25 Years Old with Tumor on Kidney

ClaudiaSM
ClaudiaSM Member Posts: 1

Hello,

I am 25 years old and will have surgery in three weeks to remove a golf ball sized tumor on my kidney.

It all started 3 months ago. My first day back to work after my wedding and honeymoon I fainted. My blood pressure was extremely high (190/110) and I went to the ER. I've never had blood pressure issues. After a month of blood work and scans one of the last things to check was my kidneys. I had an ultrasound of my kidneys and an hour after the ultrasound my doctor called me and asked me to come in right away. 

She told me they found something and it was most likely cancer. First thought - CANCER?!?!? Second thought - I'm only 25??? Fast forward, I saw a urologist, got a CT done and confirmed the solid golf ball sized tumor on my kidney. Stage 1. Surgury is scheduled to take it out in three weeks.

I know I am extremely lucky to have found the tumor when it was so small and had not spread. I know I will not die and other people have received much worse diagnosis. I am struggling with waiting for the surgery. I don't know how I am going to get through the next three weeks. I work as a project manager for a large company doing fast paced work. I typically work 50-60 hrs per week. Since finding out about the tumor I've been on a Rollercoaster ride of emotions. Last week I was motivated and enjoyed having work as a distraction. This week I feel like I can barely get out of bed. I just feel so stressed. How can this be happening when I'm so young? What does this mean about my health for the rest of my life?

Just wanted to reach out and see if anyone has had a similar experience to any of this. Glad I found this board!

Thanks - Claudia

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Too young.

    Claudia,

     

    Sorry you had to join so young. Even us oldies were shocked at the diagnosis. The good thing is that our younger members seem to have a faster and easier recovery, but do not overdue it at first. You seem to have a realistic handle on what is ahead. None of us were excited about the surgery especialy  when it comes out of no where. You will find good advice and comfort here.

     

     

    Icemantoo

  • medic1971
    medic1971 Member Posts: 225 Member
    Waiting is the hardest part...

    Welcome to our community and I am sorry you are here, but there are good people here that are smart and caring...

    I waited 3 months before I had surgery and that SUCKED.  Xanax became my new friend.  I mainly used it at night.  Ask your doctor for something to help with anxiety.

    If this mass is cancer, and you won't know for sure until it's out and you have the path report back, then it's possible that you've had it for several years.  It grows very slowly (0.3 to 0.4cm a year) and in 10 or maybe even 15 years from now you could have been facing a much different situation.

    I am a big proponent of second opinions.  This mass is not something that has to come out emergently.  If you have not done so then I would recommend getting a second option from a board certified urologist who has a lot of experience with this type of procedure, you have time.

    Don't pay attention to the survival rates you find online as they are not very accurate.  People with kidney cancer tend to be older and may have other serious health conditions. Therefore, the percentage of people surviving the cancer itself is likely to be higher.  From the research I've done I would put stage 1 at greater than 98%.

    I found this video while I was researching kidney cancer and it gave me a lot of comfort and answered a lot of question.  It's funny because the doctor giving the presentation turned out to be my urologist at MD Anderson.  That's where I went for a second opinion and treatment.  

    https://www.youtube.com/watch?v=NIzkLgjoE7U

    Claudia, I am an RN with over 20 years of clinical experience, mainly ER, so now I am going to give you my ER nurse speech...  Your blood pressure concerns me a great deal and so does the number of hours you are working.  I would recommend getting an automatic bp cuff and keeping a blood pressure log.  I am not trying to scare you but if you have long term uncontrolled high blood pressure you are not going to have to worry about kidney cancer.

    If you have any question please feel free to post them or you can message me too.  

    Good luck!

    Jason

  • Allochka
    Allochka Member Posts: 1,072 Member
    medic1971 said:

    Waiting is the hardest part...

    Welcome to our community and I am sorry you are here, but there are good people here that are smart and caring...

