CSN Login
Members Online: 4

Oncology?

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

Hi all, I had an incidental finding of a complex mass on my right kidney, "likely RCC", in early May, while working in OH.  I immediately flew home to Oklahoma thinking I would see an oncologist but was instead advised to see a urologist.   I'm 2 weeks post-op following a radical nephrectomy.  A partial was not an option given the location of the tumor.  The Dr said being that I'm 48 years old, he felt a radical was less threatening than if I were 20 something.  I happen to feel like 48 is young, but whatever Kiss.  Recovery is going good.  At my 1 week post-op appt, Dr told me the RCC was Clear Cell, T1B level 2.  He said I'd have blood work and chest x-rays at next appt, which will be Tuesday the 18th.  My urologist, according to the man that referred me and everything I've read about him, is top notch, specializing in kidney transplants.  He is highly respected and I feel very lucky to be in his care.  My only complaint is that, although his bedside manners are fine and he is certainly nice enough, I don't feel like he gives me enough information in regards to what I can expect from here on out.  I asked him what stage my cancer was and that is when he told me it's a T1B, level 2.  What the heck does that mean?  I never got a straight answer.  He talks to me like I've had cancer before and ought to know.  He tends to be in and out of the room so fast that my questions go unanswered.  Do I need an oncologist?  What stage was my cancer?  And, now that it's been removed, does that mean I'm cancer free?  I googled T1B, and it seems to be stage 1 but, I don't know what level 2 means.  I asked him if he removed lymph nodes for testing and I'm pretty sure he said that he did not.  I thought for sure that would be standard procedure.  And why, if the cancer was in my kidney, am I having chest x-rays at follow up?  Dr said I could return to work in Ohio the first week in July.  That's great!  But not having answers to my questions makes it hard to know if I can expect to be flying back and forth between OH and OK for follow up appts and if so, how often?  A lot of questions, I know.  Greatly appreciate any advise/feedback!!

dhs1963's picture
dhs1963
Posts: 359
Joined: May 2012

Your tumor is stage 1. Furman grade 2.  In general, the lower the stage, the better, and the lower the grade the better.

You are most likely cured.

NewDay's picture
NewDay
Posts: 167
Joined: May 2012

Hi TwinThings,

Sorry you've had to join this club, but glad that, if you had to, you found us.  This is a great group of folks that will be very supportive while you deal with the roller coaster of feelings you are now on.  Rather than go into a long explanation about tumor staging and grade, I will just give you a couple of useful links that explain a lot.  I see your news as good news.  Try not to panic.  I think you need a doctor that is willing to give you more time.

In a nutshell, the explanation of T1b is :

"The tumor is larger than 4 cm but not larger than 7 cm across and is only in the kidney".

That last part is REAL important, meaning if the kidney is out, hopefully, all of the cancer went with it.

The "level 2" means Grade 2.  Grade of renal cell carcinoma (RCC) runs from 1 to 4.  The lower the grade the better.  It indicates how closely the tumor cells resemble normal kidney cells, so you are on the better side of that scale.

 

http://www.cancer.org/cancer/kidneycancer/detailedguide/kidney-cancer-adult-staging

http://www.kidneycancer.org/knowledge/learn/about-kidney-cancer/

 

Just take a breath.  You will get through this.  Know that we are here to help all we can.

Kathy

 

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

Kathy,

Thank you so much for taking time to help me understand this.  I feel better already!  I will use the links you've so kindly provided, to continue to learn as much as I can about clear cell RCC.  I am so thankful my cancer was caught early.  And from what I've read, I feel confident that I am cured.  My mom and dad both died of cancer (exactly 9 months apart) in their early 60's.  Mama's was unclear as to the primary source, as it was found throughout, she received no treatment and died shortly thereafter. Daddy's was colon, he died 5 weeks after diagnosis.  So, I knew it was just a matter of time before I too, would receive my own diagnosis.  I never imagined it would be kidney cancer nor did I think a cure would come so quick and easy.  My parents were uninsured and poor.  They didn't go to the doctor when sick nor did they receive preventative care.  I have read that this particular kidney cancer is genetic.  Makes me wonder if mama's primary tumor was kidney cancer that spread.  I'll never know, but it breaks my heart to think that, if it was, it could have so easily been treated...if only she could have afforded to walk in to the doctor's office rather than waiting till she had to be forcefully taken by ambulance.  All I can do now is make sure cancer doesn't claim my life too.

 

Thanks again for your time,

Sindy 

icemantoo's picture
icemantoo
Posts: 1453
Joined: Jan 2010

Twinthings,

Some doctors are better communicators than others. Write your questions down and have him explain everything.

Second guessing your doctor and his post op follow up is above my pay grade. I am  aware though that a chest xray is standard follow up procedure to determine if yout kidney cancer metasticised as the first place this would show up  is the chest.

As far as seeing an Oncologist first, my opinion would be to get the kidney resolved first unless you had a coplecated case where the initial opinion of the oncologist would be helpfull. Others on this board have honest differences of opinion on this issue.

 

Icemantoo

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

Thanks, icemantoo!  I appreciate the feedback but I'm a little confused.  If my RCC was stage 1, doesn't that, in and of itself, imply it hasn't spread?  And if I am considered cured because the entire tumor was removed with the kidney, then doesn't it stand to reason, it isn't there to spread?  I know, these are questions for my doctor, but I've read many of your posts and you certainly seem knowledgeable. 

dhs1963's picture
dhs1963
Posts: 359
Joined: May 2012

The doctors can not say for sure that there is nothing lurking inside.  Small objects might be missed on the scan.  But, once they got the tumor out, there is no evidence of disease.  That is really good news.  You still need the follow up scans, but odds are, you will be fine.  like better than 9-1 odds.  And Furman grade 2 means the tumor was not that agressive. 

Doctors tend to be concervative. Those of us with advanced cancer want to hear no evidence of disease (NED).  We will not here cured, but we might be.  We will know in 5-10 years.  

You will need to be followed on this for the rest of your life, but that should be a long time. 

 

NewDay's picture
NewDay
Posts: 167
Joined: May 2012

I thought I would try to help with a few more of your questions.

It is true that the fact that your tumor was stage 1 means there was no evidence that it has spread, but that is no guarantee that it won't show up later.  RCC can spread directly to adjacent organs, which yours hasn't.  But it can also spread via the bloodstream or the lymph system.  Unfortunately, there is no test to know if it has and is lying dormant.  It can be there and not manifest as a tumor until years later.  This is why you need to have scans although there is currently no evidence of disease.

The reason you would get chest xrays and scans of the pelvis in addition to the abdomen is that those are common locations for it to spread.  It can actually spread anywhere, including the brain, but more often the lungs, bones, or liver.

I also had assumed that removing lymph nodes were standard procedure, but apparently not.  My surgeon did not and said he only does so if he sees something that makes him suspect it has spread..

You said that yours was clear cell which is the most common type.  You state that you read that it is usually hereditary but that actually is not true.  Only a very small percentage are hereditary, but of course you might be in that small percentage especially considering your family history.

Given the stage and grade of yours, I would be very optimistic, but still be diligent about getting followup scans.

Hope this helps.

 

Kathy

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

Thanks again, Kathy.  Your words are very reassuring.  This is probably stupid on my part, but here goes...what I actually read was that clear cell is a genetic mutation.  I took that to mean the same thing as being hereditary.  After all, aren't genetics and heredity the same thing?  I also read that clear cell is the most aggressive type but several posts I've read on this forum, dispute that.  At any rate, I think it makes good sense to seek the care of an oncologist.  I just thought oncologists were for people who have cancer.  Mine was removed so I technically don't have cancer, right?!  It's sad that I have to rely on sites such as this to answer my questions and learn about my illness but at the same time, I feel so blessed to have found you all.  I kept seeing "NED" as I'd read through some of the posts.  I had no idea what that stood for until today, thanks to this forum. 

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

Thanks for your reply, dhs.  It was most helpful.  I'd been wondering what 'NED' stood for and now I know.  I'm sorry to hear your's is advanced stage.  I cannot imagine how scary that must be for you and your family.  You are very kind to help newbies, like myself, understand this disease.  I really hadn't thought about being followed the rest of my life.  I figured if all was well after 5 years, I'd be done with this and could put it behind me. 

I wish the best for you, and hope "NED" will be your reality.

 

DonMiller's picture
DonMiller
Posts: 92
Joined: Feb 2013

From everything I have read ( which has been entirely too much) your chances of being cured are excellant.  It is great that it was found early and was not what is commonly said to be an "agressive " tumor to start with. Still you need to be monitored and I would consult with an oncologist specializing in kidney cancer.

I believe my urologist is an skilled and effective surgeon but I had a same experience with her as you did after the surgery.  I think generally oncologists are more experienced in not only kidney cancer but in the health of their patients.  My oncologist  changed my surveillance plan generally increasing the frequency of blood tests and increasingly the scope of my scans at somewhat longer intervals.  He spends time with me to answer all my questions and discuss my treatment plan.  I don't want to trash my surgeon although the size of her ego was a bit much........it's just that I feel my Oncologist is well.........a Doctor.

Darron's picture
Darron
Posts: 218
Joined: Jun 2013

I agree with DonMiller. I also had an excellent surgeon. I went to an oncologist "just to be comfortable" with an oncologist just in case I had a recurrence in the future. He immediately picked up an adrenal gland tumor the surgeon missed. I had an MRI on my brain and a bone scan To see if it had spread anywhere else.

I had a much larger tumor, and we knew it had already spread to the adrenal gland we removed. So I was jumped from stage III to stage IV and immediately started discussing treatment options.

It sounus like the advice to find a good kidney oncologist you are comfortable with will bebefit you the most. Take a look at a recent post on depression from MDCinSC. He ( and many others like you) will still have mental healing and needs even if you have No Evidence odd Disease- NED. My current oncologist is a kidney specialist and when I asked him about getting a second opinion, he said please do, but make sure it is a kidney specialist, or don't bother. I would think that applies as well.

Again, doesn't sound like you need it right away, but another set of trained eyes never hurt.

Hope it helps, glad you caught it so early!

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

Thanks for the advice, Darron.  I asked my surgeon if I needed an oncologist and he said no, but what you said makes sense.  I think I'll seek one out before heading back to work...just to be safe.  I feel so petty, worrying like I do about my situation, when I hear from people like you who are certainly in a worse predicament than me.  But, it sounds like you are in good hands and doing all the right things to ensure you get the best care. 

Sindy

Darron's picture
Darron
Posts: 218
Joined: Jun 2013

We have a family friend that referred us to my current oncologist. We were amazed that my urologist was not very willing to refer me to the oncologist we requested. Be your own advocate.

Don't feel petty about the worry. you just had major surgery. Turn what I hear as frustration about what to do next inthe the drive to get it done. Do not rest on the topic into you are satisfied with the answer. I am very lucky and found a great doctor 20 minutes from home. I did drive 2 1/2 hours for a second opinion. It did nothing but reinforce that my doctor was my first choice,but in the big picture, it boosts my confidence in my doctor and the treatment I am receiving.

The friend that referred me just completed her five year scan without disease. She was a phase I complete nefrectomy.

Keep us posted, here is a lot more knowledge on this site that is useful. Seems others is always someone in a similar situation. It helps to hear you are not alone.

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

Thanks DonMiller!  I am looking up Oncology in the OKC area right away.  Hopefully I'll find someone who's caring, compassionate and truly interested in saving lives.  Unfortunately, that's not always the case. 

foxhd's picture
foxhd
Posts: 1856
Joined: Oct 2011

That finding a good oncologist despite what surgeons say, is common advice here. Also, remember that it is your life. Never think back that you coulda, shoulda, woulda. Do it for you and your family. Especially the little one. Think of it this way, "Can you afford the time for meeting an oncologist?" Then do it. Good luck.

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

foxhd, thanks so much for the feedback.  That little one is my precious grandson and I plan on being around to see him grown.  Having said that, it's not so easy getting in to see an oncologist.  I don't have a referral!  I know, that sounds crazy but that's what I've been told.  My surgeon isn't going to refer me because he doesn't think I need one.  So, unless I can get my family doc to refer me, I may be SOL.

foxhd's picture
foxhd
Posts: 1856
Joined: Oct 2011

Don't ask for a referral. Tell them to give you one. You are the boss...And you are right. I also want to live the most to see my 2 granddaughters grow up. They have no dad. I'm their poppy. Best thing I've got going.

AprilandChuck's picture
AprilandChuck
Posts: 95
Joined: Feb 2013

If you have been a patient awhile and have a good relationship your family doctor will have no problem granting a referral.. I say this because we recently had to switch Family Doctors and the new offered a referral if needed..your Family Doc should be as worried about your piece of mind as they are about your physical health..where it sounds like your surgeon.. was not..stories like yours make me very glad we ended up where we did when this all started!. Chucks Urologist/surgeon brought the Medical Oncllogist on board early..so we would know them..this is evidently a normal practice of his..we later found out it's not the normal practice of all..having someone else look should not be a problem for any Doctor..esp if it will give the patient confidence and piece of mind..hope all goes well for you and am really glad you had a great out come from surgery stories like yours make me smile (the successful part and the diagnosis part lol) not the other! Hugggss

Djinnie's picture
Djinnie
Posts: 756
Joined: Apr 2013

Hi twinthings, 

I know this is a very frightening time for you, a cancer diagnosis is very difficult to deal with. The main thing is that they caught your tumour early, and your surgeon has arranged follow up tests so quickly. I had a partial at the end of March, mine was T1b Grade 3. In Europe if the tumour was removed with clear margins(no signs of spreading) the follow up is 6 months later. 

It sounds as if you have a good doctor, maybe not blessed with the best of people skills though. He may be more forthcoming after your X-rays. Your doctor should be able to put your mind at rest after your tests. Make sure you have all your questions ready for your appointment, and ask that he clears up all your concerns. He should not take it personally if you request a referral letter for an Oncologist, I am sure if he was in your shoes he would do the same.

We can only ever consider ourselves to be cancer free, not cured. Doctors can't make that sort of prediction, so it is very important to keep up with your scans, even after five years. I had a recurrence my first op was 10 yrs ago, so I know first hand that we can't be complacent. Look at the scans as a form of preventative medicine.

All the best 

 

Djinnie x

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

Thanks for your thoughts, Djinnie.  I suppose if anyone could offer advice, it'd be you.  Sounds like you've had a decade to learn about RCC, bless your heart!

I will absolutely pay close attention to follow-up care and make certain I get all the necessary scans and tests, even if I have to pay out of pocket, especially after reading your story.  So, thank you for being such an inspiration!

Tomorrow, I will be 1 day shy of three weeks post-op and will be seeing my nephrologist for my 2nd follow-up.  I will ask him again, about the possibility of me seeing an oncologist and hope he will give me a referral.  Time will tell.

You're a couple months further along in the recovery process than am I...please tell me it gets better.  I don't pretend to have had it as bad as you, for mine was radical vs partial (doc told me far bigger incision and harder/longer recovery with partial) but boy do I still have a fair amount of discomfort, especially when sitting straight up, leaning forward and bending over..OUCH! 

 

Sindy

Djinnie's picture
Djinnie
Posts: 756
Joined: Apr 2013

I know what you mean about the discomfort, I felt as if someone had inflated an airbag under my ribcage. I found sitting very unomfortable, I used to have to lean back in a recliner. It will gradually ease up, you may have intermittent bouts of it as it tapers off. I don't have any real problems now, apart from constant digestive noise, my stomach sounds a bit like a drain from time to time. I am hoping that will settle down, it always sounds as if I am hungry.

All the best with your appointment tomorrow(:-)

 

Djinnie x

 

 

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

Airbag under rib cage is a perfect description!  Which is why I feel so much better in a reclined position.  Also, for some reason I have an insatiable hunger for sweets!  It's the strangest thing.  Before my surgery, I certainly enjoyed the occasional sweet but for some reason, since my surgery, I can not get enough.  My doctor told me today that he has had other patients say the same thing.  He explained it by saying the human body functioning on one kidney can't process sugar as well as it does with two kidneys and it's natural to crave what your body can't toerate.  Really?!  That's just weird!!

Anyway, had tests done today.  Still have blood in my urine but he wasn't concerned with it, so I guess I won't worry till he does.  Will be anxioulsy awaiting other results.  As for seeing an oncologist, he told me I will continue my care with him for 1 year, at which time, he will turn me over to an oncologist.  He said an oncologist wouldn't do anything that isn't already being done.  So, I guess I'll wait.

Sindy

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I'm a little late to this, but I got away for the Father's Day weekend!  I took a much needed respite from things.

I understand your concerns.  My own was T1b Fuhrman Grade 3.  As a result, and because of other things too detailed to explain regarding my history with radiation, I am getting bloodwork and chest xrays every 90 days with CT scans every anniversary.  Compared to others here, I am quite lucky; virtualy cured, if not literally by comparison.

According to my reading, the difference regarding followups between grade 2 and grade 3 is the incidence of recurrence. With Grade 2, my reading says you are four times less likely to have recurrence than I. 

That said, that is no reason to sit back and wait til you are symptomatic.  Stay active, stay aggressive, get the oncologist and hold on until you get straight answers.

If your Urologist or Family Physician is uncomfortable with you getting an oncologist's opinion, then there is something wrong with THEM. Do what is right for you.  Enjoy that little one! I have more of those grandbabies than I can count, it seems, and I love every one of them!  I'm astonished my self, but I even have a GREAT grand daughter.  I'mnot sure how that happened! I am far too young for that!

PAX,

Michael

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

Michael, thanks for chiming in! 

Tomorrow will be my second post-op follow up appointment with my nephrologist.  He will be doing blood work and chest x-rays.  I can't decide if I should ask him again whether or not I need an oncologist or TELL him I'd like a referral to an oncologist.  He's already told me I don't need one but I think I WANT one.  I appreciate the fact that my cancer was caught early and that as a result of my radical nephrectomy, I am likely disease free.  Having said that, given my strong family history of cancer and the fact that odds are rarely in my favor, I can't help but think an oncologist who specializes in RCC will be more knowledgeable about the latest advances and may even follow a different path of follow up care.  As ridiculous as this is going to sound, I don't want my neph to think I don't trust his care and opinion.  He's arguably one of the best with patients traveling near and far to see him and I have every faith in him. 

I don't know why I'm so nervous asking him again, but I am.  Unlike you, he's old enough to have ten great grandkids so, maybe he won't remember our prior conversation Wink.

I noticed you mentioned your history with radiation...cancer previous to RCC?  I'm not trying to be nosey but I was under the impression RCC wasn't responsive to chemo and/or radiation.

And finally, what does PAX stand for? 

 

Sindy

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Pax, is a shortened form of Pax vobiscum, latin for "Peace be with you." It is often offered by priests in the Catholic Liturgy.

My radiation has nothing to do with RCC. When I was a child, I was treated with massive doses of radiation for, (are you ready for this?), ringworm on my scalp. Seriously! It was the hottest new medical treatment on the market. I have lots of scarring onmy scalp, made worse by 20+ years in the high desert of New Mexico.

Additionally, my generation played with the fluoroscope machines that were found in shoe stores back then!  Seriously! You would put on new shoes then place your feet under the fluoroscope machine and then look in the window to see if the bones in your feet were being distorted by the shoes. 

Radiation, back in the 50's, was considered a godsend for all kinds of things. It took all the mistakes they made to realize how dangerous it is.

LOL

May as well laugh.  To quote Samuel Beckett, "Nothing's to be done!" Laughing

Michael

Darron's picture
Darron
Posts: 218
Joined: Jun 2013

Not too many of us "good catholic boys" down here in the Bible Belt. Next you're going to tell me you are Italian too.

"...and with your spirit"

-Darron

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I'm Catholic "Light!"  Episcopalian! LOL  Cool  All of the ceremony, none of the guilt! Yeah, even to, sometimes, Latin in the liturgy! 

We are also affectionately referred to as "Whiskey-palians," and the saying that where eer you find four Episcopalians gathered together, you are BOUND to find a fifth! Wink

Michael

Darron's picture
Darron
Posts: 218
Joined: Jun 2013

You do know the difference between a catholic priest and a baptist minister?

The priest will say hi to you in the liquor store on Saturday.

should have posted that on on the funny bonz IV post.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Two elderly ladies were talking.

“At our age, I don’t know what would be worse;
Parkinson”s or Alzheimer”s?" one said.

Her wise friend answered, “Oh I’d rather have
Parkinson’s, definitely Parkinson’s. Better to
spill half my wine than to forget where I keep
the bottle."

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Yes, guys, better on the funnies thread. 

However, at the risk of appearing obtuse, I have to ask Michael to explain the 'pisky' joke - 'BOUND to find a fifth'. 

My only guess so far can't be right.  I live in Scotland, but even where whiskey is drunk, as Eims can confirm, we're talking fourths not fifths in any respectable establishment!  (Actually metrication has really screwed it up - let's have a dram!).

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I'll take it in any form and quantity!

A fifth, at least in old (emphasiszing OLD) Yank parlance, was one fifth of a gallon!

Among our more conservative brethren, us Episcopalians are considered a bit over the top.  Real wine, alcohol at church functions?  Shocking!

When are you pouring? I'll work on updating my passport!

Cool

Michael

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

Oh Michael, after the day I had, I needed a good laugh and, between you and Darron, I certainly enjoyed one! 

 

Thanks to the both of you!!

Sindy

 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network