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All you veterans!

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

My first follow up is tomorrow at 10:00.  We will be discussing pathology and follow up cycles, etc.

To refresh your memories, my path was as follows:

T1b Nx Mx, Lower pole, right 4.5 cm, CCRCC, Fuhrman grade G-3.  Proposed follow up is every 6 months with a CT on the 1 year anniversary, and each anniversary thereafter.

My question for you old hands is:

What is the question you wish you had asked that you didn't?

What is the one most important question I SHOULD be asking?

With the Fuhrman G-3, should I broach the subject of a medical oncologist?

I'll be checking in from time to time between now and morning.  Any insight or advice would be appreciated!

Tally Ho! Cool

Michael

focused
Posts: 7
Joined: Jun 2013

I have been scheduled to have my entire kidney removed on6-25-13. This is all new stuff to me, but good luck with your follow up.

 

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

Tough admission standards to a club you don't want to join, eh?

I am sorry for your pending surgery, but I welcome you to the most positive group of survivors I've ever run across!  There are quite a few of us who have paid the admission fees and cling tightly to each other as close knit friends determined to weather this awful storm.  Ther are lots of open minds, hearts, and welcoming handshakes as your trip gets underway.

Questions? This is an important place for them. We have tons of success stories to help build your confidence.  Thatis the first andmost important element in this, your confidence.

You will come through this.  I am sure!  Talk to the whole damn family and realize there is no wrong question to ask.

I greet you and wish you nothing but the best of all experiences with this and a speedy recovery from your surgery! 

Peace!

Michael

focused
Posts: 7
Joined: Jun 2013

Thank you for the reply. I am a 56 yr old married male also in SC. Have two new grand children. Hope to see them grow up some. Have managed to be fairly positive so far, they found it by accident so I guess that is a good thing. Hope to talk to you again on the flip side.

focused

foxhd's picture
foxhd
Posts: 2056
Joined: Oct 2011

You could ask a lot of questions. Do you need to?  See what your doctor has to tell you. Unless it is critical to make some decision on the spot, just listen. You will be having further follow ups. Decisions to issues can be made by then. So, ask easy questions about your plan of care. No need to challenge his protocol. Think about what he/she tells you. You may feel very comfortable with plan. You will probably be going back in a month anyway. Your questions will have changed and evolved by then.

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

Thanks Fox!

 

icemantoo's picture
icemantoo
Posts: 1653
Joined: Jan 2010

Personally I think our forum posts should be required reading as part of the training of Kidney Cancer surgeons. I think they are too caught up in technical diagnosis and surgical technique.

 

 

Icemantoo

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

LOL  Like an Owner's Guide?

garym's picture
garym
Posts: 1651
Joined: Nov 2009

"Former" Owners Guide, although you did have to pay to get ride of it.

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

...for waiting a full year for the first CT scan (unless I misread that part). with a grade 3. I would ask for the detailed reasoning behind that decision, and also ask for an oncologists opinion on the mattter if your urologist hasnt already done so.

/G

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

Good advice Galrim!

It has certainly been quite an educational experience since March when I first got the news.  Makes the trauma of my PhD pale by comparison!Embarassed 

Thank you all.  Perhaps I do tend to overanalyze, but it comes with the territory of being an educator.

Michael

dhs1963's picture
dhs1963
Posts: 393
Joined: May 2012

First,  since Adjuvant theropy has not proven sucessful in RCC, there is limited value in seeing a medical oncologist.  If you do, I would recomment finding one with expertese in RCC...it behaves differently than some other cancers.

Second, I would push for a CT scan no later than 6 months, and have it be full torso (including chest).  That is because I had a met on my lung that was  seen on CT scan at 6 months.  The Dr's think it may have be present at diagnosis if a chest ct was done.

 

Darron's picture
Darron
Posts: 242
Joined: Jun 2013

It sounds like you don't have an oncologist. I would definitely find a RCC oncologist and meet as soon as possible. I had a radical nefrectomy in October and my urologist told me he "got it all wih clean borders". His recommendation was to see an oncologist in case it ever came back, that way i would be comfortable with an oncologist Vs. finding one when I was dealing wih a recurrence.

The oncologist reviewed my initial scaI and noticed another tumor in my remaining adrenal gland. A 2nd set of eyes never hurt anyone. i like the previous comment about listening, but don't be shy. It is your life you are asking about. There are no dumb questions. 

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Darron,

While I am sorry our paths have come together thanks to RCC, it is nice to meet you anyway.  I can tell by your posts that you will fit right in around here so pull up a chair and stick around for awhile, hopefully the Sutent will continue to work and a true cure will be found in the not too distant future.  Welcome aboard.

Did I mention cancer sucks,

Gary

garym's picture
garym
Posts: 1651
Joined: Nov 2009

oops

Darron's picture
Darron
Posts: 242
Joined: Jun 2013

Thanks for the welcome. Doc seems to thinks it is the Nivolumab that is having the impact. My 6 week scan showed about a 10% growth. 12 week scan showed 30% decrease. The delayed response is more consistent with an immunity response vs. a response from Sutent. Next scan is June 6, so we are praying heavily for a continued response. I was reading the phase I results this week and a good majority of Nivo responses have been durable. only a small length of time for data (only a year) but hey I will take what positives I can get.

The Nivolumab is much less difficult than the 50 mg of Sutent.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

There are several here having great success with both, separately and together, very happy it is working for you too!

DonMiller's picture
DonMiller
Posts: 101
Joined: Feb 2013

Hi Michael

Great Pathology report.  From everything I have read your chance of recurrent desease is quite small.  I  unfortunatly had a much larger and more advanced Grade 3 tumor. I believe my urologist is an excellent surgeon, but I am not convinced he is an excellent Doctor.  I met with an oncologist and am now being monitored by him.  I feel he is much more knowlegable about my cancer and it's interaction with other health issues.   

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

You're undoubtedly right, Don, it's horses for courses in this game and you don't look to an oncologist to do your surgery!

AprilandChuck's picture
AprilandChuck
Posts: 104
Joined: Feb 2013

I don't understand why.. More Urrologist/ Urological Oncologists.. do not bring a Medical Oncologist in early...it makes sense esp in RCC patients...since RCC has so many subtypes and has proven so diffucult to treat....again I am thankful for where we ended up... and feel very blessed that Chucks wonderful Urological Oncologist... brought Medical Oncologists into Chucks case prior to surgery...and was willing to work with them.. to do whats best for Chuck.. I have advised everyone I see who has MRCC or even RCC to consult with both types of Oncologist.. our theory is the more eyes the better...and I think a lot of times.. a patient is better informed by seeing both...Hugggss..

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

Okay,

While I am reserving some options for later (oncologist etc), the plan is simply:

Follow up and Chest X-ray every three months with CT every year til further notice and full bloodwork every time they see me.

Fewer CTs is as a result of some massive radiation dosages I had as a child as a treatment for (of all things) ringworm on my scalp and because I used to play with fluoroscope machines in shoe shops back in the late 40's and early 50's.  The logic is they want to avoid giving me leukemia.  LOL I concur, for now.

Her estimates were five year cancer free at about 68%  Ten year at about 40%

She also says that I still have a decent chance at being shot by a jealous husband at the age of 93! Cool  I hope they come up with something more effective than little blue pills for that to happen!

Outta here for now!

PAX Y'all!  Michael

 

garym's picture
garym
Posts: 1651
Joined: Nov 2009

You've got what, 27 years to play around before you get caught...I think the jealous wife will get you first LOL.

Seriously though, don't pay too much attention to the odds, as you know things are changing rapidly with RCC, I'd say pretty good report overall.  No worries!

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

I'm a survivor!   BTW, I'm hiding the guns! 

As long as I know the score,I can deal with anything.

Michael!

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

Michael, why on earth were you subjected to radiation for ringworm, instead of just an antifungal cream?

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

And they thought radiation was a panacea for all things.  The Doc literally cooked my scalp.  There is a whole segment of us they are following here! It was the "newest treatment on the market," at the time.  I had open running sores, total hair loss for nearly six months. When it came back it was extremely fine laced with white.  That was second grade.  I had to grow up to be a big boy! LOL 

I had to fight everyday at school! Undecided Kids can be very cruel to what they don't understand.

 

Michael

 

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

Well, I suppose it was 'character-building' and that, along with your child-bride, have made you better equipped to deal with 'the gift of cancer'.  

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

There is something to be said for "robbing the cradle."  Wink

 

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

...have 1 kidney and a 10 year younger spouse. I can only concur to that.

/G

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

Loving it!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

It was the latest and greatest since leaches and bloodletting

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

I remember it well!

Yell

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