The Colon Club

Such a tough decision. I also had a complete clinical response after chemo/radiation, but was not offered the option of no surgery, but may not need chemo after surgery. Pathology did show minimal residual cancer cells, clean margins, no lymph node involvement. So, was recommended to go ahead with chemo after surgery. Was very disappointed and even though was my choice, I went ahead. I have said before, I may have gone on wait and watch if offered after chemo/radiation, and there still would've been some cancer remaining. So very difficult. We all have to decide what is best for us, and no matter what the decision there are no guarantees.

susie0915 wrote:I was never offered the option of no surgery, but after chemo/radiation my surgeon did a sigmoidoscopy and said all that was left was scar tissue and I may be able to avoid chemotherapy after surgery depending on pathology. I also had a pet scan that showed no cancer before surgery but after chemo/radiation. The pathology came back after surgery and showed minimal residual cancer cells where tumor was, so my oncologist recommended chemo and I went ahead even though I was very disappointed. I think if I would've been offered no surgery, based on the pet scan and results of chemo/radiation I may have went that route. But now knowing there were still cancer cells I'm glad I didn't. I don't think it can be known for sure if there is still some cancer remaining unless it is taken out and examined. It is such a tough decision. There are a few on this board that have gone the route of no surgery that can probably give you better advice. My point is that you may finish chemotherapy and it may look as though there is no cancer remaining but there still could be cells I don't know. I'm not sure if they biopsy the area to check for cancer after you finish treatment.

Thx Susie for your response! It's extremely helpful to learn about other's journeys and what they considered along the way. Appreciate it!

prs wrote:afaust, does your oncologist have any data to support his opinion that your tumor could start to grow again during chemo?

I believe MSK are on the leading edge of colorectal cancer treatment, and I doubt they would have offered you this option if there was significant risk. Why not ask MSK to comment on your onc's opinion?

Thx PRS - I'm actually meeting with one of the MSK docs tomorrow who authored the Neoadjuvant chemo approach study & intend on peppering away with questions! Primary on my list is understanding the level of risk in waiting it out.

mozart13 wrote:"Delivering the systemic chemotherapy and the chemoradiation therapy before surgery could have several potential advantages for the patient. First, it will treat circulating tumor cells, which we believe are responsible for metastatic disease, earlier in the process. Second, it will increase the proportion of patients who complete the full dose of systemic chemotherapy. Third, it will improve the probability of local tumor eradication, thus improving the patient’s chance for sphincter preservation and selective NOM."

"At Memorial Sloan Kettering we found that delivering systemic chemotherapy after chemoradiation and delaying surgery yielded an increase in the rate of pathologic complete response, with no additional complications"

https://www.mskcc.org/clinical-updates/ ... ut-surgery

Few months into the chemo (folfox), was alerady cCR, they(my hospital) did MRI and CT, plan was for scope as well, since MRI and CT came back negative, there wasn't need for scope at that time, I continued with chemo. Had MRI and scope week before the start of therapy, also had CT,MRI and scope 2 weeks after chemo/rad, cCR was established at that time.
Gap between chemo/rad and folfox was a bit over 2 months.
Very close follow up is important for anyone qualifying and taking this path.

Thx Mozart13 - and good to know the timing between your chemo/rad & folfox regimen as that's important (I've been on a break now for about 4 weeks). Below is the link to the findings that came out of the trial that you posted - the findings were presented to me at my meeting at MSK which got me interested in this NOM approach
https://www.ncbi.nlm.nih.gov/pubmed/24717570

You welcome afaust.
I hardly had any symptoms from chemo/rad, no pain, no redness, used time between to build my immune system, went to gym, worked between, my family doc suggested herpes vaccine, said that my immune system will be so weak during folfox, he is seen people covered in herpes, that worked very well.

Radiation peak time is between 15-17 wks.
Page 7/53
http://www.iwwd.org/wp-content/uploads/ ... 015-NF.pdf

Good luck to you which ever way you decide to go!
If you have any question feel free to shoot.

