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32 years old newly diagnosed 2014

nsb748's picture
nsb748
Posts: 79
Joined: Feb 2014

Hi everyone,

Been lurking around since the beginning of the year.  A brief timeline of my diagnosis is below.

1/3/2014:  Went to family doc because of a testicle pain (thought it might be a vericocele)  Doc ordered an ultrasound to see what the problem was. 

1/4/2014: Had ultrasound, (no testicular issues).  They check the kidneys also to rule out stones and saw a mixed echogenicity mass. 2.5cm by 2.7cm.  Still not worried since the doc says cysts are common on the kidneys, but orders a CT with contrast to be sure. 

1/20/2014:  Had CT scan.  Doc says she will call as soon as she gets the lab report. (still not worried)

1/21/2014:  Doc forgets to call with results.  I get a call from scheduling lady asking for my insurance info.  She needs it to set up my appointment with the Urologic Oncologist!!!! (Fear, anger, panic, confusion ensue).  In case you were wondering, this is not a good way to find out that you most likely have cancer.

1/28/2014:  Meet with Urologist.  He tells me that my sore left ball back on 1/3/2014 was the luckiest thing that I have ever had happen to me.  (that sounds kind of depressing).  He also says that based on the size of the tumor alone, my prognosis is excellent.  He orders an MRI to determine the exact location of the tumor and plan his attack.  He schedules my MRI, and also schedules a consult/war council for 2/6/2014

2/1/2014: I am 6'4" 220 lbs and discovered that I barely fit in an MRI machine.

2/6/2014: Had my consult with the Urologist.  He was pleased with what he saw on the MRI.  The tumor is small and in an ideal location for a partial nephrectomy.  At that point he gave me a choice of an open surgery, or a robotic laproscopic surgery with the davinci machine.  Based on the the doc's experience (nearly 1000 open partials) vs 75 or so each for the robotic surgery guys, I went ahead and scheduled the open surgery.  I feel better about the more experienced doc actually getting in there and looking around. 

My surgery is scheduled for 3/6/2014 and my pre-surgery stuff on 2/27/2014.  The main problem is that I feel so paranoid now about my body.  I felt amazing at the beginning of the year.  I had quit smoking, and some of my cardio was slowly coming back.  It was awesome. 

Now I get this news and I constantly fear something is wrong.  Normal aches and pains become bone mets, headaches become brain mets, A cough while playing basketball becomes a lung met, etc. 

The worst part of all this is feeling betrayed by my body.  Who knows what else is lurking in there.  It's too bad you can't just get screened for everything. 

Anyway,

Nice to meet you all, and I enjoy reading your various stories of survival even if they do freak me out on occasion.

 

 

 

 

 

Djinnie's picture
Djinnie
Posts: 911
Joined: Apr 2013

Hi Nsb, 

I am sorry to hear your news, finding out you have cancer shocks you to the core. Feeling that your body has let you down big time is only natural.We can all identify with homing in on every ache and pain, worrying that it could be cancer. I think the way you discovered the diagnosis was terrible, but it sounds like you feel your in safe hands now with the Urologist. When your surgeon says 'with such a small tumour the prognosis from surgery is excellent',you should trust that. You were very fortunate to have caught it so early! Once your surgery is over you will get back on track, dont worry, right now you are still in shock!

Djinnie x

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Hi There,

I had the robotic surgery on Thursday and I feel really great and there is barely even a scar.  My first consotation was with a urologist who wanted to do the open surgery.  My lesion was really small, less that 2 Cm.  He felt it would be an easy surgery.  I had a second appointment scheduled for the following week with a doctor at Memorial Sloan Kettering in NYC.  When I told the first doctor who I was seeing for my second opinion he told me it was hard to compete with a doctor like Jonathon Coleman.  Do what you feel comfortable with but I am so glad I went robotic.  Did they tell you for sure it was cancer?  I was told my chances were 55% that is was malignant.  Im still not even sure yet.  I expect the pathology results soon.  I got so much support here on this board. I was driving myself crazy.  There are some really good people here who know what you are going through who are willing to help you through it.

