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definition of invincible

thejediknight
Posts: 4
Joined: Jul 2018

So, my dad told us yesterday that he has kidney cancer. I don’t think I’ve ever cried as hard as I did when he let is know what was going on.

My dad is a 47-year-old geek, a non-smoker, non-drinker, a relatively healthy guy who shouldn’t be under the weight of all of this. At first, he thought it was kidney stones, and while he does have a few, his CT showed a mass on his right kidney, around 7-8cm, and he’s having surgery on Tuesday to remove it. Luckily, it’s contained to the one kidney, as his left one is perfect, but his doctor did see something in a nearby lymph node that could be just benign irritation or something more. The uncertainty is sickening.

I can’t help but feel hopeless. I don’t know anything about the survival rates, if it’ll come back after his kidney is removed, or anything like that. No one in my family has ever had cancer. I still feel like I’m dreaming. As the oldest child, and as the only daughter, I can’t help but feel lost. I want everything to be okay, because my dad is my hero. He’s supposed to be invincible. This shouldn’t be happening to him. I don’t know who to turn to, but all I know is that reassurance would be very welcome.

 

Thanks.

icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

jedi,

 

Not real big, not real small at 7-8cm. Many members of our club are doing well with larger masses. Get the surgery behind him (we all went thru that0,  the doctors will have a pathology report and follow up with regular scans. I too thought I led a healthy life as well.

 

 

icemantoo

thejediknight
Posts: 4
Joined: Jul 2018

Thank you so much for your words. I took a look at your story and wow, how inspiring! I’m glad to see that you’re living a good life through what you’ve gone through. It really gives me hope for the future.

JoeyZ's picture
JoeyZ
Posts: 205
Joined: Mar 2018

I had a monster tumor, 12 cm., and if you click on my picture you can read my whole story. I'm doing fine 4 months post surgery. Not healed yet and not always feeling super great, but still doing alright.

It was a shock to me to find out I had such a monstrous thing inside of me, with no side effects whatever, until the blood in the urine started.

My lymph nodes were swollen but that is going down now. Just inflammation. However, one was cancerous and removed. I had a fantastic team of surgeons. I am lucky to be alive.

It happens to the best of us, and you learn to adapt and go on as best you can.

We're here for questions and support for your Dad and family.

thejediknight
Posts: 4
Joined: Jul 2018

Reading your story really enlightened me on this whole process. I’m glad to see that you’ve taken it all in stride. Thank you so much for your words, and hopefully my Dad can get through this being as strong as someone like yourself has been! Wishing you the best.

Bay Area Guy's picture
Bay Area Guy
Posts: 385
Joined: Jun 2016

Most of us here on this board are survivors of kidney cancer.  But we al realize that there are other survivors as well.....the family and friends that have helped us get through some of the dark times.  The thing that I believe we all shared was just trying to take one thing at a time and not get too far ahead of ourselves.  It's fortuante that your dad is going to have the surgery in a fairly short amount of time.  The waiting is always the hardest on everyone.....patient and family alike.  While he's in the hospital prepping and even when the surgery is completed and he's back in his room, be anotehr set of eyes and ears for him.  For the patient, there's a lot going on and I know I didn't hear or see or comprehend everything that I was supposed to.  Coming back mentally from the anesthesia has alwyas been a long process for me.  That's where my wife and her family were wonderful.  They acted as second, third and fourth sets of eyes and ears.  (She has a huge family and at one time or another, I think six or seven of them were in my room, even though I was only in the hospital for 25-1/2 hours.)  In your dad's case, with the possible lymph node issue, you'll need to listen very carefully to what the surgeon did and what they might plan on doing in the future in terms of followup.  Even if your dad doesn't ask a single question, if you have anything on your mind, make sure you ask.  The docs and the nurses, at least where I was, actively encouraged all of us to ask anything.

I've said this on a lot of my posts, but it bears repeating here.  A diagnosis of kidney cancer is serious.  But the techniques that are used to treat it have advanced so much in the last decade or two that it is very, VERY curable.

