that these side effects seem to appear at a specific time after the chemo.  I would like to know the names of the cream, antibiotic, or other products that seem to help with this unpleasant side effect, as my CRC with liver mets mean that I will have ongoing chemo (right now folfiri), and may in the future have erbitux as part of my treatment.  I have had about 9 mos of folfiri - have added an extra week as a break 4 times.  Boy, that extra week makes me feel almost "normal"

Also, I am always struggling to keep my weight on - very difficult when my stomach feels like crap most of the time.  I vacillate between constipation and diarrhea for at least the first week.  My dietician has recommended a product by Ensure called Enlive which helps to maintain muscle mass.  I also buy Ensure with added calories which has helped to maintain my weight.  Use these when I feel I need added supplementation.  

Annabelle41415

My Rectal Cancer

Please read my "about me" page.  I've had rectal cancer and mine was low.  My surgeon did chemo/radiation, surgery (with a temporary ileostomy), made a new rectum out of lower colon (took rectum out completely) and reversed ileostomy 7 months later.  I'm going up to 15 times a day, not everyday but most days I'm always at a struggle because I'm going during the night, day and evening.  I'm never able to eat out due to not knowing if it's going to run right through me.  My surgery was over 8 years ago.  Make sure you ask a lot of questions.  My Page has a lot of info on it, but if you have any other questions, please just ask.

Kim

mozart13

Bradnjerzee said:

Hey Mozart

 Thanks for your response!  Only after 2 months your tumor was gone?  How large was tumor?  how far from anal verge?  Here in NYC, Sloan Kettering is the best cancer hospital in the area.  I'll be taking same chemo as you, how were the side effects?  Also, where are you from?

thanks

Brad

I am from Toronto, was on

I am from Toronto, was on xeloda during chemo, didnt have much symptoms except being weak and tired at the end of week. By Sunday I was recovered , ready for Monday therapy. 

I avoided antioxidants during therapy, was drinking a lots fluid, had high protein diet, walked twice a day on top of going for radiation.

My tumor was 4.5 cm in size like I mentioned, was 8 cm from anal verge.

Sloan Kettering hosp. is well known, I think my place is following their protocol.

Dweedle

Yes! The answer to a cure for rectal cancer without surgery is true.  At least for me it is.  I to was diagnosed with stage 3 rectal cancer in November 2016.  I was shocked although I knew something wasn't right.  I was very constipated and gassy. I relocated from Florida to  Connecticut for treatment at Sloan Kettering in New York.  What a blessing it has been.  Met with surgeon and oncologist on 12/14.  Started cemo 12/23 (Merry Christmas) with a port installed in the AM and cemo that afternoon.  Cemo was Flofox for 8 round.  Finished 4/7 and started radiation a week later for 25 days.  Radiation was a real B---h.  Terrible burns  and had to skip some days that were added on at the end.  Some how I  survived it although they said my burns were some of the worsed they had seen.  I saw my surgeon on 7/10.  Tumor is gone!!!!!  Of course I will be check every 4 months but that's a very small price to pay. I can't praise Sloan Kettering enough.  Wonderful, wonderful people.  From receptionist to surgeon and everyone in between was great.  I feel I got the best care possible and of course highly recommend it for anyone with cancer.  They are doing a study on non-surgical procedures for rectal cancer that you can read about on their site or goggle it. God bless anyone with this cancer but there is hope.

JanJan63

Bradnjerzee said:

H iJan

Hi Jan,

3cm, 3-7cm from anal verge..have you had surgery?  I have the best cancer center in the country, Sloan Kettering, maybe you baev heard for them..I have to put my trust in them..tell me more about how you are now

Brad

Really! Mine's just over 4 cms so maybe mine will disappear. Seriously doubt it but if it can just be under control for a long time I'm good with that. Yes, I had surgery three years ago. We live in Canada but I have heard of your hospital. I'm sure you'll get the best care there. 

