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Help with New Pathology Results

firecharger's picture
firecharger
Posts: 13
Joined: Jun 2018

Hi all,

 

About 18 months ago I had a partial nephrectomy, removing about 3/4's of my right Kidney. At that time after the kidney was removed and the mass( I believe it wass 5.7cm ) analyzed the pathology report showed findings consistant with oncocytoma, non-malignant. My specialist has been keeping an eye on the other kidney due to a relatively small growth that seemingly wasn't alarming to him. We finally decided to biopsy the tumor and the pathology results were delivered via Patient Gateway. I didn't hear from my Dr. or his scheduling nurse since the biopsy procedure over a week ago. Honestly I was beginning to feel no news must be good news.. The renal mass is roughly 1.3cm , relatively small I guess, as the Dr. kept telling me. Here's the pathology results: RCC, Papillary Type, Fuhrman/IUSUP Grade II/IV.  I'm not too familiar with the results description but this new pathology report has leveled me. I still haven't spoken to my Urologist since the results were delivered yesterday via Patient Gateway but now that I've seen them, I can't imagine why he hasn't called. A bit of honesty is accepted and appreciated if anyone can clarify my results. From what I've read, I think everything as I may know it has just been turned up side down. As most of you have been through this, you can imgine my anxiety and the thoughts racing through my mind. I kmow I shouild wait to hear from the Dr.but I'm pretty sure where I'm heading.Ironically the Dr kept reassuring me that previous nephrectomy,with the past pathology results were in my favor. I pushed for this latest biopsy, and now I can't imagine if we continued to let it go longer without definitive results.I haven't even told my wife, looking into my 5 & 10 year old childrens eyes is even worse.I'm sorry to the community, I don't mean to pull at your hearts. I've never been this alone before and lost..Thank you for lending your ears....

 

Firecharger51

 

eug91's picture
eug91
Posts: 172
Joined: Jan 2019

Hey firecharger-

First off, no need to apologize to us. That's what this community is for. All of us here have been where you are now, we all know how uncertain and scary it can be, and we all know that you're going to get through this. We're here for you. 

Your biopsy results: The good news is that you've caught it early. 1.3cm is small. At under 4cm, you're not at risk of the cancer metastasizing. So it possible your doctor hasn't rushed to worry you because of that. Regardless, for your peace of mind, you should contact your doctor tomorrow and ask for him to clarify your results. It's your life and your health - don't be afraid to reach out to him and be proactive, just like you were with the latest biopsy. 

Your anxiety: I strongly recommend you tell your wife sooner than later. It's much easier to get through RCC with a team on your side. Plus she will be invaluable when you talk to your kids. Telling my kids was the hardest part of my RCC experience. In my case, I waited a few days until I had clear cut answers from my doctor and scans, then I tried to tell my kids the truth, at a level that each age could understand, and emphasize positive thinking and faith in our religion and trust in the doctors. It wasn't easy, but you can do it. 

I'm so sorry that you have to go through this, especially after your oncocytoma, but you have MANY reasons to be positive. You've been through a partial neph before, so you already know that you can/will make it through. And with your papillary caught so early, you should be optimistic. 

Let us know if you have questions or just need to vent. We're here for you. YOU'VE GOT THIS. 

firecharger's picture
firecharger
Posts: 13
Joined: Jun 2018

Thank You eug91...

Dr.'s office finally called, follow up scheduled for early next week. I asked his PA to give me a call in the meantime. I'm extremely grateful to be able to open up and share here with the community  . 

Thank You...

Allochka's picture
Allochka
Posts: 883
Joined: Nov 2014

Hello,

I'm sorry you have to go through it again. But, according to your pathology, 2 things are greatly in your favor:

- It is VERY small. Surely it hasn't spread and a surgery will fix it

- Papillary type is less aggressive than clear cell type, so this is also vey good.

You've mentioned looking at your children. I'll quote what my husband's urologist told me during consultation, when I was sitting there pregnant next to my husband, ready to cry...

He told me "Why do you worry? RCC Stage 1 - pffff, it's nothing, your future child will have a healthy father for many-many years" :-)

So this is what I'd like to say to you as well. It's gonna be OK!

Hugs,

Alla

 

a_oaklee
Posts: 465
Joined: Nov 2013

I agree with all of the above comments.  I believe that you are going to be okay and will be around for a very long time for your wife and children.

You are to be commended for doing a really great job of being proactive when it comes to your health.  

I hope you are very confident with your specialist.  If I were you I would want to be at a major medical center that has seen cases like yours.  At least for a consult if you have any concerns or just believe in second opinions.

I dont know anything about oncocytomas, other than they are benign, which is obviously a good thing.  And i agree that its better to have papillary rcc than the more common clear cell.

I am shocked that you had access to a pathology report prior to your doctor speaking with you.  Im really sorry that you got your news this way, and I think it is an error of judgement of the institution.  

While you are waiting to see the doctor prepare a list of questions.  In the meantime, please consider telling your wife.  You should bring another person with you to your appointment.

Good luck to you.  This is a supportive site, so if you need to share, feel free to do so.  

firecharger's picture
firecharger
Posts: 13
Joined: Jun 2018

Thank You....

My case is being reviewed by a team from Dana Farber Cancer Institute in companion with Brigham & Woman's Hospital. My Urologist resides with Brigham's but they share all info with the oncology team from Dana Farber. My first partial Nephrectomy was done robotically with the Davinci Robot. I thouight I was prepared physically/mentally but the post-op recovery while I stayed at the hospital( 4 days ) was eye opening. I thought I could handle post op pain because I've been through multiple shoulder and back surgeries but the nephrectomy trumped them all. 