Dear afaust, on chemo or not - as long as a cancer tumor exists, it is quite busy shedding thousands of cells every day. Many of those cells are dying on their own but In the case of rectal cancer, those cancer cells are going straight to the lungs (normal body circulation). I find this to be very scary. I still think about it.

Secondly, You have already gone thru radiation. The reason for a temporary ostomy following a resection is the radiation has turned that area of the colon to mush. If there is not enough fresh colon tissue to reconnect, it cannot simply be sewn together and "poof" you are good to go. So the colon must be bypassed during the healing process. But that mushy state caused by radiation does not remain forever and the area becomes very thick and tough and again surgery becomes more difficult. I would make certain that my surgeon was completely on board with a big delay between radiation and surgery.

lastly, I had an ileostomy for nearly 8 months - from surgery till a month after completing 6 months of chemo. Not a big deal at all, sometimes frustrating yes, but not a big deal. Of course I did not go into a swimming pool (haha) but I did have a couple of good laughs at the TSA folks at the airport - I step into the scan booth and they say "sir, you have a mass on your right side" and I respond by lifting my shirt and saying "not to worry, it is just a bag of poop".

afaust wrote:

rockhound wrote:I wanted it out sooner than later. About the only thing I would have done differently, if given the option, would have just done FOLFOX chemo before surgery and no radiation (there are trials with this). I only had the ileostomy for 3 months (manageable, though not ideal for sure) and had 6 cycles of adjuvant chemotherapy. Do you know your MSI status? That can/should play a role in how you are treated also. For example, the adjuvant chemo I did may have been overkill because my tumor was MSI-high and I have Lynch syndrome. So in that context, we were going to shoot for 8 rounds, decided 6 was not really much different (since MSI-H tumors don't exactly respond to 5FU) and if I was only going to be able to handle 3, so be it (again, because of the MSI status - if I was MS-Stable I would have pushed through for 8 for sure or as best as I could). Anyway, tough choice. I did not want to look back and wonder "what if I would have only had the surgery..."

Thx rockhound for your thoughts/advice. Only 3 months with the ileostomy sounds great - I was told to expect more like 6 months but, in the grand scheme of things, it's only six months and versus a permanent I should be able to manage anything! I do not know my MSI status - and immediately had to do some research just to even understand what that meant! My docs have said zip to me about this, so I'll poke around. I know I do not have Lynch syndrome - that much was found out. Now that I'm thinking about it - would the pathology results from my original colonoscopy show my MSI status?
For sure not moving forward with surgery would create a level of anxiety - wondering if there's just that one cell in my body that has decided to go rogue status!

Sure, no problem! Pathology would show MSS or not if the tumor was tested - for me this happened when I had my resection. I am not aware that they are routinely tested for MSS/MSI-H status during a colonoscopy (really would depend on the amount of tissue collected I'd guess). I also had prior genetic testing via bloodwork that showed the gene mutation and Lynch; the tumor testing confirmed this. If you know you do not have Lynch (via a test of some kind presumably), then you are likely not MSI-high - ask your doctors about all this for sure. Determining MS status should be something that is standard for ALL colorectal cancer patients, esp. at diagnosis or soon after, because of the treatment options (e.g., potential for immunotherapy). Oncologists, nurses, etc. should all be onboard with this and if they are not, everyone needs to press them why not.

3 months was doable and at the end of that, I totally realized that more time would also be doable- be that 6 months or even a permanent ileostomy (lifestyle changes would have occurred for sure- I like to swim so was happy I could get back to that and not worry about my bag of poop).

rockhound wrote:.... Determining MS status should be something that is standard for ALL colorectal cancer patients, esp. at diagnosis or soon after, because of the treatment options (e.g., potential for immunotherapy). Oncologists, nurses, etc. should all be onboard with this and if they are not, everyone needs to press them why not...

