New to all this and not sure who or what to believe

icemantoo said:

You can beat this

DAC67,

The numbers your ONC gave you seem much gloomier than what others are facing. There are plenty who will chime in with similar challanges to yours who are doing relativelty well. There is no way to sugar coat the fact that with the size of your tumor there are risks of a recurrance. However with all the new meds and treatments coming out in the last few years many of those obstacles have been overcome. I have always believed that part of the recovery is attitude and determination and you sure have those going for you. Also  try and get a second opinion as far up the food chain as possable.

 

Icemantoo

Thanks for the reply and encouragement.

In retrospect i should have got an ONC I liked right off the bat, but I thought we'd just cut this out and be done with it.

Everyone who wanted to be nice had a story of people with RCC and a kidney removed who were doing fine 20-25 years later, so i thought / hoped with todays medicine i would outlive them all. Now with what this ONC has said even if his numbers are pessimistic i have a something to fight and worry about from now own.

Im curious what the real numbers are and also if anyone has used some of the places im considering consulting like Indiana University RCC institute, or MD anderson or Cancer Treatment of America or Norton Cancer Institue in KY.

all this feels like overkill and im even a bit embarassed to reach out like this, but that doc scared me. Maybe that was his plan

Footstomper said:

I'm a mild mannered man

What the hell is your Oncologist doing giving out numbers like that? I dont even think its right: for anecdotal evidence look at this board. I'm grade 4 Stage 4 - as bad as it gets and I have no intention of kicking the bucket very soon. Not only is it poor - no lets make that AWFUL - treatment, its also bad science. The science of cancer, and specifically kidney cancer is changing so fast that no one can see 5 years into the future. Its all good news.

I recommend you change your oncologist as soon as possible. Do you have a teaching hospital within commuting distance?

Your life is literally in these peoples hands. Dont you think you deserve someone you trust?

I appreciate all the feedback. I do think that Oncologist is an idiot and am looking for a new one. I do have an appointment on 2/23 at the Indiana University Kidney Cancer center. I think the Oncologist who told me all that stuff was trying to scare me into entering some of his clinical trials. Im still fairly young and strong and with my tumore size and cancer stage I think I might fit the bill for several trials. Thats all i can guess at. I actually feel very good and no one would guess I had such a large tumor removed so recently. I honestly question whether i even have cancer anymore and whether im in remisission or are cancer free...I dont know. I had never even seen an oncologist untill a week ago.

sblairc said:

That's actually not entirelytrue.

They do clinical trials on those high risk for recurrance. They are called "adjuvant" clinical trials. So far, none have produced results but it is indeed the holy grail of treatment protocol which kidney cancer has eluded. It sounds like your doctor wants you to be in an "ADJUVANT" trial testing drugs to PREVENT recurrence in those with UNDETECTABLE active disease. 

My opinion: I wouldn't do it. But others may have opinions. 

I think thats exactly what it was. My urologist mentioned a clinical trial available for people at risk or that had what he called "floating" cancer cells as a nice safeguard against reccurance. the oncologist said right off the bat that I wasnt qualified for that trial because i was just over the 90 day from surgery threshhold for that trial and my urologist hadnt refferred me in time. Thats when he went in to full scare me mode and ordered all the tests i just took today.

reading this board has informed me to be more wary of some trials as they may have side effects or disqualify me for future trials. I would have rtrusted my doc and never asked those questions before

todd121 said:

Prognosis

I was Stage 3. I think 3B. My tumor was smaller than yours but had invaded some veins in the kidney. The first oncologist I saw was a regular oncologist (not an RCC research oncologist). He gave me a very rosy diagnosis. I decided to see 2 more specialists. Both are RCC research oncologists. I trust their prognosis. One of them even showed me the studies he was basing my prognosis on.

Just remember, a prognosis is just an odds/guess. It doesn't tell you what will happen to you.

You do need to be followed closely. You are at a much higher risk of recurrence than Stage 1 or Stage 2.

You don't mention the type of RCC you were diagnosed with or the Grade. These are important.

In any case, I'd find an RCC oncologist, or an oncologist that is smart and close by willing to partner/advise one. The best is if you can find one. You don't mention where you are. You can get help by asking on here. The way I found mine was by looking for RCC studies in my area and calling the contact numbers for those coordinating the studies in my area.

It is a good idea to see an oncologist soon after surgery, because many of the trials do require you to start soon after the surgery. However, I don't know that there are any promising adjuvant studies going on at the moment.

I'll share my prognosis, but remember that we are different. Besides Stage, for a prognosis, you need tumor size, grade, and type of cancer (clear cell RCC, chromophobe RCC, etc.) And also remember that a prognosis does not tell you what is going to happen to you. It just tells you probability. It can be helpful, though, for figuring out how closely you need to be watched.

I was told I had between a 20% and 40% chance of it coming back. So I looked at it as a 60-80% chance it wouldn't come back. I felt pretty good about that. Still, I was followed pretty closely. I did an adjuvant study the first year. CT scans neck to knees every 4 months the first year, then every 6 months the second year. I had a metastasis to my adrenal gland the second year. It was caught early and I had surgery and it was removed. I've been NED for 2 years now.

