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New renal cell carcinoma dx

RandaLeigh's picture
RandaLeigh
Posts: 14
Joined: Mar 2014

Hey everyone. My renal mass was found incidentally by ct due to other issues. My doctor did not confirm a cancer diagnosis until after I had a left partial nephrectomy for a 2 cm mass. Pathology reports  show renal cell carcinoma. This is fever scary to me. I'm a 31 year old healthy mom of two. I'm still in shock really at my diagnosis. Can anyone shed any insight on what the course of treatment or the road ahead will hold for me? Thanks in advance.

todd121
Posts: 612
Joined: Dec 2012

Sorry you've found yourself joining us. Can you share a more detailed reading of your pathology report? There should be staging and information about how agressive the tumor is in the pathology report. It would read something like T1NX MX Grade 2.

Usually a tumor as small as yours (2 cm is pretty small), is Stage 1. The cure rate for nephrectomy for most Stage 1 tumors is over 90%, but you need to also look at your tumor grade and other information on your pathology report. The tumor grade has been shown to be an independent indicator of prognosis (somebody, if I'm wrong, please speak up).

Did the doctor give you a prognosis?

If it were me, and even with a small tumor like this, I'd find a good medical oncologist for a follow up. Ideally they'd have some RCC experience or if someone that knows a lot about RCC is nearby, I'd choose them and get a followup appointment. Definitely still do your follow ups even if you're given a great prognosis.

Urologic oncologists are NOT medical oncologists. It took me awhile to get that. Urologic oncologists are urologists that are surgeons who specialize in removing (surgically) genitourinary tumors. Medical oncologists are specialists that normally have studied internal medicine or hematology and then have gone on to study and treat systemic cancer. Your urologist will probably want to follow you. However, I wouldn't do that unless I was low risk and there was nobody else better qualified to do it.

You're most likely in one of the better categories for having what we have. So welcome to the club. Sorry you had to go through this.

Wishing you the best,

Todd

icemantoo's picture
icemantoo
Posts: 1596
Joined: Jan 2010

Randa,

 

At 2 cm barring the unforseen you will be followed ip with regular scans and hopefully no treatment for the rest of your life. How long is that?

I am a young 70. Faye across the street is 83 and had her Neph at 64. With such an early start I would not be surprised if you were a 50 year survivor although I am scheduled to check out before that day.

 

Icemantoo

RandaLeigh's picture
RandaLeigh
Posts: 14
Joined: Mar 2014

Thanks for the replies. I follow up with my urologist on Friday. The only report I got was via phone call that stated the tumor was a grade 1 renal cell carcinoma. I have read so much about recurrence and that is  what bothers me. I feel that this was caught very early but will find out the rest on Friday. 

cubsfan9
Posts: 43
Joined: Oct 2013

Good Morning!

Sorry you have had to get this news.  However, 2 cm and grade 1 sound "good" and you will likely not need any further treatment.  You will, of course, learn more on Friday.  It will be important to follow up with regular CT scans to make sure there is no spread down the road because, as you have already read, kidney cancer can come back and mestastasize.  We will pray that yours does not.  Depending on what your doctor tells you you will likely need those scans every 6 months or perhaps once a year.  As was suggested earlier, an oncologist is the best one to guide you going forward.

If it should come back you should know that there are several treatments that are quite effective and allow kidney cancer to be treated as a 'chronic disease'.  Be careful about what you read--there is a lot of outdated information in cyberspace!  A cancer diagnosis is beyond scary!!  There are good people on this board who will gladly answer questions and provide lots of encoragement.  Looking forward to hearing your GOOD report on Friday:)

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

SO, you had a tumor that was T1a, grade 1.  If you have to have cancer, that is what you want.  97-98 % with that are cured by the nephrectomy.  The CT scans will make sure you are not in the other 2-3%. 

What you have is a small non-agressive tumor.  This should have minimal long term impact....

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

Regarding....."Urologic oncologists are NOT medical oncologists. It took me awhile to get that. Urologic oncologists are urologists that are surgeons who specialize in removing (surgically) genitourinary tumors. Medical oncologists are specialists that normally have studied internal medicine or hematology and then have gone on to study and treat systemic cancer. Your urologist will probably want to follow you. However, I wouldn't do that unless I was low risk and there was nobody else better qualified to do it."

