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

DAC67
Posts: 5
Joined: Feb 2017

Ill try to keep my story brief. I like reading the posts and learning

I consider myself a bigger strong 49 yr old former military guy who despite working in a suit i still , hike and walk and play sports and ride hoses.

September 2016 i saw my primacy Care doc for a pulled muscle in my stomach  and the CT scan she ordered found a 11.5 CM tumor that enveloped the kidney. (only the people here know how it feels to get that call out of the blue).

My tumor was stage 3 (C - I think) because it had invaded the Renal vein to the edge of the heart. I was lucky and suprised to find that two weeks later it had not involved lungs and bones which seemed to surprise my docs.

My sugery happened within two - three weeks of the intial diagnosis and i soon had 46 staples and no kidney. I walked within hours ogf my surgery determined to beat this thing. I was back to deer and rabbit hunting 5 weeks later and convinced I would put this bihind me and never look back except the occasional scans ordered by my doc. i know everyone here is nice but its not a club i want to be part of and besides 10 weeks after my surgery i could do almost anything as before and no one would believe id ever been sick.

Problem is that last week, 4 months after my surrgery I got referred to an Oncologist for the first time. I went expecting a victory lap of high fives and easy lifestyle advice, because I just had my first CT of abdomen after the surgery and it was clean. but no......the first thing this doc tells me is that i dont qualify for a trial drug he wanted to use on me because we waited too long to see him and then he goes on to say i have an 80% chance of getting cancer again in 5 years and a 50% mortality rate. I was dumbfounded and my wife was crying, that news was so different from anything id been told before. I thought I was great. I feel this doc just wants me for clinical studies and I dont trust him. I will go through with a whole battery of scans and tests he ordered this Friday because its best to know, but after that i dont know who to believe or what to do. I have heard that Indiana Univerrsity has a great Renal Cell cancer program and maybe ill go see them or try another local doc or MD Anderson or CTA, heck I dont know

I thought I beat this. I think im cancer free.....but what the heck!! 

icemantoo's picture
icemantoo
Posts: 3317
Joined: Jan 2010

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

DAC67
Posts: 5
Joined: Feb 2017

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

Hd67xlch's picture
Hd67xlch
Posts: 152
Joined: Apr 2016

Hey if I were you Id be thrilled at having a 50% mortality rate, I was pretty sure it was 100% for all humans. All kidding aside, they dont have a f&*&ing clue as to who is going to live another 30 years or who is going to live 5 years. I went over 5 years without a recurrance, my step dad went over 30 years and it never reccured on him. Im convinced its all just a guessing game with oncologists.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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?

DAC677's picture
DAC677
Posts: 60
Joined: Feb 2017

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.

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

I can appreciate how you are feeling DAC, but confused. At your 4 month scan, they found something or not?

Anyway, agree with Footstomper, get rid of this guy. Obviously he's not aware of RCC treatments currently.

We will ride along side you through all this if you want us to, DAC.

Hang in there.. hope is on the way!

Hugs, Jan

DAC677's picture
DAC677
Posts: 60
Joined: Feb 2017

at the 3 month scan they only scanned the abdomin and didnt find anything other than what they thought was scar tissue from the surgery. 

I had never seen an ONC and at the 3 month scan my urologists just threw out the idea of me seeing an ONC to investigate clinical trials almost as an after thought. thats when things got crazy and i got the rude awakening about learning more and treating this more seriously.

 

Kangaroorex
Posts: 45
Joined: Jul 2016

I have been with them for three years now and I have a lot of faith in my Oncologist.  i am also Stage 4 so I was pretty scared silly when I saw the statistics for survival that are out there.  but I am 3 years now with no further growth or progression to new sites.  I really think that the right doctor make all the differnence.  When i had a few second opinions, I ran into a couple of doctors, specifically at Ohio State in Columbus, that made me feel like giving up and dying right then and there was the best choice.

