Surveillance Plan Questions

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beach sunrise
Posts: 70
Joined: Thu Mar 05, 2020 7:14 pm

Surveillance Plan Questions

Postby beach sunrise » Tue May 12, 2020 2:01 am

Hi all, round 7 FOLFOX6 coming up Monday then will be presented with a surveillance plan for 5 yrs before final round 8.
Questions:
What did/does your plan consist of?
Do you feel like you were/are being monitored enough?
In hindsight, is there anything you would have pushed for more during surveillance?
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: Surveillance Plan Questions

Postby JJH » Tue May 12, 2020 1:45 pm

beach sunrise wrote:What did/does your plan consist of?

    I was not given a written plan. My five-year surveillance period was managed by my surgeon, who was the last doctor to treat me (ileostomy reversal, 6 weeks after last chemo). My oncologist was not involved, but would have been contacted if any of my tests had turned out to be suspicious. I had CEA and CA19-9 blood tests done every three months, and a CT scan once a year. At the 6-month point in each year I had ultrasound scans instead of CT scans.
.
beach sunrise wrote:Do you feel like you were/are being monitored enough?

    No. This is because I feel that a comprehensive surveillance plan should include not only surveillance for cancer recurrence, but also for all of the non-malignant health problems that fall in the general category of "Treatment-Induced Disorders". These are the various health problems related to long-term, lingering after effects of the cancer treatment -- i.e., long-term effects of CRC surgery, long-term effects of chemotherapy, and long-term effects of any radiation therapy that had been used.

    My surveillance only concerned surveillance for possible cancer recurrence. It didn't cover anything else, and this was a woefully inadequate approach, in my opinion.

    In the article below, you can get an idea of some of the areas that need to be monitored but are outside of the domain of "cancer".

beach sunrise wrote:In hindsight, is there anything you would have pushed for more during surveillance?

    Transition Checklist
    Below is a sample checklist to help determine if the appropriate steps have been completed to transition the patient to survivorship-focused care. You can also download a modifiable version of this checklist.
    1. Does the patient have an established relationship with a PCP?
    2. Has the survivorship care plan (SCP) been transmitted to the PCP or provider in charge of long-term follow-up care?
    3. Have additional resources, such as guidelines, been provided to the PCP?
    4. Has patient received the SCP?
    5. Has the patient been given the opportunity to review the SCP with a member of the care team?
    6. Has the transition of care been clearly communicated to the patient so that s/he understands who will be the lead in coordination of care?
    Ref: https://www.asco.org/practice-policy/cancer-care-initiatives/prevention-survivorship/survivorship/survivorship-5
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

beach sunrise
Posts: 70
Joined: Thu Mar 05, 2020 7:14 pm

Re: Surveillance Plan Questions

Postby beach sunrise » Tue May 12, 2020 2:32 pm

Thank you Thank you so much, JJH!!! Your insight is so helpful.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer

User avatar
CRguy
Posts: 10144
Joined: Sun Feb 10, 2008 6:00 pm

Re: Surveillance Plan Questions

Postby CRguy » Wed May 13, 2020 6:29 pm

beach sunrise wrote:What did/does your plan consist of?
I would refer you to my signature link Review of my Journey so far

Do you feel like you were/are being monitored enough?
Yes, both times : we had good monitoring post-resection and post met !
My lung met was picked up early on as an easily VATS resectable single = Monitoring worked.

In hindsight, is there anything you would have pushed for more during surveillance?

After the met I was VERY aggressive in pushing the lead Onc to do MORE than just the required baseline
so far ..... so good. I probably had more CT radiation than he liked or I may have needed ... BUTT ...
I can say that NOW in hindsight and I would NOT have changed that plan !
He finally kicked me out after about 5 years and my family Doc and I cooked up my own surveillance monitoring, which once again
so far ..... so good

The specific I focused on was : More eyes on the situation and more kinds of monitoring BECAUSE ...
I have said this a million times here :

" You WILL MISS more for not looking ... than not knowing ! "

I made sure we were always "looking", whether by bloods / CT / MRI / Xrays / Ultrasounds / PET where needed
and there were multiple "eyes" checking on my results

