I think I have kidney cancer and I'm desperate

Texas_wedge said:

3

Do try to remember that watching and waiting, assuming proper monitoring, is not 'doing nothing' and at this time may represent the best choice. 

I have another option.  Get another opinion.  Calling my general surgeon tomorrow to hook me up with one of his Uro buddies.  As much as I think my current Uro is a briliiant surgeon, he made a bad judgement here, and I've lost trust in him.  Plus, no way in he** I'm waiting until June 14th to discuss this fail with him. 

I'm looking at it this way:  Partial Lap is available to me until 4 cm, and it's stage 1 until 7 cm.  Figure that buys me a ocuple years.

Texas_wedge said:

Options

That sounds like a sensible approach and a good way of thinking.

That is a great choice!

Texas_wedge said:

Best option

Fabrizio, that wasn't the option I was commending.  

Given the need for recovery from all the recent surgical and other ordeals, and time for some better quality of life, I believe watchful waiting is the best option right now.  The lesion, whatever it is, is unlikely to grow enough (if at all) in the next year or so, to make any difference to the risks.  and the prognosis.  There are, I think, greater risks in having yet another surgery so soon, in a physically and emotionally debilitated condition.  I would prefer enjoying some better quuality life for a while and regaining more strength and morale.

There's no need to rush into yet another major surgery - if it becomes necessary, it will keep for quite a while.  If the lesion starts to show significant change then that will be the time to intervene but not before.

I was agreeing with the plan to get a second opinion andthen, probably, go on to a close surveillance schedule, using whatever scan method seems advisable and acceptable.

TW:  yes, that was my thinking.  Only caveat being, I don't want any more contrast CT's.  The last one traumatized me (7 IV tries, and molten lava in my veins).  If I have to be subjected to constant scans, they'll have to be US.  Otherwise I may chicken out.

Hoping my Uro calls today.  From what the radiologist said yesterday, he doubts a CT guided biopsy would be successful either, due to the depth of the tumor in the kidney.  So it's a mystery what the Uro will suggest now.

It's still early here (7am) so I have a couple hours before I can make phone calls.

val1963 said:

Second, third, fourth,

Second, third, fourth, whatever it takes to help you understand and decide the best treatment for you Rains!

Remember to keep breathing...  deep breath in, exhale all the way out...  clears your head and relaxes your body.

we're going to be OK!!!      Stay in touch!  Valerie

 

Well, I tried to contact the Uro this morning.  Couldn't get past his secretary.  I gave her the low down and this was her response"

"He's too busy to look at it, but I'll pass along a message"

wtf?  Well, I won't type what message I wanted to give him.

I'm taking a break from everything for a while.  I cancelled all impending appointments with all my doctors this month (including him).  I'm at the end of my rope and I can't do this anymore.  Maybe in a 3 or 6 months I'll feel differently, but the stress of it is starting to make me seriously depressed.

NanoSecond said:

Taking a break

I'm have been appalled and frustrated reading about what you have been going through.

But one thing concerns me.  I may have missed it - but are you under the care of an oncologist - or - preferably - an RCC expert?  You seem to be only dealing with Urologists and Surgeons.  If that is so you need to change tactics.

What I think you need now is a RCC expert to guide your next steps.

Stepping back and taking a break from all the mayhem is also a good idea.  But not for too very long, OK?

 

-N

Yes I have an Oncologist who's been dealing with the Thyca stuff.  Or rather, not dealing with it.  She's useless and I cancelled my appt with her too.  Let's put it this way-she was the one who ordered my original CT back in Feb.  AND SHE NEVER GAVE ME THE RESULTS.  I had to go see my GP to get them.  When I saw the Onc  April 9th, she didn't even have my chart with her, and she hadn't looked at the CT.  I gave her the run down and her response? "oh, maybe we should send you to a Uro?"

See what I'm dealing with here?  The problem I'm facing is I'm stuck with the BCCAwww.bccancer.bc.ca.  One agency doing their socialist wonders over all cancer cases.  I cannot find another Onc, unless I go out of country.  I even tried to have a referral to PMH in Toronto, but the BCCA refused to release my slides.

