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Papillary Renal Cell Carcinoma Type II, Grade 3

JoeyZ's picture
JoeyZ
Posts: 210
Joined: Mar 2018

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.

stub1969's picture
stub1969
Posts: 888
Joined: Jul 2016

I'm so glad you found us and posted your story.  You've certainly had one heck of a year.  Sounds like you have a strong supporter by your side--that makes all the difference.  If you're willing, you can count us as part of that support, too.  I don't have any experience or knowledge about Papillary RCC, but we do have some members that have had tumors the size or yours.  Some of them are on medicine and a few are on Cabo.  I'm sure they will chime in and share their experiences. 

Good luck.

Stub  

 

Tapman63's picture
Tapman63
Posts: 137
Joined: Dec 2017

Glad to see  you're on the other side of surgery and on the road to recovery.  I hope the doctors got everything out that needed to go and you have event-free recovery and clear scans from here on out!

Best wishes,

Jim

jazzgirl's picture
jazzgirl
Posts: 198
Joined: Nov 2017

and welcome to the group. You said "it all still seems surreal, like it's happening to someone else, and not to me."  Yes, that's exactly one of the main feelings in all this.  I do hope your daughter sticks around and maintains that 180 - it would benefit both of you.  Does cabo mean cabozantinib?  I don't know anything about it, but I also don't do well with meds and hope you tolerate it all right.  You mentioned Good Friday and how everyone thought you were going to die.  So I wish you a blessed Easter - every day feels like a bonus day for me, and I hope for you.  Take care -

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

gosh you have had a rough time but so pleased to hear you are recovering Well

i read every word and admire your courage and strength so much

we have quite a few old timers here who have your strength of courage and have done very well in their continued search for getting the next and best treatment

i don’t know if you have also checked out smart patients but that is also very good for advice and knowledge 

its make me so angry that with your symptoms you were not scanned straight away.. Plus why was the op only done recently

i do Not understand the USA medical system.. was that because you wanted to travel

there are also isomer old timers on here with your type who don’t  visit regularly but if you search you Will be able to find them and contact them direcT

i hope  the Cabo goes well. I also hate taking tablets for the same reason that the seem to cause more se.

it is still very early days and you will build your strength day by day

the mental side is Tougher and that is where we come in

there is always someone here that you can shout or rant at and we will listen and support You.

i always say my Consultant is Brillant but here is better

keep us posted

Annie

JoeyZ's picture
JoeyZ
Posts: 210
Joined: Mar 2018

Thanks so much for the warm welcome from all of you. I sure do appreciate it. I think I found this at just the right time, too. Don't seem to be dealing with things very well this last week. Maybe being a little too hard on myself, I don't know, or expecting too much too soon. Not sure. 

Stub - thanks so much and I've read a lot of your posts already and look forward to seeing you around more. Hope you are doing well.

Jim - You, too! Thanks for being here and look forward to more from you as well.

Jazzgirl -  You asked if Cabo means Cabozantinib, and yes, it does. I've heard good things about its effectiveness, but not side effects! I like what you said, that every day feels like a bonus day! That is how I feel already, too. Thanks for the welcome. We do believe the daughter is genuinely with us this time. I accept it at face value. Have to let things go sometimes, for the greater good.

Annie - Thank you, too! I don't feel strong or courageous at the moment though. Yes, I did find Smart Patients also and thank you. They thought I had a UTI so the scan came later. I think it (tumor) was huge already. But the cancer may not have spread so far. We'll never know now, I guess. They didn't diagnose it as cancer until February this year, so that's why no surgery until March. No, it wasn't because I wanted to travel that I went to Oregon, it was that no specialists here know how to do this particular surgery. Only a few places across the country do it! I was shocked. But I had a wonderful team and they were very, very thorough. So, here we all are and we keep slogging along!! 

I wish EVERYONE here a wonderful Easter.  Again, thank you for such a nice welcome. Off to read more!!

 

jomoore60
Posts: 6
Joined: Mar 2018

Sounds like your doing well. I hope you will be able to do well on the meds. I'm kinda in the same place as you we're. mine is a 8cm renal mass on left kidney, found having a ultrasound for blood in urine. just had MRI yesterday. hoping to hear from doctors Tuesday. I think the waiting is the hardest.

I really hope everything goes great for you.

JoeyZ's picture
JoeyZ
Posts: 210
Joined: Mar 2018

Hi Jo, I agree with you that the waiting is indeed the hardest part. Glad you got the MRI done. I think things will move fast for you after Tuesday. I hope. Hang in there. Keep in touch. I will be happy to answer any questions I can. I'm not nearly anywhere to being an expert but can share experiences. The people on this forum are fantastic, as I'm sure you've also found. Yes, I am doing ok, but it's still a struggle. Thank you for the kind wishes and please do let us know what happens on Tuesday!

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I also had Papillary type 2 but he said it’s a T1. I won’t get my full report until next week Thursday at post-op. I am thankful I got it out when I did. Hope you’re healing up well! 

Jenn

JoeyZ's picture
JoeyZ
Posts: 210
Joined: Mar 2018

I'm glad you did, too!! I'm doing ok, but it seems like slow going. Have to remind myself, I'm no young spring chicken anymore! More like an old winter goat, haha. At age 63, almost 64, things go a lot more slowly. So patience is key and some days it's hard to have it!

Ask for a copy of your pathology report if they don't give you one. I was glad they just handed me a copy. I had to read it several times to get all the info.

Nice to hear from you!

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