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Hi! New to the Group. *update*

AJeanice
Posts: 4
Joined: Jan 2021

Hello everyone! 

I am new to the group. 

I am a 41y female and was told Friday of the new diagnosis of Kidney Cancer After the CT scan confirmed that they found a @2.5 inches (almost 6 cm) complex cyst on my right kidney located on my mid to lower pole. I was told that the mass was necrotic in the center and the lymph nodes were enlarged. The CT scan stated that "The right kidney demonstrates normal and symmetric enhancement and excretion of contrast. No hydronephrosis or nephroureterolithiasis. The collecting system and ureter are without evidence of duplication, stricture,filling defects, or dilation." I had none of the symptoms to alert me to an issue. They happened upon it when doing an ultrasound on my liver which I then had a CT.

I have an appointment scheduled with the Urologist/Oncolgist on 2/1/2021 unless someone cancels with something sooner. My Primary Care Dr did not want to stage me and stated that he would leave that up to the team I would be working with as well as the course of treatment. He did state that he strongly believed that surgery was going to be where he thought I would be heading. I was also told today that the "Tumor Board" at the hospital would be discussing my case tomorrow due to my family history of cancer But I would not hear anything from that un I meet with the Urologist.

I'm here looking for support and guidance. I have decided not to tell my children who are 10 y and under. We have a history of cancer (none kidney) on my side and the outcomes were not as we had prayed for. I am scared as I am sure you all were as well. Thank you for taking the time to read this and offering words of hope and wisdom. I look forward to getting to know you all more.

 

AJ

eug91's picture
eug91
Posts: 339
Joined: Jan 2019

Sorry you had to join our group, but I'm glad you found us - this is a great forum here. All of us have been through what you're going through, so we know you're gonna get through this and you're gonna do great. If you have any questions or concerns or just need to vent, we're here for you. 

The good news is that you caught it. [EDIT: misread the size]  While it's awful to get something so shocking while you're so young, since you're young, your body should be better able to handle whatever treatment is necessary. 

First piece of advice: when you go in for your appointment with the urologist/oncologist, bring either a notebook or your smartphone with you. The information will be coming fast, and your head will be swimming trying to make sense of it all. So bring something so you can write it all down. Then you can look things up later or ask us. 

Second piece of advice: be wary of Doctor Google. Advances in treatment happen quickly, so a lot of the information online is only a couple years old but is WAY out-of-date. 

As for telling your children, it's not easy. I didn't tell my kids at first either. After more scans and updated information from my urologist about my surgery, then we sat down and told the kids. My then 11 year-old was crushed. She was old enough to know what cancer meant, and while she found some comfort reading every book on cancer she could find at the library, she was the most nervous for a long time after. My then 6 year-old didn't understand what she was being told, but she picked up on the stress/worry in the family, so she just kept her head down and answered "okay" to everything. After a couple of days, she started tentatively asking questions to my wife - things like if cancer was contagious, things like that. By the time my surgery came, it felt really good to hear my kids able to joke about it, calling it "the Christmas daddy got cancer". 

Good luck in the upcoming weeks. Let us know how things go. We're with you and you're gonna do great - you've got this! 

Biner
Posts: 103
Joined: Apr 2020

Hello i had about same situation,2019 incedently found comlex cyst 2.8 cm recomended watch and see,in 2020 ct show 4.5 solid tumor with necrotic change,refered to oncourologist and scheduled surgery,sugery don 3 weeks after unfortanaly it was already 3 stage with size 4.1 cm grade 3 agressive rcc.I losed time losed hope to good prognosis,i recomend you be advocate for your self.6 cm already not small mass,usually i was told rcc not spread before 3 cm,but who know.I wish best 

Bay Area Guy's picture
Bay Area Guy
Posts: 521
Joined: Jun 2016

As eug says, we've all been in your situation, either for ourselves or for a loved one.  I agree completely that Google is NOT your friend in this situation.  A lot of the websites have old information and, in many cases, it's conflicting information.  I know really well because that's the first place I went and I drove myself crazy (well, in my case, crazier than I already was) trying to sort through everything.  In addition to the notebook and smartphone that eug suggested, if you can bring another person with you to the appointment, that would be good for a couple of reasons.  One, you're going to be distracted on the drive to your appointment and another person can help with that.  Two, a second person listening in can pick up things you might miss.  My wife went with me and she picked up a lot that I missed.  Don't be afraid to ask questions or have the doctor explain things again if you are confused by anything.  I was blessed to get a wonderful urologic oncologist at Stanford Hospital.  He took his time and explained things quite thoroughly.