Cheers and best wishes on the Journey
KEEP ON LOOKIN'
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

beach sunrise
Posts: 70
Joined: Thu Mar 05, 2020 7:14 pm

Re: Surveillance Plan Questions

Postby beach sunrise » Wed May 13, 2020 7:05 pm

Thank you so much for your input, CRguy!!! I went out on my own today and got more blood panels and cancer markers done because it needed to be expanded and got elbowed in the ribs so to speak for the last time by onc. You, JJH and rp1954 have gave me a lot to do and research. I can not thank you all enough!!!
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer

Rock_Robster
Posts: 495
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Surveillance Plan Questions

Postby Rock_Robster » Wed May 13, 2020 9:48 pm

Hey beach sunrise, the others have given great advice so I’ll just give you details of my surveillance plan for reference:

For the first 2-3 years:
- quarterly scans alternating CT and PET
- quarterly liver MRI (my liver has been an issue and doesn’t image well on CT)
- quarterly bloods - CEA and CA19-9
- annual colonoscopies

For the remaining 2-3 years (total 5 years):
- likely to move to 6-monthly scans
- probably drop the dedicated liver MRI if we haven’t already
- keep quarterly bloods
- keep annual scopes

Beyond 5 years:
- colonoscopies, frequency to be determined

Cheers
Rob
Male 38; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9.
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic VMAT radiation; complete metabolic response
07/19 ULAR (robot), temp ileo, 1/27 LN
08/19 Missed a liver spot
08-11/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection #2
02/20 Ileostomy reversed
03/20 PET & MRI = NED!

beach sunrise
Posts: 70
Joined: Thu Mar 05, 2020 7:14 pm

Re: Surveillance Plan Questions

Postby beach sunrise » Thu May 14, 2020 12:32 am

Thank you so much, Rob!!! I just put your surveillance plan in my notes. Are you under onc or surgeon? I'm thinking I might request to be under surgeon.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer

Rock_Robster
Posts: 495
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Surveillance Plan Questions

Postby Rock_Robster » Thu May 14, 2020 4:33 am

beach sunrise wrote:Thank you so much, Rob!!! I just put your surveillance plan in my notes. Are you under onc or surgeon? I'm thinking I might request to be under surgeon.

No worries at all. My onc runs the plan, the liver surgeon checks the liver MRIs, and my colorectal surgeon does the scopes. The colorectal surgeon offered to run the plan but given the distant disease I thought it best the oncologist coordinates (plus he’s very diligent). All get copied on all results anyway of course.

Cheers
Rob
Male 38; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9.
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic VMAT radiation; complete metabolic response
07/19 ULAR (robot), temp ileo, 1/27 LN
08/19 Missed a liver spot
08-11/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection #2
02/20 Ileostomy reversed
03/20 PET & MRI = NED!

Rock_Robster
Posts: 495
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Surveillance Plan Questions

Postby Rock_Robster » Thu May 14, 2020 4:36 am

Also I should add just for background:

- the dedicated liver MRIs are a bit unusual (and arguably excessive in most cases - they’re expensive and time consuming). They’re just there because I had a met that was missed on CT but caught on MRI.

- doing two PETs a year is also arguably excessive from a cost and radiation perspective. My oncologist just doesn’t like to rely on CTs alone for imaging, hence the alternating with PET. I suspect many would say annual PETs is more than sufficient.

I was keen to do monthly bloods but the onc discouraged it given the likely small fluctuations in any 4-week period; the only thing a single increase would indicate is to wait a month and do another couple of tests to see if there’s a trend.

I was also keen to do ctDNA/CTC testing for monitoring, but that’s another discussion entirely :) .

