Is W&W an option for a partial response

[Phillypatient]

At MSK, the doctor there suggested to do the chemotherapy before surgery because they have observed complete clinical response in patients that have residual tumors post radiation. You are going to have to do the chemo anyway. I’d much happier I did it pre surgery when I functioned normally. Doctor Aguilar is the head of colorectal surgery and head of the study. It’s worth a shot. They’ve also written some papers for the layman to read. I would do anything I could to avoid the surgery if possible.

Good luck and feel free to ask questions

I have been/am being treated by msk.

We did 5 weeks crt (radiation/capecetabine/m3814) and I just completed my 8th round of folfox.

I took 5 weeks In between CRT and chemotherapy.

All actions were done with giving me the best chance to achieve a pcr or ccr and avoid a colostomy.

I believe this is the new standard of care going forward.

crt, then folfox/then surgery (if needed)

I am to have a colonoscopy next week to see if there is any persistent disease.

The tumor was at least 85% dead/necrotic after my first folfox session.

I am PRAYING for a ccr.

I have NO IDEA what the gameplan might be if there is a near ccr and a small amount of tumor remaining.

Good luck! I don’t know if a transanal excision is possibly an option. I know there has been some discussion about that on this board. My understanding is that these are slow to develop cancers so I suspect you have time to explore options. Are you being treated by Dr. Garcia-Aguilar? He’s awesome

[Phillypatient]

Is anyone aware of any data on the risks where pathology is inconclusive or shows very limited remaining malignancy (e.g. a few cells, but not true remaining tumor)? I know some patients don’t get surgery due to infirmities and/or choice, but I can find nothing on this. I suspect it’s because the default to surgery has been so universal
until recently and the infirm probably don’t get studied or produce useful data on recurrence or risk of metastasis.

I ask because so far I am really falling in a grey area — no palpable tumor, red (not white) scar, negative biopsy, inconclusive MRI (“near cCR”, but this was before last 4 rounds of chemo). My surgeon is going to do a TAE on the scar, but I want to be prepared to consider the pathological result, and I’m not clear there’s a lot of precedent around recurrence risk (where I think I could tolerate a relatively high level due to the ease of salvage) and metastasis risk (a whole different kettle of fish)).

Great question. I’ve read studies on untreated cancers so the results are obvious. But for a slow growing tumor and the ability to have the salvage surgery, it seems like there is no immediate rush to decide. You do risk metastis, but the reality is that if the metastis didn’t happen pretreatment, I would think the likelihood is relatively low given that most of the tumor has been destroyed. The whole concept of watch and wait is that the surgery really does alter your life

[Phillypatient]

I have been/am being treated by msk.

We did 5 weeks crt (radiation/capecetabine/m3814) and I just completed my 8th round of folfox.

I took 5 weeks In between CRT and chemotherapy.

All actions were done with giving me the best chance to achieve a pcr or ccr and avoid a colostomy.

I believe this is the new standard of care going forward.

crt, then folfox/then surgery (if needed)

I am to have a colonoscopy next week to see if there is any persistent disease.

The tumor was at least 85% dead/necrotic after my first folfox session.

I am PRAYING for a ccr.

I have NO IDEA what the gameplan might be if there is a near ccr and a small amount of tumor remaining.

Good luck! I don’t know if a transanal excision is possibly an option. I know there has been some discussion about that on this board. My understanding is that these are slow to develop cancers so I suspect you have time to explore options. Are you being treated by Dr. Garcia-Aguilar? He’s awesome

I haven’t seen Dr Aguilar.

I am in a clinical trial headed by Dr Paul Rommesar and have been treated primarily by Dr Zinavoy.

I am very grateful for the treatment received this year,

I have a colonoscopy next week to determine if there is any residual/active disease.

If there is a little left (near complete ccr), and don’t like the alternatives presented to me, I have reached out to md anderson for a possible second opinion, and alternatives to radical surgery.

I absolutely will not have a surgery that leaves me with a colostomy.[/quote]


And a ULAR sphincter saving surgery is out of the question. I also had a low rectal tumor and had a choice of surgery given the location. Some people opt for the colostomy because many times it offers a better quality of live. I’m sure you are aware of Lower Anterior Resection Syndrome

Good luck!

[Phillypatient]

My biopsy results came in today from Cleveland Clinic.

Benign.

Going to msk for confirmation.

I started crying when I read the report.

That’s awesome!!
Congrats. You have no idea of the bullet you’ve just dodged!

[roadrunner]

This is indeed a good sign, but if prior biopsies were positive (showed cancer), it has to be viewed in context, which may be important . Biopsies of rectal tumors can have low sensitivity, meaning that they can have high false negatives. In part it is because of the depth of invasion of the tumor — the deeper it goes the harder it is to get certainty through a biopsy. I also got a negative biopsy on my tumor bed some months ago (4 samples as deep as he could go), and my surgeon (a strong advocate of W&W) advised me at the time that based on clinical factors he felt there was likely still cancer there. After another 4 FOLFOX cycles and the passage of more time from chemorad, things were even better looking, but not quite the flat, white scar that is the “holy grail” of W&W. So I’m doing a TAE next week to be sure. My understanding of W&W is that it’s mostly a judgment call based on the totality of the circumstances, but visual inspection is paramount. Not to say the biopsy doesn’t help, it does, and a positive result is much better than the alternative. Just good to review and consider all the evidence. Good luck!