Checklists for newly diagnosed Stage IV patients?

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Do you think it would be a good idea to have a checklist for newly diagnosed Stage IV patients?

Yes
7
88%
Possibly
1
13%
No
0
No votes
 
Total votes: 8

User avatar
Peregrine
Posts: 99
Joined: Tue Mar 01, 2022 1:18 am

Checklists for newly diagnosed Stage IV patients?

Postby Peregrine » Mon May 30, 2022 1:52 am

I'm wondering whether or not it might be a good idea to have a special, structured checklist that newly diagnosed Stage IV patients could use just after diagnosis to make sure that everything is in order from a medical standpoint. This would be a checklist to insure that certain important things are not overlooked and do not "fall between the cracks". What do you think?

Are there any Stage IV patients out there who know about the existence of any such checklists? If so, please post information on how to access these resources.

Thank you.

User avatar
ginabeewell
Posts: 537
Joined: Wed Oct 24, 2018 10:30 am

Re: Checklists for newly diagnosed Stage IV patients?

Postby ginabeewell » Mon May 30, 2022 2:54 pm

My only additional thought here is that it might make sense to have a set of checklists, so that it’s clear what needs to happen in the first weeks vs months. It can be overwhelming to get so much advice right at the beginning!
48 YO mom of twins (10) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis; largest met down to 5 cm
1/18 Resume chemo (6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (9-19) FOLFOX (no OX) + Vectibix
7/19 liver resection
10/19 liver resection 2
1/20 NED!
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
Then disappeared, reappeared, radiation and now back to NED

weareallmadeofstars.net/favorite-posts

prayingforccr
Posts: 352
Joined: Sun Jun 28, 2020 4:44 pm

Re: Checklists for newly diagnosed Stage IV patients?

Postby prayingforccr » Mon May 30, 2022 6:33 pm

Let’s brainstorm, then organize………..I would make it a point to 1) get full diagnosis (stage, type, location, mutations) 2) check to see if there are any clinical trials 3) identify what insurance allows in terms of treatment center

Feel free to add items from here.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy negative for cancer.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
7/22 beginning sbrt and immunotherapy

Rock_Robster
Posts: 690
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Checklists for newly diagnosed Stage IV patients?

Postby Rock_Robster » Mon May 30, 2022 10:47 pm

If a more advanced diagnosis (eg late stage III or stage IV):

Full staging including PET-CT.

Biomarker/genomics testing, including MSS/MSI and targetable mutations.

Baseline bloods including CEA and CA19-9.

Comprehensive treatment plan developed by multidisciplinary team (not just first step). Should include direct surgical consult prior to initiating treatment.

Second opinion on treatment plan (at an NCI-designated centre if in the US).

If indicated for pain / side effects - palliative care consult.

Advanced Care Planning / living will / medical power of attorney (or whatever it is where you are).

Allied health consult - psychology/social work, dental, physio/prehab, chemo or wound care/continence nurse, etc.

Financial plan - including insurance coverage and access to necessary financial support, disability, etc.
40M Australia
2018 Dx RC, 12cm high
G2, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then <2. Jun-22: 5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo (reversed)
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
11/21 Liver met & celiac node; 2-3 tiny lung things
12/21 PVE
3/22 Nodal spread & 3 liver mets. Lymphadenectomy
4/22 Liver SBRT
6/22 Liver looks good. Still some small lung things

User avatar
Peregrine
Posts: 99
Joined: Tue Mar 01, 2022 1:18 am

Re: Checklists for newly diagnosed Stage IV patients?

Postby Peregrine » Tue May 31, 2022 4:40 am

Thanks to everyone for the comments, all of which are useful. As prayingforccr suggests, at this point in time we are probably at the early stages of "brainstorming" where we are collecting different ideas for analysis and classification into a small number of categories that will eventually lead to a bullet list of points that can finally lead to one or more checklists.

There are some issues or concerns with all of this, however.  As Gina has already suggested, there is the problem of TMI (Too Much Information) where many newly diagnosed patients are already stressed to the limit and up to their ears with Google-search information to the point that they cannot deal with a long, comprehensive list of concerns that urgently need to be dealt with.  So, this amounts to the dilemma of choosing between a long, comprehensive checklist and a much shorter one that newly diagnosed patients will actually be able to handle.

Perhaps we could first develop a comprehensive list and then decide how to prioritize it or fragment it into a smaller number of high-priority points that could be more easily addressed.

 I'm not sure exactly how to deal with this. My own preference is to develop a more-or-less comprehensive master checklist and then extract subsets of this master checklist to be used for special purposes.

The main "special purpose" that I have in mind is to have a focused checklist that will help guarantee that all of the data elements, consultations and verifications necessary for developing a truly  personalized Stage IV treatment plan are completed before any sort of treatment intervention is ever launched.  This is to insure that the necessary thinking is done up front in order to make sure that the patient is not just routinely scheduled for a one-size-fits-all palliative standard-of-care (SOC) regimen that may turn out not to be the best possible regimen to guarantee a favorable treatment outcome in their case.

And as Rob has suggested, the initial treatment planning must be thorough and multidisciplinary in nature and must lay out, in advance, all of the sequential elements of the plan, specifying the details of what kinds of interventions (chemo, radiation, surgery) are planned and in what order, with provisions for a Plan "B" or Plan "C" in case the preferred Plan "A" fails to achieve the desired results. This multi-level plan must be based on as much relevant diagnostic data that can possibly be collected and verified in the first few weeks so as to insure that the treatment is based on complete, detailed staging information.

Right now I am in the process of translating into English and adapting a 12-point cancer checklist (published earlier this year in Europe) for my own use here as a kind of boilerplate draft to start with. Actually, the European checklist has quite a bit of overlap with the list that Rob has already given, but it needs to be adapted to the American colorectal cancer context if it is ever going to be useful in the U.S.


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