How long to followup Stage 4 ?

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betsydoglover
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Location: Maryland - outside DC

How long to followup Stage 4 ?

Postby betsydoglover » Sun Nov 05, 2017 6:17 pm

Hi all -

I know that every stage 4 person is different, different start of disease, different progression, different response to treatment, different treatments - the list goes on. You can see from my signature how lucky I've been - the 2nd round of NED has been 8.5 years.

If there is anyone who has a history remotely like mine, how long have you continued CT scan surveillance? The outlier fact is that I never had a liver resection, but liver has been clear for 12 years.

Any thoughts would be appreciated. My oncologist will never use the "cured" word - neither will I - just how we are, but at the same time I'm not sure I should keep on scanning for the rest of my life,

Thanks for any thoughts,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 11/17

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: How long to followup Stage 4 ?

Postby Bev G » Sun Nov 05, 2017 8:25 pm

Hi Betsy,

I was diagnosed in 19/09 with a single large liver met inc caudate lobe. I had liver resection in 4/10. Then chemo, scan after scan after scan until I was 5 years NED. We moved to Vermont for treatment for my husband's lymphoma (bone marrow transplant 4 years ago. My care was transferred to Dartmouth where I saw a GI oncologist a couple of times. At one point, as a result of a scan, he thought I had a new (esophageal?) primary. Had a bunch of stuff done (bronchoscopy, biopsies, etc) and they decided it was "nothing". That onc moved shortly after and I was assigned a new GI onc. She told me she would do NO further testing without specific indication. NO scans, no CEAs, no nada. I was initially pretty uncomfortable with that plan, butt I came to terms with it without too much of a problem. I have had so many dozens of scans, and have so many health complications I pretty glad to just pretend that I'm all done with the cancer. It IS a strange idea---no further monitoring....but CEAs were never a good marker for me, I never had a recurrence and I have more than enough other medical problems to have monitored (no balance, frequent falls, losing eyesight---getting monthly shots IN my eyeballs. YICK. and seem to have something not great going on with my kidneys. I had previously decided if I had a CRC recurrence I would not take any more chemo. So...I think I'm just counting my blessings and keeping my fingers crossed.

Good luck, Betsy.

Warm best wishes,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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CRguy
Posts: 9283
Joined: Sun Feb 10, 2008 6:00 pm

Re: How long to followup Stage 4 ?

Postby CRguy » Sun Nov 05, 2017 11:51 pm

Officially I was followed at the cancer center from 2010 VATS surgery date until July 2016, because I pushed the Onc hard to do so.
Original resection was 2007 and my details are in the linked topic from my signature here. ( Had lotsa CTs )

I am currently doing ( tomorrow actually !!!! :shock: :mrgreen: ) ultrasound and xrays in my self directed "follow up" with my GP.
I can get back to CT / PET / MRI as needed if anything of concern shows up and am doing every 3 years colonoscopies.

I think once we're Stage IV and out a few years there really are no strict protocols and it just depends on your own docs, and your own initiative, on how to proceed.
JMO anyway

Cheers
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

NedPlease
Posts: 522
Joined: Fri Mar 23, 2012 3:56 pm

Re: How long to followup Stage 4 ?

Postby NedPlease » Mon Nov 06, 2017 3:24 pm

I hear ya!

No more scans are being recommended for me but I see my onc for a followup next summer and can discuss more about any further surveillance.

Bev, I hate that you have other complicated health issues but love hearing you've not had a colon cancer recurrence. You're one of the rock stars around here.

CR (another rock star), thanks for answering because I may ponder ultrasounds and X-rays as possible alternative surveillance methods. I had only thought MRI. Certainly I'm concerned about additional CT radiation so a less expensive option with much less exposure is, of course, preferable. I'll assume it's a chest X-ray but what is the specific ultrasound order? I hope to read more about this from you.

Best to all,
N
F-54- St 4- Ascend Colon, 2 Liver mets, Poorly dif, Mutant
6/10- Folfox
9/10- R Liver Resect/Colon/Gall/Appendix
11/10-3/11- Folfox
11/11- R Lung, 1 met, VATS
3/12- 9/12- Xeloda
2/12- 7/17 Clear Scans
Today- NED

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CRguy
Posts: 9283
Joined: Sun Feb 10, 2008 6:00 pm

Re: How long to followup Stage 4 ?

Postby CRguy » Mon Nov 06, 2017 3:55 pm

In the CRC setting, Usounds would be ok for abdominal effusions, cystic structures, surfaces of organs and needle guided biopsies ... BUTT not a primary go to for CRC diagnosis.
I am getting them done to follow up of fatty liver changes and a fat mass in one lobe area. I don't have any cystic or solid masses involved or known mets.

