An Unexpected Prognosis

History: Feb 28, 2014….Mayo Clinic at Rochester, MN, …. Resection of segments B and C of my left liver lobe for a 5 c.m. Intrahepatic tumor and one 5 mm tumor. Staged at T2B due to the 2nd smaller tumor found during surgery. Followed that with 6 rounds of Gem/Cis…last round was with less concentration due to severe side effects of chemo causing hemoglobin of 7.0 and neuropathy in feet.

Followup: CT scans with contrast every three months at Mayo Clinic until 2015 when we switched to Ct scan without contrast for my lungs and an MRI with contrast of my abdomen and pelvis. This was done because of potential problems of allergic reactions to the specific CT contrast.

Nov 2015 (20 months from initial resection) the MRI showed a 1.5 cm new tumor had developed in the very outer most corner of section 4a of the left lobe, adjacent to the resection line. My oncologist had a surgical consult set up for me before I ever entered the exam room.

Dec 7th, 2015: Wedge Resection of new tumor. Intra-abdominal ultrasound did not reveal any further tumors. (Note that 5 mm is about as small as can be seen with any certainty).

Jan 7th, 2015: Post op check up with the surgeon and new oncologist (previous oncologist has left to go into private practice in Minnesapolis).
The unexpected part of both my meeting with the surgeon and my oncologist, is that both of them, independently, indicated that they did not expect my cancer to return. The surgeon even said something to the effect, “Don’t take this the wrong way, but I don’t expect to see you again.”

Now WHY after I had one recurrence did they both say this? Actually, my previous oncologist who found this recurrence also indicated something similar.

Here is the explanation, as best as I can take what they told me and tell it to you.
1. It had been 20 months since my first resection before recurrence, which is a long time for this cancer, which indicates a cancer of this type that isn’t very aggressive in growth rate.
2. The tumor probably grew from a small cell that escaped during the first resection, (I surmise this is because it was so close to the resection line…literally hugging it)
3. It isn’t all that uncommon to find a single stray cell escape during surgery….and no others (answer to my question when I asked why they didn’t expect to see others pop up….what were the chances there was just “one” stray cell). The onc said it happens quite frequently.
4. When I was told that this cancer doesn’t just sit there for years and then suddenly reappear, I asked then what about people I knew who had it return at year 3, 4. Or 5 after resection. The answer was that they probably had an underlying risk factor that caused a new tumor/cancer to form. In my case, they believe due to where it was located at the very least, it was a stray cell….and, I don’t have any of the known , definitive risk factors to grow a new tumor.
5. IF there were more cells, they said that they would have expected to see them before this, or at least at the same time as this last tumor, but as of the ultrasound done laproscopically during my last surgery, there were none visible. (5 mm or larger)

In a nutshell, at the very least, they feel that it is unlikely that I will have another recurrence, but if I do and it is one tumor again, they will deal with it in the best possible way, including another resection being on the table. If more than one tumor pops up at the same time again in the liver, they will again address it and at that time, send tissue to Foundation ONe. All that aside, my particular situation appears to be different and there is hope yet for a cure, even with the recurrence.

I could have had this tumor sent to Foundation one for mutation analysis, but a couple of the doctors have discouraged that for now….and, it does make “some” sense to me and my husband. In my case, there was nothing to treat once the tumors were removed. Again with the 2nd resection just done, there was nothing there to treat. Since mutations could develop over time, and we’d want to get any new tumor surgically removed, it makes sense to wait and see if this really continues to recur or not. There was some discussion that if several recurred at the same time, we would definitely send in a sample for DNA analysis with Foundation ONe. Right now, I can always change my mind and have this 2nd tumor analyzed, because it is preserved in paraffin at Mayo, which is acceptable to Foundation One.

So, for now, I am still recovering from the last surgery in December and looking forward to the future. The questions still in my mind are mainly that maybe this tumor didn’t act as aggressively….grow as fast….because of the adjuvant chemo (Gem/Cis) that I did after the first resection, that it beat it down for a while. I don’t know whether that really makes a bit of difference to the doctors though, as they all know I had chemo and they all said virtually the same thing to me about my prognosis.

It’s very hard to make a 180 degree turn from thinking that a recurrence means a slippery slope into more chemo or treatments, to thinking in terms of a possible cure. The whole family is starting to digest this news. Yes, it is fantastic news if things go as predicted. I owe it all to my fabulous GP, who put 2 and 2 together and ordered that CT back in Jan of 2014 of three of my pelvic organs. Heck, I owe where I am right now to her…..being alive and a chance for not just life, but “good” life.

I realize that some here on the boards will read this and feel envious, or sad that they aren’t currently being given good news. Our cancer situations are all so unique, but It’s my own personal reason for sharing my story is that it may give others hope who have had the good fortune to have their CC. diagnosed earlier than usual. It doesn’t mean that it’s over at the first surgery, but stick with it. It had been suggested that I move to scans every 6 months during the 2nd year and I refused and said no more than 4 months. That kept this last tumor from becoming bigger and maybe growing through the wall of the liver.

Julie T.