    I waited 3 months before I had surgery and that SUCKED.  Xanax became my new friend.  I mainly used it at night.  Ask your doctor for something to help with anxiety.

    If this mass is cancer, and you won't know for sure until it's out and you have the path report back, then it's possible that you've had it for several years.  It grows very slowly (0.3 to 0.4cm a year) and in 10 or maybe even 15 years from now you could have been facing a much different situation.

    I am a big proponent of second opinions.  This mass is not something that has to come out emergently.  If you have not done so then I would recommend getting a second option from a board certified urologist who has a lot of experience with this type of procedure, you have time.

    Don't pay attention to the survival rates you find online as they are not very accurate.  People with kidney cancer tend to be older and may have other serious health conditions. Therefore, the percentage of people surviving the cancer itself is likely to be higher.  From the research I've done I would put stage 1 at greater than 98%.

    I found this video while I was researching kidney cancer and it gave me a lot of comfort and answered a lot of question.  It's funny because the doctor giving the presentation turned out to be my urologist at MD Anderson.  That's where I went for a second opinion and treatment.  

    https://www.youtube.com/watch?v=NIzkLgjoE7U

    Claudia, I am an RN with over 20 years of clinical experience, mainly ER, so now I am going to give you my ER nurse speech...  Your blood pressure concerns me a great deal and so does the number of hours you are working.  I would recommend getting an automatic bp cuff and keeping a blood pressure log.  I am not trying to scare you but if you have long term uncontrolled high blood pressure you are not going to have to worry about kidney cancer.

    If you have any question please feel free to post them or you can message me too.  

    Good luck!

    Jason

    Hello and sorry to welcome

    Hello and sorry to welcome you here. Iceman and Medic has summed up everything greatly, I have nothing to asd except my support.

    There are some younger people here, including my husband (diagnosed at 36). With tumor of your size, prognosis is excellent!

    no wonder you are stressed and depressed, but soon it will be over, and you'll restart your life with healthy kidneys!

    Good luck with your surgery, and come here to vent!

    Alla

  • jason.2835
    jason.2835 Member Posts: 337 Member
    No 2 Ways About It... It SUCKS

    Claudia,

    I had to wait about a month for the surgery and, looking back on it, I actually remember very little of that month.  I tried to document my experiences through a video blog that I mostly keep for myself and in watching those videos I almost feel like I'm watching another person.  I am usually a positive person but that month was probably the worst of my life.  There's no other way to look at it.

    You've gotten a bombshell diagnosis.  You are trying to be strong for your family and friends.  You are trying to carry on at work despite your feeling like you don't want to worry about anyone else.  There is still overwhelming fear despite many doctors telling you that you will be alright.  It will take a long time for that to sink in.  Trust me, we know.

    But one thing I DO remember is how quickly the time went, and how waking up the next morning after the surgery (not that night after, that night you will feel like sh**) was almost like a weight had been lifted.  The tumor was OUT and not a part of you anymore.  It's strange how before you know it's there, you would never KNOW it's there... But once you DO know it's there you ask yourself how you could have ever missed it.  Even though there's nothing to miss.  It's a complicated and emotional set of thoughts that will wring you out and hang you out to dry.

    But it does get better.  Once the tumor is out and some times goes by, you will feel better.  There is NOTHING that can totally erase the emotional scars of a cancer diagnosis.  But there is also nothing that will make you feel better than to get it outside of your body.  Focus on that, let time do it's work and then we all move on.  In time.

    Good luck, and be sure to pop on when you have those moments.  They will happen.  But it will be alright.

    - Jay 

  • NewDay
    NewDay Member Posts: 272

    No 2 Ways About It... It SUCKS

    Claudia,

    I had to wait about a month for the surgery and, looking back on it, I actually remember very little of that month.  I tried to document my experiences through a video blog that I mostly keep for myself and in watching those videos I almost feel like I'm watching another person.  I am usually a positive person but that month was probably the worst of my life.  There's no other way to look at it.