Multi view survey xrays of chest / abdomen down to pelvic floor are an alternate screening and surveillance method for primary diagnosis or follow up.
CTs have radiation and contrast associated risks. I've had lots of CTs and am ok with decreasing the radiation exposures now, as I can always go back for CT / PET / MRI as required.
MRIs can be great for many things BUTT may not be necessary for a lot of things. They are generally less used due to availability and costs and come with their own inherent risks associated with the contrast.

Bottom line : Radiologists love contrast CTs and MRIs for the most part ... BUTT as I said they are not always necessary for many purposes.
I believe some combination of CT / PET / MRI / Xray / C-scopes should be used at initial diagnosis to cover all bases, then adjust once you know what you are dealing with.... = my exact situation from the start.

Have a talk with your Docs and if they agree, then try the xray / Usound for a year ????
Just make sure they will up the ante IF you need something else done.

I have a very good Doc who agrees with my approach and will request other imaging as we decide, based on my status.

Cheers
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Utwo
Posts: 141
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: How long to followup Stage 4 ?

Postby Utwo » Mon Nov 06, 2017 9:00 pm

Wow!

CRguy, thank you for a detailed comparison of risks of CT san, X-ray and MRI with and without contrast.

Is this your own summary?
Do you have a linke to an article with a more detailed comparison by any chance?
58 yo male at diagnosis - T1bN0, 0/15 lymph nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed
05/2016 CT scan, blood test ...
05/2016 laparoscopic right hemicolectomy with a few complications (bleeding, leak, infection)
06/2017 CT scan, colonoscopy OK; CEA = 1.6

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CRguy
Posts: 9283
Joined: Sun Feb 10, 2008 6:00 pm

Re: How long to followup Stage 4 ?

Postby CRguy » Mon Nov 06, 2017 10:51 pm

Sorry, just my own accumulated experience and opinion :shock:
Cheers
CR
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

stu
Posts: 602
Joined: Sat Aug 17, 2013 5:46 pm

Re: How long to followup Stage 4 ?

Postby stu » Tue Nov 07, 2017 4:59 am

Hi ,
Oh it is a hard decision . My mum was to stop scanning and the last scan showed a lung met!!! So once that was dealt with she went back to every six months . There was talk of pushing that back to a year but they took cold feet and booked a six month scan instead . They feel due to the lack of protocol their judgement is she does better with surgery than she would with chemo so its best to stay on top of it . My mum is fine with that . She feels comfortable . So I guess that’s all that matters .
Take care everyone
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

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juliej
Posts: 2737
Joined: Thu Aug 05, 2010 12:59 pm

Re: How long to followup Stage 4 ?

Postby juliej » Tue Nov 14, 2017 3:42 pm

betsydoglover wrote:Any thoughts would be appreciated. My oncologist will never use the "cured" word - neither will I - just how we are, but at the same time I'm not sure I should keep on scanning for the rest of my life,

Betsy, my oncologist basically said "we are in new territory here." There just isn't an official protocol on how to monitor Stage 4 survivors.

I just "graduated" to 6 month scans on my last visit. BUT she wants to keep all the labs (CEA, LDH, CMP, CBC) every 2 months for now. However, I was a pretty "hard-core" Stage 4. At diagnosis, I had several mets to my liver and one in each lung. I've had clear scans for quite awhile now so things are looking good. :D I suspect she'll go to yearly scans at some point, but for sure not until my HAI pump has been removed. Is CEA a good marker for you? If so, could you have yearly CEA and based on that, either have/not have a CT scan? Just a thought...

CRguy wrote:I am currently doing ( tomorrow actually !!!! :shock: :mrgreen: ) ultrasound and xrays in my self directed "follow up" with my GP.
I can get back to CT / PET / MRI as needed if anything of concern shows up and am doing every 3 years colonoscopies.

CRguy, how were your ultrasound and xrays? Everything still good? I'm due for my 3 year colonoscopy next month. Oh joy. :roll:

CRguy wrote: In the CRC setting, Usounds would be ok for abdominal effusions, cystic structures, surfaces of organs and needle guided biopsies ... BUTT not a primary go to for CRC diagnosis.
I am getting them done to follow up of fatty liver changes and a fat mass in one lobe area. I don't have any cystic or solid masses involved or known mets.
Multi view survey xrays of chest / abdomen down to pelvic floor are an alternate screening and surveillance method for primary diagnosis or follow up.

Thanks, CRguy! Great info on using alternative diagnostic imaging! I will talk to my docs about this in the future (assuming everything keeps going well for me!).