Oh, and one other thing.  Don't go looking at Dr. Google.  You have to be careful because many of the websites that talk about cancers of any sort are way out of date and the statistics they quote are, frankly, wrong with the current kinds of treatment that are possible.

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

Welcome to the board no one wants to join

I was a non-smoker, non-drinker, athletic, 36 year old when a flank pain led to diagnosis, it was four years ago and I do remember how frustrated, hopeless, shocked I was for a long time after surgery.

A 6-7 cm tumor can be stage one or two, both with good prognosis. If it turns out to be stage three then it needs more vigilant follow up but still has 56% of no recurrence in the future.

The surgery should be done by a surgeon who has kidney cancer experience, the the pathology comes and it's time to see an oncologist with kidney cancer experience. As you can see in my bio I had pelvic, abdomen , and bone scan and brain MRI few months after diagnosis  as baseline which eased my mind. I think It's good for your father too if that's what his oncologist thinks.

If you need to cry then don't hesitate, let's be honest, it's a shocking news we are not prepared for, but after  crying it's time to do something to make the situation a little better each day. See a therapist if you need to, this was what helped me a lot.  Be at your father side and let him pass this tough time, give him all your support, love, and let him know this isn't a terminal disease. We have many members with large tumor with no recurrence, most of them not posting regularly but they are living their lives out there. In my story my biggest issue was that I couldn't open up, very few people were told the news and I couldn't even talk about my emotions, fears and concerns with my hubby, I was unconsciously playing a tough girl role for a while, then I collapsed. This was the time a therapist helped me. So let your father speaks his fears if that's what he needs.

Stay positive

Better days are yet to come

Forough

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

Crying is part of the journey. As a father having to tell my children I  had cancer was the hardest thing I have ever done. Not sure of your age but your  writing makes you seem mature beyond your age. As others has posted above it's not a death sentence. No mortal can tell someone when they will die. You've come to a great place for research. As you read prior posts you will find answers of what's to come for the surgery. It was not pleasant at all but not as bad as had imagined. He will need help right after surgery and if no complications within a short time he should be back to a " New Normal". Ask any questions you may have here and you should have an answer soon. Try and relax. I am sure your father would not want you to be freaking out over something you have no control over. Sending good Karma and positive thoughts to you and your loved ones.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Thank you for getting me to well up and relive the personal hell I was in leading up to my surgery.  It was nearly 4 years ago today--July 10, 2014. The day we were set to leave for NYC, I told my wife I could not go.  I had not had any surgery (or even a broken bone) since I was an infant. 

Fear of the unknown is scary.  It is easy for me to sit here today and tell a newbie, or a newbie's child, not to be scared and don't worry.  But all I can say is that there are many here who were in the same situation as jedi, and we are still here!!  Coincidentally, I was 47 years old at the time of my diagnosis.  I don't drink at all.  I don't do any drugs.  I am in fairly good shape. Why me?  Why now?  What did I do wrong to "catch" kidney cancer?  These were the irrational thoughts of a guy who never had any health problems 4 years ago. 

I still remember hugging my kids before I left for the hospital.  My youngest son was 11 years old at the time. I tried to be strong as he was sobbing in my arms as I gave him a hug.  I broke down.  I told him to be strong for his Dad.

I was lucky.  My tumor was just under 3 cm, but it was in a bad location.  Surgery early Thursday morning, went home on Saturday.  I was walking 6 miles per day by Monday as part of my recovery.  Today, it is all a distant memory.

To jedi- whatever you do, take everything you read on the internet with a grain of salt.  You may not want to read too much.  Each situation is unique. Trust your father's doctor and the team.    Your father and the family will get through this.  He is lucky to have a son like you.

yellow lotus's picture
yellow lotus
Posts: 15
Joined: Feb 2018

Yes, forget about the internet, you can rely on information and advice given on this site. We are all pulling for your dad and your family. It will be all right. 

stub1969's picture
stub1969
Posts: 800
Joined: Jul 2016

strong memories of when I was diagnosed.  I was so worried about how my three kids would deal with it.  Fortunately, they held stong and really helped me and their mother.  From what I see and read, you definately make your dad proud.  

