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New Diagnosis - Meeting with Doctor and Advice Appreciated!

HoneyBeeM
Posts: 5
Joined: Jun 2014

Hello everyone, 

This past Wednesday we learned that my Dad likely has stage 4 kidney cancer. My family is absolutely devastated. My Dad had absolutely no symptoms until he had some arm weakness, which we now know was caused by a 1.5cm brain tumor.

On Wednesday, we had a horrible appointment with a radiation oncologist, in which he basically told us my Dad had six months left to live. He did not show us the scans or explain what types of tumors Dad had, locations, or anything. It was a five minute appointment in which he asked us if we had any questions and said the hospital would contact us to do a biopsy. He said they would then likely start chemo. My family there was either so stunned they couldn't speak...or were crying uncontrollably. Went down in my book as the worst day of my life. My Dad literally believed all hope was lost. 

On Thursday, at the advice of many friends, we sought treatment at Duke University Hospital. We now have an appointment with a radiation oncologist at Duke this coming Tuesday. The doctors at Duke told us that they will treat the brain first, as it is an easier procedure that should remove it completely. They said it is commonly known as Gamma Knife. They will then immediately move to treating the kidney. Already they have been so much better in handling our case (and this is all from phone calls with nurses and doctors there), and we feel so blessed to be going there. My Dad's spirits are up again, and he is determined to fight. 

I discovered this website, oddly enough, by Googling "kidney cancer survivors," and the stories here have encouraged us so much. I've also been reading your comments to get ideas for things we should ask the doctors at Duke on Tuesday. We don't want to talk into another appointment and not know what to say or what to ask. 

We don't have a ton of information at this point, but I'll list what we know. He's not yet been biopsied, so we don't know exactly what type of kidney cancer we are dealing with. The CT scans that he had suggest a 4cm tumor in the right kidney, 6-8 smaller "nodules" in the lungs (doctor's term), and a 1.5cm mass in the brain. The brain tumor was what caused the symptoms that brought us to the doctor this week. 

Does anyone have any suggestions about important questions to ask the doctors at this first appointment? Any ideas about treatments we should ask about? ANY information would be so greatly appreciated! We feel like we are starting from behind and need to run informatio-wise to catch up. Thanks so much in advance!! 

Melissa 

icemantoo's picture
icemantoo
Posts: 1554
Joined: Jan 2010

Melissa,

 

So sorry to hear about your dad. Duke is one of the top medical schools in the country and I do not want to second guess anything they suggest.

One part does not sound right. Four cm tumors are usually too small to cause mets to the brain. It may be that the brain cancer is not related to the Kidney Cancer.

The small nodes in the lung need to be evaluated. Many times small nodes are benign. The % of them being Cancer depends on their size.

 

Obviously the first focus is on the brain Cancer. Once that is resolved Kidney Cancer at 4cm even with nodes to the lung can be sucessfully dealt with although surgey (a nephrectomy) may be in the cards. All of us on this board have had a neph. Mine was 12 years ago.

 

Icemantoo

GSRon's picture
GSRon
Posts: 1253
Joined: Jan 2013

Hi Melissa..  OK, breathe a bit.. and welcome to the place you do not want to be...  Yes your first consult was a jerk.. no make that an ingnorant jerk.  Now 20 years ago, it would of been buy dirt.. today, it is plan your next vacation.  Yes there is that much going on today..!  I am not a doctor, but here we all put our experiences together plus good info and share.  I know others will soon chime in here.

So, first things first.. how is your Dad's health otherwise..?  If his health is good, then skip any biopsy. And what type of tests has he had so far to determine the primary tumor is Kidney Cancer..??  Yes, it sounds like it is Kidney Cancer.. but.  He should of had or needs a CT Scan, with contrast (dye) if possible.  That scan should include the chest abdomen, etc.   They need a good clean picture to be sure what is going on BEFORE surgery.  Not good to find a surprize during surgery.  Generally, Kidney Cancer is slow growing, which is a good reason why the brain Met should be handled first.

Yes get the brain Met handled and Gamma Knife should go well.  Next is the Kidney tumor, unless the scans show other issues to be handled first.  Sometimes people with Mets start treatment to reduce the size of the Mets then have the surgery later.  Plus it also depends on the person's general health.

OK, on questions... it is very important that your Dad is in the right hands..  I can not emphasise how important this is.  The surgeon needs to have a good understanding of Kidney Cancer, which is called RCC, Renal Cell Carcinoma.  At 4 CM, that is a small tumor.. this is a concern that either the scan size is incorrect or, it may indicate one of the lessor common RCC types.  Generally tumors that small do not spread... but yes sometimes they do.  Once the Kidney tumor is removed (they may take the entire Kidney with it) then the pathology report will tell the rest of the story.   So, you want to ask the surgeon what his or her experience is with RCC.  Often you can do a WEB search on their name and get that info.. that may be more comfortable instead of asking the doctor directly.  Ask about the scans, does the tumor appear to be contained in the Kidney..?  If not where has the Cancer extended to..?  If there is Renal Vein Invasion, how do they plan to deal with it..?  Can you meet with a doctor that has Urologic/Oncoligic experience.

