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Second opinions?

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

So, I had my 2 week post-op today. I wasn't really impressed with the Urologist. (The same one who downplayed the mass last summer and said it was probably just benign). I got my pathology report from him today and I could tell he was a little annoyed with my questions. 

It's a Type 2 Papillary RCC 4.5cm x 3.2 cm T1b NX The Sarcomatoid and Rhabdoid features were negative, it was limited to the renal parenchyma with no lymphovascular invasion and negative margins. All really good things. Except they didn't give it a grade. I called the pathology group and they said for the papillary type they don't grade it because they say it's type 1 or 2.

The Urologist told me we will scan in 6 months (Chest/Abd/Pelvis) and if nothing is seen we won't do any more scans. I asked him about genetic testing since I'm 40 and female and this is an unusual type of RCC to get and he said they don't do that and no one else really does either and that only type 1 is hereditary. Except, I know that the NIH does, and I know that Type 2 can be hereditary. 

I'm feeling a little frustrated and he said, I know that you like to know things and have information, but this is the protocol. I went ahead and sent in a request to the local Cancer Institute to see if they will at least meet with me and talk about my situation and see if they have other resources or recommendations. Has anyone else been through this? Is this a case of me just knowing too much? I asked him about the AML that was spotted at the top of my left kidney during the first US and he said it didn't get talked about on the CT so don't worry about it. Easy to say don't worry when you haven't lost a kidney to cancer at 40 :/ 

 

 

Brock1969
Posts: 80
Joined: Jan 2018

Find someone else. Can tell with the entire tone of the post that you are not comfortable with this urologist. Your health is far too important to feel you have to have this one. Keep searching for someone you can get answers from and seems to have more of a vested interest in you and your situation. 

icemantoo's picture
icemantoo
Posts: 3217
Joined: Jan 2010

--but keep in mind you could be getting honest and accurate answers even though the communication from the doctor seems lacking.

 

 

icemantoo

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

And she told me to seek out a second opinion even if it's just for confirmation. And that I should stop apologizing for the knowledge I have about PRCC and typical follow-up. That there are enough doctors out there to talk to who will be a better fit and I don't have to stick with or be loyal to the one who feels too dismissive. I don't expect to be coddled, but I work as a patient advocate for my paid job and realized if I was working with a client this is what I would tell them to do! I'm not sure why it's so much harder to advocate when it's for myself.

It really helps to hear from others what they have done and what their experiences have been. We only get one life and if I go out I'd like to say I did my best to be pro-active and stay healthy enough to enjoy it :) #goals

Mighty Frog's picture
Mighty Frog
Posts: 138
Joined: Jul 2017

Had my LPN surgical last year. From what i know and read. We normally need to be scan (either CT or MRI) for 6 months for 2-3 years and later followby yearly for another 2-3 years with the 5 years timeframe. (3 months scanning for those advance stages) 

Then only or most doctors will stop the scanning and declare you are CURED. But SADLY to said there are no CURE in 'C'.... the 'C' just in remission. This is why continue scanning for life is very important. 

Steph85's picture
Steph85
Posts: 158
Joined: Feb 2018

I love my urolgic oncologist, but he wanted to do scans 1 at 6 month, one at 2 yr and one at 5 and be done. I didn't agree with that. I went to see a MD Oncologist who specializes in RCC. He agrees to do a scan every year until the 5 yr mark. Then a scan every few years after. I had a bone scan done for peace of mind which came back clear. I'm waiting for my insurance to autherize the genetic testing since I'm 32 and female.. You never know! I need to know if I have VHL so my sons can be aware. Anyway, this is your life your body. If your not comfortable with the urologist, see someone else! I'm thankful to have a UO who is also my surgeon and a MDO RCC specialist on my side. Be your own advocate. Take care and I hope you heal quickly from your surgery! Take it easy

 

Stephanie

 

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I got ahold of the Willamette Valley Cancer Institute today and I have an appointment April 24th for a second opinion and to talk about future scans/planning. I’m really happy they will see me and I think it will give me a piece of mind :) I’ll keep everyone posted! 

Steph85's picture
Steph85
Posts: 158
Joined: Feb 2018

I went to WVCI to! I saw Dr. Butrinsky... I think thats how you spell it lol. Anyway, good luck! 

 

Stephanie

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I will be seeing Dr. Yasenchek. I saw in his bio he studied at the Mayo Clinic and is connected with a lot of clinical trials etc. That made me happy :) 

RCallinan
Posts: 2
Joined: Apr 2018

Hello.  I am a new member of this extended family. Like many of you, I went Into the hospital for another condition and small masses on each kidney were discovered.  This was on April 7.  Thankfully a small mass of about 2 cm is located on the outside of my left kidney and can be readily removed.  I’m considering ablation in this case.  On the right, they found 2-3 masses totaling 5 cm.  My current doctors are recommending entire removal. I still have some questions as to why which I will discuss with them further early next week when the results of a bioposy are expected.

The doctors gave me the name of a well regarded urologist if i wished to get a second opinion.  Unfortunately, the earliest appointment available is about a month from now.  I have real concerns waiting that long.

just wondering how quickly others were able to get a second opinion?  Any insight would be much appreciated.

(My apologies. I thought I was posting the aforementioned under a seperate topic.  My upmost support to Glidergal365.)