Reading the posts above,  I agree that the mass is small but I became confused with the grading explained as "Fuhman/IUSUP Grade II/IV" . Without the Dr.'s explanatioin in hand I leaned on google to clarify but still wasn't sure.. I see the Dr. on the 22nd and I'll share the explanation especially if it might help others. 

We're going on a family roadtrip this weekend for my sons Hockey Tournament, staying over a few nights at a nice resort. I'll wait for the weekend to pass and sit down with my wife who is my Hero in life. I've been blessed to share our lives and raise children together. 

Thanks for everyone's support...

a_oaklee
Posts: 465
Joined: Nov 2013

The little I know about tumor grading....  Renal cancer tumors are graded on the Fuhrman grading scale.  There are 4 grades.  1, 2, 3, 4.  The grade is given based on how different the cells look from normal cells.  The more different the cells look, the higher the grade number, and the prognosis statistically is worse.

My husband was grade 3.  (In 2012, and doing well).

Your report says you are grade 2.  They wrote it as 2 out of 4.

 

Hope this helps.  Your doctor can explain all of this to you.

You certainly are going to a wonderful medical center for treatment.  Thats a huge relief right there, knowing you are at the right place.

Enjoy your weekend with the family. 

 

firecharger's picture
firecharger
Posts: 13
Joined: Jun 2018

Thank you so much...

a-oaklee I honestly couldn't see what was right in front of me. I suppose that's what happens when you wake up one morning and open an email and read something like this from my recent biopsy.I wasn't sure if the 2 was a grade/type/stage and if the 4 meant something else. I know on the 22nd the Dr. will fill me in with all the details but knowing this means alot to me. 

God bless us all and will keep everyone in my prayers.

Thank you...

firecharger's picture
firecharger
Posts: 13
Joined: Jun 2018

Finally met with the Dr. today and discussed the pathology results. He told me that the tumor was malignant/cancer and it is located at the lower pole region. He confirmed that it was grade 2, 1.3cm, with papillary characteristics. He recommended robotic surgery to peform a partial nephrecomy. I'm looking at mid March for a surgery date which gives me some time to get into shape prior to the operation.Stengthing your lungs using a breather device is a good idea too. You can get them relatively cheap on Amazon. The cast of characters that come with any surgery, possible infection, bleeding, the unknowns, etc was explained and understood. He feels confident that chemo/radiation won't be neccessary but they will test the tissue surrounding the tumor once it's removed to be sure.We spoke about how my last partial nephrectomy on my other kidney was a very traumatic and painful experience for me and how we could address it more effectively this time.

I can offer this advice to anyone who might have a similiar surgery upcoming. Don't overeat prior to the no eat/drink cutoff prior to your surgery. I'm a food lover and seem to always be hungry. When I was told that post-op my diet would be limited to broths & liquids I figured what the hell, treat myself to a large meal and it would keep my stomach happy until I was allowed to eat again.Very Bad mistake. The nephrectomoy leaves most of the tissue and organs surrounding the kidney in a very sore and bruised state. Having my bowels full created all kinds of havoc post-op and because they inflate your entire stomach area with gas during surgery I felt like I swallowed a mini cooper. With my bowels full , they were probably pressing up against other organs that were very bruised and the pain shot through the roof. This time around I'll stick to protein drinks and keep my eating to a minimum prior to surgery.I realize it's common sense to most but keep it in mind.

Thanks for lending an ear. I'm extremely gratful to be able to share my experience here. 

Thank You...

a_oaklee
Posts: 465
Joined: Nov 2013

Hi. Sounds like you had a good meeting with your doctor, and a great plan going forward.  Now the waiting begins.  My advice:  Stay busy.

It sounds to me like your only problem post op was the pain management plan.  It was insufficient.  This next time you need to complain more if you cant get comfortable.  They can up the dose, make it more frequent, change the drugs, or make a combination.  Maybe your wife can help get them to do something.  In general, I believe that men try to "tough it out".  Dont even try to do that.  Its honestly better to be in la-la-land and be able to move, walk, cough, etc..  You arent going to end up being addicted just because you managed your pain for 2 to 3 weeks.  Dont even be stingy at home.  Take the stuff.   People who have adequate pain management recover faster.  Thats a proven fact.   I do think you made a very good point of not overindulging with food the day before surgery.  Hope you had fun with your family and that they are supportive. 

 

firecharger's picture
firecharger
Posts: 13
Joined: Jun 2018

Comparing the past partial nephrectomy to the last 2 back surgeries was literally night & day. This time around I've set up an appointment with the pain management dept to discuss what I experienced during the last recovery and to have a more open line of communication. I did complain to the nurses on shift and I was told they put in the requests with the Dr. and they never changed them.I can even remeber the medication which was Dilaudid 4mg every 4-6 hours as needed. During my back surgeries I was on a morphine pump and I could press the button every four hours as needed. I was completely comfortable compared to what I went through during the nephrectomy. The first night was brutal. I wanted to leave so badly and could remember trying to crawl out of bed to relieve the pain that I was going through. There's no question they were not prepared properly to deal with the immediate post-op acute pain.With all the new information technology and patient information available to them you would think they could reference a patients tolerences and previous medical experiences.

We had a great time at my son's hockey tournament. He wanted to make us so happy that he went out and had two goals in the first game and three in the second game stealing the show and making us the proudest parents. 

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