The Colon Club

You're right prs, this particular surgeon was talking about pelvic exenteration because the tumor was abutting my prostate. He's always been upfront about worst case scenario. I was seriously taken aback when he said W&W. I prefer it that way, i can prepare for the worst and be ready for anything.

Thanks for the update, nifty624. I share the same sentiments. DH is about a year behind you. This was the most helpful thread for me.

Are there any other stage IV out there on W&W? DH seems to still be going strong. It’s not quite 2 years, but getting close. His last treatment was 7/29/2000, and they weren’t even sure at that point if the primary tumor had any cancer. It seemed totally destroyed, and felt the radiation would certainly eliminate it.

He officially opted for W&W in October 2020, so we will consider that as the 2 year mark although he was really NED for about 3 months before that.

His 2 year disability status qualified him for Medicare on 3/1/2022. Yay!

He just had his first colonoscopy 3/25/2022 since he was diagnosed with one on 8/23/2019, and it was good. He’ll have a follow up MRI in the upcoming days since it’s been awhile.

He continues taking the same supplements (in smaller amounts) he took pre-NED. IP6/inositol, Turkey tail (psk), MCP, occasional cimetidine (Tagamet), and berberine, quercetin, turmeric (curcumin). We don’t know how much this has helped, but feel it made at least some difference in getting us to this point.

His W&W schedule hasn’t been consistent. He was originally every 3 months, then got switched to 6 months, but only once. Then he switched doctors which made his recent check up happen 2 months earlier (so this week was after 4 months). His new doctor wants it to be back to every 3 months.

I agree with others who have recommended to be monitored closely in the beginning. We shouldn’t be too confident so soon since a substantial percentage of recurrences happen within the first 2 years.

Yes, close monitoring is what I advocate for. Cancer is what it is and I really believe close monitoring helps to not miss the surgery boat if needed/available.
Your supplements are good ones.

The biopsy results from our 3/25 colonoscopy weren’t what we hoped for. DH was released with good news. The bump was determined to be a cyst.

It was ulcerated, and we felt he caused the mild bleeding while administering an enema the previous Monday before a scheduled W&W follow-up.

The lab found high grade dysplasia.

We are surprised because the colonoscopy team sent us home with great news that there was no tumor.

We currently have an MRI scheduled for 4/18. We are waiting for the surgeon to follow up, and are ready to prepare for surgery. Does anyone know how they could find high grade dysplasia with a cyst, and no apparent tumor?

Does anyone have a similar experience? Any recommendations?

Quick follow up since the surgeon called us today. She told us there is no urgency, a relief.

The next step will be the MRI and an ultrasound with a biopsy that will go deeper into the location where the high grade dysplasia was discovered on the surface. That will give us a better indication about whether cancer is present.

If cancer is present, surgery will be necessary. If no cancer is discovered, he will have the option to continue with W&W or to schedule the surgery anyway.

We have decided in either case to go with the surgery. It will result in a permanent colostomy. Over the past 3 years there has been a lot of anxiety and learning. Originally he was strongly opposed to a permanent bag. Now he’s comfortable with making that adjustment.

Knowing what we know now, and having time to adapt to the idea of a permanent bag, it is a no-brainer. We both feel very fortunate that he still has that option, and can potentially enjoy many cancer-free years.

Our plan is to abandon W&W, and the reason is that high grade dysplasia was discovered (accidentally). We believe cancer is imminent if it has not already begun.

This seems like a wise decision. If my husband were to need a permanent colostomy right now I know he wouldn’t take it well at all; i’m glad to read that yours is now comfortable with the idea. I’ve got this article saved up, to show my husband, in case it’s his turn someday...
https://cancerwellness.com/cover-story/ ... on-cancer/

That’s a great piece. There are also a number of YouTubers with stomas who produce tons of helpful, positive, and honest content on this.

That was a very nice article, Claudine. Thank you for sharing. Dogs are therapeutic, no question about it. We had a best friend a long time ago. When he left us, it killed our spirit.

jsbsf wrote:Quick follow up since the surgeon called us today. She told us there is no urgency, a relief.

The next step will be the MRI and an ultrasound with a biopsy that will go deeper into the location where the high grade dysplasia was discovered on the surface. That will give us a better indication about whether cancer is present.

If cancer is present, surgery will be necessary. If no cancer is discovered, he will have the option to continue with W&W or to schedule the surgery anyway.