Question: what are the limits of xrays? Do they show the difference between scarring and something else? Would they show something more complex, like for example, interstitial lung disease? Since xrays show radiodense tissues, I thought they showed mostly bone and some minor lung detail??? Gland and scar tissue show up but tend to get lost in the clutter, I thought. Just curious... and I know you know a lot more than me (and most folks)! :D

xo,
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 10/2/2017, CEA<1

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betsydoglover
Posts: 879
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Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: How long to followup Stage 4 ?

Postby betsydoglover » Tue Nov 14, 2017 5:16 pm

Thanks All -

As Julie said, we are in uncharted territory - my onc would be the first to say that. I guess I will keep getting blood work (CEA, however, has never been a marker - highest ever was 0.9 - normally <0.5. And, even with my liver met, liver function was normal.)

Maybe one more scan - I'll see what she says, but at this point I am pretty sure she is going to mostly let it be my decision. CRGUY, I'll ask her about the XRAY / US option.

Take care everyone,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 11/17

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CRguy
Posts: 9283
Joined: Sun Feb 10, 2008 6:00 pm

Re: How long to followup Stage 4 ?

Postby CRguy » Tue Nov 14, 2017 5:59 pm

juliej wrote:
betsydoglover wrote:Any thoughts would be appreciated. My oncologist will never use the "cured" word - neither will I - just how we are, but at the same time I'm not sure I should keep on scanning for the rest of my life,
Betsy, my oncologist basically said "we are in new territory here." There just isn't an official protocol on how to monitor Stage 4 survivors.

WORD ... DOUBLE WORD and ...
juliej wrote:I just "graduated" to 6 month scans on my last visit. BUT she wants to keep all the labs (CEA, LDH, CMP, CBC) every 2 months for now. However, I was a pretty "hard-core" Stage 4. At diagnosis, I had several mets to my liver and one in each lung. I've had clear scans for quite awhile now so things are looking good. :D I suspect she'll go to yearly scans at some point, but for sure not until my HAI pump has been removed.

Wanna see how it's done = read juliej
TRIPLE WORD !!!!!!
juliej wrote:CRguy, how were your ultrasound and xrays? Everything still good? I'm due for my 3 year colonoscopy next month. Oh joy. :roll:

Have not booked the follow up consult yet … you KNOW ME … have a couple of other tests to run and just want to get ALL the info for the visit so we have everything
nothing major … I do occasional 24 hour urine collections and a few other regular bloods ( from another Doc ) so ONE appt time is good for me now with ALL the info at once = just ME :mrgreen: I know I know......
juliej wrote:Thanks, CRguy! Great info on using alternative diagnostic imaging! I will talk to my docs about this in the future (assuming everything keeps going well for me!).
Question: what are the limits of xrays? Do they show the difference between scarring and something else? Would they show something more complex, like for example, interstitial lung disease? Since xrays show radiodense tissues, I thought they showed mostly bone and some minor lung detail??? Gland and scar tissue show up but tend to get lost in the clutter, I thought. Just curious... and I know you know a lot more than me (and most folks)! :D
xo,
Juliej

basic “rule” = xrays “like” density gradients = metals, contrasts, bone, dense tissue, less dense tissues, air.
ultrasounds like density “interfaces”, liquid on solid, liquid on less liquid, = hate air on air, which is = lung tissues for the most part.
CTs are just enhanced computer generated 3D multiple xrays all added up to give a “virtual” picture
MRI = totally different technology of a computer enhanced image constructed from the “resonance” of tissues and contrasts based essentially on water molecules
we ARE after all 98% water
PET scans = metabolic activity measured and reconstructed into a virtual image based upon “ radioactive labelled” glucose uptake of the tissues

SO in a nutshell : depends upon what you wanna see … which modality you would use
AND … which resolution you need

A low res CT would be worse than a GREAT Xray … IMO.
A high res CT with contrast would probably be better than the Xray … IMO
AND ALL radiologists love to see their contrast CTs = what their comfort zone is.
MRI = very good resolutions and no “radiation” exposures, SO if I had to choose just ONE imaging modality I would probably opt for MRI
in many … BUTT NOT ALL situations.
Hopefully none of us have to choose just one, so that is why I constructed my follow up plan in the world of “ No Official Protocol ” the way I did.
I know I have told y’all I have A GREAT GP and if and when I need something not in the playbook I will get it privately.

As to interstitial thoracic disease per se a high quality xray is a great choice, possibly guided by exact signalment, to a follow up imaging protocol for more specifics

as always homies ... = JMO :shock:

Great chattin' with you again JJ
YOU don't be no stranger 'round HERE

YOU HEAR !!!! :mrgreen: :mrgreen: :mrgreen:
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far


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