TAMIS - anyone else?

Hi suzygand a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi suzyg If you type Tamis in the search box at the top of the screen then it will bring up previous posts - I think Robbo85 is the most recent one? 

I know it feels like a long wait but they are monitoring your tumour closely and will be aware of any changes or growth. It’s impossible to predict the future but bowel cancer is slow growing and very treatable and you will be monitored closely for any recurrence.

Hope it all goes well

Karen x

Hi. Firstly sorry to hear of your diagnosis. It's a scary time. 

September isn't too long to wait and your team will be basing the date on your available data and MDT review, so try not to worry too much about this. This does tend to progress slowly.

I'm just a few months ahead of you on the tamis plus surveillance path. 

When you have the tamis procedure you'll then wait for the pathology, as it can be bothered curative treatment and also diagnostic 

You didn't say exactly what was found but in my case it was a polyp

In my case I had confirmation that a polyp was cancerous in January after it had been removed during a colonoscopy 

The next few weeks were scary. I had CT and MRI same as you, and they were fine

I was given the choice of major surgery or TAMIS and based on my odds chose TAMIS, accepting that risk that it's possible lymph node spread may have already occured and is too small to see on scans (which given your 5 year timeframe also I suspect you also have some risk of that since TAMIS can't see lymph nodes) 

I had the TAMIS procedure mid March. After another painful wait - told it was all normal, no leftover tissue. One night in hospital, a few days a bit uncomfortable but back to fully normal within 2 weeks or so. 

I had my first round of surveillance scans last month. MRI was ok. CT is still pending (painfully slow, lack of staff!) and had my flexible sigmoidoscopy this week which they said looked ok but took some samples.. so more waiting, but to be honest I'm not feeling stressed about it. Yes something may be there but odds are there's not. 

For reference my pathology:

T1 SM2 rectal adenocarcinoma 
Well to moderately differentiated
Budding bd1 low
No confirmed LVI
After tamis, confirmed R0 resection (clear.margin)

I saw two specialists. One gave 85% chance I'm fully cured already. The other gave 90%

Of course that's population statistics. I may be unfortunate and in the 10% but that's why the 5 year intensive program exists

I wish you all the best on this unwelcome journey.  Happy to answer any questions you have

Oh and to your point about possible stoma. 

It depends - the 5 year program is both to check for local recurrence and distant (liver etc)

I'm unsure if a small local recurrence would still be eligible for another TAMIS. But the odds of local recurrence (the actual same tumor regrowing, not lymph nodes I mean) are actually pretty low. They told me 4-6% chance. 

The higher % chance was for systemic/regional

The thing I quickly learned about cancer..every case is different. Similar but different!

It does sometimes feel like there's a surgeon sharpening his scalpel though, it does play on my mind. But it's better than the alternative.

(Sorry couldn't edit,)