Oh yes, and there may be others here that can give you names of knownn RCC experienced doctors in your area.   Try hard not to decide on a doctor because you like them... wrong reason.. regardless of their bed side manner, you want the BEST doctor you can get to.. and hopefully you like that person as well.

There are many good drugs to treat the remaining lung Mets.

Holler back at us when needed or to let us know how your Dad is doing..

Ron

HoneyBeeM
Posts: 5
Joined: Jun 2014

Thanks all for the quick responses! 

icemantoo, that is interesting to hear about the lung nodules. Our general family doctor said something similar to us - that just because there are nodes doesn't automatically mean they are all cancerous. This is definitely something I will ask about at our meeting. I'll also ask about the neph. No one has mentioned that to us yet, but that may just be because we've not yet met with an RCC specialist. 

GSRon, Dad had a full-body CT scan last Wednesday morning. I am not sure if it used contrast dye. He was given yellow fluid to drink about an hour beforehand, and he was also hooked up to an IV during the procedure. Other than this scan, he's had one other CT scan and an MRI of the brain. The doctors wanted a PET scan initially, but the insurance denied it and insisted that he get CT scans first.    

Overall, my Dad's health is quite good. He suffered a very minor heart attack last year, and had a stint put in. Since then, he's been exercising and losing weight. He's probably in better shape now than he's been in quite a long time. He also had no symptoms suggesting anything was wrong until a few weeks ago, and even then it was only a slight numbness in his left arm. 

Thanks so much for the question ideas. I'm taking notes on all of this, and plan to bring a list with me. Please keep them coming! I will hopefully have a more detailed update to provide ya'll with after the appointment on Tuesday. 

The encouraging words and advice are so appreciated! 

GSRon's picture
GSRon
Posts: 1253
Joined: Jan 2013

Glad we can be of help.. you did not say who did the scans.  But since he had an IV then that is the contrast.. this is good...  Scans with contrast (dye) will make any Cancer light up, so that things do not get missed.  Usually they do one scan without the contrast followed by one with the contrast so they can compare the two.   But suggest you take copies of everything to the next appointment, unless that was already done.  Getting another set of eyes on the scans is a good idea.  It sounds like you are all set.. and on the right path. now..!

On the neprectomy, ask what type of procedure they suggest.  Of course the Kidney tumor is small, but the location will basically decide on if a partial is possible.  Although, I would not be concerned if they take the whole Kidney... many of us have only one Kidney.. or less.  Not a big deal.

Also I suggest you make your own history of all the blood tests.  That way you can spot any trends up or down and ask about them.  Sometimes doctors miss things.

And take a note pad, write down all the questions before you get there... and write down the answers.  Too easy to forget something, plus if there are terms used you do not understand you can look them up later.

Good Luck..!

Ron

angec's picture
angec
Posts: 622
Joined: Mar 2012

Hi Melissa, I guess by now  you realize that you and dad can relax a bit.  Meaning that the first doctor you saw has no idea about RCC or the new medicines that are out there now.  RCC can now be managed as a chronic disease, in most cases.  Do you have a copy of the report on hand? From this point forward you will be sure to get a copy of EVERY test your dad takes, this includes blood tests too. You always want a copy of the reports to go over yourself. If you dont' get it from the doctor then get it from the place that did the scans.  Keep a file.  If you do have a copy, what does it say about the nodules, mass etc?  

Is your dad a smoker?  The nodles in the lungs aren't necessarily cancer.  That remains to be seen.  Also, until they take the kidney out they wont' know what type it is and if it is cancer at all.  4 cm. is kind of small for it to spread, it can happen but not too often.  Usually the biopsy is worthless, they just need to go in and take the kidney out.  Because even if they biopsy it, the mass cannot stay in the kidney so it is just a procedure that is going to be a waste, in my opinion. Everyone's opinion is different and you have to go with what sounds good to you.  I wouldn't worry too much.  There are many, many new treatments out there now and this is not a death sentence. They are also working on many immunotherapy drugs that can knock this cancer down to size.  

 

Please let us know when you have more. Duke is a good hospital. Be sure to see the RCC oncologist. Sending hugs to you and your family.

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

Melissa, I was also told I had 6 mos to live. It was reinforced by several different oncologists. That was over 2 1/2 years ago. This morning I weight trained and ran 2 1/2 miles. I was able to do this because I did find another oncologist who knew what to do. I'm glad your father is in better hands now.

I find it amazing how many so-called oncologists have no clue about kidney cancer. A lot of people are alive now because they found on line support and the answers to many questions. Especially about finding the right care. Good luck.

HoneyBeeM
Posts: 5
Joined: Jun 2014

Hello everyone!

 

Sorry for the lack of any type of updates. I can hardly believe it's the end of June now - I honestly don't know where this month went!

So. We now know that Dad has clear cell RCC. The primary tumor is in his left kidney - approx. 4x5cm. His other kidney appears clear on scans. He also has several smaller mets in his lungs, the biggest of which is 3cm. Yesterday (nearly a month later!), he received the radiosurgery zap to the brain. We then met for the first time with our RCC specialist at Duke. We were so impressed with him, and are very hopeful that he will get Dad on a treatment plan that will help fight this cancer.

Anyway, they have decided against operating to take out the tumor in the kidney at this time. The reasoning given for this was that it is rather small, and the doctors see more advantage in getting him started on Sutent ASAP and dealing with the mets in the lungs. They said - hopefully - that after the Sutent has done its job in the lungs, they can then take out whatever remains of the primary tumor in the kidney. There are also several trials which - because of Dad's brain met he doesn't qualify for right now - but that they are hopeful he may qualify for in the coming months. Two that were mentioned in the Cabo trial and a new vaccine immunotherapy using cells from Dad's kidney tumor. Both seem like future events, though, with the Sutent being our first effort.

So that is where we are now. Dad goes in next week to officially begin his treatment on Sutent - 4weeks on/2 weeks off at 50mg.

todd121
Posts: 587
Joined: Dec 2012

Hi HoneyBee,

Sorry I'm just now chiming in. I don't log in as often as I used to.

How in the world do they know that he has clear cell RCC? Did they do a biopsy? It can only be diagnosed with sample cells under a microscope. You didn't mention how they've come to that conclusion. (I'm not questioning the docs, I just don't understand the series of events...)

Is he seeing a medical oncologist now that specializes in RCC? I guess the lung mets are inoperable? How old is your dad and how is his health otherwise? High BP, or any other health problems?

I seem to be quizzing you. Sorry. I was hoping to understand better. I do hope you've discarded the first doctor's God-like, psychic reading of your dad's future. Hang in there. There are several drugs now that can slow it or even stop it in some people and some new drugs waiting approval that are even more effective.

Wish you the best,

Todd

JoanneNH
Posts: 55
Joined: Sep 2013

"a new vaccine immunotherapy using cells from Dad's kidney tumor."

I would love to hear more about that trial.   

HoneyBeeM
Posts: 5
Joined: Jun 2014

Thanks for the comments, Todd. I definitely don't mind the questions at all. I'm very new to this, so not sure what information is going to be useful or important. They performed a biopsy on one of his lung mets and the results told us clear cell RCC. I got the impression from the meeting that the lung mets are inoperable - the majority are very small and some are in difficult to reach places. 

Dad had a heart attack about one year ago, so he's been on meds for that since then, including a BP medicine. His blood pressure reads great now, but that is probably because of the BP meds. Other than the heart attack, he's never really had any medical issues or surgeries. 

We are now seeing an RCC specialist at Duke, and met with him for the first time yesterday. We left the hospital where the original doctor basically dropped the bomb on us. The doctors at Duke have been much more positive - talking in terms of treatment options and ways to effectively fight off/eliminate the disease. 

The only thing that made me nervous yesterday was the decision not to take out the primary tumor right away. I get the logic behind that decision, but still spooks me to know the main bugger is still there. 

 

icemantoo's picture
icemantoo
Posts: 1554
Joined: Jan 2010

He doesn't even know I'm writing this.  I know a lot of you "regulars' on this board know about our neighbor Faye, now 81, who is an 18-year survivor of kidney cancer.  Faye was not feeling well, and had an x-ray of her lungs 18 years ago.  They found a tumor and felt there wss a source somewhere else in her body.  Discovered it was RCC.  She has surgery for the kidney and had it removed.  The doctors felt that if you get rid of the "source" tumor sometimes the lung tumor will disappear.  They followed the lung tumor for some time and lo and behold-it disappeared!!  What good news to share with you HoneyBee!

Galrim's picture
Galrim
Posts: 277
Joined: Apr 2013

Spontaneous regression is known to happen, but cases are very very very far apart. Not writing this to diminish Fayes history, but just to ensure that no one gets their hopes up on being similarly lucky. Its not impossible and as said it does happen, but its extremely rare.

One of the few articles/surveys of the subject:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3685371/

Note that to get enough data they had to include cases up to 40 years back in time, which says a bit about how rare it is.