    You've gotten a bombshell diagnosis.  You are trying to be strong for your family and friends.  You are trying to carry on at work despite your feeling like you don't want to worry about anyone else.  There is still overwhelming fear despite many doctors telling you that you will be alright.  It will take a long time for that to sink in.  Trust me, we know.

    But one thing I DO remember is how quickly the time went, and how waking up the next morning after the surgery (not that night after, that night you will feel like sh**) was almost like a weight had been lifted.  The tumor was OUT and not a part of you anymore.  It's strange how before you know it's there, you would never KNOW it's there... But once you DO know it's there you ask yourself how you could have ever missed it.  Even though there's nothing to miss.  It's a complicated and emotional set of thoughts that will wring you out and hang you out to dry.

    But it does get better.  Once the tumor is out and some times goes by, you will feel better.  There is NOTHING that can totally erase the emotional scars of a cancer diagnosis.  But there is also nothing that will make you feel better than to get it outside of your body.  Focus on that, let time do it's work and then we all move on.  In time.

    Good luck, and be sure to pop on when you have those moments.  They will happen.  But it will be alright.

    - Jay 

    Hereditary kidney cancer

    Hi Claudia,

    I'm so sorry you have had to join our club and at such a young age.  It sounds like your tumor is relatively small which means that there is a very good chance that the surgery will be all you will ever need and can eventually, mostly put this behind you.  But, having said that, still do take very seriously the need for followup scans because it can can recur years later.  Even if the surgeon tells you after the surgery that he "got it all", still get followup scans.  If he says you don't need, them, find another doctor that will order them.  Urologists are experts at removing kidneys and tumors, but most of them are not experts at kidney cancer and how it behaves.

    Hereditary types of kidney cancer often start at a young age, so you might want to contact the NIH/NCI to see if they are interested in doing any genetic testing.  The hereditary types can behave differently from the others. They have experts in the hereditary types of RCC.  If you are interested, contact their genetics counselor, Lindsay Middleton at 301-402-7911.

    I know you have just boarded a roller coaster.  I was a workaholic before my diagnosis and found it very hard to focus at work.  Fortunately, they were very understanding about it and they also let me work from home sometimes.  It took me a few months to really get my focus again, but everybody is different with how they handle it.  

    Do you know if they are planning to do a partial or radical nephrectomy?  There are pros and cons to both.  You want to be sure you have a surgeon with a lot of experience at nephrectomies and it never hurts to get a second opinion.

    Do you have short term disability insurance at work?  How long did the surgeon say it would be before you could return to work?

    Come here whenever you feel the need to express your feelings, vent, ask questions, or anything.  The people here are very supportive and they have brought me back from the edge more than once.

    Kathy

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Hi Claudia. Welcome to our

    Hi Claudia. Welcome to our forum - and congratulations on your recent marriage!

    You must be reeling from all your recent events. As others have mentioned - waiting is the hardest part. I had a 13cm tumor and was bounced from nephrologist to urologist to uro-oncologist and wound up waiting 2 months before the surgery. However, it all worked out, and I felt eurphoric, once the tumor was removed.

    It is especially scary when you get this news at your age.  However.... I know of someone who had a football sized tumor...and he wasn't 30 yet. He is now over 40 and doing extremely well.

    So try not to worry too much. You will do great!

    Keep us posted and don't be afraid to come here to vent, ask questions and get great information.

    Hugs,

    Jojo

  • Claudia, sorry you have to

    Claudia, sorry you have to join our club, but you already have a great perspective.   You will be fine.  The waiting is the hardest part.  I was diagnosed in early May, and I originally was going to schedule my surgery for September, then I changed my mind, but I still had to wait until mid July.  I actually needed the time to get my work and other affairs in order.  I had not found this site prior to surgery, and boy did I wish I had found it.  I was a mess the week and days prior to the surgery.  I am a patent attorney in a small firm, and I was able to get back to work about a week after the surgery.  I would not recommend going bac to work that soon--I can do most of my work remotely by logging in through home.  It is normal to be on a bit of an emotional roller coaster. 