One other thing that comforted me at my first appointment was the waiting area.  Yeah, it sounds strange, but when we were waiting for my appointment, we noticed that none of the other patients waiting for the doctors from the various cancer specialties (including the urological specialty) looked frail or ill.  It was very comforting to realize that we were someplace where patients were getting really good care.

All of us here will be here for you.  It's a very good, supportive group.

icemantoo's picture
icemantoo
Posts: 3362
Joined: Jan 2010

I read yout post as 6 cm. At that size surgery is the only option. Your PC sent you in the right direction. Mine was in 2002. Since then all clear for 16 years than I joined the Prostate club amd 3 months later I went intp the ER on 12/30/19 and told if I did not get my Gallbladder out by the end of tge year I would die. I slept thru NYE. Hopefully this will be one and done for you.

 

 

ivemantoo

 

AliceB1950's picture
AliceB1950
Posts: 131
Joined: Jun 2019

Mine was also found incidentally, during a pre-op non-contrast chest CT for breast cancer surgery 🥴.  It was 7 cm, luckily on top of my kidney and therefore visible on the chest CT - otherwise it would probably still be there and growing. Except for having genetic tests if your doctors think they're a good idea, try not to think about whatever bad outcomes any of your family members had with their types of cancers. I've had relatives die of cancer but those were THEIR cancers, not mine. Try to do some fun things before your appointment, even if it's just watching silly movies or having dance parties with your immediate family. And remember the full, active lives that kidney donors lead afterwards - as one of my doctors told me, it's the same surgery, just for a different reason.

lobbyist0724's picture
lobbyist0724
Posts: 471
Joined: Sep 2016

My situation was similar to yours, I had a 3.2 cm (shown bigger in CT compared to pathology) Bosniak II Complex cyst 4 years ago and I was 42 years old. I have two young children under 10.  You can click on my profile to find out the details, I had open surgery and I wrote a long post about the recovery (https://csn.cancer.org/node/306100). I wish you the best outcome and take care.

Mmoses25's picture
Mmoses25
Posts: 156
Joined: May 2020

I know your scared I was my mine was found by accident it was 4.1 stage 3 my biggest mistake was to reading the internet I couldn't stop my doctor found out what I was doing and said stop right now best advice I ever got as far as telling your kids you will know when the time is right. You got to think positive I know it's hard right now but you can do it your young and and strong you can beat this if you need anything reach out good luck with doctor and oh by the way they said mine was bigger then it actually was so for right now relax

Max57's picture
Max57
Posts: 175
Joined: Mar 2015

Mine 2.5 5 years ago relax its going to be alright 👍 

AJeanice
Posts: 4
Joined: Jan 2021

I just want to thank everyone for being encouraging and empathetic. The funny thing is the first advice that my primary care doctor gave me was to not go on Google. He said if I had to look it up to stick to the mayo clinic website or I can get some info through Reputable cancer network sites. Like said before by you all, the biggest fear is just the unknown. Every day gets a little bit better and I keep saying my positive affirmations that this is localized and removable. We figured that we would discuss it with our kids once we sit down with the urologist to get more definitive information because we know that they will be asking questions. I will definitely be bringing some notes in and I will record the interaction so that I can go back and re-listen to what he talks with me about. I am two weeks postop from my Anterior cervical discectomy and fusion surgery and the neurologist Just gave the all clear so that I could go back into surgery right away if needed. I will be opting to go to surgery route when I speak to the urologist as I really feel that I just want this out of my body to prevent the spread, f whether it's in my mind or physically in my body. I will keep you guys posted. Thank you for the bottom of my heart!

Deanie0916
Posts: 439
Joined: Nov 2016

Sorry that you are in this place. We all didn't want to join this club. I will keep you in my thoughts and prayers. You have a good group of people here with lots of knowledge. Please let us know your updates.

citizenklaw
Posts: 61
Joined: Mar 2019

Mine was a 9cm ball. Fortunately, it was contained and they took my kidney completely.

