Who's on Deck?

Mikenh

darcher said:

  I saw the chemo oncologist

  I saw the chemo oncologist today for the follow up and he had a couple surprises.  One, he doesn't have much faith in lymph node reports when chemo/radiation were done prior to surgery. If anything was there it could have been killed off and there is a possibiliy there would be no sign of it.  Unlike the surgeon who said they were fine he said it doesn't take much to be missed to end up with cancer a few years down the road.  I agree, better safe than sorry.

   With the absense of lymph node involvement mine was downgraded from a stage 3 to 2 on that technicality.  He said he wants to do the full on stage 3 follow up to be sure. They want me to heal a little while longer and then startup in late December.  It's going to be Xeloda again albeit in a stronger dose than what I had prior to surgery and for 7 days a week for 3 weeks with one week off for 4 to 6 months.  It should be tolerable even if it is a little heavier than before since there won't be any radiation with it plus the shock of all this won't be there dragging me down either. At least I won't have any hoses sticking out of me and won't have to go in so often. Just the one time on the week off and that's it.  That's fine by me.   We'll be starting the home stretch in a few weeks. 

Thanks for that report and

Thanks for that report and the comments on lymph nodes. It gives me an idea as to what I may be looking at. I would be happy with that approach as well.

Mikenh

Quoted from another thread (I

Quoted from another thread (I though it would be better to answer here):

I'm now waiting to start the post surgery chemo and ran head on into a disagreement between the surgeon and oncologist.  The surgeon said there was no lymph node involvement and it didn't appear there ever was.  The oncologist said he didn't buy that since the chemo/radiation I had prior to surgery MIGHT have masked it.  He said it was exceedingly rare to have a tumour the size I did and it not be invasive.  He wanted to give me the standard stage 3 follow up.  The purpose of which is to ensure the next PET scan doesn't show it's moved to greener pastures.  I told him I know enough to know I don't know so what ever he suggests I'll go along with. For the next four to six months I'll be a little miserable again but in the long run there won't be any regrets.  My comfort is knowing I've done what I'm supposed to.  

This really sounds like me. The three lymph nodes were suspicious but pathology said that there was no cancer and my tumor was 100+ cubic centimeters, under 10 cubic centimeters after radiation and chemo and under 6 cubic centimeters in pathology. So I will listen to the Oncologist as well and err on the side of caution as you're doing.

airborne72

Mikenh said:

Quoted from another thread (I

Quoted from another thread (I though it would be better to answer here):

I'm now waiting to start the post surgery chemo and ran head on into a disagreement between the surgeon and oncologist.  The surgeon said there was no lymph node involvement and it didn't appear there ever was.  The oncologist said he didn't buy that since the chemo/radiation I had prior to surgery MIGHT have masked it.  He said it was exceedingly rare to have a tumour the size I did and it not be invasive.  He wanted to give me the standard stage 3 follow up.  The purpose of which is to ensure the next PET scan doesn't show it's moved to greener pastures.  I told him I know enough to know I don't know so what ever he suggests I'll go along with. For the next four to six months I'll be a little miserable again but in the long run there won't be any regrets.  My comfort is knowing I've done what I'm supposed to.  

This really sounds like me. The three lymph nodes were suspicious but pathology said that there was no cancer and my tumor was 100+ cubic centimeters, under 10 cubic centimeters after radiation and chemo and under 6 cubic centimeters in pathology. So I will listen to the Oncologist as well and err on the side of caution as you're doing.

Trend?

This is identical to my situation as well.  My oncologist made the same analogy regarding lymph nodes (if they were not biopsied prior to neoadjuvant treatment then you have no way of knowing if they contained any cancerous cells). 

That circumstance, combined with the size of my tumor, caused him to confidently recommended adjuvant therapy, with which I agreed.  The medical and insurance industry both approved the decision so I do not have any latent suspicions.  The difficult part was making the decision myself.   

Perhaps this is a new perspective and is trending across the national medical community?  Corrrect me if I am wrong, but here are three of us from different regions in the country (southwest, south and northeast) and each of us have oncologists who are recommending similar action to similar circumstances.

Jim

 

Mikenh

airborne72 said:

Trend?

This is identical to my situation as well.  My oncologist made the same analogy regarding lymph nodes (if they were not biopsied prior to neoadjuvant treatment then you have no way of knowing if they contained any cancerous cells). 

