Post Chemo Surveillance

[Hey Daddy]

My son had his 12th and final FOLFOX treatment today. His onc told him that he should have a colonoscopy in 2 or 3 weeks and a CT scan in 4 weeks. After that there would be blood work every 3 months and CT scans every 6 months for the first 2 years reducing to yearly if all was well at that point. I asked about PET scans and was told that they do not recommend them for the earlier stages (he was CC 2B, T4N0M0) as they result in too many false positives. Have any of you with similar dx had a significantly different surveillance plan or one that includes PET scans?

Thanks,
Joe

[TXLiz]

Hey Daddy, wishing good things for your Son's post chemo life. It would be awful to watch one of my children struggle through chemo, but CONGRATS on him completing 12 rounds. ( I have another month and its roughy mcroughface.)

I cannot answer your question and am a stage beyond your son, but I noticed you Son has peri/lymphovascular invasion. Those 2 things seem to be rare, from my limited knowledge. Has your onc addressed that in any way?

I asked my onc about it and he just confirmed that I had it and said I was doing all I could do. He said to not fixate on things I can't change.

I do know that he said follow up was standard for each stage, and he would give me the protocol at my next appt. But, I am sure the folks here will have great advice.

Good luck and I hope all will be well for your Son and Family.

[ANDRETEXAS]

You can see my plan below......have my next CT scan tomorow.....however, I am IIIb.

[PainInTheAss]

My Onc suggested a similar plan, but I was not comfortable with yearly scans being a IIIc. He said that more scans increase your risk of cancer later in life. I told him that it is a joke among cancer patients that we want to live long enough to get cancer from our scans. What if there is the perfect storm of a recurrence that is not affecting CEA (a 20% chance) and a growth is left unchecked for a year? Traveler001's Onc had him do no scans and only blood tests, and he did not find his recurrence until the tumor was so large that he was coughing 5years post surgery. If he had been scanned, maybe this would have just been a spot found much earlier. It did not affect his blood tests.

As for PETs, I have been told they are very hard to get now. You can only get one if a CT has an abnormality. I had a lymph node near my spine light up at my first PET scan that was not removed during surgery, and we could not get insurance to approve a follow up PET after treatment was complete even with my Onc doing an appeal. I was told that a CT would still be sensitive enough for the chest, but it is not very sensitive for the abdominal area. We are also concerned about the risk of peritoneal spread because of that lymph node. I asked about an MRI after reading about some on here doing that and my Onc said it was as sensitive as a PET. So, we do a CT of chest and MRI of pelvis and abdomen every year and just CT at six month intervals in between. I was very releaved when my 2 year MRI showed no cancer in the pelvis and abdomen.

Personally, I think the increased risk of more frequent monitoring is worth being able to find something early. I had to insist on it, but he was pretty cool about it and didn't try to talk me out of it. Your son is very young, but who knows what kind of cancer treatment there will be 30 years from now if increased scans do affect his risk of getting another kind of cancer. But his chances of getting this kind are much higher right now. We don't have a crystal ball. Just our gut, so I suggest you get a second or third opinion and then go with your gut.

[Deb m]

My husband was also a stage IIbT4a. He had a scope one month after finishing chemo followed by a ct scan and blood work. After that, for the first year he had a ct scan and blood work every three months. Year two and three he had blood work and ct scan every 6 months and on year four and five post chemo he had blood work every six months but the scans were reduced to once a year. After his five year check, his oncologist cut him loose. Had he not been a T4, he would of had blood work and ct scan every 6 month for the first year instead of every three. He was told to continue with scopes every three years. All his follow ups were done at MDA cancer center in Houston TX.

Hope that helps and wishing you a forever NED.

Deb m

[rp1954]

There are several things that you can do if you are willing and able to do extra. These steps aim prevent (reduce the odds of) recurrence and to improve early detection and response. Two downsides are some extra costs and potential stress in the first year, but I have seen less thoroughness clobber a lot of stage 2,3 and 4 patients on recurs.

1. Extra blood monitoring. Even NCCN guidelines suggest that 2 month intervals for blood panels may have value to extend life despite less targeted treatment efforts. My studied view is that more frequent intervals, better marker coverage, and targeted treatment efforts can (sometimes dramatically) improve early detection and response. However, heavy chemo like Folfox does distort various blood panels for 3-12 months, where individual panels become increasingly analyzable at different times. Although start up can be nerve wracking (trying to interpret data too soon) and many are intimidated, the mechanics are actually simpler than most suppose, and one can get outside help.

2. Immune building and inflammation control steps. Several different groups suggest possible drugs (e.g. aspirin, cimetidine, celibrex, metformin), supplements, diet and exercise to improve patients' odds, longevity and quality of life. Even dealing with refractory metastatic cancer, we have found many of these items useful to help maintain unread mets in visual remission. After a while, once you get familiar with the ropes, some confidence can be stress reducing even with live mets.

We actually saved scads of out of pocket money elaborating steps 1 and 2 - recurs, late detection and many treatments are typically much more expensive, as well as less successful.

There are a lot of action opportunities, with sites like Life Extension Foundation , consultants like LEF, Riordan Clinic, Belanger and Block, and books listed in the archives.

[Hey Daddy]

" I noticed you Son has peri/lymphovascular invasion. Those 2 things seem to be rare, from my limited knowledge. Has your onc addressed that in any way?"

TXLiz, thanks for the reply. My son's onc only addressed the peri/lymphovascular invasion as additional reasons to do chemo. I've done some googling on various studies but it only makes me scared and as you mentioned we have been concentrating mainly on making sure we are doing the best things possible that we can control. For what it's worth, after getting rougher in the 4th and 5th months, my son's last couple of FOLFOX treatments were two of the smoothest. I hope the same for you.

[Hey Daddy]

Thank you all for the info and suggestions. They give me a lot to consider and discuss with my son and his onc. I am very grateful for the valuable resource that this board is and wish you and your loved ones all the best.

Hey Daddy