Chemo decision week. Thoughts appreciated.

[Fred.R]

Hey guys.

So, the Oncotype number came in. Basically, it was explained to me like this.

My score was 24, and my chances of seeing Colon Cancer again in three years - according to this test - is 14% (Stage 2, T3). Because of other factors - low risk group - that skews down to 12%. With Chemo - with Xeloda - that lowers that chance down from 12% to 9.6%.

The tumor did not break through the lining of my colon, and all signs point to it being localized: Nothing on the margains, etc, etc. Which makes them think there are no free floating cancer whatevers in my system. The surgery "got it" as much as they can tell. So my ONC is recommending no Chemo. This is OBVIOUSLY the answer I was hoping for but truthfully, I was ready for Chemo because if it's going to help, it's going to help.

The other stat is that in a Type 2 colon cancer, only 3% of people who go through Chemo are helped by it. So... I have to decide:

* Go for Chemo on the odds of me being the 3%, knowing that it's only dropping my chances by 2.4% according to everything they know... and knowing that some people face risks from the Chemo.

* Don't go for Chemo and start an aggressive observational period over the next two years that include quarterly CEA's, a scan at 6 mos and a colonoscopy in a year. Repeat observation again one year later. Other benefit - ileostomy reversal could happen this month. Try to make up those percentages with lifestyle changes: Exercise four to five times per week, take the baby asperin, avoid red meat. Take a massive genetic test that covers ALL forms of cancer and get those results back in 3 months.

I'm leaning toward no Chemo. Smarter minds than mine are directing me so. But as a stage 2, it's not so cut and dried is it? It's a path I have to choose, not a path that's predetermined.

Your thoughts would be appreciated... Final consultation and decision on this happens Friday.

Tentatively,

Fred.

[NWgirl]

I may be the exception here, but based on what you've said, if it were me, I would not do chemo.

[chp]

Tough decision. I am sorry you're having to deal with this. I was also stage 2a. I opted to go for the xeloda. However, I have signet ring cell cc so chemo was pretty much a given for me. I now have a single nodule on each lung -- possibly nothing, but now I have huge regrets that I did not push for the full folfox -- which by the way was not even suggested to me by my onc at the time - I feel like I should have been given the option-- I guess either decision you make you just have to make up your mind to go with it and not look back. Praying for you!
Cathy

[BrownBagger]

This disease forces you to make some tough decisions. So I sympathize with your dilemma.

I was originally staged as 2A and I was given the chemo option and I took it. Based on how well I tolerated it, I'd recommend it, just for the added insurance. However, not everyone has such an easy time on it, and if I had a bad experience, I'd probably vote the other way.

Sorry I can't be more help.

[skypup]

I for sure would not do oxaliplatin (if that is on the table).

[Dobe Man]

I'm leaning toward no Chemo. Smarter minds than mine are directing me so. But as a stage 2, it's not so cut and dried is it? It's a path I have to choose, not a path that's predetermined.

Your thoughts would be appreciated... Final consultation and decision on this happens Friday.

Fred, although I did not have an ileostomy, the rest of my diagnosis/sigmoid colectomy, lab results and oncologist recommendations were similar. I also have a family history of early onset alzheimer's which cemented my decision to pass on chemo, my oncologist said if it were him he would not undergo chemo due to the uncertainty and very small possible upside. I go to the oncologist every 90-days, had CT and other followup ultrasounds, etc done in April, 2013, followup colonoscopy May, 2013 and all has been clear, my oncologist calls me the Beast. I am a flatlander and went and summited Mount St Helens a few weeks ago which was very physically demanding over 9-hours on what is basically a direct ascent through long boulder fields and ash, and overall feel very healthy. I do cardio 3x a week and lift 2x a week and keep trying to improve physically within reason. All of us who have been diagnosed with cancer are at much higher recurrence risks than someone in the general populace being diagnosed with CRC. I just accept it for what it is and try to get on with life. The first 6 months of diagnosis and post-surgery were mentally and emotionally challenging going from a place of believing one is in good health to the unknown and questioning if the correct or best decisions were made, but as things progress and tests/scans come back positive one just compartmentalizes the "what ifs" and keeps moving forward. Best of luck with your decision and future health and sorry that colon cancer found you.

[justin case]

OK Fred,
Ask your Oncologist why the chance for a recurance, is greater in a stage 2 person, than a stage 3.
Regards, Michael

[chemo sabe]

I think you have received great news!! If I were you, I would go with doctor recommendations. Yes, the thought of a cancer death scares the heck out of me and I am sure you feel the same way. But the Oncs are trained to recommend a reasonable path forward. No matter what you (or any of us) do, there will always have a chance of recurrence - it will never drop to zero even after 3 years,

[weisssoccermom]

Just an FYI - the chances of a recurrence in the stage IIA patient are not greater than the stage III patient. The statistic you are referring to take into account the stage IIA & B patient AND takes into consideration that many stage II patients (including those high risk patients) might not do chemo versus the stage III patient which almost always does. There are too many factors that may/may not be included to make that general of a statement. In this particular case, the patient knows he is a stage IIA and has low risk factors.

Why not just do Xeloda and like Skypup said, skip the oxi? Chemo doesn't have to be an all or nothing proposal. Whatever option you decide has to be YOUR decision. Good luck with whatever option you choose.
Jaynee

[Lisahopes]

Fred, my mom had your diagnosis and FIVE years later was then diagnosed with spots on lung and liver. Aggressive and regular check ups didn't not help because when it came back, it was already stage IV and too much to operate on. So in my view, two years of strict controls is not the solution. She regretted not having done chemo but it also wasn't suggested by the onc. I would definately take the chemo.

[katsheba]

That's a tough decision, and I feel for you. It's so hard because the statics are helpful on one hand but deceiving on the other. After all, they are just reflective of a group of people and you have no way to know where you personally fall in that group. Anecdotal information is problematic as well. What happened with one person is in no way predictive of what will happen to you. Here are some thoughts, just a little brainstorm, you have probably already have done and/or thought of some of these, but thought I would share. But again, not advice, just thoughts.

1. Seek a second or even third opinion
2. Do the 5FU or Xeloda and skip the Oxali
3. Only do three months of chemo (there are trials right now running to see if three months is just as effective as 6 months)
4. Do the chemo but stop if you are having a terrible time of it. People definitely have very diverse experiences.
4. If your docs are not recommending it, don't do it. Unless you are on chemo for life, we all come to that place in our treatment where the doc says, "Time to stop." Then we have to face the great unknown, the waiting. In other words, even if you do chemo, you will still not have a guarantee.
5. Gather all the info you can and if you find nothing that tips the scales one way or the other, do what feels right to you.

Best of luck to you as you take on this decision!

[Kathryn in MN]

There is no guarantee with or without chemo that it will never come back. Doing chemo gives you a very marginal edge. The odds are already in your favor that you will stay clear. Chemo helps that only a tiny bit. Chemo is poison - make no mistake about it. Some of us have no real choice, so we continue on it.

Only you can make the final decision, but I can say if it were me, I'd skip chemo. Or I would only do a short course of Xeloda.

[elise]

I was in your shoes (except my surgeon suggested chemo and my onc left it to me knowing I'd have long term effects). I pictured the 2 people standing in a room saying "I'm alive because I chose chemo" and so I chose chemo.

Do what your heart says.

Elise

[disco nap]

I would absolutely not do chemo based on the information you have told us.

Keep up a good monitoring schedule, and move on with life.