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Update

Cinnamongirl's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

My consult went very well. I expressed my concerns about the biopsy being unsuccessful and not having answers to what we were burning out.

The DR said there will be a pathologist in the room with us that will verify that we have enough to send to pathology before they continue with the ablation.
That made me feel good. They said success rate is about 97%.
They also reviewed my scans again with us (my husband and myself) the spot is 1.5 cm on the superior pole outer edge of the kidney. So after weighing all my options I booked my procedure. April 11th @6:30 in the morning.
I feel good about my decision. 
Thank you to everyone that offered advice and suggestions. Definitely helped me prepare for this appt as far as what to ask etc.
I love you all and have so much respect for this group. I hope you all have a great weekend!
Cin◻

APny's picture
APny
Posts: 1998
Joined: Mar 2014

Sounds like a good plan; getting the patholigy done before continuing the ablation. And maybe, just maybe, it will turn out to be benign. Keeping fingers crossed for you!

Cinnamongirl's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

Just maybe.... I don't think I have uncrossed my fingers since this whole journey began! Wink

 

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Hi. I'm a little confused between these two posts. As I understand it, they will do the ablation without knowing what it is. You will find out later what it was?

Most of us don't have biopsies on kidney tumors. As I understood it, the reason is they have a very hard time hitting the bad tissue when they biopsy. A negative biopsy is not very reliable. Tumors are rarely homogenous nor are they very solid. There's some stastical probability of them missing the cancerous tissue even with multiple biopsies. That's why they often remove our entire kidneys without knowing really what the mass is. For example, I was told my mass was about a 90% chance it was a tumor based on the imaging. They removed my entire kidney without doing a biopsy. That's generally the common way it's handled for most of us.

Why don't they do the biopsy, get the result, then schedule the ablation after you know what it is? Are they trying to use the same insertion to both biopsy and do the ablation?

Do you know from the imaging that this is likely cancer? I can't tell you details, but I recall they have some kind of classification system of these masses and from that they can get some kind of indication if this is likely an RCC tumor versus something benign.

By the way, if this is an RCC tumor, will that change your staging? And if it changes your staging, will they refer you to an oncologist then?

If you're urologist thinks you have metastatic RCC, I don't understand why you aren't seeing an oncologist yet.

What does 97% success mean? That's really an odd thing to say. Meaning they fully destroyed the mass?

What type of ablation are they going to use on you? I think there are a few types. And how much healthy tissue will they damage?

Sorry for all the questions, but many of us here have had urologists that seem to want to hang on following patients sometimes after it's time for a consultation with a medical oncologist. It seems like this one is in a hurry to have you treat this now? You have a request in to see a medical oncologist you said. Why the rush to treat before your consutl with the medical oncologist?

Have you asked for a second opinion?

For me, I got three opinions, and the 2 second opinions did not agree with the first opinion I got. Doctors have told me good doctors will never mind second/third opinions or consultations with other specialists.

Best to you,

Todd

Cinnamongirl's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

Hey Todd, from imaging they are pretty confident that it is cancer. I have been told that this is another primary tumor not a met from the original tumor so my staging does not change.

They will preform the biopsy they will review it under microscope then when they are happy with the sample they will do the ablation. I am having a RFA ablation (heat). Less than 3% tissue damage. They knew it I wanted a second opinion so I actually had my DR send my scans and records down to a renal oncologist that my sister works with in Texas and he has agreed to take a look. My appt is not until Aprill 11th so I have time to back out but I feel pretty good about this.

The success rate is for the ablation because they can never give you a 100% statistic. It will be done with CT imaging.

I do not mind all the questions. The rush I believe is because they will only do an ablation on anything less than 3 cm and mine is 1.5cm

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

How in the world can they tell it's another primary tumor versus a met? The odds of that have to be incredibly low.

I understand that ablation is probably what you're going to have to do to save as much kidney function as possible if you're going to remove it.

I'm glad you don't mind my questions. Also glad you're getting the opinion of a medical oncologist that has experience with RCC.

I hope you're going to get close followups. I'd want them.

I was Stage 3, Grade 3 and I had a met to my adrenal gland 2 years after my kidney was removed. After that my RCC oncologist has insisted on chest/abdomen/pelvic CT scans every 3 months.

Best of luck. I sure hope this cures you of RCC.

Todd

Cinnamongirl's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

Yes my surveillance is every 3 months. Full chest, abdomen, pelvic CT. With bloodwork.

They are trying to preserve kidney function. 

I hope you have a great weekend Todd and I will keep you updated. Thanks for always looking out. Makes my heart happy

Cin

steelr66's picture
steelr66
Posts: 23
Joined: Mar 2018

My journey is still in progress (partial neph of right kidney on April 3rd) but i wish you the best and a speedy recovery.

 

Cinnamongirl's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

Steelr66, well I will keep you in my thoughts as the 3rd approaches. Please remember to take it easy and try not to rush the healing process. We are all here for You!

Have a great weekend.

Cin

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