PT3, NX Pathology Report - anyone else out there with PT3 - how are you doing?

JoeyZ said:

I have quite a bit of

I have quite a bit of similarity with your husband. But I am glad to see his did not spread to the IVC nor into the renal vein into the cardiac system. That's great news. Mine did spread that far.

My tumor was 10 cm and it was quite a bleeder. Took 10 hours and I lost all my own blood and had transfusions. Did ok and am glad to be alive now. Recovering slowly but ok. Had surgery 3/8. 

Anyway, my classifications are pRCC Type 2, (the most aggressive) and Grade 3c.

I know you asked how people were doing without treatment, but just to chime in, I just started week 2 on Cabometyx. Docs are not really sure they got all the cancer. I had a CT scan last Tuesday and will get it interpreted for me this next Tue. when I see the Oncologist.

I understand the feeling of needing a break from doctors and all of it. I don't have that option just yet. I wanted to be proactive and have the treatment just in case they didn't get it all. Plus get a couple scans out of the way and see if any comes back. As fast acting as this is, I just didn't want to risk it. Cabo seems to have a good track record.

I don't know if any of this helps or not, but I sure do wish you both all the best. You do have a little time to think about what to do next, so you don't have to panic. 

So far my treatment is not too harsh. I know more side effects are coming, but into week 2 and doing ok with some stomach issues, a little nausea and sometimes a little pain. I tire more easily. But so far it's very doable. We'll see what happens in a few more weeks.

Hi JoeyZ,

You said:  "I don't know if any of this helps or not"

Just wanted to say that yes, it really does help and thank you!

I read what you wrote probably 3 times...at least.  If my husband listens to me about getting a 2nd oncologist opinion, I will also inquire about Cabometyx.  I see a lot of people on this message board that are on that.

I don't want to bring it up now to him because he is adamant that we don't speak about the cancer until maybe June or July.  He was seriously (no exaggeration) getting mentally and physically sick about it because it was on his mind all the time.  It's on my mind all the time, too.  He's feeling much better now that he has his mind on other things.

The first (and only) oncologist we spoke to wanted to put my husband on Gemzar and Cisplatin.

This was an adjuvant treatment plan.

Day 1:  The first day of chemo treatment would be 7 1/2 hours straight of Gemzar and Cisplatin fed into him through a chemo port.

Day 8: one hour of Gemzar given to him through a chemo port

Day 15: they would do lab work on him

They wanted to do Day 1, Day 8 and Day 15 a total of four times.

The side effects were harsh and we were also worried about his only kidney.  He also has diabetes but I don't know if that would make things worse.  We also don't even know if he has cancer in him right now and so it would be all that harm on his body for nothing.  Also, the oncologist said that if we DO the chemo, there is still a 34% chance he will still get cancer and if we DO NOT do the chemo there was a 44% chance he would get cancer.  So, the odds were pretty close whether we did it or not.

It's very confusing and a lot of information.  I would like him to go to a different oncologist facility to get a 2nd opinion and maybe there is a treatment plan he could go on that would not be so harsh.  Again, what if he doesn't even have cancer and we put all these harmful drugs in him.  Just wish I had a magic ball to tell me what his cancer situation is.  We will just have to get him screened for cancer every 3 months or so and find out.

I am happy that you said you are recovering slowly and are OK.  I am also happy to hear that your treatment plan is not too harsh.

I absolutely wish you the best and feel like we are all in this together.

I'll be checking back every now and then to find out about your progress.

Thanks for the comment on my post and your help!

kidneystoneblessing said:

Me too

Stage 3a 4 cm Tumor.  Was diagnosed stage 1 prior to surgery.   Upstaged due to kidney fat focal invasion.  So far doing good and NED since July 2017

Hi Kidneystoneblessing:

That's good news you are NED since July 2017.  When you had your kidney taken out did they also take out the kidney fat?

Dutch1 said:

I don't have the technical

I don't have the technical knowledge as to your specific situation as to your husband's kidney cancer.  I do know that advances in treatment have resulted in better results than 10 or 15 years ago.  For me, it's been that way.  I am at stage 4 and my surgeon's prognosis was that I'd have 3 years to live.  He told me that over 5 years ago and I am doing well right now.  My cancer came back twice and was dealt with twice.  So, it's a pain to go through the doctor visits and the treatment, but there are plenty of success stories.  

 

Taking a vacation from the doctoring isn't a great idea, in my mind.  Giving cancer a free go at it can't bring positive results.  

 

Your relationship with your primary cancer care doctor is so very important.  If you aren't comfortable with the support (medically and attitude) you get fromo him/her, it's time to look elsewhere.  I have been so fortunate because we found a great oncologist in our immediate area.  He's a small-city guy, but is a wonderful fit for my wife and I.  In conjunction with our local doc, we have consulted with a large teaching hospital in a larger nearby city.  We have used the teaching hospital for my surgery and for second opinions at important junctures in my treatment.  Don't be afraid to seek second opinions.  A good doctor shouldn't resist your desire to get another doctor's input.  Cancer treatment is not entirely a science.  There is some art to the healing process.

 

I wish you the best.

 

Dutch.

"Taking a vacation from the doctoring isn't a great idea, in my mind.  Giving cancer a free go at it can't bring positive results."

I agree.  I want to seek second opinions.  My husband isn't on board yet.  He has already told me more than once he is ready to die and isn't afraid of dying.  Well, I'm not!  I don't want him to die and I want him to live a long, healthy life.  

sblairc said:

Hello again, I apologize if I missed a post here, but since many of our friends here were sharing experinces about kidney cancer, I wanted to clarify and ask if you had looked up "invasive papillary urothelial" and knew it was bladder cancer? I believe that was what i read. I just know it can be overwhelming, but if it is indeed bladder cancer the info from your kidney cancer friends here may not be applicable since they are different types of cancer (even though it was in the kidney). My husband had kidney cancer in 2013 and more recently agressive fibroma/desmoid tumor of the small intestine which we were told was cancer but then told it was not. I understand the roller coaster, and just want to help as best as I can. 

I did notice that in my Google search.  Very confusing since the tumor was in his kidney.  His bladder will have to be monitored.  The urologist/his surgeon did check the inside of his bladder in January when he had his utereroscopy (before his kidney was removed in February) and said his bladder looked OK.

This is frustrating.

I noticed in your profile that your husband's Pathology is T3a.  Did he ever receive chemotherapy or just surgery?

AnnissaP said:

Good morning! So glad to hear

Good morning! So glad to hear they took the kidney and cancer out! It is tough, but enjoy life. There will always be so many questions, but why allow that to stop you from living?! Thinking about it all the time won't change anything or make things better or worse. I know, I know...Easier said than done. I am happy to hear your husband is out golfing. Wonderful!!! See...enjoying life!!!! Please don't let this cancer thing control your life or mind. We have all been there or are there right now and we all have one thing in common.....LIFE!!! We all have life right now so.....live it. Stay up. Stay strong. Stay laughing and enjoying every minute you have here xoxo.