The Colon Club

Hi everyone!
I’m new to the forum - and so thankful to have stumbled across it! Wow - it’s given me a ton of knowledge and support that I couldn’t fine elsewhere! Incredibly helpful to hear everyone’s experiences.

So, my question to the group is as follows. I THOUGHT I knew my treatment path but upon seeking a second opinion, I now find myself with another option and both paths present equal risks/downsides. To fill in the blanks - I am a 45yr old female, diagnosed w/ rectal cancer - T3 N0 - this past Nov 2017. My oncologists support the standard of care - CRT/illeostomy surgery/8 cycles of folfox/reversal surgery. I have just completed CRT Jan 2018 and my tumor has responded favorably. Prior to CRT, my tumor was 4cm from the anal verge but upon completion of CRT the mass is now 5-6cm from the AV - yeah!

The next step of the standard of care - surgery - always seemed to be the step where I really needed to make sure that I had the best surgeon around and hence, needed to meet with multiple surgeons. I’m sure I’m not alone when you first got the news that you’re diagnosed with rectal cancer, the “bag” news was always something I just couldn’t wrap my mind around (beyond the obvious elephant in the room). I wanted to find the surgeon that was absolutely going to “fight” for my sphincter muscles during that surgery such that i wouldn’t end up with a permanent “bag”. So, I met with the surgeon that my oncologists work with - great bedside manner, experienced, great in all aspects. He indicated that based on my response he’s relatively certain that he can preserve my muscles. Fantastic! The I head off to my meeting with another surgeon…at MSK in NYC.

During this meeting, this surgeon indicated that MSK is taking a different approach to rectal cancer treatment - neoadjuvant chemotherapy. This approach starts with 8 cycles of FOLFOX, then CRT and lastly surgery. Lastly surgery because there is a SMALL percentage of patients that after completing steps 1 & 2, they show a complete response and surgery is not needed. WOW I’m thinking (but very, very cautiously thinking WOW). My husband & I left that meeting thinking - “what’s the downside to this approach?” Granted, I’m already somewhat out-of-order to this approach in that I’m already through CRT but….so?

I reached out to my medical oncologist to find out what COULD the downside of this approach be to me? Valid downside as it turns out. My oncologist explained that my tumor has shown great response to CRT so now is the time to remove it. If I were to go through the 8 cycles of FOLFOX now, there’s a chance that the tumor could prove unresponsive to the FOLFOX regime and, in fact, start to grow again. Hmmmm.

So what I’m weighing - follow the standard of care, go through surgery, deal with the “bag” for in excess of 6 months and also wrap my mind around the difficulties that reversal can bring OR jump on the neoadjuvant train, start my 8 cycles of FOLFOX now, risk the tumor growing and creating more problems but also have the slight (very slight) chance of having a CCR and forgoing surgery altogether (oh & “bag time” would be shorter - 6-8 weeks). Thoughts/opinions/advice/experience welcomed! Thx much

It is very difficult to give advice, because you really want to avoid the bag and then I would suggest to go for the second option.

I just had surgery after chemioradiation and have had a colostomy already for 8 weeks, now they made an ileostomy which I will keep for at least other 8 weeks. But I see upon it more as an experience than a problem.

8 cycles of Folfox is what would scare me most and these are present in both approaches, although now they are testing also shorter periods of chemo with equal effectivity.

Avoiding surgery at all would be fantastic, because then you have lower risk to develop incontinency problems.

Good luck with your choice!

Claudia

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.

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..."

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?

My signature tells my story. No radiation has been great for me. Just got to get through the years of waiting for a recurrence.

BTW, my bowel function has been excellent after losing 90% of my rectum. Docs attribute that to not having radiation.

As rockhound has mentioned, you need to know your MSI status before scheduling any chemotherapy, because 5FU-based chemo may be ineffective if you are MSI-High. Does your oncologist know the MSI status of your tumor?

With stage 2 rectal cancer 5 cm above the anal verge, I had first surgery, then radiation and 5fu chemo. It worked fine. In your shoes, I'd follow my oncologist's recommendation (which is what I did).

Basil wrote:My signature tells my story. No radiation has been great for me. Just got to get through the years of waiting for a recurrence.

BTW, my bowel function has been excellent after losing 90% of my rectum. Docs attribute that to not having radiation.

I do wish I would not have had the radiation, mostly because of potential long-term effects. That said, I'm good with long-term effects if they do happen 20-30 yrs from now...

It is easy for doctors to recommend treatments as they do not have cancer - they are "practicing' medicine. The word I would tell you to consider is "metastasis". Cancer tumors are shedding cells every day. The sooner the tumor is removed, the sooner the chances of metastasis are removed. The longer the tumor remains, the more cells it sheds.

"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.

mozart13 - you are citing a 'paper' written in 2014 that proposes a "study'. The paper cited has zero statistical data, only anecdotal stories written for the self inflation of doctors who want guinea pigs. please point us to the actual results proving surgery last is the best option. This is not an academic exercise - cancer can take your life.

This study is finishing this year, we will have results at the end of year.
There is study published in 2016, chemo/rad plus folfox 6 rounds, pCR went from 18% just chemo/rad to 38% with these new approach. That is huge difference.
Current trial is with 8 rounds of folfox, before or after chemo/rad.

https://www.sciencedirect.com/science/a ... 2X16300299

chemo sabe like you said "cancer can take your life", one should always check with physicians before taking any of this steps, after all this is just forum, where people exchange their opinions, mostly for support.

I did the full neoadjuvant FOLFOX protocol for 8 cycles. Follow up staging after 6 cycles showed dramatic response and I was offered option of avoiding chemoradiation but opted to proceed with that because of some preliminary data that suggested it might decrease risk of local recurrence

My follow up scan after FOLFOX plus chemoradiation showed complete clinical response and I was offered watch and wait (I had a super low tumor and there was no way to avoid permanent ostomy or significant risk of LARS).

But again, the thought of w/w made me a little nervous so I opted to proceed with an APR. My tumor and all nodes showed a complete pathological response, and I am now 2 1/2 years out from surgery with no post op chemo and last scans and labs showed NED

I was very happy with the full neoadjuvant chemo protocol and because it addresses those rogue cells/micrometasteses earlier than other protocols it theoretically offers a long term survival advantage.

Good luck with your decision making

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!