Finding someone you like and can work with is the most important thing.  Finding someone who is also familiar with the newer and upcoming treatments is even better.

DAC677's picture
DAC677
Posts: 60
Joined: Feb 2017

Thanks for sharing about NCI. I dont want to say anything bad about them just because of one wackjob. If you go to NCI then we live in the same community. i am actually considering going to gildas club on monday 2/13 for the first time but i feel awkward. I had it all cut out and I may not have any cancer. I just spent the entire day today getting new scans from head to toe. Maybe its a good thing the oncologist scared me into getting all those scans and getting more connected and educated. Thats why im considering going to gildas club just to meet some people and learn more.

donna_lee's picture
donna_lee
Posts: 999
Joined: Feb 2009

oAdmittedly, the Onc. was lacking bedside manner when he presented the info he had.  What he neglected to say about any RCC) trial is that you must have an active (as in a known mets.) site that the test will be able to monitor during the trial.  Otherwise it's like the duck hunter shooting into the sky in hopes that a duck passes by.  His statement about it being too long past the surgery was a bit of BS.

That also applies to any drug that goes beyond trial stage.  They don't give it unless they know you have a recurrence from the original Dx, as the side effects could often mask what's happening with the cancer.

Since you are new here, first, do not panic-or your wife either.  Find an Oncologist-preferably one who is a Urologic Oncology specialist whom you trust.

Next, find out about the other people on this site.  Click on their user name and it will take you to their "page," giving the details of Dx, treatment, and follow up, recurrence, drugs used, complications of such, and how long they've been around coaching, sheering and in all ways, being encouraging to those of us here.  Then sit back and come along for the ride of your life...it's a roller coaster.

Hugs,

donna_lee

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

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. 

DAC677's picture
DAC677
Posts: 60
Joined: Feb 2017

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

Dutch1's picture
Dutch1
Posts: 152
Joined: Mar 2014

You're getting some terribly pessimistic guidance from your doc.  My surgeon was like your guy.  My oncologist is much more optimistic.  All of us with kidney cancer have problems and risk recurrence.  You do have to pay attention to the disease.  But, you aren't a goner yet.  I'll add my statistics to the mix:  Stage 4, grade 4 -- and I just passed the 4-year anniversary of my surgery.  Move on to a more suitable oncologists.  I have a local guy, but use more of a specialist hospital for second opinions.  Going straight to Indiana, Anderson, etc. is good also, but can you get to those people on a regular basis? 

Best wishes.  You were right to think that your doc isn't a good fit.

medic1971's picture
medic1971
Posts: 205
Joined: Sep 2015

If you have the opportunity, I would strongly recommend going to MD Anderson, or any other top ranked caner hospital, for a second opinion regardless of what any physician says... 

http://health.usnews.com/best-hospitals/rankings/cancer

DAC677's picture
DAC677
Posts: 60
Joined: Feb 2017

I have an appointment with the Indiana University kidney cancer specialsists on 2/23. Im told they are among the best.

Wonder if anyone else has heard the same or used them?

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

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

DAC677's picture
DAC677
Posts: 60
Joined: Feb 2017

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's picture
todd121
Posts: 1449
Joined: Dec 2012

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

DAC677's picture
DAC677
Posts: 60
Joined: Feb 2017

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.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Is about 4 1/3 inches. It's not the size of a football. A tennis ball maybe.

They probably meant the entire kidney was the size of a football. That's true.

Those guys need to be more clear when they communicate this stuff to patients.

Todd

DAC677's picture
DAC677
Posts: 60
Joined: Feb 2017

I was going to post the pic of it here but I thought maybe that would be in poor taste

I think its interesting because the shape of it totally envelopes the kidney which you cant see till its butterflied open and you see the pink in the middle as its laying next to a ruler. I guess thats a gross pic to carry on your cell phone but for me its like a soldier having a bullet that was removed from him on a chain or necklace.

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