A) Dr Haas, my oncologist, and the Penn Radiologists feel that the pancreatic tumor (which is 1.5 not 1.2 cm as I stated before) is probably a kidney cancer (RCC = Renal Cell Carcinoma, clear cell type) metastasis, rather than another type of benign or malignant pancreatic tumor. I guess this is better than having two kinds of cancer, but benign would have been even nicer. :-(
B) They also feel that the kidney and pancreatic tumors are too small and/or it is too risky or of no benefit to have them removed or biopsied, and feel that starting targeted therapy medication ("chemo") ASAP is my best option, as it would treat the kidney and pancreatic tumors as well as the lung spots, now that they are assuming that all are kidney cancer (RCC).
C) Dr Haas is consulting with the surgeon from my second surgery, Dr Uzzo, at a medical conference they are both attending this Thursday in San Francisco. Please pray that they are able to discuss my case sufficiently, and that both will give me wise counsel.
D) I'm investigating options for a second opinion. It's a complicated, time consuming learning process, and my head is spinning with information. Please pray for wisdom for me and clarity from any doctors that I consult. And, please pray that my insurance will cover a second opinion if I decide to pursue somewhere out of the Philadelphia area. Kidney Cancer specialty hospitals are few and far between, so I may have to go to Baltimore or NYC to find the reassurance I need about my treatment plan.
Below is a video by the RCC specialists at Sloan Kettering, which explains in some detail the relatively recent advances in treatment for metastatic RCC. I realize this is 20 minutes more information than most people need, but if you are so led to listen to some or all of it, you will have some idea of the decision process we are in right now. (There is a good summary from the 11:45-14:50 mark on the video. If you have about three minutes to watch that part you will have the general idea.)
Thank you so much for praying for us as we research, pray, and decide on my treatment. We cannot imagine walking this road alone.
Karen
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.
Wednesday, January 29, 2014
Thursday, January 23, 2014
Not the News We Hoped For
Sadly my scans showed that the five (or six?) lung spots are a tiny bit larger, again. Still only 5-6 mm and they took three years to get to that size, but the trend is not good.
More importantly, I have a new tumor in my remaining kidney. It's very small (8mm) but my radiologists and oncologists agree it is surely Renal Cell Carcinoma, again. This is the THIRD time, and so it's looking like this trend is not stopping on its own any more. After the second tumor, hopes were that each kidney had experienced some sort of "event" sometime in my life which had predisposed each kidney to form A tumor, but now that there's a third occurrence it's likely a pattern that will continue.
Lastly, and of equal concern, is a new 1.2 mm tumor on my pancreas. It's a different looking tissue on MRI than the kidney tumor, so it is not yet known if it's a new, different cancer (yuck) or something benign. Docs do not think it's a kidney cancer metastasis, but we really don't know yet.
So, we've jumped from "some tiny harmless spots in your lungs we need to keep an eye on" to "you have a lot going on in there, it's time to start treating ASAP", in one afternoon.
I'm kinda numb at the moment.
On the positive side, new treatments are being approved all the time, and the ones currently in use are keeping kidney cancer tumors small and manageable for many years in lots of patients. I know of people with more and even much larger tumors who are like the energizer bunny. 10-15 years or more on "chemo" and still leading relatively healthy lives.
So, that's the story. Please pray for us all as you think of us. It's a stressful time for Charles and the kids too. Plus, business is often slow in January and February - this year is worse than ever. The snow and bitter temps don't help. So money is very tight which only adds to the stress.
I'm not thinking clearly enough to bring a perfect verse to mind, but I do know that God has not forsaken me, even now. He loves me enough to die for me. He's known this would happen since the beginning of time, and He has his reasons, even if I don't care for the plan right now.
Thank you all so very much.
Karen
P.S. I am including the following verse as a prayer for my mother. Thank you for continuing to lift our family up in prayer before the Lord.
Kristen
"Though I walk in the midst of trouble, you preserve my life; you stretch out your hand against the wrath of my enemies, and your right hand delivers me. The Lord will fulfill his purpose for me; your steadfast love, O Lord, endures forever. Do not forsake the work of your hands." Psalm 138:7-8
More importantly, I have a new tumor in my remaining kidney. It's very small (8mm) but my radiologists and oncologists agree it is surely Renal Cell Carcinoma, again. This is the THIRD time, and so it's looking like this trend is not stopping on its own any more. After the second tumor, hopes were that each kidney had experienced some sort of "event" sometime in my life which had predisposed each kidney to form A tumor, but now that there's a third occurrence it's likely a pattern that will continue.
Lastly, and of equal concern, is a new 1.2 mm tumor on my pancreas. It's a different looking tissue on MRI than the kidney tumor, so it is not yet known if it's a new, different cancer (yuck) or something benign. Docs do not think it's a kidney cancer metastasis, but we really don't know yet.
So, we've jumped from "some tiny harmless spots in your lungs we need to keep an eye on" to "you have a lot going on in there, it's time to start treating ASAP", in one afternoon.
I'm kinda numb at the moment.
On the positive side, new treatments are being approved all the time, and the ones currently in use are keeping kidney cancer tumors small and manageable for many years in lots of patients. I know of people with more and even much larger tumors who are like the energizer bunny. 10-15 years or more on "chemo" and still leading relatively healthy lives.
So, that's the story. Please pray for us all as you think of us. It's a stressful time for Charles and the kids too. Plus, business is often slow in January and February - this year is worse than ever. The snow and bitter temps don't help. So money is very tight which only adds to the stress.
I'm not thinking clearly enough to bring a perfect verse to mind, but I do know that God has not forsaken me, even now. He loves me enough to die for me. He's known this would happen since the beginning of time, and He has his reasons, even if I don't care for the plan right now.
Thank you all so very much.
Karen
P.S. I am including the following verse as a prayer for my mother. Thank you for continuing to lift our family up in prayer before the Lord.
Kristen
"Though I walk in the midst of trouble, you preserve my life; you stretch out your hand against the wrath of my enemies, and your right hand delivers me. The Lord will fulfill his purpose for me; your steadfast love, O Lord, endures forever. Do not forsake the work of your hands." Psalm 138:7-8
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