So, like you, I was Stage 3 (grade 3 clear cell RCC, 7cm tumor), and I'm over 4 years now and still NED (just that one little second surgery).

Regular oncologists are not all up-to-date on what's going on with kidney cancer. There are new drugs. There are new radiation techniques. There are better surgeries. There is better imaging to catch things early.

I don't know if you have to travel to MD Anderson. There may be another good place near you. Post where you are and maybe people can help you find someone.

I'm in Orange County, Ca. Los Angeles has several RCC oncologists that are the best. I've been very happy with my care so far.

Take it seriously, but don't let it get you down. Nobody can tell you what's going to happen. You're in the same boat you were in before and the same boat we are all in. We don't know how much time we have left. Enjoy it. Don't ruin it with burdening yourself with worry about things you can't control. Just do what you can and let the result go. I know that's sometimes easier said than done, but work at it. It gets easier with time.

Regards,

Todd

Your posts brings up some good points about my ignorance and how im just starting to learn.

I was never refferred to an oncologist untill 4 and half months after my diagnosis and 4 months after my surgery. It seemed odd to me but I trusted my docs.

I have no idea to this day what type of cancer it was, all I knew was "kidney cancer" and they said it was an agressive fast growing type and I wanted it out fast and they cut it out. (I have a pisture of the tumor and kidney on my cell phone.......i dont know why). I dont know how to find out what type of cancer it was aside from kidney cancer and im not sure how to use the information.

I know its size because when my GP found the tumor it was about 11 CM and they said larger "the size of a football" when they cut it out. I never asked any more. 

I know its stage 3 because they told me so and because of its size and the involvement of the renal vein and the surgeon said he "milked" it away from the heart before he cut and that he was relieved to have not needed to call in a heart surgeon.

There is just so much to learn and im so far behind. They cut it out and had good margins and I thought and hoped i was done with all this and could put it behind me and for get about it

todd121 said:

Pathology Report

Ask for a copy of the pathology report. You are entitled to one. It will have the exact details of what they found there. You really should have it. Also, you should have a specific diagnosis from your urologist based on this. The most common type of RCC is clear cell. You should have a Stage (1-4) and a grade (1-4).

If you're interested in reading about the staging, have a look here:

https://www.cancer.gov/types/kidney/patient/kidney-treatment-pdq#section/_26

This is a little more detailed:

https://www.cancer.org/cancer/kidney-cancer/detection-diagnosis-staging/staging.html

The grade refers to how aggressive the cancer is. 1 is the least and 4 is the most. It has to do with how abnormal the cells appear under the microscope.

Keep in mind, Stage 1 and 2 have to be fully contained. If the tumor invaded even some of the veins in the kidney and it's a small tumor, it's Stage 3 instead of Stage 1.

I also had Stage 3. Mine was clear cell RCC stage 3 grade 3. Then I had a metastasis to the adrenal gland that they left me (I wish now they'd taken it) 2 years after.

My urologist also didn't encourage me to see an oncologist. He was going to follow me. I pushed for it. My uncle is a retired oncologist and he was encouraging me to get other opinions. I'm glad I did. Although, since there is no adjuvant therapy really approved, I think waiting wouldn't have mattered much. I wouldn't worry too much about missing out on the study. I haven't heard of any adjuvant study that anybody is excited about. I might be wrong. If somebody else knows, please share.

You will want close follow ups. You are at higher risk than the Stage 1 folks here. I'm going to say what I had done because I was looking into being in a study they wanted to insure I was really not Stage 4. So they did a brain MRI with contrast, and a nuclear bone scan, and a CT of chest, abdomen and pelvis to just make sure there was no tumor anywhere else. You might want those too. My oncologist followed me every 4 months with a chest, abdomen and pelvis CT scan for the first year, then every 6 months and was going to do that till 5 years I think and then annually. After they found my second tumor, I'm now on a 3 months schedule of CT scans of chest, abdomen and pelvis. Some urologists will go for a chest xray as followup. I think that's bad idea for those of us at high risk. By the time stuff shows up on an xray, it's already pretty good size. It will be caught earlier on a CT. And you'll have multiple CTs to compare over time.

Hope some of this helps. Keep in mind I'm just a software guy that got RCC. All of this is just based on my path these past 4 1/2 years. Talk to your oncologist(s). Get second even third opinions. I got 2 opinions and they didn't agree, so then I got a third. The last two were from RCC experts. The RCC experts agreed and then I knew the first guy didn't really know what he was talking about. I ended up picking one of the last 2 doctors to follow me.

Best of luck to you,

Todd

My wife is in medical records so she is going to get the path report.

I do know the guy said it was fast growing so it maybe took 12-16 months to grow to 11 CM.

I am also on a 3 month schedule for CT of the abdomen and just today I had bone scans, MRI of the brain and more blood work and CT of the chest and an X-ray. I couldnt get contrast with the CT of the chest because my creatinine levels have been rising.

interesting your in software because i manage a department of programmers.

I do have an appointment at IU on 2/23 to have a second opinion there.