I don't want to share how I'm doing now. I post on here a lot and I'm sure some people must be twondering why I don't shut up sometimes. I'll just say that I'm back on a chemo I was on before as of yesterday. I have a CT scan in August and then I'll know more.

Jan

lizard44

Bellen said:

Erbitux - lizard44

Did you have acne/rash side effects from the erbitux?  Were you prescribed an antibiotic or cream to deal with this?  I talk to someone who has started on erbitux and he said the acne developed overnight - very suddenly.  He has only had two treatments of this and he thinks that these side effects seem to appear at a specific time after the chemo.  I would like to know the names of the cream, antibiotic, or other products that seem to help with this unpleasant side effect, as my CRC with liver mets mean that I will have ongoing chemo (right now folfiri), and may in the future have erbitux as part of my treatment.  I have had about 9 mos of folfiri - have added an extra week as a break 4 times.  Boy, that extra week makes me feel almost "normal"

Also, I am always struggling to keep my weight on - very difficult when my stomach feels like crap most of the time.  I vacillate between constipation and diarrhea for at least the first week.  My dietician has recommended a product by Ensure called Enlive which helps to maintain muscle mass.  I also buy Ensure with added calories which has helped to maintain my weight.  Use these when I feel I need added supplementation.  

Erbitux Rash - Bellen

Bellen, I did develop the  acne like rash following the first two treatments.  The oncologist  prescribed Clidamycin Phosphate Gel and it did a good job of clearing up the pustules. Also, after the first treatment I  developed  a problem with my eyes- when I'd wake up in the morning, they would be crusted shut, then once I got them open they would run.  The doctor prescribed Azelastine, 1 drop in each eye, twice a day.  That pretty much took care of that problem. After the first two treatments, I didn't get any more pustules, maybe because of the  Clindamycin, but  I did develop an ugly red rash that spread from my face  down my neck and onto my chest- and it itched, as I recall, for which I was prescribed  Atarax, 25 mg. tablets.  But I only rook about   7 of them and discovered that I could  ease the rash and the itching with Aveeno skin cleanser and lotion. Since then, I've  not had any more rashes or itching, just very dry skin, and  discovered a line of products called Lindi which have  really helped- especially on my face. I kept a blog fairly  regularly when I began the  Erbitux, describing  what was happening for a while. If you'd like to  read it, the first entry when I began the Erbitux is here:http://roosterhen.blogspot.com/2016/04/progress-report-good-news-and-bad-news.html. I hope you can continue to maintain your weight.  I keep a few bottles of Boost in the fridge, for days when I  might need to suplement my diet, but  haven't needed them very often and fortunately haven't had much problem with nausea. I do  watch my diet, avoid fried and fatty foods, eat mostly fish and chicken rather than red meat or pork, I eat a lot of vegetables, but stay away from raw fruits and vegetables except for bananas- they don't  seem to bother me.  And I  eat plain Greek yogurt and take  probiotics which seem to help.  I hope you find a solution that works well for you.

Grace/lizard44

Joan M

The tumor in my colon has

The tumor in my colon has disappeared with chemo only.  I have not had any surgery or radiation for the colon tumor.  I was diagnosed at Stage IV in March 2016.  I had 8 rounds of Oxaliplatin, Leucovorin, Avastin, and 5FU.  In July 2016 I started maintainence chemo: oral Xeloda and Avastin infusions every 3 weeks. The colon tumor was barely visible by October 2016 and  not visible at all by January 2017.

After the colon tumor disappeared, my doctor said I was eligible for targeted treatments to clear my liver of tumors: I ablation on tumors in the left lobe of my liver in January 2016, and Y90 for the right lobe in April 2017.  These procedures are supposed to double the length of expected survival. 

My next scan is coming up in August, then I will find out if they will perform ablation on any tumors in my lungs.   

There definitely is hope for a cure, and if not a complete cure, then at least we can hope for years of survival instead of months.   

