Confused doctors

Tueffel

So last week we got another bad information. The oncologist said that he does not feel confident in TACE alone and that he doesnt know what kind of tumor Papa actually has. There are just some irregularities in Papas history that confuse him. I will mention them now:

• 2-3years before the diagnosis Papa had a colonoscopy, nothing was there. They found a normal healthy colon wall.
• During surgeries last year, Papa had no chemo for 3 1/2 months. Nothing happened
• April 2021: Between 2 CTs 2 weeks apart new lesions appeared and the tumors nearly a millimeter a day. 
• Papa did the best treatment they have and when Papa would be the rule and not the exception there would be nothing.
• There are several tumors in the liver, nowhere else. Also when they did surgery only one lymph node was involved. 

In general the tumor is too fast for colon cancer. They are in contact with other cancer centers and the doctors are confused as well. I told my professor about that. He also says that it is confusing, evrn though tumors can accelerate their growth.

The doctors are now rechecking everything. They redo all test and will do some more. It is frustrating that even his chemo might not follow the guidelines. But the doctors need to regain control somehow. I am glad that they are now rechecking everything that they check what went/is wrong. They could just follow the guidelines but they are not. It would be nice if Papas cancer would follow the guidelines.

26th May is the next TACE and then chemo. Before is MRI again. The first TACE seemed to elicit a response. The chemo drugs I dont know yet. My hope is that the cancer is highly sensitive to the chemo because it is growing fast and chemo acts during cell division.

Still the situation is mentally challenging. When everything is going fine, you make plans and now you have to wait if the chemo works.

I am worried about my sister. Due to the family history, my sister and I need to have the first colonoscopy at 40. My sister is pushing away the cancer. She diesnt talk about it, basically forgets it. So hopefully she wont avoid the colonoscopy. 

Tueffel

Real Tar Heel

Keep in mind you're asking

Keep in mind you're asking people who are mostly getting treatment in the US, and there are differences in approach. We say "it's growing fast" but is it? My last recurrence occured after two clean scans CT and MRI within a period of about 9 months, but on the second scan I mentioned my CEA number was up from 1.6 to 2.7, while it's in the normal range it is pretty significant. Were they already growing, just not visible at the level a scan would pick up? The surgical onc who did the liver resection thinks it's possible the tumors could have been dormant for as long as the primary cancer was there (went into blood stream, not lymph nodes) and while they are growing faster than they expect they 1) are still localized to liver and 2) analysis says it's mets from the primary.

Maybe there is a threshold for tumor growth when it reaches a certain point the growth occurs exponentially in some cases.

The advances in tech to do research (especially genome) are changing what we know about cancer. Treatment lags behind.

Tueffel

Real Tar Heel said:

Keep in mind you're asking

Keep in mind you're asking people who are mostly getting treatment in the US, and there are differences in approach. We say "it's growing fast" but is it? My last recurrence occured after two clean scans CT and MRI within a period of about 9 months, but on the second scan I mentioned my CEA number was up from 1.6 to 2.7, while it's in the normal range it is pretty significant. Were they already growing, just not visible at the level a scan would pick up? The surgical onc who did the liver resection thinks it's possible the tumors could have been dormant for as long as the primary cancer was there (went into blood stream, not lymph nodes) and while they are growing faster than they expect they 1) are still localized to liver and 2) analysis says it's mets from the primary.

Maybe there is a threshold for tumor growth when it reaches a certain point the growth occurs exponentially in some cases.

The advances in tech to do research (especially genome) are changing what we know about cancer. Treatment lags behind.

I know

I am aware that I am asking people in the US but I wanted to post it due to 3 reasons: first I wanted to give an update on the situation. Second maybe someone read/knew a familiar case that they saw on other colon cancer forums. Third this post stays in the internet. Maybe someday in the future a patient in a similar situation will see this, read further and discuss with the doctor what will happen. 

I am not giving up hope yet.

Tbh I dont really want to google tumor growth. For colon cancer I wont find anything anyway. 

Last year they told us that they are finding genes that increases the risk to develop heart diseases etc. Cancer genomes were only the beginning. The possibility to check the DNA in days gives many possibilities but yeah treatment does lag behind which is the frustrating thing.