Best of Luck and we are here for you.

-Diana

nsb748's picture
nsb748
Posts: 79
Joined: Feb 2014

Hello,

My Urologist said that there is a 10 - 15% chance that it is benign.  From talking to him, that percentage was based pretty much entirely on the size of the tumor.  He also said that based on his previous patients, my age is a little low for RCC as well.  Not unheard of, but  definitely lower than what he considered normal. 

Glad your surgery went well, and hopefully you end up benign!

I'm in the process of stockpiling kindle books, and movies on my ipad for after my surgery.  Might be time to pick up some new stationary hobbies.

 

DSFrey's picture
DSFrey
Posts: 63
Joined: Jan 2014

Its good to hear you are still feeling great!

DSFrey's picture
DSFrey
Posts: 63
Joined: Jan 2014

My robotic partial is tomorrow morning. I'm quite anxious to get it over with. Well not really over with, just move to the next stage in the process really.  There are alot of really helpful people on this board that can help keep you from driving yourself nuts. Good luck! 

 

 

 

nsb748's picture
nsb748
Posts: 79
Joined: Feb 2014

Oddly enough, My health insurance costs went up this year and I was joking around about needing to get my money's worth out of it.

Looks like I will be getting that, and then some. 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

OK, so you are another youngun joining this club.  Sorry you have to be here.   BUT, you got one of the few early possible symptoms.  The funky testicle is what got my attention as well.  But your's got found early... so try to relax, the fear is worse than the sugery.  Holler back at us any time you wish..

Ron

nsb748's picture
nsb748
Posts: 79
Joined: Feb 2014

GSRon,

Is that a Triumph Speed Triple I see in your avatar?

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

OK, look here for the answer...   http://www.youtube.com/watch?v=F2DJLVWZASw

Ron

Djinnie's picture
Djinnie
Posts: 911
Joined: Apr 2013

Hi DS, 

All the best with he op tomorrow, look forward to hearing from you soon. If you are anything like Diana, it will be just as you come off the operating table, lol! 

Djinnie x

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

DS, I'll be sending good thoughts your way tomorrow.  It has been said that the fear is worse than the surgery itself and that is so true.  You'll do fine.

Keep us posted!

 

Sindy

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Good Luck DSFrey!

Don't worry. Surgery was a piece of cake! I'm getting manicured and pedicured now.

let us know how you make out.

sending u good vibes! XO

kerrie75's picture
kerrie75
Posts: 20
Joined: Feb 2014

I am so jealous! Are you having any pain yet?

 

Kerrie

MMondi1
Posts: 11
Joined: Jun 2013

Your story is almost identical to mine from going in for testical pain to finding out from someone besides your doctor.  My tumor was 2.5 cm but I was unlucky that it was in a less than ideal location.  I was bumped up to 3a and into the high risk category.    The mental part is hard ecsp having cancer being in my 30's and 2 yo and new born at home.  I still drive my wife crazy because every little pain can make me wonder but that does get better. 

Your odds of never having to deal with this again will be great.

 The doctor still tells me my testicle pain was unrelated and that I should view my self as lucky instead of unlucky.

I just had a clean scan in December (21 months) and we are being blessed with a 3rd child in July.  Still a long way to go mentally but when I do go into a dark place I tell myself that maybe the dr was right about being lucky. What if they wouldnt have done that ct scan?

 

 

 

nsb748's picture
nsb748
Posts: 79
Joined: Feb 2014

DS,

Good luck with the surgery, not that you'll need it.  You'll be fine.

 

MMondi,

that is a crazy coincidence.  Glad you are doing OK now, and congrats on the child.  I have a 2 1/2 year old.  Its going to be torture to not be able to roughhouse with him and run around.  My sister's fiance will have sub in for me until I'm better. 

