Papillary Renal Cell Carcinoma Type II, Grade 3

Hello Everyone,

Just found the forums yesterday and so thankful to have done so. I have read many of your stories, the heartaches and the victories. So glad to have found you all.

I'm 3 weeks out from a radical nephrectomy with a 12 cm tumor, and the cancer spread into the renal vein and up to the Inferior Vena Cava and lymph node. I did not have symptoms until this past October, when I began having blood in the urine. We thought I had a UTI and went through a few rounds on antibiotics, to no avail. Finally I was sent to a Nephrologist and a Urologist and had a couple of CT scans and ultrasound that showed the huge mass. 

I had the surgery March 8 in my old stomping grounds of Portland, OR. Up at Oregon Health Sciences University Hospital. I worked there for the decade of the 90's.  No one here in Boise, ID could do it. I could have gone to Salt Lake City, but wanted to go to Portland, so that's what we did. They were fantastic. I was in the hospital 5 nights. The surgery went well but took 10 hours. I had a huge thrombus deep into the liver and we hope they got it all, just as we hope they got all the cancer. I am very lucky to be alive.

I saw an Oncologist this past Monday, and he's ordered a new CT scan to see what's left in there now. He said this is a rarer form of agressive, fast-acting cancer. He ordered the Cabo and today I got a call from the Pharmacy saying they are working on it. Evidently the co-pays are quite expensive. No one has uttered a dollar amount just yet. I have good insurance due to my husband's military service so I hope it covers it well.

I am more afraid of taking Cabo than I was of having the surgery, as odd as that may sound. Just due to this huge list of 'possible' side effects. I do tend to have bad reactions to nearly all new medications I've taken over the years, so you can understand my trepidation at this! I have Fibromyalgia and have had all kinds of meds thrown at me over the years. Most made me sicker from side effects than any possible benefit they were supposed to deliver.

I have a huge upside down "Y" cut, and I'll tell you, old age and surgery like this is not for sissies. I'm 63 and in good health up to now for the most part, so I am thankful for that. I'm just happy to have that horrible monstrous stuff out of me. I lost ALL of my own blood during surgery and had to have transfusions. For which I am also grateful. 

They said before surgery that my good kidney could fail during and after surgery and I could need dialysis at the least temporarily. I am so happy this did not happen and the good kidney is thus far working very well. My GFR is 45% and that's better than before surgery.

So, on this Good Friday, and Day 1 of week 4 out of surgery, I'm one thankful lady. I don't know my survival rate for this, and even though I've read stuff online, I don't trust it and everyone is different. So I don't want to buy into any hype. However, I want to be realistic. Not quite sure where one draws that line. For now I am happy to just wake up every morning and be able to get up on my own!!

If you've read this far, bless your heart. This is by far the best site I've found. I have only found a few. You folks seem to be closer and more caring than the other ones I found. So if you'll allow me, I am happy to be a part of this wonderful group.

It all still seems surreal, like it's happening to someone else, and not to me.

I think everybody thought I was going to die, because I had relatives scrambling out of the woodwork wanting to come see me ASAP. Part of it was a little amusing to me. I talked some of them out of coming. The distant ones I hadn't seen in 40 years. I said I wasn't up to visitors, which is indeed true. My estranged daughter drove 11 hours from Montana to see me, and her whole demeanor has done a huge 180, to the good. So good can come out of something bad. My husband predicted something awful would be the only thing that turned her around and sadly he is right. Better late than never, though.

Still a lot to deal with, and tons more to learn, and even more yet to go through. I hope I have a good attitude. A lot of days I don't think I do. But I'm trying. The emotional part is hitting hard this week. Not sure how to deal with it.

All the best to all you fantastic people. Thanks for hearing me out. Any and all advice is gratefully received.