  • mrou50
    mrou50 Member Posts: 389 Member
    Sorry

    Claudia sorry you had to join but hang in there, stage 1 is a good thing.  As for anxiety just the word cancer does that hang in there and vent when you need to either with family, friends, and most especically with us, we have all been there.  Make sure you get a good oncologist to work with.

     

    Mark

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    mrou50 said:

    Sorry

    Claudia sorry you had to join but hang in there, stage 1 is a good thing.  As for anxiety just the word cancer does that hang in there and vent when you need to either with family, friends, and most especically with us, we have all been there.  Make sure you get a good oncologist to work with.

     

    Mark

    I can only imagine how

    I can only imagine how stressful your life has been. Given your work load and blood pressure issues, maybe it has a way of saving you. Often this type of cancer if found while looking for something else.

    We'll stand along side you if you like and help you get through all this.

    You do know you'll not be able to exercise for at least a month except walking AND you won't be work for awhile too. You'll need to get on a leave of absense, short term disability for a bit. Remember your insides needs to heal.

    BUT you WiLL get through this and that c=word will be out of you!! THAT wil feel much better.

    Sending you healing thoughts and hugs,

    Jan

  • foroughsh
    foroughsh Member Posts: 779 Member
    Hello and sorry you had to

    Hello and sorry you had to join us so young, I was 36 once I got diagnosed with 10 cm tumor meaning I've had it probebly since my 24. It sucks!

    The good news is you're stage 1 meaning all you need is a neph and then hopefully nothing but follow up. Neph is'nt easy surgery but if compared with many of other cancers which need surgery, radiotherapy, chemotherapy,..... Seems much easier. The  other good news is your age, younger means stronger and healtheir so you can have easier recovery than many others with the same diagnosis. The worst time is the waiting, so do whatever which can distract you from overthinking about all whatifs, meanwhile prepare what you'll need after coming back from hospital, foods, comfortable chair, someone to help you walk or help you do your routine works, finish your unfinished jobs at work so they won't call you when you need no call from work, read about good diet for patients with kidney's disease, and find out how you should chang your diet(low sudiom,low protein) for a long healthy happy life ahead of you.

     

     

  • Kallon74
    Kallon74 Member Posts: 1
    Sorry to hear that you were

    Sorry to hear that you were diagnosed so young. i am 33 and just had my surgery in January.   I found out about my 5cm mass by accident when they were looking into my liver due to my bilirubin being slightly high in blood work.  I had a prior ct scan 2 years and a week before that ct scan for kidney stones that showed no mass.  I waited 5 months for my surgery to come around and experienced the same rollercoaster and wanting to surgery to come quicker to get the mass out of me.  The recovery is very quick and I went back to work after 3 weeks.  Pathology showed it was stage 3...go figure

  • HopefulBeliever
    HopefulBeliever Member Posts: 4
    27 years old stage 2 kidney cancer

    Hello Claudia and hello to everyone on this board!

    First and foremost, Claudia you are not alone in how you feel and are thinking especially in regards to your age. I was diagnosed with stage 2 renal cell carcinoma just three months ago, January 12th to be exact. There were no prior signs. I woke up that morning and felt a sharp pain in my left side and back followed by extreme nausea and vomiting. I drove myself to the ER, still trying to figure out how I made it. The result was a CT scan showing my left kidney was 3x the size of my right kidney. The doctor wasn’t certain whether it was cancer or not but based off his recommendations I thought the safe option was to remove my kidney (radical nephrectomy). Three days later my kidney was removed and about 2 days after that the doctors confirmed from the biopsy of my kidney that it was indeed cancer. It’s been a little over two months now and I am proud to say that I am cancer free as the cancer didn’t spread outside of my kidney. What people are saying about recovering being fast if you are younger is true in my case. I was back to working out and running within a month as I felt fully recovered as if nothing even happened. Thankfully nothing spread outside of my kidney and there was no need for chemo or anything. Truly blessed!