You'll get through. Have no fear. You're among friends.

a_oaklee
Posts: 567
Joined: Nov 2013

Welcome.  Really sorry you are here.  This cancer can grow so big without any symptoms, so Im happy for anyone who finds it early.  I wanted to comment on telling your kids.  You do not have to say the scary "C" word to the kids.  Or to anyone for that matter.  But its enough to just tell kids that you have a growth, that shouldnt be there, and you need to get it removed.  Im sure you will know the right thing to say to them, at the appropriate time.

 

Bay area:  I thought the same thing in the waiting room.  "All these people look great".   I still think that.  Its a good sign I believe.   

AJeanice
Posts: 4
Joined: Jan 2021

The Tumor Board reviewEd my CT scans and wanted to send me for 1 more MRI. It confirmed what they thought, the cancer has invaded my right renal vein. I was told that they would do an open nephrectomy to remove the entire kidney and the transplant surgeon would then come in to clean out the renal vein in order to get the Cancer out. The report states that it has not made it to the Inferior Vena Cava, so I'll take that as "good" news. They stated they will review the MRI and schedule me as soon as possible for surgery as this is showing to be more aggressive and they want to get it out before it gets to the IVC. Has anyone had experience with this? Since the MRI results came late in the afternoon so I haven't been able to discuss it with them. I dont know how far it has invaded or even what it means For my future treatment? Can they really clean out the cancer for the vein? they just gave me the jist before my MRI was scheduled. I'm sure they will go over it with me soon. Thanks for all of your help.

a_oaklee
Posts: 567
Joined: Nov 2013

My husbands 5 cm tumor was invading quite a bit into his vena cava.  He had a total nephrectomy without any significant problems.  He is much older than you.  He was in the hospital for about 5 days.  He did need a transfusion during the surgery.  Kidney cancer is very vascular, so it wasnt a surprise.   You know its really great that they found this out prior to surgery.  They are prepared and will have the right people in the operating room taking care of you.  My husbands surgery was in 2013.  No problems re that surgery.   My advice is to have surgery as soon as you can.  Yes, they can remove masses within the vena cava.  In my husbands case the pathology report showed it hadnt infiltrated the walls of the vessel.  Ive read where if it does infiltrate the wall, they resect the vessel.  You dont have to concern yourself with this.  Yours is not in the vena cava.  Im sure they will schedule your surgery very soon.  You will be okay.

AJeanice
Posts: 4
Joined: Jan 2021

Just wanted to do a quick update...I will be havimy the open radical nephrectomy this Frida, 2/19/21. I'm kind of numb and not really having any emotions on it right now. I'm sure that will change as it approaches. 

Bay Area Guy's picture
Bay Area Guy
Posts: 521
Joined: Jun 2016

Best wishes for a boring, uneventful surgery and a swift recovery.

Biner
Posts: 103
Joined: Apr 2020

i wish you good luck!all be good now surgeons very professional with all kind tumors.

eug91's picture
eug91
Posts: 339
Joined: Jan 2019

All of us made it through our nephs and we were just as numb/scared as you, so we know you're gonna make it through, too. 

Some advice from foxhd back in the day-

-It's not that bad. You are only having surgery. You aren't getting married. Go forward and think about what you want to be doing in 2-3 weeks. There should be some good ball games on. And you don't have to get up to work. Focus all your energy on how good a thing this is that you are doing.

-Here is how you do it. Trust and don't second guess anyone while in the hospital. Everyone has been properly trained and they develop a knack at being real good at it. So sit back and watch the process like you are watching a movie. They will take care of you. You will not be their first patient. Do what they say and you will be running around in no time.

-Everyone goes through this. You'll have a wonderful spring and summer. Patience. You will look back and wonder what the big deal was. We see it all the time. I promise.

-Remember, stay positive. Even if that is all you've got. FLY. 

Good luck! You've got this AJ - you're gonna do great. We're with you! 

AliceB1950's picture
AliceB1950
Posts: 131
Joined: Jun 2019

I'll give you the simple advice that helped me with surgeries: You don't have to be brave. You just have to show up.

Amsterdamsel's picture
Amsterdamsel
Posts: 2
Joined: May 2021

This is going to be my mantra for the next month, Alice. Thank you!

Mmoses25's picture
Mmoses25
Posts: 156
Joined: May 2020

Don't worry you will do great I will keep you in my prayers for a speedy recovery 

Lady Lou
Posts: 5
Joined: Apr 2021

looks like I posted in the wrong place.  Opening a new thread.

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