We have decided in either case to go with the surgery. It will result in a permanent colostomy. Over the past 3 years there has been a lot of anxiety and learning. Originally he was strongly opposed to a permanent bag. Now he’s comfortable with making that adjustment.

Knowing what we know now, and having time to adapt to the idea of a permanent bag, it is a no-brainer. We both feel very fortunate that he still has that option, and can potentially enjoy many cancer-free years.

Our plan is to abandon W&W, and the reason is that high grade dysplasia was discovered (accidentally). We believe cancer is imminent if it has not already begun.

@jsbsf I'm so glad you have made a decision you are comfortable with. I'm certainly a proponent of W&W, but I always try hard to make sure my posts are neutral and do not try to influence posters one way or another.

I had never heard of dysplasia when you first posted and had to google it. I understand it is not cancer but can sometimes be a prelude to cancer. I fully understand this has caused a huge increase in stress level, and the urge to get rid of that stress once and for all must be very powerful. Hopefully you'll get some good news from the MRI and maybe the surgery could be less invasive than a permanent colostomy?

Thanks Peter. I had heard of dysplasia before, but not with regard to the colon. I remember my sister telling me her ovaries had dysplasia years ago, and I sort of dismissed it as no big deal. I think I was hearing dysplasia and thinking “displacement” as if they had moved a bit.

But over the last week I’ve read quite a bit about it. DH had his CT scan 3 months ago. They always report “diffuse wall thickening”, something else I recently investigated. “Diffuse” seems to be the key word, and so nobody was ever alarmed.

His previous physical exam was about a month earlier, and nothing seemed out of the ordinary.

After this more recent checkup, the (new) surgeon found a “mass” she couldn’t explain and assumed it was a tumor. It was ulcerated. She scheduled a pretty immediate colonoscopy for the end of that week.

The colonoscopy findings were a small polyp in a different location, and determined the suspicions “mass” was merely a cyst.

They took a tissue sample there anyway. Had they not, we would never have been made aware of the high grade dysplasia.

So there is some confusion. I’m thinking there might be some small thing more serious going on that inflamed the area somehow, creating the cyst. I’ve also read about something called nonpolypoid tumors that can be flat or even depressed, and hard to diagnose on a colonoscopy.

We know for sure that the lump was a cyst, and not a tumor. But we also know they discovered high grade dysplasia on the surface of the cyst.

ok, so i'm officially on W&W. Scans and sigmoidoscopies every 4 months. Surgeon told me today that highest odds of recurrence are in the first year, so i'll be expecting it. For now, it's good to avoid surgery and be ok. I can't imagine being lucky enough to get away with it, but at least my team of doctors supports it and has a program to manage it. I'll be ready if it goes sideways.

Congratulations MadMed! That’s excellent news!

MadMed wrote:ok, so i'm officially on W&W. Scans and sigmoidoscopies every 4 months. Surgeon told me today that highest odds of recurrence are in the first year, so i'll be expecting it. For now, it's good to avoid surgery and be ok. I can't imagine being lucky enough to get away with it, but at least my team of doctors supports it and has a program to manage it. I'll be ready if it goes sideways.

Many congratulations @MadMed!!! I'm so sorry it took me so long to find your great news. Sometimes things get in the way of everyday life,,,eek!

@Madmed ! Welcome to the WW club !

Reporting my 3.5 years of WW journey as of July !! Looking forward to the 4 year mark now... even had the next scope and scan booked in December !

I had a bit of a scare on the PET as something lit up in the nose area. Had to follow up with an ENT with several tests and it turns out to be an unexplained harmless inflammation. I have to say my heart sank when they said "something lit up" ........ Definitely not words that a WW survivor wanna hear !!! Had to count my blessings all over again when all the tests cleared.

Congratulations on the 3 years Jolene. Just had my first colonoscopy post treatment. All is ok so far. Clean CT, MRI and colo.
Yikes on your scare, nose?? That’s a weird one. Glad it’s nothing. I had a scare like that on my CT, slightly enlarged mediastinal lymph node. Weird to go from RC straight to a chest lymph node without stopping somewhere. My oncologist told me last week that they are getting a lot of freaked out breast cancer survivors due to the same mediastinal swelling, it’s apparently due to the Covid shot!!! And will manifest on the side of which arm you get the vaccine. We’ll confirm on the next CT

I’m rooting for you, let’s hear it for 4 years NED! My surgeon told me each cycle of surveillance odds of recurrence drop.