I agree with this. I think that the new standard that they are trying to encourage along with AJCC Staging Manual 8th Edition, is that all colorectal tumors be tested for MSI status.

It seems, however, that the College of American Pathologists is still using an earlier standard that has MSI status marked as an optional item, so I don't quite understand what is going on. I think, though, that the pathology departments at the major cancer centers are all on board with universal MSI testing because they now understand the importance of MSI in initial staging when it comes to selecting an appropriate first-line therapy.

Here is a factsheet that explains some of the technical details of MSI biomarker research:

http://oncologypro.esmo.org/Education-Library/Factsheets-on-Biomarkers/Microsatellite-Instability-Defective-DNA-Mismatch-Repair

Also:

...The Association for Molecular Pathology recommends to subject all new colorectal cancers to MSI analysis to classify them into three subgroups: sporadic MMR-proficient, sporadic dMMR, or Lynch dMMR..."

Reference: Funkhouser WK, Jr., Lubin IM, Monzon FA, et al. Relevance, pathogenesis, and testing algorithm for mismatch repair-defective colorectal carcinomas: a report of the association for molecular pathology. J Mol Diagn 2012; 14: 91-103 -- https://www.ncbi.nlm.nih.gov/pubmed/22260991

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Microsatellite Instability (MSI) - Defective DNA Mismatch Repair

On the other hand, many (perhaps even most) researchers use this same argument ("rogue" cells constantly being shed by the primary tumor and winding up elsewhere) as the primary reason to start with systemic neoadjuvant chemo rather than waiting until after resection. Otherwise, treatment of these potential micrometasteses can be delayed by many months, allowing them to form actual metastatic tumors. Of course, until hard data are available, there is no way to know which approach actually offers the best chance of long term survival.

https://www.ncbi.nlm.nih.gov/pmc/articl ... po=60.3448

chemo sabe wrote:.... on chemo or not - as long as a cancer tumor exists, it is quite busy shedding thousands of cells every day. Many of those cells are dying on their own but In the case of rectal cancer, those cancer cells are going straight to the lungs (normal body circulation). I find this to be very scary. I still think about it....

Always a hard choice. I started my cancer journey with the my doctor finding a polyp and he cut it out. He stated I was stage 1 and should do the wait and see approach. He would monitor me closely. I did this for six months but I educated myself during this period. During this period I got second opinion and was told I needed to have surgery. I choose surgery after six months. I am sure glad I did. The cancer was not gone and was moving toward the lymph nodes. Thankfully it went to the fat cells. But my Stage 1 went to Stage 3A. My cancer was higher up so I did not need a temp bag. I did six months of chemo. As others stated you want to get rid of those evil cells. They can move very quickly. I pray all goes well.

I received what was the standard of care for calendar 2009, the year I was diagnosed (See below). Since then I've had no recurrence, but my bowel movements have changed over the years. For the first 5+ years, I would have frequent bouts of constipation for 5 to 7 days, followed by urgent diarrhea. My gastroenterologist said it was due to the radiation I received, although the literature states it is primarily due to rectal surgery, because this surgery leads to LAR syndrome about 80% of the time.
In the past year or so, the situation has improved markedly, possibly due to my diet. I have metamucil with every meal, yogurt every morning, avoid spinach, and drink tea multiple times daily.

The Chemo (5FU/Oxaliplatin) is harder with an ileostomy so doing it beforehand has that advantage.

My tumor was large, about 100 ccs and shrunk to under 10 with chemo and radiation but it was still there. I had a PCR with surgery and am doing adjuvant chemo now and it's rough. The Oxaliplatin is generally rough - I haven't heard of a lot of people that have an easy time with it.

It might be good to know your gene mutation too. There are a few that are very aggressive mutations that could have you choosing to get it cut out sooner rather than later. I'm assuming that you already had MSS testing.

