Floating abdominal nodule?

Thank you Carla ( and all others for well wishes).

Molly- I totally agree with you on the PET- I should have pushed for this 6 months ago. Dr M said that in defense of the ONC, there are guidelines that say each patient should be limited to 3 PETS in a lifetime for a disease unless the doctor resets the clock. The ONC made me feel better by saying that if it recurred, we would see it near the bile duct and then could check the rest of body with PET. However, we found this logic did not work. Also, helpful info here reported ( I think from Mary) that after 2 years, recurrence is more likely to manifest itself not in the original location.

Guess I forgot to update that when we finally got the PET, it showed the cancer was also back close to original location too- not just the abdominal nodule It didn’t give us a warm fuzzy that CT did not show recurrence near liver. So, consult with surgeon was a waste of day- he would give no treatment plan until her case was presented to tumor board since he saw the liver/bile duct issue. We waited 2 weeks for tumor board, and then they said they wanted an MRI of the liver . I am not sure why when the surgeon pulled up the PET with us in the office with him, why did he not then say he needed to MRI to show more detail in the liver area. After the tumor board, we said if all agree chemo first, let’s start it. We know that at least the abdominal met was there since Jan, and we want to move forward. We did not want to wait for MRI and another board meeting.

Mom had first chemo on Monday and I think we are looking at 3 cycles ( 9 weeks total) and then scan before abdominal surgery ( and then local treatment on the liver). Our new ONC closer to home ( just for chemo administration) was “warned” about me, but was very supportive. At first she said 4 cycles, but finally she asked what treatment plan I wanted to see- I think 4 cycles would be very hard on Mom so I said 2-3 , And, we are planning her treatments so that she will be going to IN to see my daughter get her PhD on Dec 16. After surviving 4 years to be there, she does not plan on missing it.

Unfortunately, all agree that there is no easy by the book treatment plan. I worry that I should have pushed for biopsy before chemo (needle one was unsuccessful) so we could get Foundation One typing sooner. However, we had a few docs say they thought chemo first would be beneficial, so we are going with it.

So… after 2 or 3 cycles we will have a scan. However, since CT didn’t show the recurrence, guess we will have to ask what type of scan.

However, the good news is that 4 years ago when Mom’s cancer was limited to the bile duct, they told us 12 months. Now, even with the recurrence there and the abdominal met, they are willing to treat and surgeon said his goal is for another 4 years. Treatment options have gotten better and I hope they continue to do so. ( i think I did write these thoughts in another thread- but willing to say multiple times)

Best wishes to all – and thank you,
love and hugs,
Catherine

Gavin- Hugs right back at you!!!

I spent day on train back and forth to DC for a 2-hour meeting. However, we are finally moving forward for Mom. Meeting with surgeon on Friday to see about taking it out and then a PET scheduled for next Tuesday.

Again, Dr Moeslein came through for us and read her scans. Although his impression is that it is a recurrence ( I was hoping he’d say scar tissue) , his read and recommendations give us a path to move forward. He mentioned that he gave a consult from a board member from Gaithersburg too.

He really is amazing- he mentioned the wish that patient would get to him for treatment sooner. We were very fortunate that although Mom was still having positive response to chemo, that we moved forward with the Y-90. He said that often patients are worn out by the time they get to him . I said it would be great if he could go to SLC next Feb to present.

hugs to all,
catherine