Looking at the upsides to my/our situation...

I should be able to rake in some serious donations for Movember this year.  Who could say no to me now?

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Hi Nsb,

Sorry for what you are going through!  I can't speak much about robotic vs hand assisted, as I didn't have an option.  Mine was a laparoscopic radical nephrectomy, meaning, doctor took the entire kidney.  My doctor told me about the Davinci method but did not think it was right for me.

What I can attest to is the emotional toll a cancer diagnosis takes on a person, and their loved ones.  Everything you say, I have said.  Everything you are feeling, I have felt.  Like you, my diagnosis was an incidental finding while having tests for something unrelated.  And, like you, I was not told in the traditional way wherein the doctor calls or sits down with patient and gives life changing news.  I had to read it for myself in the medical records I took home.  I think the radiologists exact words in the report was 'diagnosis of exclusion Renal Cell Carcinoma', in bold print mind you.  I can't wrap my head around why the ER doctor didn't share this news with me.  If he looked at my report, it couldn't be missed, as I said, it was in bold print.  Regardless, it was about 10 at night and I was just crawling into bed when I decided to look over my records before going to sleep.  Needless to say, sleep did not come for me that night.  And being that it was late night, I couldn't just pick up the phone and call the doctor.  So I fired up my computer and began my research.  Fear, anger, panic, confusion...I had it all.  That was quite possibly the longest night of my life. 

I am 9 months post-op and though I'm so much stronger, emotionally speaking, now than I was then, I still have days of doubt that the cancer isn't lurking somewhere else.  I've had pain in my right hip for two years.  Have never had it investigated.  Do I think it's mets? Depends.  I go back and forth in my head.  I convince myself that it must be because what else could it be, I'm only 49?  On the other hand, I tell myself 50 is just around the corner (June) so, it's probably just age related hip pain.  Depends on the day and state of mind.  It truly is an emotional toll like no other.

What has helped me more than anything is finding a true appreciation for how very lucky I was, and am.  My tumor was small compared to so many others, just 4.7cm.  It was Clear Cell RCC, stage 1 grade 2 and appeared to be fully contained with clear margins.  You see, I always knew I'd get cancer.  Maybe a sixth sense or just the fact that I have lost both parents and numerous uncles and grandparents to it, I figure it's in my genes.  With the exception of my dad who died from colon cancer, and his mom who died from stomach cancer, all of them died from lung cancer.  Now that I've had cancer, I will be regularly scanned, at least for the next 5 years, for lung cancer.  Not a bad thing.  My chances are very good that IF I have mets to the lungs or even a primary cancer in the lungs, it will be caught early, giving me at least a fighting chance; something none of them had.  So, in order to keep my sanity I've had to find something positive from an otherwise very negative situation. 

Don't get me wrong, I still have plenty of days that I psych myself out over an unfamiliar ache or the hip that's been hurting for two years now, or the swollen gland I found just last night, in my neck.  I could go on and on.  Surgery cured my body of the kidney cancer but surgery didn't heal my mind.  I have to do that.  And I am.  Slowly.  Or, at least I like to think I am.

Anyway, I'll be sending good vibes your way on the 6th.  I'm sure you'll do fine, it's a fairly routine procedure.  I hope you'll visit this forum often during your recovery and keep us posted on how you are doing.  There are really smart people here who come with years of experience, and I've learned so much from them.  In fact, this site has been my saving grace and the people I have met, I now call "my friends".  I'm still one of the newbies and, though I have learned so much about kidney cancer all I really have to offer is emotional support.  I leave the medical nitty gritty to the brainiacs like Ron, fox, Nano, djinnie, tillie, iceman and others like them, far more seasoned than I. 

Keep your chin up and you'll do just fine!