That circumstance, combined with the size of my tumor, caused him to confidently recommended adjuvant therapy, with which I agreed.  The medical and insurance industry both approved the decision so I do not have any latent suspicions.  The difficult part was making the decision myself.   

Perhaps this is a new perspective and is trending across the national medical community?  Corrrect me if I am wrong, but here are three of us from different regions in the country (southwest, south and northeast) and each of us have oncologists who are recommending similar action to similar circumstances.

Jim

 

Hello Jim,

Hello Jim,

I haven't met with my oncologist yet; only the surgeon. But she expects adjuvant chemo and Xeloda/5FU is the starting point because of the size of the tumor. The question for me is what other drugs the oncologist will recommend, if any.

NHMike

Tunadog

Mikenh said:

Hello Jim,

Hello Jim,

I haven't met with my oncologist yet; only the surgeon. But she expects adjuvant chemo and Xeloda/5FU is the starting point because of the size of the tumor. The question for me is what other drugs the oncologist will recommend, if any.

NHMike

Perhaps Avastin...

I'm on maintenance Chemo and taking Xeloda and Avastin.

I've seen others taking Avastin along with the Xeloda/5FU combo.

Stops the formation of new blood vessels, reducing the growth of tumors.

darcher

Not Genetic, so what caused it?

  That was the big question.  Granted, I never lived the hippie granola lifestyle and at one point I was a good 50lbs overweight for the better part of a decade before I wised up and got my weight back to "normal".  Still,  To have this come up I assumed it was genetic because my dad had it.  Turns out, that's probably not the case. 

  The town we grew up is now an EPA superfund site.  I don't know when it was established but there is a dump that is recognized as one of the worst polluted sites in the country.  That dump was jus a couple miles from where I lived.   Beyond that we had a steel mill that made, among other things, chromium based metals. The cooling water or what ever it was got dumped right into the river from a 4 or 5 foot diameter pipe.  It had a high flow rate when it was going. The color of the water was a bit yellowish which corresponds to having high amounts of chromium 6 in it.  That's now a known carcinogen.  We used to swim in that river.  That was about 35 years ago.  

  I'm inclined to think it was more the chromium 6 exposure than the dump since we came in direct contact with the water and from what I read it can cause GI problems.  Digging into it I discovered the amount of resistence by big chemical companies to even admit that it causes cancer is still waging.  My dad got it at 70 but he didn't move to that town until he was 30 so a good amount of time lapsed.  The steel mill is still there under a different name.  Although this is circumstantial and speculative and would get hotly contested by their lawyer I believe that's the source. 

NewHere

darcher said:

Not Genetic, so what caused it?

  That was the big question.  Granted, I never lived the hippie granola lifestyle and at one point I was a good 50lbs overweight for the better part of a decade before I wised up and got my weight back to "normal".  Still,  To have this come up I assumed it was genetic because my dad had it.  Turns out, that's probably not the case. 

  The town we grew up is now an EPA superfund site.  I don't know when it was established but there is a dump that is recognized as one of the worst polluted sites in the country.  That dump was jus a couple miles from where I lived.   Beyond that we had a steel mill that made, among other things, chromium based metals. The cooling water or what ever it was got dumped right into the river from a 4 or 5 foot diameter pipe.  It had a high flow rate when it was going. The color of the water was a bit yellowish which corresponds to having high amounts of chromium 6 in it.  That's now a known carcinogen.  We used to swim in that river.  That was about 35 years ago.  

  I'm inclined to think it was more the chromium 6 exposure than the dump since we came in direct contact with the water and from what I read it can cause GI problems.  Digging into it I discovered the amount of resistence by big chemical companies to even admit that it causes cancer is still waging.  My dad got it at 70 but he didn't move to that town until he was 30 so a good amount of time lapsed.  The steel mill is still there under a different name.  Although this is circumstantial and speculative and would get hotly contested by their lawyer I believe that's the source. 

I am pretty sure of my cause

http://www.nydailynews.com/new-york/zadroga-act-campaign-target-students-teachers-article-1.3622141

http://coloncancercoalition.org/2016/05/25/increased-risk-for-colon-cancer-found-in-911-survivors-and-first-responders/