Stage 3B Colon Cancer - Lurking Here - Have some questions

[Blakeacw]

Good Morning everyone -- I have been lurking on the board since early September - finally got my act together enough to post something. This is an amazing forum , with such a range of support , positivity , realities , hope and information - it's been of tremendous help to me in the last 100 days Thanks to ALL - I promise to chime in where appropriate as I can see the benefits other can gain from my experiences as well.

51m / Stage 3b Colon Cancer from this August - per my signature - successful colectomy. Surgeon and Oncologist were both positive about my prognosis. I start round of 5 of 12 folfox tomorrow - liver enzymes popped up last round , they reconfirmed them , so not sure what that means for tomorrow's cycle., we will see. So far side effects have been pretty much the range of what others have posted - although I had two terrible days of neuropathy in the last cycle and my fatigue / energy level is getting the better of me.


Two questions:

1) I elected to move fast on my treatment - given it was a fairly " simple" case - is there such a thing ? - I am thinking now , does it make sense to have someone review my pathology and treatment as a second set of professional eyes ? it's not a concern over the doctors , more about seeking additional consult and information

2) Told we will do CEA at end of chemo treatment and also the scan \to establish the baseline going forward - assuming this is typical - but I guess in the back of your mind , you don't want another hurdle in front of you after these twelve rounds - but I guess that wouldn't matter anyway - seems like such a range across the board on the SCAN front / CEA numbers - not sure if that is case based / MD opinion or adjuvant vs. neo-adjuvant treatment ? - would love some opinions.

Once again , I am humbled by everyone's willingness to share something personal and difficult on this board - it's quite humbling and I cannot give enough gratitude.

Best

Blakeacw

[Blakeacw]

Bumping this up , hoping to see a reply

[beach sunrise]

Hi, question 1 in my opinion is a BIG YES on second impressions. As CRguy says "You miss more by not looking..than not knowing."
Question 2 in my opinion is it depends on if the patient wants to know CEA during treatment then he/she should request it if its a good marker for them.
As for scans, its what you feel comfortable with as far as your onc's plan. I requested them every 3 mths and so far they have been accommodating.
I don't know if my opinion is that great but you asked
FOLFOX is rough stuff for sure!!! Keep us updated on your treatment.
I hope you have a wonderful Thanksgiving!

[horizon]

#2 we call that "scanxiety". I was always a nervous wreck before scans but I always felt better knowing afterwards.

Make sure to tell your oncologist about the neuropathy. He dialed back my Oxi dosage when I did.

[boxhill]

CEA was determined not to be a marker for me at the outset, so it was tested only occasionally. It isn't a marker for about 30% of us.

[Green Tea]

...
Two questions:

1) I elected to move fast on my treatment - given it was a fairly " simple" case - is there such a thing ? - I am thinking now , does it make sense to have someone review my pathology and treatment as a second set of professional eyes ? it's not a concern over the doctors , more about seeking additional consult and information

- PATHOLOGY REVIEW: Yes, I think it would help in determining whether you are a medium-risk Stage 3B or a high-risk Stage3B. The NCCN uses about half a dozen data items from the pathology report to do risk assessment.
- TREATMENT REVIEW: No, I think FOLFOX 12 cycles is standard for Stage 3B, and not much else can be done now except perhaps a dose adjustment in oxaliplatin.

2) Told we will do CEA at end of chemo treatment and also the scan \to establish the baseline going forward - assuming this is typical - but I guess in the back of your mind , you don't want another hurdle in front of you after these twelve rounds - but I guess that wouldn't matter anyway - seems like such a range across the board on the SCAN front / CEA numbers - not sure if that is case based / MD opinion or adjuvant vs. neo-adjuvant treatment ? - would love some opinions.

- CEA: The usefulness of CEA as a marker depends in part on what happened to your CEA before vs. after surgery. If CEA was high before surgery and dropped markedly after surgery, then it can probably be useful as a recurrence marker during your followup period. If not, it is probably useless.
- SCANS: Scans during the followup period are somewhat problematic. If a new spot show up on a scan then they will want to do a new scan in a month or two to see if the spot is still there or if it has changed in size. This unfortunately guarantees a couple months of scanxiety for the patient. They will not do anything at all treatment-wise until the results of the verification scan are evaluated or a new PET/CT scan or an MRI are done for confirmation.

P.S. The above comments are just my personal opinion.

[Blakeacw]

Thanks everyone for the replies so far. My Round 5 got delayed a week yesterday - platelets and neuropathy - they are going to reduce the oxi next round a little bit to avoid permanent nerve damage

Love the term - scanxiety - the certainty is desired but not realistic

Green Tea - very helpful on the NCCN information to determine that risk level - I've been lost in the blizzard of google and that's great information