32 years old newly diagnosed 2014

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Comments

  • sblairc
    sblairc Member Posts: 585 Member
    My husband was 47

    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
    Darron Member Posts: 310 Member
    Constant fear thing

    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.

     

  • twinthings
    twinthings Member Posts: 409
    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.

    fair enough fox

    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

  • thaxter
    thaxter Member Posts: 124
    Another missed symptom

    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
    nsb748 Member Posts: 89
    thaxter said:

    Another missed symptom

    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.

    Thaxter,

    That sounds like a

    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
    twinthings Member Posts: 409
    nsb748 said:

    Thaxter,

    That sounds like a

    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.

    Cleveland, you say?

    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
    gingersnaps Member Posts: 67 Member

    Cleveland, you say?

    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!

    twinthings

    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
    twinthings Member Posts: 409

    twinthings

    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.

     

    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
    gingersnaps Member Posts: 67 Member

    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

    cleveland

    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
    nsb748 Member Posts: 89

    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

    The Cleveland Clinic is a

    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

  • kerrie75
    kerrie75 Member Posts: 20

    Good Luck DSFrey!
    Don't

    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

    Can you say Jealous

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

     

    Kerrie