Sindy

foxhd's picture
foxhd
Posts: 2057
Joined: Oct 2011

almost anywhere. Sindy , you say you felt what nsb felt. So, just how is your left nut feeling these days?

NSB, it is not uncommon for pain to be felt in the left testicle. Unfortunately it is not always picked up as related to a kidney tumor. I believe it has something to do with the renal vein and how it affects the blood flow in the scrotum. Hence a vericosity or vericocele that causes pain. (this is off the top of my head from memory so it may not be 100%) It is an easy sign to miss. Most husbands refer to this as their wifes fault due to marital disuse atrophy. Mmondi, your doctor is wrong about this. It is a good heads up warning sign that something is going on in your kidney.

As always, the wait is the hard part.(nothing to do with marital disuse atrophy.) But as Sindy says, now there will be regular scans and you will be followed closely for a long time. That is great news. Look forward to your surgery. This is the best thing that you will ever do for yourself. Keep that in mind.

Everyone has alot of questions and doubt. Take time to read this forum and other peoples experiences. It will help you keep things in perspective. Some have had it really tough. Some pretty easy. But initially it is just as scarey for everyone. You will find strong committments for supporting each other. What goes around, comes around. We have plenty of Karma to share. It is amazing because the more it is shared, the more of it there is. Trust your caregivers and do us proud.

One more thing. You feel like your body is letting you down. I was a couple weeks from being 59. Life long jogger, exerciser. I had decided a few years earlier to get back into the best shape of my life before I died.(there was no premonition). Friday night I told my wife that I was feeling like I was in my 30's again. I felt awesome. Less than a couple hours later I was pissing blood and doubled over in pain. I was admitted to the hospital for IV pain control(oral meds wouldn't touch it.) and had my tumor removed a couple days later. No waiting for me. Thankfully. I had many ups and downs over the next couple years. Next month I will be 62. I am strong, fit and am jogging. Who'd a thunk it? Keep the faith.

Another biker on board huh? Ron is more than an average biker. He breaths racing. He'll fill you in.

Good luck DSfrey. You'll be fine. Look at the post op enthusiasm commuter mom has.

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Hey Fox,

I am feeling really well but I burst out laughing when I saw you asked Sindy how her testicle was feeling, and I felt the pain! LOL

-Diana

Jojo61's picture
Jojo61
Posts: 477
Joined: Oct 2013

Hi NSB

Good luck with your surgery. I had mine on December 2, 2013. I went to the doctor because my tummy wasn't feeling good and I felt a lump on my right side. Thought it might be my gallbladder. They sent me for an ultrasound and called me the next morning saying my kidney was "swollen" (yeah, to more than twice its size!!)  They sent me for a CT scan. When I checked at the receptionist desk she handed me a brown envelope to give to the technician - which I read while sitting in the waiting room. It said **Patient does not know! Please call us if you need more information. Large mass on right kidney. Likely carcinoma." I felt the bottom drop for a few minutes, but texted my husband who quickly googled and told me that kidney cancer can have great results. I had the scan and came home and googled away. When I went to the doctor for the results of my CT Scan, I found myself more or less consoling him! (my old doctor retired, and he was a new, young doctor and I found out at my next visit that I was the first person he had to tell that they had cancer. He never really did tell me. It was a good thing I read that report while waiting for my CT scan!!) He kept sayng "you're so young! You're so young!" Poor guy. Anyway I was bounced to a couple of specialists and then they finally sent me to the Superstar doctor at the next big city's university hospital. He removed my kidney via laparascopy. It was tricky surgery but he did a great job. It was Stage 3a, grade 2. I was very fortunate to have it found before it moved to Stage 4. I worry about pains,etc. But I have learned a lot from the wonderful people here. It is one step at a time. If something pops up, they deal with it with grace and courage. My first scan is coming up in March.

Stay relaxed and enjoy your down time! Keep us posted!

Hugs

Jojo

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

I believe I actually said "emotionally speaking", not physically speaking but, fair enough, fox.  I've been accused of having big balls on more than one occasion but, technically speaking, you're right, I cannot relate.  I guess if it's true that laughter is the best medicine then I don't suppose it matters if you're laughing with me or at me, as long as you're laughing. Wink 

 

Diana, my trip was wonderful!  Thank you for asking.  More than anything, we just needed away, alone time.  So, we paid high dollars for cruise only to hang out and do much of nothing.  We took long lazy naps each day, with our balcony door wide open.  It was perfect.  Now, I'm back in Ohio, working and hubby's at home, in Oklahoma, also working.  Back to the rat race that is my life...both happy and thankful to be here!

Have a great day!

SIndy

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Sindy,

How was the trip?

-Diana

cran1's picture
cran1
Posts: 129
Joined: Mar 2013

Hey nsb your story is familiar! Hang in there we all go through the"every little ache and pain thing" I had the partial but to each his own. Just take it easy after surgery For a few days..

sblairc's picture
sblairc
Posts: 188
Joined: Feb 2014

Hi. My husband was also relatively young for cancer at 46 (now 47). I think this is a great board to be around since I stopped lurking earlier this month.  I would totally base the decision about robotic based on the # of times the surgeon has used the device. My husband had a radical nephrectomy via Davinci robot surgery, but we knew the surgeon had MANY surgeries under his belt. My husband is also 6 4 and your comment about the MRI machine cracked me up since he had the same experince before. Being a tall individual in the hospital after his surgery provided much comic relief during hard times, especially when he stood up for the first time after the surgery in front of our teeny tiny nurse that had only seen him in bed covered up. She literally jumped back away from him. It was hilarious. 

You are a very lucky man to have found your cancer early, best of luck to you as you move forward. 

Darron's picture
Darron
Posts: 242
Joined: Jun 2013

sorry you had to join the club, glad they caught it early. To address the "constant fear" thing. I was diagnosed in Oct 2012, radical laproscopic in Oct 2012. I am stage IV, I had mets to my lungs and a tumor in my remaining adrenal gland. Thanks to Nivolumab trial, I am now "no evidence of disease"

after shoveling snow and lifting some weights on Thursday, I felt a lump under my arm pit where there are many lymph nodes. It completely scared the crap out of me. I was scheduled for an infusion on Monday, so I knew my wait wasn't to long to get it checked out By my oncologist. By the time I saw him, the lump had completely gone. his comment was that at 44 and having little exercise over the last year an a 1/2, it was very dangerous to shovel snow. Not because of cancer, but because of a heart attack ( he was half joking about my age and lack of shoveling experience in NC). My point is this, you will now always think every ache and pain is cancer or a new met. It takes getting used to and fades a little, but it isn't necessarily a bad thing. It keeps you on your guard against it. If you have an odd pain, note it and have your doc check it out, but no need to freak, if you are diligent with scans and appts, you will most likely find anything in a scan before you feel it.

in you notes above, you mentioned bone mets and lung mets. You didn't mention if they checked lungs and bone already. Make sure they do/ or good if they already did. 

It is a new life you are adjusting to with cancer,  but with the tumor being caught early, there will be plenty of new life!

be thankful for every day and enjoy it.... Every headache isn't a brain met, life still throws headaches at cancer survivors.

keep us posted in surgery. Keep the cardio up prior to surgery, it will help.

 

thaxter's picture
thaxter
Posts: 83
Joined: Jan 2014

That's the first I had ever heard about testicular pain.  I had some minor swelling and pain in my left testicle last summer which I never mentioned to the docs.  It was the other long running symptoms of unexplained weight loss, anemia, and extremely poor appetite that finally led my PCP to send me for a CT scan in August.  Open radical nephrectomy was the only choice my urologist gave me so recovery was a little longer but I hardly remember that month now. 