NHMike, I suspect this will sound rude but that is not my intent. Telling people that a treatment is 'rough" is not descriptive. What is it that is rough for you ?? Similarly, you state that chemo is "harder" with an ileostomy. What does that mean and where did you get your information. Lets face it, chemo is not a walk in the park but I did it for 6 months and only missed work on infusion days (every 3 weeks with Xelox). I have permanent neuropathy from the oxaliplatin but that does not mean everyone will. At the end of my chemo, hand/foot syndrome was setting in and I stopped taking my oral chemo a week early. Please tell us your experience rather than write "rough".

chemo sabe wrote:NHMike, I suspect this will sound rude but that is not my intent. Telling people that a treatment is 'rough" is not descriptive. What is it that is rough for you ?? Similarly, you state that chemo is "harder" with an ileostomy. What does that mean and where did you get your information. Lets face it, chemo is not a walk in the park but I did it for 6 months and only missed work on infusion days (every 3 weeks with Xelox). I have permanent neuropathy from the oxaliplatin but that does not mean everyone will. At the end of my chemo, hand/foot syndrome was setting in and I stopped taking my oral chemo a week early. Please tell us your experience rather than write "rough".

I have a thread with 658 posts where I've described my entire journey: viewtopic.php?f=1&t=58447

I had my third infusion yesterday morning. It was snowing when I left the hospital and I had cold sensitivity in my hands, fingers, eyes, throat and face but I brought a balaclava and ski googles so that I had no exposed skin. I still had to clear snow off the car and my gloves didn't keep me warm enough so that there was pain doing that. The drive home was painful because the steering wheel was cold on the drive home. Symptoms: calf and arm cramps, throat with the closing feeling when eating or drinking cold things, nausea after the meds wear off. One thing that stinks is when you close an eye and it won't open because of the cold. Not a good thing when you're driving.

I've worked every day, even during the infusion. But I've chatted with many people that take short-term disability with 5FU + Oxaliplatin. Many take infusion day off and otherwise work. Some are retired and spend a good chunk of the day in bed because the chemo suppresses their apatite and they lose ten, twenty pounds.

Changing the bag can often be a pain in the neck and it creates restrictions on what you can do. Having to change a bag with the side-effects of the chemo can be a pain. My environment may be a little rougher than most. Early January, we had temps routinely in the negative digits with wind chills in the -10 to -25 area. Temperatures warmed up to around freezing during the day and teens or twenties at night which was much more comfortable but having to clear snow and ice off your driveway, cars, and roof can be quite painful with cold sensitivity all over your body.

Hi,

I can completely relate to this question - I posted this on another site (maybe it’ll help others as well):

I’m 47 & about 6 weeks out from diagnosis with stage 3 rectal cancer. Mayo has classified my cancer as T3N1M0 (Per imaging done on 1/30). My tumor is about 7.5cm from the anal verge. I’ve gotten opinions from 4 institutions so far and broadly, treatment seems to break down as below. I’d welcome experience (especially 2+ years out) from fellow cancer survivors who chose/were treated with these respective approaches:

Standard: 5.5 weeks of radiochemo therapy, LAR/TME with reattachment & diverting ilestomy followed by 8 rounds/4 months of chemo/FOLFOX finally the ileostomy “takedown” (pretty much default answer of all institutions)

Chemo first: 2 different trials that start with chemo/FOLFOX, one that conditionally follows with radiochemo therapy (if tumor doesn’t shrink enough), same surgeries with optional additional chemo/FOLFOX after surgery - big advantage seems to be less long term damage from radiation (offered by Mayo)

Organ preserving: similar to chemo first, with the option to delay surgery in a watch & wait approach in an effort to spare the organs IF tumor demonstrates a clinical complete response (I.e. becomes undetectable) - supporting institution (Sloan) suggests a 30% chance this could happen and that for tumors that show a complete response, survival & recurrence stays equal those of patients who underwent surgery, but with a higher quality of life relative to bowel function.

I already see great insights here and welcome others - Thanks!