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Question about timeline for nephrectomy

UpAt5am
Posts: 3
Joined: Mar 2013

Hello, first-time poster here.  My 66-year-old dad received CT scan results last Thursday: a 14 or 19 cm mass on his left kidney (my parents remember the information differently).  His primary suggested waiting until this coming Thursday for his existing appointment with a visiting urologist (he lives in a small town outside Columbus).  I urged him to call Ohio State University Urology as well.  I've scanned through many posts here, and it is hard to tell how urgent this situation is: assuming that the mass/kidney has to be removed (my presence on this forum is an assumption at this point), should it happen as soon as possible, or would it be reasonable for one of the urologists to suggest a surgery date that is three or four weeks out?  Type 2 diabetes and pacemaker may also be factors.  Thank you for any perspective you can give.

Eliezer2
Posts: 58
Joined: Aug 2012

Well, kidney cancer, if that is what he has, is slow growing and it could have been in place for well over a year or even a few years (given its size).  On the other hand, any day could be the exact day when it progresses to some point that makes a difference, so best not to drag feet if surgey is called for.  Emotionally, speed is also the optimal policy.

 

If it is NOT malignant, it may still need to removed surgically.  In that case, speed is less essential, but you will not know whether it is malignant or not until AFTER the surgery and path exam, so that takes us back to step one and urgency!

 

May he recover quickly and lead a happy healthy life!

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

Steven, even if it's 'only' 14 cm it can't have been there for a year - probably 20 years at least and likely a lot more.  (A better guess will be possible when the path report becomes available.)

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

Hi Early Bird,

With larger tumors the sense of urgency depends somewhat on whether there is any evidence that it has spread.  If it has not then the sooner the better, if it has a little more time to formulate a plan of attack may be warranted.  We have members here with tumors larger than your dad's that were contained and they are doing fine, hopefully your dad falls into that category, if not there are drug therapies trials available that are showing promise in this fight.  A copy of the CT report would possibly be helpful in getting started.  Keep us posted, we'll help if we can.

Good luck and Godspeed,

Gary

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

Did they specifically say "on" his kidney or "in" his kidney? Keeping his appointment is fine but I do think it would be a great option to follow through with Ohio State also, I would check there for a Urology Oncologist. Also, if you are close in the same area as your parents it might be good for him to sign a HIPPA release for you so that you can have access to this important info...sometimes, as you stated above there is confusion because of the fear and the stress of a couple and it is normally hard on most people who have never had a connection to the medical field to even understand half of what they are being told..Even if you live a distance away he can still sign the HIPPA release and you can then call the Dr for info and have copies of reports sent to you. This is what I did with my Dad...I always went with him and he would tell the Dr to explain it to me and he would listen and then later I would explain it to Dad...he was perfectly alert and oriented but even sitting in the same room with me many times he "heard" something way different than I what was said...Just a thought to help you out some. Lots of great people here with lots of good advise and support...you picked a great place to start.

todd121
Posts: 575
Joined: Dec 2012

I took both my son and my best friend to my appointments and I was glad  I did. They had a team and I was glad I had my team with me. Often times the doc/surgeon is in a hurry. They are more careful and take more time to explain things when they have an audience of 2 or more people in the room and my doc answered my team's questions as well as mine. Turned out my son had the forethought to record the conversation on his phone (without me knowing he was going to do it) and I was so glad he did! Later we were talking and disagreeing about something the doctor said, and my son pulled his phone out and said "well let's just listen to what he said again..." haha! I loved it.

Second opinions, seeing a specialist in urologic oncology (aka a kidney surgical specialist) and at some point a medical oncologist, and if at all possible a specialist in RCC (a medical oncologist who has treated many cases of RCC or has done research in it) are all highly recommended.

One thing I didn't research, but later was wishing I did, was vaccine research. They need to save part of the tumor to do this kind of research. I only mention it, because I didn't look into it and I know my tumor is now gone and so this avenue is closed to me should I think to do it later. The other stuff I mention is more important....

Todd

 

 

justsayin's picture
justsayin
Posts: 15
Joined: Mar 2013

Sorry to hear the news.  When I was diagnosed with a mass in my right kidney, I scheduled the surgery before I left the urologist's office for the following week.  Something about knowing it's inside you, you just want it out.  I agree with the other members responses, it is important for more than one set of ears listening to directions and diagnosis'.  My husband, daughter, sister and mom are usually with me for my visits.  My Doctor sweetly call them the entourage, I call them my life support :)

Wishing your family all the best. Please keep us informed.  Your Dad will be in my Prayers.

 

Jean

 

icemantoo's picture
icemantoo
Posts: 1528
Joined: Jan 2010

Your Dad should get the tumor out as soon as possible It is too large for any waiting and seeing. There may be several doctors involved. Once he sees the Urologist and the RCC is confirmed he will have to see a specialsts who is often different from the 1st Urologists as not all specialize in Kidnet Cancer. My surgery was at age 59 and it was no picnic. You want this over ASAP.

 

 

Icemantoo

UpAt5am
Posts: 3
Joined: Mar 2013

Thanks, everyone, for your kind words and helpful advice.  Things are in motion with both his initial urologist and with Ohio State, and he'll have a copy of his scan today.

I don't know whether the growth is "in" or "on", or much of any other information, but I'll be there Thursday to help navigate the consultations.

Thanks again.  I'll let you know how things develop.

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

The trick to this game is to keep persueing options and then follow through. Keep up the good work. So many stories here of people with poor prognosis who refused to accept that. They live and prosper. If in doubt, just read my past posts over the last year. Now, upat5, take a nap. There is a lot of work ahead.

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

I'm 66 as well. They just found mine when doing an abdominal CT for another minor issue.  Mine is not near that size and I did ask for a few weeks leeway to finish up teaching commitments, but told the Doc that if she disapproved of my request I was ready when she was. We go in May 14. Even at 4CM, she says mine has been there likely for years.  Still, sooner is better I would suspect!

Best wishes and get the old timer on track.  Its best not to fool around too long. My best to the Buckeye State!

Mike

 

UpAt5am
Posts: 3
Joined: Mar 2013

Thanks again for the kind words.  Dad met with the local urologist Thursday: 19cm tumor on left kidney, most likely RCC, moving to vena cava and nearby lymph nodes.  Doc referred him to OSU Urology.  Dad had already made an appointment at OSU for 4/4.  Doc tried to move up the appointment but was unable to do that.  In the meantime, Dad has passed a couple of finger-sized blood clots, which I can't even fathom doing once, let alone for 12 days.  Is the clotting typical, or should we be going to the ER immediately? In between episodes, he's relieved and resting comfortably.

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

My usual theme is to discourage panic and reassure folks that a few weeks delay is usually not critical (and normally unavoidable due to the inertia in the system with the pipeline of existing treatment commitments).

In your Dad's case, however, I think I'd be making as big a fuss as possible in all quarters to get things moving asap.  It was smart to contact OSU, given his location and the sooner he is in the hands of RCC experts the better.  It's a racing certainty he'll need a radical nephrectomy and there seems to be no advantage in delay.  Finger-sized blood clots,  very large tumor and the complications of a pacemaker and type 2 diabetes all suggest to me that the earliest possible input and action by real experts is called for as soon as you can achieve it.

So, I suggest - don't be diffident - stir it up as much as you have to to get prompt movement on this.

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