Tumor interval progression on 8/6/2008 CAT Scan- Results, Thoughts and "False Positives"

I was on a 12 month "vacation" from further tumor growth with pazopanib, until the last scans on 8/6/2008. Unfortunately, the monster has started to roar again, and it grew in the last scan of as noted:

The Impression data reads:

Interval Progression (that is not good news)- there is a 1.2 cm nodule in seg VII of the liver in the periphery that previously measured 1.1cm, There is an addition a 7mm nodule in segment VII that previously measured 5mm. There are additional nodules in the liver that are either stable or slight more prominent. An additional example is a 1.5 cm nodule posterior to the middle hepatic vein that previously measured 1.3cm. An additional liver mets is seen in segment VII. Numerous additional nodules are identified in the liver.

Retropertioneal mass appears grossly stables. There is encasement of the superior mesenteric artery.

The right kidney is surgically absent and there is a hypertrophy of the remaining horseshoe kidney.

I HATE THE WORDS "INTERVAL PROGRESSION". It is worst set of words from a radiologist report. It is a scientific set of words to inform the patient "your screwed" (to put it nicely)....

I am not feeling well today because of it. Although I had this report for a while, I never really read it closely. As I took it out again today to read it, I immediately realized "I AM SCREWED".

I continue on pazopanib, the experimental medicine, and I will have to wait the outcome of the CAT scans to be done in November (happy thanksgiving!, I guess I now know how the Indians felt....) to ascertain if the tumors continue growing, or have decided to give me a rest.

I have recently started on the black raspberries in order to see if adding this fruit in my diet will help in stopping the growth. Its my only current hope, or I will need to consider other options. One of them is a serious operation in the retropertioneal area (which in 6/2004 was a small lymph node, lite up in the Octreoscan, and not removed (see previous blog entry) during 6/04 surgery! )

When we miss doing the right thing, with this disease, typically it will end up costing the patient in the long run. In my case, it feels like all, or many, of "my breaks" or luck, have been on the wrong side of the ledger with this disease......why, I just don't know?
But to have simply remove the diseased lymph nodes in 2004, would have been one less deadly issue to deal with. "If only" the surgeon checking the area around the "hot" lymph node removed it, and resected the nodes around the suspected area, I would be in a bit better shape today.......maybe not?
The Octreoscan was not a "FALSE POSITIVE" as the surgeon suggested to me after the operation, when I ran into him in the lobby of my floor, as I was walking the hallways, in hospital attire, hooked up to IV tubes in my arms, urine tubes in penis, walking to try to recover to get out of the hospital faster, when I saw him in the hallway (he never bothered to come talk to me directly btw) and I asked "why was nothing removed from this area during the operation"? He replied, "he saw nothing", and ended with "false positive" then left quickly.

Later that week, when I checked out of the hospital and visited the primary oncologist, he asked me during our office visit, with my wife in the room, "why did the surgeon not remove any suspected lymph nodes during the surgery"?!

Here is what the Octreoscan report dated May 7, 2004 said" in the retroperitoneal space just below the origin of the left renal artery, there is now an isolated focus 3+activity."

t was then, and a bit too late, that I began to realize that I, as a patient, had totally been misguided when working MY DISEASE with medical staff in complicated cases. There has to be a level of trust in any relation, but with that trust, I should have also taken the initiative to become:
1) well informed- as to my disease, and surgical procedures recommended and to be undertaken,
2) aggressive- relative to getting the right questions and issues addressed with the MD's, don;t worry about hurt feelings......inoperable tumors hurt much worse than feelings
3) take the initiative- to get different opinions from other MD's when "your gut" tells you something is wrong, and finally
4) demand, (in a good way) team work-, when working with the physicians, you expect, "metrics" if you will, of a successful procedure they are recommending. Also, ensure the MD's understand the technology they are working against and have the right tools to "fight it".--in my case the surgeons not familiar with Octeroscan, for example, and could have used a
neo-probe needle during surgery to highlight the unseen disease!

By working in this manner, you will, at times, help your medical team and help yourself, to receive better medical care and coverage.

In my particular case, the key learning was I should have was insisted on a meeting with the surgeons (1) the liver MD -primary surgeon for this operation, 2) the urologist who was called to review the areas focus 3+ area in question, and 3) the oncologist, who performed the Octreoscan and was the expert in reading the results, prior to the surgery, to discuss the surgical plan, what the positive reading meant in the retropertineal area, did the surgeons understand it, how would they search for the hot area, what tools did they have to pin-point the mass, and how would they address it? In this setting, and working as an effective team, the oncologist, working as a team with the surgeons, would have noted to them that "I was very sensitive to the scan (from previous scans), therefor, a 3+focus reading was indicative of tumor cells, and he would have recommended removal of lymph nodes in the vicinity of the fusion level".

I did nothing, and essentially got nothing in return, except an after the fact .

Now, today, I have a retropertioneal grossly stable mass encasing the SMA and kidney artery.... a snake slowly trying to kill me........."false positive".....I should have given myself a better chance at a longer life, don't you think?

So today, amongst other things that have occurred, is not a very good day for me.
Today I understand "interval progression", and the message it brings with it. And with one kidney (horseshoe) remaining, and a failing optimism on life, it is really difficult today.

So please, enjoy your life--- every minute of it--- and don't complain about petty shit...... if you do, contact me, and I will talk to you about "interval progression", "false positive" "and doctors asking you why other doctors didn't do what they were supposed to"!

Today, I called funeral homes for price checks on various options. I never thought I would go shopping for this stuff for myself at age 52!

I will pray something comes up in the Toronto conference as an treatment option for me................. I need the "Governor" to give me another "stay of execution"!

Hopefully pazopanib continues to work, with the blackberries in kicking in!!!! you never know!

False Positive!