The Colon Club

Oh geez, your experience sounds a lot like my husband's: In the ER for dehydration and severe constipation, baffled the doctors so they sent in a GI specialist who ordered a colonoscopy who then found the tumor blocking his intestines. He will hopefully have his stoma reversed next week, so you're starting the journey we're at the tail end of!

One of the first things I did after he was diagnosed was look up colon cancer and it's survival rates and you're honestly braver than I; when the number popped up I slammed my iPad cover shut and couldn't bring myself to read it again. That's not something we discussed with our Oncologist either, she told us he was young and with treatment she thought he could be cured. We're not out of the woods yet, some of his numbers are still higher than she would like and it's a long slog to the 5-year mark, but we keep marching forward. I still have moments where my chest clenches and I wonder if something microscopic is brewing and if we'll be back on that roller coaster of meds, appointments, and treatments. But I keep telling myself we'll deal with it if it becomes an issue and to try not to worry unless it does happen. Easier said than done though.

As the others said if you aren't comfortable with your Oncologist then SWITCH! You're still early into your treatment where switching won't be a horrible pain in the rear. This doctor is going to be the person you need to rely on for answering your questions and keeping on top of your treatment. If your current one doesn't make you feel comfortable then I would find another, you need a good partner to show you the way forward.

I tried to respond to this yesterday, but it didn't go through. I appreciate everyone's responses, especially from those of you who are still going without a recurrence. I just got back from my PET and was told that we usually hear results the next day, but that for me it would be Monday since I was scanned on Friday.

Second opinion? Yes, you've convinced me. I need to get one. But I feel like I also need to get started on treatment and don't want to delay by trying to get a referral up to Columbus, meeting with them, and then possibly having to do another PET (I am told they usually want to do their own) delaying what could possibly be the same course of treatment anyway.

How badly does it jam things up if I go up for the second opinion after I start treatment?

I tried to get a second opinion at MSK after I had started treatment and they have a policy of not offering a second opinion until your current course of treatment is done. Not sure if that’s true at other places.

I tried to get a second opinion at MSK after I had started treatment and they have a policy of not offering a second opinion until your current course of treatment is done. Not sure if that’s true at other places.

Wow. I sure hope not.

Spazzyjanet wrote:Second opinion? Yes, you've convinced me. I need to get one. But I feel like I also need to get started on treatment and don't want to delay by trying to get a referral up to Columbus, meeting with them, and then possibly having to do another PET (I am told they usually want to do their own) delaying what could possibly be the same course of treatment anyway.

My opinion for what it's worth - If you're stage 3, the treatment may in fact be the same. If you end up being stage 4, you need to get to a major cancer center with tons of experience dealing with this stuff. Not a local place, not even a regional place. A top national cancer center.

hiker

Thanks hiker. I looked online and the one in Columbus is ranked #20 nationally. Does that qualify as "top?". The Cleveland Clinic, ranked #5 would be next closest at #5.

I honestly don't know anything about either of those, sorry. I believe I have heard other people on this forum who spoke highly of Cleveland Clinic. Hopefully some will comment. As you know, I went with MSK in NYC - people from all over the world go there for treatment (just step into the 5th floor waiting area and you'll think you're at a UN meeting). I wanted the most aggressive treatment possible and to limit my chance of recurrence.

No matter where you go, if they are not doing everything they can to get you to NED get another opinion.

hiker

I got the PET scans back and my fears have been realized. There is "activity" in my liver where the hemangioma and in spots nearby. They would need to do a biopsy to confirm cancer.

I'm trying not to be angry that the surgeon who had me open and looked at it last month didn't think to do a biopsy then.

I have to ask. Would a hemangioma or non-cancerous mass light up the same as Cancer would? I am assuming not, but need to ask anyway.

As soon as we left the room, I called up to the James and asked for an appointment, and then got with the front desk with their fax number to ask them to fax all medical records (The James said they would call me to set up an appointment once they were received). So I guess that I will go meet with them, and most likely end up doing another PET. Hopefully these guys will have a better way of confirming or ruling out for sure.

I am numb right now. I am keeping myself busy by writing this, but honestly- how on earth do I process that I am probably going to have to say goodbye to my kids?

If it has just spread to the liver, is cure still on the table?

Stage IV is not an automatic death sentence. If these are in fact liver mets, I urge you to find a place that uses the HAI pump - I go to MSK in NYC which has used them longer than any other facility and are considered by many to be the best. There are plenty of people treated there that are still upright 10+ years out from diagnosis.

My oncologist doesn't need biopsies to determine if something is a colon cancer met - she can tell by looking at the scan. In two instances where the radiologist mentioned possible met in my lung and brain noted on the CT and MRI, my oncologist said there was absolutely no way they were colon cancer mets, called the radiologist and gave him an earfull for putting that on the report without consulting her. She did need me to do a biopsy of the lung thing because although she was 100% positive it wasn't a met, it was an infection and she needed to find out what kind since it wasn't responding to antibiotics. And once again she saved my life. I'm hoping you get someone that good.

hiker

I am all new to this as well with my mom but I just want to send prayers your way—I totally understand your feeling of being numb. I just read some article last night “The Median is Not the Message” by Gould that gave me hope about scary statistics.

I second what hiker said. My liver spot lit up on the PET, and they were able to determine from looking at both the CT and MRI that it was a met. They didn’t need to do a biopsy. It was something about the glow around the spot that differentiated it from a benign spot. But in any case, the biopsy will confirm. I got myself to MSK, had the met removed, and am getting ready for HAI pump treatment as mop-up chemo. Hopefully the James will get a plan in place for you that will get you to NED.

I hope so too guys. Feeling pretty scared tonight.

Yesterday I met with my Oncologist, and then a Surgical Oncologist to discuss my PET results.

Both are pretty certain that the liver spots are metastasis. 6 total, 1 is 2 cm, and the rest were smaller. 3 are on the right lobe and 3 on the left.

Plan is 3 months FOLFOX, with the addition of 2 other agents geared toward targeting. The surgical Oncologist wants an MRI of the liver to better decide how to tackle it.

After 3 months on chemo he then wants a CT focused just on the liver. Depending on the circumstances, we will either proceed immediately with 3 more months of chemo or he will go in to do either a liver resection, an ablation or both-- he might possibly at that time also re-section my colon and take a look around my peritoneum to see if anything there needs additional treatment. Because surprise!- my biopsy noted that a single carcinogenic node had been found there and removed.

The James hasn't called me yet to schedule since receiving my charts, but it appears that at least for now we have a plan locally.

Hi spazzy,I'm sorry about your stage 4 diag,but as you can see from this forum, there are many such people that are living long, healthy lives. I certainly hope this is the same for you. I just wanted to throw in my 2 cents. I live about midway between the James and Cleveland clinic and I chose to go with the clinic and have been absolutely 110% satisfied with their service. Love Dr. Kalady, complete trust in his abilities. Make no mistake,I've heard good things about the James, but when my life is on the line and I've got a choice between#20 and #5, I'm taking #5 every time. I just wanted to throw that out and wish you the best!

Casper, thank you for that insight. For me, it's a difference between an 1:15 each way to the James and 3:30 eavh way to Cleveland. What if the treatment ends up being the same or similiar?