Path report

DAC,  hold on, remember reports are just that, reports. It takes the specialist, and sometimes more than one, to interpret and tell you what is what and offer you all options.

AND there are so many on this site with stage 3 & 4 that are HERE! Some with no treatment necessary or NED.

We're here for you no matter what. Remember we are ok?

Take a breath, use your faith and wait to hear from the experts.

Hugs, Jan

DAC677 said:

Thanks all

I played golf today and have horse riding and camping trips planned. I went hunting 5 weeks after my surgery and stay very active.

I dont think  anyone could tell I had this if I didnt tell them. Its odd, in that I didnt go to a gilda's club meeting or post here and learn more about Cancer because I didnt feel sick or in need, i didnt think i belonged in "the cancer club" (and still dont). Then I read the stats and you start thinking about the things you might not get to do if things went bad. things like my when my daughter gets married or has a kid. I dont regret anything, I just have so much left to do. I aim to be very hard to kill and be on the good end of those stats, then I fele guilty its like wishing my misfortune on someone else and I hope to be better and stronger than that.

I know this seems like a melancholly post and i dont mean it that way. I think I am cancer free for now and have a great life and am doing well. Just sometimes we have thoughts we need to put into words and maybe you all get what im saying more than anyone else.

Im 40, had a 9.5ish cm tumor.  They got it "all" back in early Sept.  I have had one scan so far and it was perfect (with the exception of a missing kidney).  I actually played in a member guest golf tournament (54 holes in 3 days) 5 weeks and 6 days after my surgery.  I was sore, but other than that, no problems.  I played golf this past Saturday and shot an 84.  My path report says I am stage 3A or something like that.  Honestly, I dont pay any attention to it.  Try to eat healthy, do my scans, and get on with my life.  My 2 cents is that you are doing great......enjoy it!

Hi DAC,

My path report is similar to yours, exept mine is grade 2 and not into veins...however mine was lymphovascular invasion. I am 3 years out. All clear every time!! No immunotherapy, just follow up. Keep up with your scans, and see if your new oncologist recommends any other treatment.

Don't look at the outdated survival numbers. We have come a long way, baby!

Fore!!!!

Hugs

Jojo

I checked that website, and man, there are a lot of red flags there.  Hell, the “contact us” has a gmail email address listed.   I would not put much stock in what they have posted there.  

When I'm researching a topic I tend to avoid website with adds like this in them:

Yes numbers are numbers, but those stats you see listed here are a bit misleading in my humble opinion.  

The numbers the National Cancer Data Base and are based on patients first diagnosed in the years 2001 and 2002. These are observed survival rates. They include people diagnosed with kidney cancer who may have later died from other causes, such as heart disease. People with kidney cancer tend to be older and may have other serious health conditions. Therefore, the percentage of people surviving the cancer itself is likely to be higher.

You are fairly young, it sounds like you are healthy, and you were diagnosed in 2016.  Those are three major things you've got going for you.   

Mixing T3 and T4 is crazy in terms of long term survivability. Their numbers are probably way out of date, most likely pre-dating many advances like the new drugs, new radiation techniques, etc.

With T3 and Grade 3 you do need to stay on top of your followups. I had the same stage/grade and saw two RCC expert oncologists. Both told me somewhere between a 20-40% chance of it coming back. That's pretty high. You want to catch it early if it does come back. The earlier you catch it, the more likely it might be operable and can put you back where you were.

I had a nuclear bone scan (to make sure no bone mets) and a brain MRI, plus a baseline CT of chest/abdomen and pelvis after my nephrectomy. This was to make sure I really had no other mets. The first year I had CT of chest/abdomen and pelvis every 4 months. The second year every 6 months. I would have had that until five years and then annually after that. However, I had a met to my adrenal gland after 2 years. They caught that pretty early and removed my adrenal gland. I was told that put me back where I was when I started in terms of likelihood of it coming back. However, because of the met, I'm on a 3 month scan schedule now plus blood work. 2 years no with no mets.

My urologist would not have done any baseline scans, nor the nuclear bone scan or brain MRI. His plan was to go to a chest xray, and CT scan of abdomen and pelvis every 6 months. I think he was wrong. I'm happy my current oncologist is aggressive. When I asked when I can cut the frequency of the scans back, he said to forget about that for now. He wants to catch anything that comes early when it might be operable again.

If I'd had more mets in that first year after my adrenal met, they probably wouldn't have done surgery again. They probably would have put me on medication.

Try and find a medical oncologist that knows a lot about RCC or is willing to call one and work with one to get you the followups you need.

Regards,

Todd