Having just gotten through what is happening to this new T1a stage 1, I'm still perplexed by the above statement. It still knocks me back into a corner. Went and told my family Doc to get me an Oncologist who deals with RCC. Went to see one....guy said "sorry we can't do anything for you the urologist can't do as you don't have the cancer anymore, it was cut out, the 6 month follow ups are all you do now. So your Urologist is just fine for your case"

Am I missing something here. What do I need an Oncologist for when scans are the only thing on the agenda (hopefully). I can see the need if something shows up but until then ? I'm still trying to get this.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

JK, maybe I can help clarify it a bit..  I am assuming you have Clear Cell RCC.  Clear Cell, is named that for a reason.  If you had Mets show up, someone not familiar with ccRCC could easliy miss them, depending on a few things, most important is the type of scans..!  We have had people come here and their unknowing general Oncologist or Urologist did not order up the corect scan.. and bingo..!  The poor person goes on their happy way until they get a more serious issue.  I am not trying to scare you, but the term "scan" is sort of generic.  So, getting the correct scans is very important.  Then there is the skill of the person reading the scan.  If that person is not familiar with ccRCC the same thing can and has happened, Mets get missed.   Getting the proper expertise gives you the best chances, should there be any Mets.   Maybe someone else can state it better than I...  

All that said, looks like your Pathology is darn good.. and most likely you will be Cancer free forever.  BUT, RCC is a sneaky Cancer.. and it can show up many years down the road.  This is why the follow ups are so important.  Perhaps due to your great Pathology report, some Oncologists do not want (or need) another patient right now.. but you may decide to try again.. your call...

Good Luck..

Ron

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

Next Doc visit will attempt to ask him to refer me to my list of Oncologists that I will research....Last thing I want is some apprentice scan analyst looking at my image and missing something, and 1 year later get a different story. Not to mention the Urologist maybe going on his 5 year old manual on how to treat RCC followups with a yearly XRay to the chest. Its hard guessing who's good who's not and dumping the surgeon who just worked on you.

Srashedb
Posts: 200
Joined: Dec 2013

my husband had a urologist/surgeon and now sees a urologist/oncologist; the latter does not do surgeries, only deals with urologic cancers.

we were told that renal oncologists would be a very small medical practice. 

Am I missing something?

Sarah

todd121
Posts: 612
Joined: Dec 2012

It's true that there aren't many. It is a small specialty, because it's a rarer cancer type. But there are medical oncologists who specialise in this. As I recall you live in the same area I do in Southern California? There's Dr. Pal at City of Hope, Dr. Figlin at Cedars Sinai, and Dr. Quinn at USC, just to name a few.

A regular medical oncologist will see at most a few cases of kidney cancer a year (some only see a handful in a career, depending on what types of cancers they specialize in). Dr. Figlin told me recently at one of his talks that he sees 20 patients a week with kidney cancer.

Urologists are not usually oncologists. Urologists are usually surgeons who have specialized in genitourinary surgery. When you see a specialty of "urologic oncologist", these are also usually surgeons. Once the cancer spreads outside of the kidney or genitourinary tract, they don't treat it. They refer you to a medical oncologist, who's primary specialty is usually someone that studied internal medicine, and then went on to study hematology and oncology (studying and treating cancer with chemotherapy). Urologic oncologists do surgery, not chemotherapy or even treat metastatic cancer.

The best choice for us following surgery is to be followed by a medical oncologist who is a specialist in RCC (there aren't a lot of them). They know where the cancer is likely to spread, what kinds of tests to order to look for it, and what it looks like when it spreads, and how to treat it when it does spread.

The next best choice for us following surgery is a medical oncologist with some experience in RCC, or willing to read up on it and study up on it (or call experts on it).

You can be followed by a urologic oncologist if you wish, but they will most likely just give you the minimum standard of care, which is a chest X-ray and a CT of the abdomen and pelvis every 6 months for 2 years, then annually to 5 years.

If I had a more rare type of RCC, or a more agressive grade like 3/4, or had a large tumor putting me in Stage 2 or 3, I'd want to be followed by someone who really knows RCC, if at all possible. For me,  I had Stage 3a and Grade 3. I decided to drive an extra hour to the cancer center where an RCC specialist practices. If I had been Stage 1 grade 1, I probably would have gone with a local medical oncologist and skipped the long drive as long as I was NED.