Praying for successful treatment for you,

Joan  

darcher

Reading this definitly gives hope of getting rid of these things without being cut open.  Mine isn't as big as some. It's 33mm by 23 mm in size and sits right at the junction of the colon and rectum.  I started chemo/radiation yesterday.  Xeloda and 28 m-f radiation treatments.  I'm praying that when they check me again they'll say the tumor is gone and there is no need for a surgery.

lhduffer

I have heard of this trial

I did hear of this trial after I had already begun treatment and was very intrigued by the NOM (non-operative management) approach.  I was only 50 at the time of my diagnosis, so I was also very concerned with my lifestyle going forward.  However, I was diagnosed Stage 4 and I believe criteria was Stage 2 or 3. 

I was initially T3N1M1 with a 5 cm tumor 5-8 cm from the anal verge and 1 cm from the sphincter.  I did 4 rounds of CapeOx followed by 25 treatments of radiation and daily xeloda.  By the end of my radiation and chemotherapy there was no evidence of my tumor nor the nodes.  Due to the uncertainty of a permanent colostomy or the bathroom issues associated with a reconnection if I could have a temporary ileostomy, I did discuss the idea of NOM with my oncologist and surgeon.  While it was not really recommended in my case, I could have opted for this course of treatment.

In discussions with my surgeon's team, they were optimistic that they could do a temporary ileostomy with later reversal (although there were no guarantees and it would be determined during surgery).  They did mention to me that due to radiation damage (scarring) a reconnection may not be possible in the future should I later opt for or need the surgery.  It appears there is an optimal time frame for surgery following radiation and during surgery they reconnect and the temporary ostomy allows time for the healing of the connection.

After a lot of consideration (and agony trying to decide), I opted for the surgery and a chance at reconnection.  During the surgery my entire rectum was removed along with a section of my sigmoid colon and lymph nodes but they were able to reconnect and I had the reversal last September.  During biopsy of my surgical specimens they did find one node that still tested positive for cancer.  Therefore, in my case, I am happy with my decision to have the surgery.  That does not say that I do not have bathroom issues at times and that it has not changed my life.   However, I do live life fully and work around any issues.

Praying that your tumor disappears and that you remain NED whatever your decision.  You are at an excellent facility and should find confidence in that.

NHMike

lhduffer said:

I have heard of this trial

I did hear of this trial after I had already begun treatment and was very intrigued by the NOM (non-operative management) approach.  I was only 50 at the time of my diagnosis, so I was also very concerned with my lifestyle going forward.  However, I was diagnosed Stage 4 and I believe criteria was Stage 2 or 3. 

I was initially T3N1M1 with a 5 cm tumor 5-8 cm from the anal verge and 1 cm from the sphincter.  I did 4 rounds of CapeOx followed by 25 treatments of radiation and daily xeloda.  By the end of my radiation and chemotherapy there was no evidence of my tumor nor the nodes.  Due to the uncertainty of a permanent colostomy or the bathroom issues associated with a reconnection if I could have a temporary ileostomy, I did discuss the idea of NOM with my oncologist and surgeon.  While it was not really recommended in my case, I could have opted for this course of treatment.

In discussions with my surgeon's team, they were optimistic that they could do a temporary ileostomy with later reversal (although there were no guarantees and it would be determined during surgery).  They did mention to me that due to radiation damage (scarring) a reconnection may not be possible in the future should I later opt for or need the surgery.  It appears there is an optimal time frame for surgery following radiation and during surgery they reconnect and the temporary ostomy allows time for the healing of the connection.

After a lot of consideration (and agony trying to decide), I opted for the surgery and a chance at reconnection.  During the surgery my entire rectum was removed along with a section of my sigmoid colon and lymph nodes but they were able to reconnect and I had the reversal last September.  During biopsy of my surgical specimens they did find one node that still tested positive for cancer.  Therefore, in my case, I am happy with my decision to have the surgery.  That does not say that I do not have bathroom issues at times and that it has not changed my life.   However, I do live life fully and work around any issues.

Praying that your tumor disappears and that you remain NED whatever your decision.  You are at an excellent facility and should find confidence in that.

That's a good example of a

That's a good example of a story where it's better to be safe than sorry.