32 years old newly diagnosed 2014

Djinnie said:

Cancer diagnosis!

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

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

DSFrey said:

Been there, about to do that.

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! 

 

 

 

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

nsb748 said:

Oddly enough, My health

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. 

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

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

DSFrey said:

Been there, about to do that.

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! 

 

 

 

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

twinthings said:

It's an emotional toll

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

Sindy,

How was the trip?

-Diana

foxhd said:

Seems I can find a laugh

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.

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

nsb748 said:

GSRon,
Is that a Triumph

GSRon,

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

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

Ron