/G

todd121
Posts: 587
Joined: Dec 2012

I watched a video someone posted here from an expert at the National Institue of Health a few months ago. He's been studying kidney cancer there for over 30 years. He mentioned that they are often leaving small tumors alone and just watching them. The tumor you mentioned is relatively small. Since it's already metastasized and it's small, it probably makes a lot of sense not to put your dad through that surgery. Reducing tumor "load" is one reason to remove it, but it's small. The other is to avoid it metastazising, but it already has. I've also heard some theories that secondary tumors grow faster after the primary is removed for some reason. I'm not sure if they have data to support that or not, but that could be a factor.

What logic did they give you?

The other issue is that you have to avoid the anti-RCC drugs before, during and after the surgery because they interfere with healing and can cause other issues that may make the surgery more dangerous. By avoiding the surgery, he can start the medication earlier.

It sounds like you have really good doctors. I'd trust them. If something sounds funny, a second opinion can never hurt. You might have to travel to get it. RCC experts aren't all over the place.

Wishing you and your dad the best.

Todd

HoneyBeeM
Posts: 5
Joined: Jun 2014

Thanks for the comments, everyone!

JoanneNH - I am not sure what the name of the trial is regarding the vaccination. I will ask the next time we are up at Duke for the particular name. It was literally the first thing mentioned to us at the meeting with Dad's doctor. It sounded very interesting at the time, but we didn't spend terribly long discussing it, as it was ultimately decided that we would start targeted therapy immediately (and thus won't have any kidney tumor cells to use from removal). 

Icemantoo - That is amazing to hear about Faye! 18 years is certainly a miracle! 

Todd, the logic of the doctors is basically what you guessed at yourself. Since the primary tumor is relatively small compared to what they usually see and is not itself causing Dad any painful symptoms, the doc believed it would be more beneficial to begin the "whole body" treatment that targets the lung mets and gets the met growth under control. He said that Sutent is often quite effective with lung mets, and should at the very least stabilize the kidney tumor. I believe his goal is to shrink/eliminate the lung mets as much as possible with Sutent, and then go in and remove the kidney tumor and whatever is left of the lung mets after Sutent has done its job. 

I guess our next big step will be seeing how Dad responds to the Sutent. Dad is growing pretty restless - he's always been a hard-worker and is not particularly enjoying the extended time off from work. He is hoping his side effects are manageable enough to enable him to return to work in some capacity soon. We are really praying that this is the case for him! 

a_oaklee
Posts: 167
Joined: Nov 2013

Hi HoneyBee.  I'm sorry I'm so late to comment on your post.  Your father's situation is a bit similar to my husbands.  My husband was also Stage 4 but his mets were to bone.  The oncologists thought it best to start him on targeted therapy to try to get some control of the mets before they would operate on the primary kidney tumor.  My research thus far has shown that this is a frequent approach for patients who are Stage 4.  I actually lurked on this site for an entire year because I was so depressed to not find anyone else who was being treated the way we were.  On this site, people always say "everyone" has surgery to remove their kidney tumor, but that is not  a correct statement.  Some Stage 4 patients do not have their tumor removed, OR they may have it removed after they show PROGRESS on some type of therapy. 

The questions that I think you should ask are:  What are they considering as progress?  How much shrinkage before they will operate?  At what intervals will scans be done to assess whether or not the drug is working?

One of our doctors said that kidney cancer is not one of the cancers that if the primary tumor is removed then the mets will grow more.  Some cancers do that, but we were told RCC is not one of them.  We were also told that the less tumor burden a person has the better the drugs will work.  Because of that, we really wanted to get the tumor removed ASAP. 

In our case we needed to go to a different medical center in order to get the surgery done.  Whether or not surgery is an option is determined by the tumor board (group of doctors) at the medical center.  The first medical center we went to was quite negative and really didn't care what we wanted.  We were overruled.  We found another medical center that was willing to do the surgery.  In my husbands case, the mets were responding very well to treatment, but the primary tumor grew into the vena cava.  The scans did not show the growth of the thrombus into the IVC.  It showed up on an MRI.  The tumor size was 5 cm.  Surgery was one year after diagnosis, and it was done about a year and a half ago.  He is doing pretty well, and just has some side effects from the drugs.  Mainly fatigue.

There is hope for your dad.  Ask the docs all the questions you can think of.  And if you have problems with a doctor or with a facility, search for the type of care that you want.

You also might want to join Smart Patients. 

Annie

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

Hi Melissa,

I'm sorry you have need to be here, but welcome.

I wanted to let you know that there is a member at SmartPatients.com that has not had his primary removed and has been on Sutent for 7 years and is doing well.  I recommend that you join there also (not instead of).  There are many more Stage IV patients there that have experience with Sutent.

Kathy

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