I hope I'm not confusing anyone. The names of these specialities is very confusing. I agree. I particularly despise the term "urologic oncologist". I think it's deceiving.

Todd

 

Srashedb
Posts: 200
Joined: Dec 2013

Todd:

we actually live in Northern California although we have a son in Southern CA so travel there is not a problem.

i planned on attending the conference with Dr. Figlin in February but the docs here changed my husband's scan schedules to the 21st and his appointment to the 24th. As it turned out, our second grandchild was born that day so good scans and new baby on the same day was great!

at UCSF, we had a urologist surgeon do the nephrectomy and now a urologist/oncologist. They work together so the communication was great. The surgeon read the path report and had a different take than the oncologist.

i contacted Dr. Figlin's office about the vaccine trial he is doing with stage 4 renal cancer but unfortunately, he is only working with patients before the nephrectomy.

If, at some point, his scans show growth, we would definitely get consultations in southern ca. We met with a Ucla oncologist last summre.

Sarah

todd121
Posts: 612
Joined: Dec 2012

Hi Sarah,

You had mentioned before that you're in SF. I think I got confused somehow.

I don't know what a urologist/oncologist that doesn't do surgery is. I've never heard of that. My urologist oncologist was a surgeon. Is your husband's urologist/oncologist a "medical" oncologist? These guys normally are MD's who studied internal medicine, followed by hematology, followed by oncology. They are not normally "urologists". Urology is a surgical specialty.

Perhaps your husband's urologist/oncologist is a medical oncologist specializing in cancers of the genitouinary tract? I've never heard of that. Or perhaps he/she went a different route altogether and was a urologist first, and then did an oncology fellowship? You might ask if he/she treats metastatic cancer using chemo/radiation and other treatments and manages the care of patients with metastatic disease. I'd be curious to know what's going on. Because so far in our discussions here on the board this past 18 months, I've never heard of a medical oncologist that called themselves a urologist/oncologist.

That's interesting about Dr. Figlin's trial. I didn't know they had many Stage 4 patients that had never had a nephrectomy. How does that happen? Are they only looking at patients that were caught late after it had spread? Or only those that couldn't have the nephrectomy for some reason? It seems like they almost always do a nephrectomy.

I don't know the names of specialists at UCLA. Dr. Figlin came from there as did Dr. Pal. I know there are still some good specialists there that know RCC.

At that last patient conference, I heard Dr. Quinn from USC speak. I really liked him. If I ever needed another opinion, that's where I would go. Dr. Figlin was Dr. Pal's mentor. I've always kept in the back of my mind the idea that another opinion outside of those two might be a good idea, since they studied together.

Best wishes to you and your husband. And congrats on the grandbaby!

Todd

Srashedb
Posts: 200
Joined: Dec 2013

Todd:

my husband's doctor is an oncologist with genounitary specialty; I was using terminology incorrectly. The surgeon/urology is in the same office.

The trial with the vaccine that Dr. Figlin is currently involved with seeks newly-diagnosed stage 4 kidney cancer before their nephrectomy. The reason is he wants the kidney freshly removed so the vaccine can be made.

Where does or did your cousin practice? the oncologist is at UCSF and his name is Chuck Ryan.

we went to UCLA last summer to get a consultation and he was a urologist but my husband wanted the spinal surgery done first because he was terrified of a fracture. Most of the opinions we got concurred with that except, interestingly, the surgeon who did the spinal.

he is on the 3-month plan until September (a year post nephrectomy) and, IF, the scans are good, it will be every 4 months.

thanks for the congrats on the new granddaughter; we're having a grandson this summer at City of Hope. My son feels great about the place for his wife who might have delivery issues from a botched spinal surgery when she was 12.

it is great that you are letting people know how important it is to have experienced oncologists. The first, head of oncology department where we live had NO experience with kidney cancer but it didn't stop him from giving an opinion based on one MRI that it would be unusual to make it a year and to just hope for Christmas. I sent the MRI to Mayo for setting up consultation and they called back asking where the rest of the tests were because it was impossible to say much with just that one MRI.

Ok, then, we're out of the first oncologists' office; I didn't like him since he pressured me to get a particular treatment for breast cancer (22 years ago) and instead of wishing me well when I wanted to get a second opinion, he actually said "hope you don't regret it; you don't have enough time for another opinion"

Sarah

Darron's picture
Darron
Posts: 224
Joined: Jun 2013

I am one of those people who had their urologist say "he got it all". I was not stage 1 grade , I was stage 3 (according to him).

At the urging of a friend, I went to an RCC oncology specialist. He immediately ordered a chest and abdominal CT. My urologist had relied on a chest x-Ray. Not only did he see mets to my lungs, he found a tumor in my remaining adrenal gland that the urologist never saw. I was immediately stage 4

I think being stage 1, the odds of something like that for you are extremely small, but having the CT scans (get scans) reviewed by someone who knows more what to look for is the goal.

if you ever do have a recurrence, the urologist will refer you to an oncologist for treatment. To me it makes sense to get Comfortable with that doctor just in case there is a recurrence. they are just more specifically trained on what to look for In your body. Do make sure that they are a RCC specialist, not just a general oncology doctor. We are very special in our disease.

you will be fine, be at peace, but do not let your guard down.

 

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

I was initially diagnosed T1b Stage 1, grade 4 with sacomitoid differentiation.  Once they saw the latter, a RCC specialist would have ordered a chest CT (if it had not been done), and gone on a 3 month protocol.  instead, my urologist (not even urologic oncologist) left it at the chest x-ray...with followup in six months.  My six month review was at another facility (NIH), where they did CT...and found a 1.5 cm mass in my lung, with was a (thankfully) solitary met.   We do not know if the tumor was present at diagnosis, because a chest xray is not as good as a ct scan.  It is that simple.  I may have had metastaic disease, or the met may have showed up later. 

With that said, at NIH, I have been told the reason why it goes from T1a to T1b at 4 cm is that small tumors rairly if ever metastisize.  In the familial study at NIH (which I was part of), they will not operate on a tumor less than 3 cm....non-familial is different.  (In familial, you can expect more tumors in the kidney, and you want to keep as much nephretic tissue as possible). 

With all of this scary writing, you have a small, non-agressive tumor.  The only followup should be scans, at 3-6 months.  I would insist on a chest CT, though, rather than an xray.

 

foxhd's picture
foxhd
Posts: 1952
Joined: Oct 2011

This is exactly what this forum is for. Clarification of supposedly "minor" issues. I wish I had been here when first diagnosed. Urologist who removed my tumor said Stage 3 and he got it all. He did refer me to a local oncologist. But in 6 months I was advanced stage 4 with poor prognosis. How did this happen? Easy answer. They were not qualified to follow my case. It almost cost me my life. Still may, but my outlook is now very good. I'm fortunate that it wasn't too late. I am here because I am a patient of someone who knows what is going on.

Look at it from this angle. 1. diagnosed with kidney cancer. 2. nephrectomy. 3. ALL internet information said poor survival. 4. told there was NOTHING they could do. 5.Confirmed by other oncologists from 3 other facilities. 6 months to live.....boy did that suck.

 I gave it another shot. I found an immunologist oncologist specializing in melanoma and kidney cancer. And here I am. 2 years beyond my expected  expiration date. I am fit. I am strong.  I did my weight training this morning followed by a 2 mile jog. I have limited evidence of disease and it is stable. All because I got lucky and found someone much more qualified and knowledgable. None of my previous doctors were stupid. I doubt all their patients die. They just cannot know everything. Kidney cancer is not their daily job. That is why there are specialists. When I think of it, I realize that if any of my previous doctors had my cancer, I would bet the farm that they would find a specialist for themselves. And not one of them would feel they are betraying their office partners.

Every day I see commercials promoting the cancer centers of several hospitals. I get shivers thinking people get their care there. One size does not fit all. As health care consumers, we need to learn how to shop around. For those who join this site early in their battle, their odds improve rapidly. Knowledge is power. Listen to the voices of experience. I think most of us now see different oncologists than the one we started out with.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

I just read an article that clearly stated that (Ovarian) Cancer patients that go to a "better" doctor/hospital live an average of 1 year longer.  Now this was for Ovarian Cancer, but I would bet this applies to RCC as well, just the time period may be longer.? (wishful thinking..?).   I am amazed at the blase' attitude we see in some of the patients at times.  This IS a life or death matter... ouch, hate to put it in that context.. but...

Ron 

DSFrey's picture
DSFrey
Posts: 57
Joined: Jan 2014

My tumor was pT1a grade 2, and my urologist just has me scheduled for an abdominal CT in a few months for a baseline scan. He made no mention of chest CT or x-ray. Then again he did get a chest CT at the time the tumor was found. So maybe I don't need a chest scan yet?

RandaLeigh's picture
RandaLeigh
Posts: 14
Joined: Mar 2014

Should I be followed by an oncologist since my mass  was a grade 1? I see my urologist on Friday and I want to be as educated as I can be. Does renal cancer ever reoccur after partial  nephrectomy for grade 1 RCC? Any questions I should ask my urologist specifically? 

DSFrey's picture
DSFrey
Posts: 57
Joined: Jan 2014

Yes it does but very rarely for cases like ours when the tumor was pT1a. I've seen various articles on the internet that contradict one another as to if the grade influenced the possibility of recurrence, but even if it does still its not typically going to change the likelyhood significantly.

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

The difference between grade 1, 2, and 3 is not much in agressiveniss on a small tumor.  Recurance varies from 2-4%.  Go to grade 4, or with sarcomitoid differentiation, and you may bounce to well over 10%.

 

It matters in determining a lot of things.

 

icemantoo's picture
icemantoo
Posts: 1596
Joined: Jan 2010

Randa,

 

The consensous on this board is that you have a follow up consultation with an Oncologist . While that may not be my opinion you have an additional layer of concern being that you got RCC way younger than usual for getting RCC. Rccc is a rare Cancer only being about 3 % of all cancers (with a good sprinkling of those 3% on this board). I suspect at 31 years old you are in the youngest 3% of  rcc club members.

When all is said and done see about the availability of getting a referral to an Oncologist although I suspect you will do just as well either way.

 

Icemantoo

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Keep in mind NO ONE is 100% Cancer free...  Many are in an NED or NEVD status.. (No Evidence of Disease or No Visible Evidence of Disease).  In your case I suspect most experts (not me) would say you are like 95 to 98% in the clear forever.  It is that last few percentage points that is the issue.  Kidney Cancer is sneaky... yes you most likely are in the clear.. the odds are in your favor... but still not 100%.  So in the end it is your decision...  At least make an informed decision based on as much fact as you can gather... try not to act on emotion.. easy to say, hard to do...

Good Luck..

Ron

texMD
Posts: 13
Joined: Jun 2013

My wife too was 31 when she was diagnosed; but unfortunately the tumor had extended into the lymph nodes by that point.  Since that time, I have come to find a few others diagnosed at such a young age.  It truly is baffling.  As a physician, it bothers me that there's confusion on the board about the difference between urologists and oncologists -- physicians as a group need to do a better job of educating our patients and referring them appropriately when needed.  My personal opinion is that any unusual presentation/unusual cancer/unusual pathology should best be handled by a large academic cancer hospital with physicians who regularly interact, particpate in tumor boards, run clinical trials, etc.  However, this is not to discount the excellent care that can be had with private practice groups treating cancer in the community. Ultimately, the best thing is to have an educated patient who isn't afraid to ask questions of the physician, ie, "Would a CT scan be better than a Chest x ray?", "I'm really concerned about the cancer spreading, should I see an oncologist to make sure we order the right blood work and scans?"  In our experience, we waited until the scans showed progression until we met with the oncologist even though there was lymph node involvement at the time of the nephrectomy/lymphadenectomy.  But we knew the literature, and we knew the oncologist and urologist were communicating and knew exactly what tests were to be ordered and what would prompt a referral.

RandaLeigh's picture
RandaLeigh
Posts: 14
Joined: Mar 2014

Thanks everyone for all the replies. I truly appreciate it. As I've said I see my urologist tomorrow morning to get my full path report. I will post the full results when I get them. I have been overwhelmed with so much negativity about this disease on the Internet. So glad I found this site with all you folks And so much positivity! Hugs and prayers to each one of you as we all fight this battle. :)

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