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Ablation

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

So my consultation for my ablation is Friday. I know it's just a consult but it makes me anxious. Although my DR seems to think that this is another primary tumor it's in my remaining kidney. I just can't believe my luck. I'm trying to keep my anxiety in check.

I have my yearly "woman" appt on Wednesday. Before my cancer diagnosis it never bothered me but now I just fear they will find something every time I have a doctor appt.

Anyways I think of all of you often and hope you all are well.

Cin

APny's picture
APny
Posts: 1988
Joined: Mar 2014

Cinnamongirl, hope all goes well with your consult. It really does suck to have this hanging over you after what you went through. And I totally understand the doctor anxiety. I refused a mammogram and a pap smear for those reasons a few months after my surgery. Afraid they'll find something. Stupid, I know, but just wasn't ready to deal with the potential of more drama. All the best to you. Keeping fingers crossed for you.

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

I'm coming into this in the middle, so please excuse me if I'm off base. I haven't been spending a lot of time keeping up with the board. Both having a met to the other kidney as a first metastasis and having a second, spontaneous kidney cancer are rare. One exception is people with a genetic predisposition to kidney cancer.

Genetic kidney cancers are the best understood types. Many of the drugs we have now came out of studying genetic kidney cancer. The people that really understand genetic kidney cancer are the RCC specialists that keep up on all the research and those that have done this research at NIH.

If you aren't seeing a specialist that really knows RCC, you might want to consider seeing one.

Ablation destroys the tumor without any chance of getting a good pathology report to find out what it was/is. It's a downside of ablation. Without that information, a prognosis and followup is difficult to make.

I'm not a doctor. However, if it were me, I'd get at least another opinion from someone that is an RCC specialist (a medical oncologist that specializes in RCC/sees many RCC patients in a year). Maybe you have it and there's stuff you haven't talked about that explains my concerns. I'd get it before the ablation. These tumors grow and spread slowly. There's time.

And if my comments are out of place, then feel free to ignore them. I hope it helps and doesn't just add to any chaos you're suffering from.

Best to you,

Todd

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

It's also really odd that there was nothing in the other kidney in November and now you have a 1.5cm mass in that kidney. That seems to be faster than these tumors usually grow.

Was the other kidney completely clear in November or did they miss it?

Prior to surgery did you have a CT with contrast of chest/abdomen/pelvis? And then another post-op?

Your bio doesn't mention the specialty of your doctor that is doing all of this. Is it a urologist? Urologic oncologist? For metastatic kidney cancer, a medical oncologist with RCC experience is the best choice if you can see one.

Best wishes to you,

Todd

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

Hey Todd, I am still seeing my Urologist. The tumor apparently was there in Nov on the original scan but it was never mentioned and to date has not changed in size at all only appears darker now on the scan which apparently means it is becoming dense? I will be having a biopsy before the ablation.

They have recommended that I do genetic testing but my primary Dr said to be careful because depending on results my health insurance might drop me if they deem me high risk...which scares me.

I am freaked out by the whole thing to be honest. I have asked to be referred to a RCC specialist I am just waiting on the referral. The closest one is in Seattle which is about 3 hrs from me.

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

It seems like they might ought to have biopsied this back in November. Did you discuss with your doc the pitfalls of biopsies? Or did he/she explain it?

I don't know much about imaging, but sometimes they can tell the likelihood from the image what that is. It's still pretty small. But do they think that it likely is cancerous?

I hope you can see the RCC specialist soon. I remember hearing someone talk about genetic RCC and they explained that they really know how this cancer works, and often times no treatment is necessary, just observation. Of course it might depend on the type of genetic RCC.

It might be worth a few hundred dollars out of pocket to get that referral sooner rather than later. I'd rather have it before the ablation, because the ablation is going to destroy whatever it is.

Are they doing the ablation regardless of the result of the biopsy? Are they scheduled together?

You might call the RCC specialist and ask what a consultation will cost out of pocket. Your doc can also call the specialist. Sometimes they can get a side referall for free as a professional favor. My oncologist provides these at times to other docs that aren't specialists in RCC, just to help people get decent care.

I don't want to scare you more, but I think your urologist is a little bit out of his specialty here.

I was never told not to get genetic testing because the insurance company might drop me. In fact, I think that's against the law. I got mine done at Cedars Sinai in Los Angeles. Because I had other cancers in my family, my insurance company ended up covering it (based on my medical history). However, I almost paid out of pocket. It was only going to cost a few hundred dollars.

Best to you,

Todd

P.S. These cancers grow and spread pretty slowly. I don't think there's a rush for you to get that biopsy or ablation. Talk to your doc. See if you can work in getting the consult with someone that knows RCC. Did you have the CT scan with contrast of chest/abdomen/pelvis for further staging to make sure everything else is good?

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

I did have the CT scans with contrast and everything else was good along with a mammogram and a routine pap that was actually today. Of course I haven't gotten the results of my pap but everything else was clear. We did discuss the down side of biopsy. 

The feeling I get is that he is trying to preserve as much kidney as possible and feels that due to size and location this is the best option.

I am going to the consult Friday with my list of questions and then make my decision. I appreciate your concern and your feedback. You are right about the genetic testing. I am so grateful for you and your opinions. Makes me feel like someone has my back!

Cin

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Wishing you the best outcome with this! Hopefully they can tell from the biopsy what it is and you won't have to have any treatment at all. That would be awesome.

Please keep us updated.

Hugs,

Todd

Limelife50's picture
Limelife50
Posts: 476
Joined: Nov 2011

First diagnosed in october 2011 with a 5x4x3.5 tumor in right kidney nephrectomy 10/11/2011.Fast forward to March 2012 a 1.5 tumor was found in left kidney had RFA done to treat the tumor,since then i have been NED , its not bad luck it is good luck that the second tumor was discovered so take care of it.

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

I fell good about my decision. Don't get me wrong. I am nervous but ready to get it gone!

Thank you for sharing your experience.

Cin

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