I'm also a newbie here but I've learned more here in a few weeks than I have in months surfing the web for information on kidney cancer.  This was already going to be a transition year for me--turning 65, retiring after 43 years of govt service, figuring out what to do with the rest of my life.  The cancer has certainly put that into focus.

We should all buy a lottery ticket today--maybe someone here will win the $400 million.  It's about time for a little good luck.

nsb748's picture
nsb748
Posts: 79
Joined: Feb 2014

Thaxter,

That sounds like a plan. Tropical islands are just what I need to clear my head, and some lottery money would make that a little easier on the wallet.

Darron,

Unfortunately I will always be well seasoned when it comes to shoveling snow since I live in the Cleveland area. It's 40 degrees now, and I feel like we are having a heat wave.

Twinthings,

It is amazing how doctors (some of the most brilliant-minded people in the world) and their employees could learn a thing or two about customer service from the fast-food places near me. None of us should find out test results in these ridiculous ways.

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

I'm just 2 hours south of you, in Marietta.   I work here, but actually live in Oklahoma so, I'm commuting ALOT!!  I often feel like I'm in the air more than on the ground.  I must say, Ohio is a beautiful state, dispite the ugly weather.  And I've met the nicest people! 

 

Enjoy this heat wave!

gingersnaps
Posts: 25
Joined: Jul 2013

You work so close to Cleveland clinic, if you don't mind we asking, why didn't you go there for your kidney surgery?  They are number 1 in urology in this area. My son went there and when we go for tests and scans we get the results the same day.

 

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Hi Gingersnaps!  I live on the outskirts of Oklahoma City, Oklahoma.  I only come here, to Ohio, for work.  On 8 weeks, off 1 week.  So, natually I wanted to have surgery at home surrounded by hubby and family and friends.  Here in Ohio, for the most part, I just have co-workers.  That's it. 

Besides, despite my personal experience with some of my doctors, Oklahoma has it's share of cutting edge technology, surgeons and facilities.  My surgeon/urologist is THE one to see in terms of experience and skill, so I was in very capable hands.  As a matter of fact, the kidney transplant center at Integris Baptist Medical Center (where I had my surgery), in OKC, was opened under his direction, many years ago and he has served as the surgical director from the very beginning.  He also serves as the primary surgeon and surgical director for the Nazih Zuhdi Transplant Institute.  Unfortunately, all too often, some doctors are so vested in medicine and finding cures that they forget they are dealing with people...who have feelings and fear and anxiety and questions.  So, though my doctor could certainly have better communication skills, I am pleased with the care I have received.

I gave up on ever getting same day results, from ANY of my doctors.  I have learned to appreciate it though, knowing that if something were really amiss with my results, I'd get that call much sooner.  So, I wait more patiently now. 

I have heard wonderful things about the Cleveland Clinic and if I lived in the area, I'm sure that's where I'd want to be.

You must live in the area too, huh?  How is your son doing? 

Sindy

gingersnaps
Posts: 25
Joined: Jul 2013

He is doing great. Down to scans yearly. Next is in May, we are in pa. About 4 hours away.For the surgery we went the night before. It will be 2  years in Aug. T1a chromophobe. It was a shock,thought maybe just a cyst put ultrasound  questioned it. I have faith he will be ok.  I did question the dr. about the grade 3 but he assured us that chromophobe is not an agressive subtype but the will watch it closely. 

nsb748's picture
nsb748
Posts: 79
Joined: Feb 2014

The Cleveland Clinic is a great facility.  Unfortunately, a lot of our other hospitals live in it's shadow even though they are also great. 

A lot of the surgeons around here actually work at several of the local hospitals.  I chose to schedule my surgery at Summa in Akron (Akron City hospital).  I have a couple friends who are doctors and nurses there who can stop by and hang out during my stay. 

I would imagine that for the most part, if this disease is caught early, the surgery is pretty straight forward and doesn't really involve anything groundbreaking.  Kind of like a C-Section for a really ugly baby

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