As for RCC specialists? I'm not privy to that list.  See above ^

Oh, and I left 2 messages at the Gen Surgeon's office.  They never called back.  Scratch that idea off.

todd121 said:

Staging of RCC Tumors

Staging is not just about size. A small tumor less than 7 cm, that grows into even microscopic veins, is considered Stage 3. So talk to your urologic oncologist about the location of the tumor as well when you are thinking about what you are going to do.

I know this from my experience. I was Stage 1 going into surgery, and my pathology report came back with the tumor having grown into some of the tiny veins which couldn't be seen pre-surgery which bumped me to Stage 3. There's a big difference in recurrence rates between Stage 1 and Stage 3. (10% to 40-50%). I was very shocked when I got my pathology report back. I keep seeing this simplified explanation of the staging being repeated on this website. A very small tumor is "probably" going to be Stage 1.

When you read the staging descriptions, it's easy to think of the tumor growing outside the kidney if it's small as being unlikely. The problem is that there are veins inside the kidney, and if the tumor invades those, then it's a Stage 3 tumor.

Todd

Thanks Tood, that made sense.

Ok, today's chapter of As the Stomach Turns:  Uro's secrretary finally called back around lunch time.  She said the dr wasn't in, but my report from the Radiologist had come in, and she bumped my appt with the Uro up 2 weeks.  I see him next Monday at 4 to discuss the current gong show.  Anyway, apparently the report said something to the effect of :

"Ct guided biopsy may possibly be attempted"

I'm going to decline that lovely offer of more poking an prodding.  Possible attempt isn't very reassuring.  To go through all that to have them fail or it be inconclusive is just not worth the risks.  I'm curious to see what the dr thinks.

Not sure what my other options may be.  If they can't biopsy it, and we can't know for certain it's cancer, I'm not sure I'm up for an invasive surgery.

Hey Fab, I also had a 6.5cm tumor in my right kidney and only found out due to having a kidney stone. I had my right kidney removed on the 29th last month. Apart from a little pain..I feel all good mate. You will be ok, there are enough people on here who have had the same done to them who can shed light on what you are going through. My cancer was a grade 3 and I got told yesterday that they got it early and got it all...that means NO chemo and NO radiation....by the sounds of yours, you aslo got it early...I have looked into everything and anything i can about Kidney cancer....Dont go and worry yourself to a state of breakdown over it...She'll be apples Mate

Fab, you sound like you have a lot of love and support from family and friends....we, also wish you the best

Cheers Mate

and i forgot to mention, im only 39...Bloody cancer knows no age, color or gender...**** disease

foxhd said:

lots of discussion here.

One thing is that there is no do over. I hate this expression but, "It is what it is."  Fears, and negative thoughts are their own cancer. It will rob you of rational thought, happiness, and motivation. So most importantly, deal with the initial diagnosis and get over it. Once you have come to terms with it, your life can become so much more productive. Decision making is much clearer. Different options make more sense. Unless errors have been made, there is no going back. Adopt the philosophy that you will be LIVING with cancer. Not dieing of it. Good luck.

Wish I had said that!

You do cut to the heart of the matter Fox!

chenzo said:

Same here

Hey Fab, I also had a 6.5cm tumor in my right kidney and only found out due to having a kidney stone. I had my right kidney removed on the 29th last month. Apart from a little pain..I feel all good mate. You will be ok, there are enough people on here who have had the same done to them who can shed light on what you are going through. My cancer was a grade 3 and I got told yesterday that they got it early and got it all...that means NO chemo and NO radiation....by the sounds of yours, you aslo got it early...I have looked into everything and anything i can about Kidney cancer....Dont go and worry yourself to a state of breakdown over it...She'll be apples Mate

Fab, you sound like you have a lot of love and support from family and friends....we, also wish you the best

Cheers Mate

and i forgot to mention, im only 39...Bloody cancer knows no age, color or gender...**** disease

it does like us bikers, maybe its the leather...