‘Watch” part of W&W, seeking experiences

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NoCoRick
Posts: 2
Joined: Thu Feb 21, 2019 1:31 pm
Location: Northern Colorado

‘Watch” part of W&W, seeking experiences

Postby NoCoRick » Thu Feb 21, 2019 3:43 pm

Hello,

I am a new member, but have been a regular visitor (lurker) to ColonClub for the last 15 months. The collective courage, compassion, knowledge, and wisdom of this community is inspiring, and has helped me beyond words. It is time to pay it forward.

My wife was diagnosed with Stage II Rectal cancer almost 15 months ago; our journey so far is summarized in the signature. We have been very fortunate, in so many ways. We are a 90-minute drive from a major NCI Cancer Center for treatment, and we have had exceptional and attentive care. She was offered, and was able to tolerate, total neoadjuvant (TNT) treatment without significant complication, without interruption, and with only minor dosing adjustments. She was a “good responder” and the result was complete clinical response, after completion of chemo and CRT, which has allowed her to potentially avoid surgery. This had been our hope from the beginning, and was discussed openly with our team prior to treatment commencing. The official treatment plan was, of course, always to proceed with surgery following CRT. However, given the excellent response to treatment and cCR, the team supported her decision, and agreed to proceed with non-operative management (NOM). We know she is not their only RC patient currently in NOM, but there are very few.

Her treatment was complete mid-July 2018, and we are 6+ months into active surveillance. It seems, because W&W is not a standard of care, there are no uniform guidelines/parameters for what the active surveillance should be. In our specific case, it has evolved to:

• Every 3 mos for 2 years: DRE, flexible proctoscopy, MRI of pelvis and CEA

• Every 6 mos for 2 years: CT of chest & abdomen

• After two years, the 3-month monitoring is extended to every 6 months for the next 3 years. Unsure if CT interval will be extended from every 6 mos to 12 mos.

• A colonoscopy was done (instead of Flex sig) 11/18. It was clear, so the next one will be in 3 years, and at 3 year intervals thereafter.

We are very interested in your experience with the “watch” portion, and what active surveillance programs others are following, and any other information or insight others may have. I will also add, I am happy to try to answer any questions about any aspect our journey so far. Thank you.
Husband, wife DX 11/17 at 45, low RC
Stage IIA T3N0M0, mod diff, 4-5cm from AV
MSS, no Lynch
TNT: ​8 x FOLFOX (2/18 - 5/18)
25 x CRT (6/18 - 7/18) 5000 cGy w/ IMRT + Xeloda (2000mg/day)
CEA: 1.9 @ DX, range 3.3 -1.7, not a marker
8/18 NED, Watch & Wait active surveillance
11/18 NED
2/19 NED
5/19 NED
8/19 NED 1 year!
11/19 NED
2/20 NED

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: ‘Watch” part of W&W, seeking experiences

Postby lakeswim » Fri Feb 22, 2019 3:18 pm

Good for you for being an advocate for your wife. (My husband does no research for me, so it's all on me, which makes it particularly difficult on some days when I should research but I'm too emotional to do so. Hard to stay focused!)

I did TNT and I am considering W&W. (See my post from 5 minutes ago in the Habra-Gama W&W thread.) So, I am interested in the protocol too. Esp given your wife's protocol is a bit different (more rigorous) than the one that's been suggested to me. Specifically, MRIs are done every 6 months. I'd be more comfortable with every 3.

I'm also interested in whether insurance pays for all this surveillance without any fight as it's not considered the standard of care?

Also, did your wife have a biopsy to determine her cCR? Neither my local provider or the MSK surgeon seemed to consider that as part of any decision making for a cCR. It was solely DRE, Flex Sig, and Rectal (or, Pelvic, locally) MRI.

Good luck to your wife. I will be following and may return with questions after I get the tumor board recommendation on Monday. Thanks for sharing her situation.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

NoCoRick
Posts: 2
Joined: Thu Feb 21, 2019 1:31 pm
Location: Northern Colorado

Re: ‘Watch” part of W&W, seeking experiences

Postby NoCoRick » Fri Feb 22, 2019 6:50 pm

Hi Lakeswim,

Thank you for your reply. After the initial shock(not a nearly a strong enough word) of the diagnosis, and all of the other emotions, I wanted/needed to learn as much as I could. My personality type, I suppose; the one meaningful way I knew I could help. I’m much more comfortable with numbers, facts, data and detail, than with emotions, anyway. My wife could focus on dealing with the treatment, while I began a crash course in everything rectal cancer. And this is how I found this forum.

I believe our oncologist, and surgeon, are cautious (nervous…outside of their comfort zone?) and are taking an aggressive approach with the surveillance, which we are just fine with. This means an MRI every 3 months. We did have this specific discussion with our team at our last visit; our Oncologist does not believe insurance will be a problem. We are fortunate that our insurance has, so far, not objected… but we are not very far along either.

In my wife’s specific situation, the post treatment assessment did include a biopsy, and included DRE, Flexsig, MRI and CT (w &w/o contrast), CEA, CA 19-9. cCR was determined by the absence of any evidence of cancer, with the Flexsig and DRE probably be the primary determinants. We were advised a negative biopsy was not considered a determinant. I think this is widely accepted. However, if any cancer had shown up in the tissue sampled, it would have been on to surgery.

Good luck next week, Lakeswim.
Husband, wife DX 11/17 at 45, low RC
Stage IIA T3N0M0, mod diff, 4-5cm from AV
MSS, no Lynch
TNT: ​8 x FOLFOX (2/18 - 5/18)
25 x CRT (6/18 - 7/18) 5000 cGy w/ IMRT + Xeloda (2000mg/day)
CEA: 1.9 @ DX, range 3.3 -1.7, not a marker
8/18 NED, Watch & Wait active surveillance
11/18 NED
2/19 NED
5/19 NED
8/19 NED 1 year!
11/19 NED
2/20 NED

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: ‘Watch” part of W&W, seeking experiences

Postby lakeswim » Mon Feb 25, 2019 11:49 am

NoCoRick.
You may want to pose your questions in the Habr-Gama W&W thread to get more visibility/response.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*


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