Cheers
Rob
Male 38; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9.
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic VMAT radiation; complete metabolic response
07/19 ULAR (robot), temp ileo, 1/27 LN
08/19 Missed a liver spot
08-11/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection #2
02/20 Ileostomy reversed
03/20 PET & MRI = NED!

beach sunrise
Posts: 70
Joined: Thu Mar 05, 2020 7:14 pm

Re: Surveillance Plan Questions

Postby beach sunrise » Thu May 14, 2020 4:15 pm

thank you!!! I have until Monday to get a surveillance plan in place to compare to the one onc thinks. My gut tells me he will only have the minimum required so I need to be prepared.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: Surveillance Plan Questions

Postby JJH » Sat May 16, 2020 11:59 pm

beach sunrise wrote:thank you!!! I have until Monday to get a surveillance plan in place to compare to the one onc thinks. My gut tells me he will only have the minimum required so I need to be prepared.

beach sunrise wrote:My onc is very conservative... He really just wants me to follow along blindly... I have to advocate for myself ... I really need to get some extra markers done for the now benefit or potentially later...

beach sunrise wrote:...Its like pulling teeth to get onc to give me a copy of anything. So frustrating.

beach sunrise wrote:... He never did answer my question, lol. I don't think he likes self educated patients.


It sounds to me like you are dealing with an onc who could be described as "a difficult doctor". I don't know what to suggest. Maybe you just need to be prepared to set up a more comprehensive Do-It-Yourself (DIY) surveillance plan with the help of a different doctor. I'm not sure what's best to do in this type of situation.

Tips for Working with Difficult Doctors
https://www.the-hospitalist.org/hospitalist/article/121391/tips-working-difficult-doctors

How to Deal With an Arrogant Doctor
https://www.verywellhealth.com/how-to-deal-with-an-arrogant-doctor-2615003

Nursing Tips On How To Deal With Difficult Doctors
https://www.nursebuff.com/5-nursing-tips-on-how-to-deal-with-difficult-doctors/

The difficult doctor? Characteristics of physicians who report frustration with patients: an analysis of survey data
https://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-6-128

Doctors in Difficulty or Difficult Doctors?
https://www.medscape.com/viewarticle/926511
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

beach sunrise
Posts: 70
Joined: Thu Mar 05, 2020 7:14 pm

Re: Surveillance Plan Questions

Postby beach sunrise » Sun May 17, 2020 2:16 pm

Hi JJH, you nailed it. Before round 6 folfox I asked for the last time about extra blood panels and scans so my onc gave me an analogy using halftime at a football game, the ball is in the air. My reply was a better analogy would be a crime scene investigation where you have this on scene and need to dig for the rest of info to solve. He shook his head and walked me to the stairs to go up to chemo floor.
You gave me a lot of info to think about and research. Thank you for that. I am getting all my reports together and will give them to surgeon, gyn, thyroid dr, cardiologist, family dr. One way or another I will get the surveillance I believe I need being high risk for stage IV.
I went out on my own and got more bloodwork markers for monitoring. The extra cancer markers take longer so one day next week they should be in. I am currently putting it all together on a spreadsheet to keep up with to look for trends.
If they try to give me a surveillance plan tomorrow I will reject it because onc will not be there and want to go over it with him not the nurse.
You guys input plus reading extensively here has opened my eyes to the fact onc's are there for chemo treatment of active cancer. It would have been nice if onc had said for risk of heart, DVTs, gyn cancers, liver cancer, lung cancer you need to be monitored by that specialty. I could have set this up a long time ago. Now I am scrambling.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer

beach sunrise
Posts: 70
Joined: Thu Mar 05, 2020 7:14 pm

Re: Surveillance Plan Questions

Postby beach sunrise » Mon May 18, 2020 3:34 pm

CEA after round 7 FOLFOX6 is at 12. Still to high! First downward trend and only one more planned treatment to go. So, since it is finally on downward trend I think I need 12 rounds of folfox?
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: Surveillance Plan Questions

Postby JJH » Wed May 20, 2020 12:52 pm

beach sunrise wrote:... I am getting all my reports together and will give them to surgeon, gyn, thyroid dr, cardiologist, family dr. One way or another I will get the surveillance I believe I need being high risk for stage IV...

Do you have a Naturopath Doctor on your team? Some of the Stage III members here fine-tuned their surveillance plans by consulting with NDs.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

beach sunrise
Posts: 70
Joined: Thu Mar 05, 2020 7:14 pm

Re: Surveillance Plan Questions

Postby beach sunrise » Wed May 20, 2020 11:13 pm

Hey JJH, no I haven't thought about it. I'll look into it though to see. Thank you for the info! I hope you are doing good?
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer


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