The Colon Club

My husband finally got the results from his biopsy today . . . the lymph node tested positive for cancer . . . they want to do a PET scan to see if hopefully it's just this one node, and maybe it can be surgically removed . . . I don't know what else to say . . . my husband is so strong and just takes all of this in stride and I am not doing as well . . .

If you have any suggestions as to what we should ask the oncologist, please share them!
thank you everyone . . .
jep

There is every reason to have hope for a positive outcome for your husband. Surgery still may be an option and if not, then systemic treatments may be very effective. There are several examples on this board of people with lymph node mets that have been going strong for many years and tolerating treatment well.

As for questions for the Onc....I would ask about complete genetic testing (if that hasn't been done). The more you know the better.

Hope that helps
AT

Thank you AT . . . for both the optimism and the advice.

oral chemo+supplemental chemistry asap, + 2nd surgery + later adding celecoxib (from ADAPT) is what we did.

I do suggest noting CEA, CA199, LDH as minimal markers for this approach if they are even "average" - e.g. CA199 over 12 or 22 and LDH over 170. We do something more like CBC and extended panels for chemistry e.g. you might ask for a CBC+Chem 25 or 26 and see what they offer. We just order them ourselves.

Slightly improved lab work can steer you better with ADAPT and other nicer chemistry.

Jep, I am so sorry. But, as AT mentioned please have hope as there are a good number of us here with positive distant lymph nodes that are doing ok and have been for several years.
You will see from my signature - I've tried a lot. Surgery - chemo - radiation - more chemo. You will have more information after the PET and that will help direct which way you can go. The problem with surgery - and believe me, I have wanted surgery every scan, and still do - but I know that surgery will get whatever we see on the scan - but it can't get those microscopic cells that aren't on the scan. So, that's where chemo comes in. I have heard from several experts, that the bigger concern in distant lymph node mets is not the actual lymph nodes we see, but rather those cells floating around that could spread to a vital organ. So, if it is a solitary node - and resectable - that is wonderful. But it will be ok if it's not because chemo is a good option. Folfiri + Avastin worked well for me for several years. I am not Folfiri + Vectibix. Has your husband had mutational testing? Is he KRAS wild? If so, I would ask about an EGFR inhibitor such as Vectibix or Erbitux. I am just starting that now, but I know they are using it in the first line setting as well for KRAS wild, especially left sided cancers. I would also ask for CA19-9 in additiona to CEA as there is some evidence that can be useful in lymph node mets. My CEA is not an indicator (always been below 2.5 after initial colon resection) but CA19-9 has been elevated.
Sending lots of hope you to you and yours!!!

Thanks clj! So much useful info in your post and it made me feel better....pet scan was this morning and we should know more in the next day or so...will keep you posted as we learn more...
Jep

Jep
Please do keep me posted and if there is any more advice or questions I can answer I would love to help!
CLJ

Thank you so much!! We are still waiting to hear back regarding Wednesday's PET scan....I thought we would have heard by now....

Well today is Monday, so fingers crossed the PET is read and you will be given some options to think over. It must have been a long weekend for you.

Yes, we finally got the results of the PET scan this afternoon . . . my husband has 3 affected lymph nodes . . . 2 in the abdominal area and 1 in his arm pit . . . I haven't been able to talk with the doctors yet, but I will definitely be there to speak with his oncologist. Apparently this means chemo (which we figured), but we were kind of hoping it would only be 1 (or maybe 2) that could be surgically removed. After my husband's surgery (May 2017), we met with a doc at MSK. She told us to do chemo locally because the protocol was the same, but to definitely contact her if we hit a crossroad . . . well here we are. I'm having my husband's records forwarded to MSK and we're going to make an appointment to see what the doc there recommends . . . any advice/insight is greatly appreciated . . .
Thanks for being there for us for the past year and a half . . .
jep

Was his 1st scan really just this past week?

I am on a 3 month schedule of PET scans.

But ok. What to do next? Yes, make the plan. I got 2nd opinions at Mass Genersl and then had chemo on Cape Cod since it was the same formula. The surgery for my lung was done at Mass General.

3 nodes might respond very well to chemo. And then be insistent about follow up CT or PET scan. Now you have the results you can move foreard.

Hi Appletree...no, this was not his first scan....he had a PET scan after surgery (June 2017) which was clear...he also had a CT scan January 2018 (also clear)....all is his bloodwork had been excellent and his oncologist didn't think he needed this most recent scan, but I pushed for it...yes, we're hoping that these nodes will respond well to the chemo, but we're also pursuing other opinions...we haven't even met with his oncologist yet, so I'll be very interested to hear what he has to say...

I'm sorry it wasn't better news and hope his chemo goes well!*hugs*

So my husband's oncologist called him tonight and gave him his suggestions for the next chemo regiment: 5fu + Avastin + leucovorin (12 rounds). Apparently the 1 node that was biopsied is the larger one (in his abdominal area) . . . the other 2 (including the armpit node) are very small . . . his doc suggested completing the chemo regiment and then possibly pursuing radiation to blast the nodes (?) . . . I've read some troubling stories about the effects of radiation on other organs (possibly) . . . can anyone advise on any of this? Still planning on a second opinion, but it feel a little bit better to have 1 possible plan in place . . . you guys are amazing . . . thanks for listening . . . I can't really talk too much about this at home because we don't want to upset the kids . . . and work is kind of the same . . .
thank you!
jep