    I’m in the Army and was an All-American track athlete in college so trust me I too was totally SHOCKED when the doctor said I “might” have cancer…at 27? What! I don’t’ smoke and only drank socially but actually quit months before getting the news. No family history kidney cancer and since surgery I had a genetics test conducted which came back negative which was good to know for my older brothers and parents health concerns.

    What got me through and continues to get me through this journey is my faith in God, thinking positively, and the loving support of my wife and family. I will continue to monitor my progress and update this board on the results on my follow-up CT scans.

    This board/site is amazing and I’m so glad I found it today. I have a hard time talking to people about what is going on with me because I feel like my friends, family, and coworkers just can’t relate. Glad that I can come here to share my thoughts and experiences with fellow survivors! The challenge I struggle with that maybe someone here can help me with is not knowing what caused this. I thought I was a healthy young man doing all the right things in regards to my diet and fitness. It is hard for me to accept the answer that sometimes it just happens for no reason because if this is true how would I stop it from happening again. All I can do is trust that God will handle this challenge for me.

    Take care everyone.

    - Dom

  • hardo718
    hardo718 Member Posts: 853 Member

    27 years old stage 2 kidney cancer

    Hello Claudia and hello to everyone on this board!

    First and foremost, Claudia you are not alone in how you feel and are thinking especially in regards to your age. I was diagnosed with stage 2 renal cell carcinoma just three months ago, January 12th to be exact. There were no prior signs. I woke up that morning and felt a sharp pain in my left side and back followed by extreme nausea and vomiting. I drove myself to the ER, still trying to figure out how I made it. The result was a CT scan showing my left kidney was 3x the size of my right kidney. The doctor wasn’t certain whether it was cancer or not but based off his recommendations I thought the safe option was to remove my kidney (radical nephrectomy). Three days later my kidney was removed and about 2 days after that the doctors confirmed from the biopsy of my kidney that it was indeed cancer. It’s been a little over two months now and I am proud to say that I am cancer free as the cancer didn’t spread outside of my kidney. What people are saying about recovering being fast if you are younger is true in my case. I was back to working out and running within a month as I felt fully recovered as if nothing even happened. Thankfully nothing spread outside of my kidney and there was no need for chemo or anything. Truly blessed!

    I’m in the Army and was an All-American track athlete in college so trust me I too was totally SHOCKED when the doctor said I “might” have cancer…at 27? What! I don’t’ smoke and only drank socially but actually quit months before getting the news. No family history kidney cancer and since surgery I had a genetics test conducted which came back negative which was good to know for my older brothers and parents health concerns.

    What got me through and continues to get me through this journey is my faith in God, thinking positively, and the loving support of my wife and family. I will continue to monitor my progress and update this board on the results on my follow-up CT scans.

    This board/site is amazing and I’m so glad I found it today. I have a hard time talking to people about what is going on with me because I feel like my friends, family, and coworkers just can’t relate. Glad that I can come here to share my thoughts and experiences with fellow survivors! The challenge I struggle with that maybe someone here can help me with is not knowing what caused this. I thought I was a healthy young man doing all the right things in regards to my diet and fitness. It is hard for me to accept the answer that sometimes it just happens for no reason because if this is true how would I stop it from happening again. All I can do is trust that God will handle this challenge for me.

    Take care everyone.

    - Dom

    Hopeful Believer

    First, welcome!  My goodness, that's quite a story.  You must have an angel watching over you.  Not sure anyone has answers for what the cause is, but you sure are lucky it was found in time, as was I.  Hopefully you will have a long happy and healthy life ahead of you.  Is your doctor a urologic/oncologist?

    God Bless,

    Donna~

  • todd121
    todd121 Member Posts: 1,448 Member
    Hi. