The Colon Club

Congrats Jay, I am right there with you 3 years six months.

Like you we here in Canada have all our health care paid for butt we have further/longer follow up treatments. I get a yearly scan for five years and blood work every six months so I have two more scans to go. There has never even been a hint of reducing treatments after my complete response. I kinda like it that way.

That is fantastic news
I find myself lurking & posts like this are truely uplifting. I'm sure deep down the fear will never completely go, but for now I think you will be able to find peace with the continued NED result. Good stuff!
Shona x

Congrats!!! Time to celebrate!

Congratulations Jay. You've gotten some good tools here for your belt. Now all you have to do is be a nuisance (persistent) & hopefully that will get you somewhere

Best Wishes
BS

NZJay wrote:= 3 years and 6 months NED today.

I shall now partake in some gin.

Yes, partake away!

I am a Stage IVb so I understand your concerns. It would be good if you could get the 4 and 5 year scans. That said, you are definitely in "diminishing chances of recurrence" territory now! Congratulations!

My Onc recommended annual scanning because of my age, but I pushed for twice a year. When I couldn't get a PET approved to check on a node that wasn't removed during surgery, I discovered that an MRI is just as sensitive as a PET and better for the pelvis area than a CT. Now I do MRI for pelvis and abdomen and only chest CT every six months. Its a nice compromise between peace of mind and radiation exposure. That's something you could look into if you can't get follow up approved.

The stats I remember is that around 10% of recurrences are found after 3 years, 5% after 4 years and around 2% after 5 years. How do they find them if monitoring stops? I did not want to be one of those unlucky ones. I already won the colorectal lottery just getting it in the first place.

Congrats on the wonderful news. I've followed your story since I joined Colon Talk. You were a bit more active online then, but I guess I was too. I hope you stick around to keep us updated on your continued NED status!

This is great news. I've been following your journey since I was diagnosed in August, 2014 and I hope to follow in your footsteps.

At my last visit to Oncologist, who insisted in the past that CT scans did not increase long term survival rates, he admitted that he learned that there is benefit to scanning stage 3 for 5 years. I didn't have to argue with him this time, and like you, I'm still unconvinced that I'm NED, since I have some lung nodes.

Jay,

Congratulations, that is a major milestone. May you always reside in NEDville,

Lee

Congratulations Jay. 3.5 years is a big deal. Stay NED, and I really hope you would be allowed to get a few more scans, it's worth the peace of mind.

Congratulations! That is great news, glad to hear it. 3.5 years is a real milestone, well done.

It can be tricky getting the DHB to pay for a CT I have had to pay for my own on occasion. My recurrence was only found when I insisted on a scan and I had to have it done privately.

Prices are high but not $2,000 - for a CT at Pacific Radiology in the Hutt, chest, abdo pelvis is about $1,200. Interestingly the cost at Pacific Radiology in Christchurch is about 1/3 lower (they have prices on their website). I haven't tried it yet but am tempted to spend a few dollars on a Jetstar flight to Christchurch to save hundreds if I need to. Another economy I tried was to have a CT chest and an ultrasound abdomen pelvis which cost a lot less but not as accurate.

Anyway, that's something to think about in the future - in the meantime enjoy this freezing weekend and we might get some real snow to cool down your gin.

I'm raising a glass of cab to you! Heart felt congratulations! I'm right behind you! (2 years for me after my good scan this month)

I'm so jealous Jay, congratulations! Party party!

Congratulations NZJay, wonderful news!!