 

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I only have one urology group in my area and the Cancer Institute wouldn't see me until I had a confirmed diagnosis. Now that I had my kidney removed and pathology showed positive for pRCC they made an appointment quickly. I would make the appointment and then ask to be placed on a waitlist for a sooner appointment. And then call them every few days to see if they had any cancellations. I knew that I needed my kidney out because of it being atrophic and that down the road it would give me issues with or without cancer. I wish I had gotten a second opinion last summer instead of waiting the 6 months. I didn't feel comfortable waiting and my tumor grew fast and is aggressive. Good luck! 

RCallinan
Posts: 2
Joined: Apr 2018

Thank you for your sensible suggestion on being put on a waitlist.  In addition, I will be calling everyday.  Well, at least most.

i really don’t want to wait long since the tumor on my left kidney can be readily removed now.  It’s just that the 2-3 tumors on the right were initially interpreted as one which suggests they’re clustered. If so, why not just remove that portion of the kidney?  I will find out more on Monday when I meet with the oncologist.

Thank you again for your understanding and I wish you all the best.  Stay strong.

 

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

Hi. I know how unanswered questions can cause anxiety!! The good thing is that they got it out!! Sometimes doctors aren't there for conversation, but just to give direct answers. With mine and your personalities that isn't enough lol. You could get another opinion to put your fears to rest, but will it be enough for you at that point? I know it is difficult to move on from this because there are so many what ifs. We already got the "dreaded call" that something was found so why not have it happen again right? If you think it will put your mind to rest then seek out a 2nd opinion. I just had my 3 mth scan and go in September for a CT scan. After that it will only be yearly that I get scanned. I am actually going for genetic testing in July, but that is only because my dad died from cancer and 7 other close family members have had it and 5 of them died from it as well. It is more for my son's sake. I already had it so the testing won't really help me much lol. Take care and I hope you find the peace and rest you seek.

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I agree with the whole conversation thing. Having worked in healthcare for over 20 years I am pretty good at feeling out a provider and their style and working with them. I like a Doctor who will give it to me straight, the good, the bad, the ugly. I understand so much more about this cancer than I did last summer and I trusted the experts. In retrospect, I wish I hadn't just accepted his response to me then because I wasn't comfortable with it when I left the office. I didn't know where else to go though because there is only one Urology group in town so I would have to go over 2 hours away for a second opinion (until it was confirmed cancer). I think getting established with the Cancer Institute will give me peace for follow up because if anything is ever found elsewhere that is exactly who I would want to follow me. I am curious about the genetic testing because I am only 40. My father passed away from pancreatic cancer at the age of 52. We don't have a lot of cancers in my family history, but we do have multiple rare auto-immune disorders (like Wegner's, CIDP and Sjogren's). My thinking is I'd love to help out researchers figure out how to help others! Where did you end up going for genetic testing? 

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

i would be running in the other direction from that hospital... it’s sad that the protocols vary so much but with your pathology I agree with you and Would be asking  for three month scans esp because of your age

the hope is you will never have this again but you can’t live  on hope

stay strong and keep us posted

Annie

 

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I'm happy that I will be seen in less than 2 weeks and will then feel good about the follow-up Laughing We are ultimately our own best advocates right! 

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I saw the oncologist today and I am SO happy. He came in the room and said all the things I needed to hear, before I even asked. He took the time to describe the type of carcinoma, printed out a guidelines for follow up sheet and went over it with me. He did labs before I left and ordered a CT of the chest to get a baseline (I've never had one). He also referred me to a geneticist (apparently there are 3 in Portland) because of it being papillary and my age it sends red flags of genetic stuff that he wants to rule out. He said he doesn't normally do the follow ups (he's the chemo guy) but he is more than willing to work with me in case something does pop up down the road because he knows that kidney cancer is an odd duck that does what it wants. I feel SO much better and he told me he was glad that I self advocated to get what I needed. Happy day! 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

This oncologist sounds much more sympathetic and knowledgable. Personally, I don' think urologists should do follow-ups on confirmed cancer diagnoses. There are a few urologists (and particularly urologic oncologists) who know a lot about kidney cancer, but they are few and far between. I'm glad you got to see an oncologist and that they did a baseline CT of your lungs.

I don't know anything about papillary RCC (I think you said that's what you had). If possible, I'd want to see a medical oncologist that specializes in RCC. I think there are some in the Portland area. I was looking around because I was thinking about moving to Portland.

Some people that are knowledgable about RCC think the follow-up guidelines are too lax. My oncologist has always done more than what the guidelines suggest and he is a specialist in RCC.

It'd be worth if it were me, to see a specialist in RCC just to get an accurate prognosis. I saw a general oncologist and he was way off on his prognosis. He used on online tool to show me my prognosis and it was just flat wrong. I went to get 2 more opinions (both RCC experts) and both independently gave me a different prognosis. The second one actually pulled up the study from UCLA to show me what he was basing his prognosis on. I felt so much better knowing that he was reading the papers and watching the research on RCC and not spending his time dealing with people's colon cancer and breast cancer chemo treatments. One of the RCC experts I saw told me he sees more RCC patients in a day than regular oncologists see in a year.

However, if your oncologist is vigilant and willing to do some extra research and/or consult with an RCC expert in the area if needed, I'd be ok with a general oncologist. I would never have stayed with your urologist for follow-ups. His attitude alone was a problem much less his knowledge.

So glad you found a doctor you can work with!

Todd

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