I know you recognize the seriousness of the situation.  Things will be moving along pretty quickly now.  Once he gets his surgery out of the way and his pathology comes back, a plan will be put in place.  Be open with your emotions, but try to stay strong. 

Keep us updated and we'll try to help.

Stub 

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

I was 39 when mine was found incidentally (you can read my story on my bio). I am a single mom with kids and in grad school, who has time for cancer! I had my neph in March and I am back to where I was at before surgery. I chose to see an Oncologist for my follow up because the Urologist wasn't a good fit for long term maintenance. You'll see a lot of advice out there, and everyone else has shared excellent advice and really helped support me through my whole process. Preparing for the surgery was scarier than recovery. I do still worry about it showing up again somewhere else, but I could get hit crossing the street too. What helped me the most was having supportive friends a family who rallied around me and allowed me the space to yell, cry, and process whatever whenever. It was all I talked about for a few weeks. I did online research in medical journals (but I have a medical background) and that gave me peace to understand the disease and process. It's different for everyone. Your dad will have to do what works for him. I also treated myself to acupuncture and massages etc in the week before my surgery and I have been seeing a therapist who specializes in medical trauma because our bodies remember even if our brains are checked out. He is SO lucky to have you, and I love that you are reaching out on these boards for support. Look at Smart Patients website, and there are also a few great facebook groups. 

Keep us updated and sending good thoughts! 

donna_lee's picture
donna_lee
Posts: 900
Joined: Feb 2009

to those who hear those words.  Shhhh-Kidney Cancer.  I remember what my family and friends went through.  My son had googled it and knew more than I did by the time I got home from appointments and work that day.  And 12 years ago, the stats weren't that great. Mine had metastasized to the liver and I was presenting with problems related to the liver and gall bladder.  Very uncommon.

Your dad is scheduled for surgery for the kidney cancer; and more than likely, the node or surrounding set will be removed and biopsied, also. The surgeon will likely look at other places within the abdomen, so expect Dad to be sore. Once that is accomplished, you can let him heal, help out when needed and be there to cheer him on.  He'll recieve his path report and then he can make decisions based on the Stage, type, etc.

We'll be here to encourage and cheer you along.  If everyone has posted a profile (as they should) click on the person's username to find out more about the individual cancer journeys.

Best wishes and Hugs to you all.

donna_lee

icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

I just said not real big and not real small as my way to put a decent spin on 7-8 cm.

 

 

icemantoo

BoondockSaint's picture
BoondockSaint
Posts: 241
Joined: Mar 2017

Jedi.......I’m so sorry u have to deal with this. Let me say one thing. “it’s okay to not be okay”. We have all been there in some capacity.

I’m a bit different in the fact that it was my wife who had the diagnosis. A year and a half later, after the smoke has cleared and our heads stopped spinning, we are okay. 

Keep your head up. Be strong when you have to and lean on friends and family when u need it. 

We are here if u need us.

Tapman63's picture
Tapman63
Posts: 137
Joined: Dec 2017

It's hard to do, but do your best on staying calm and focusing on the positive.  Your dad found out relatively early on and there's a good chance surgery may be all he needs.  The worry and emotions will drive you crazy.  I had my diagnosis just before this past Christmas. I remember breaking down crying in the grocery store thinking it would be my last Christmas.  I remember sitting on my front porch and crying when Queen sang "..I don't want to die..."  What I remember most is telling my son the news the day after Christmas because I didn't want to ruin the big day for him.  Try to stay off of Google research and ask questions here where real people have really been through the trauma.  We are all glad to share our experiences and this board is pretty much all that kept me sane in that crazy, scary unknown part of the journey.

Best wishes for you and your family!

Jim

AnnissaP's picture
AnnissaP
Posts: 631
Joined: Sep 2017

I know the unanswered questions can make us feel horrible. Best news is that he is having surgery to remove it!!!! I am sure he will do very well given his age and health. They found my tumor last year and I was only 38!!!! I have never smoked or anything either so unfortunately it does happen. I have learned, as you will, that this whole journey happens one step at a time. It would be nice to have the clear picture right away, but it doesn't happen like that. I wish you, your dad and family all the best. There will be a huge relief once it is removed xoxo

Allochka's picture
Allochka
Posts: 871
Joined: Nov 2014

Hello Jedi,

my husband was a non-smoker, non-drinker and aged 36 when diagnosed 3.5 years ago. At that time I was 4 months pregnant ith our first child (first succesfull pregnancy after years of infertility and 2 miscarriages). It was a scary time. Did I cry? Yes. But I didn't cry out of fear or self-pity. I cried angry tears in pure rage. I couldn't imagine a guy so kind-hearted, decent, and stoic like my husband dying a torterous cancer death so young. I remember telling my mom, who was totally stressed out - "calm down, he will gonna be ok, I'll cure him!". 

He is fine now, and our 3 year old daughter adores Star Wars.

Be a warrior for your father, be a jedi! Support him and your family. We, caregivers, also fight a huge fight. And with kidney cancer of that size we have all chances to win once and for all. If you need to cry - cry, it is fine. Just don't give up and be there for dad and family! 

Hugs,

Alla

thejediknight
Posts: 4
Joined: Jul 2018

Wow, hello everyone. It’s been a while since I’ve visited this thread and I’m so glad I did. For all of you that shared your stories, your support, thank you. It means so much to read through all the encouragement relating to my dad.

After a year+1month, my dad has finished chemo (8 rounds, 6 weeks each with 2 week breaks in between) on Sutent. He has recovered from his total nephrectomy and has a 20-inch scar on his belly in the shape of a hockey stick. He says he might get it tattooed to look like a lightsaber. His labs have all come back with steady improvement and his left kidney has been functioning beautifully from what his doctors can tell. None of his cancer has spread from what it looks like. He’s still worried about it going to his lungs, and it didn’t help that he recently developed a cough (that his doctor assured him was only allergies). He turned 48 this past January and has been working to lose weight on a low-carb diet, and has gone from ~325lbs to 290 in the span of a few months. 

Again, thank you all for your assurances. It was hard being away at college (I’m only 20) while his chemo and recovery had been ongoing, but forums like this have given me so much hope in an otherwise bleak situation. 

donna_lee's picture
donna_lee
Posts: 900
Joined: Feb 2009

See, your cying helped!!!  As it relieved your stress.

Re: his cough.  Was dad put on any blood pressure meds because of having one kidney?  If so, that could be the cause of the cough.  It's a side effect of ACE inhibitors; and also comes and goes with allergy seasons.  If that's his worst problem, he's doing great.

Hugs to all,

donna_lee

Bay Area Guy's picture
Bay Area Guy
Posts: 385
Joined: Jun 2016

That’s really good news on all fronts.  The worry about recurrence or spread is natural.  I had my little lesion taken out in June, 2016, and I can tell you that every year, starting in April or so, I get a little (and sometimes big) cough that convinces me it’s come back and spread to my lungs, and each year, all scans are negative.

Your dad sounds like a fighter and a survivor and I predict he’ll be telling iceman quality puns to you for years to come.

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

Jedi,

Great to have you follow this up now that its no longer a sudden, new threat to your father and his family.  You have obviously learnt a lot about what cancer does, not only to the patients but also to those around them.

And it is becoming a manageable disease.  I hope your experience will give comfort to anyone who receives a new diagnosis of RCC.

Good work, Best Wishes, 

Fred

donna_lee's picture
donna_lee
Posts: 900
Joined: Feb 2009

A friend's connection had found out they were going to have another baby boy.  She asked the five year old if he'd like to select a name.  He thought a while and finally came up with LUKE.  His mom like the name and thanked him.  Several days later, he went back to her and said he'd like to change it to R2D2.  She politely told him they thought they'd stick with Luke.

Hugs and smiles,

donna_lee

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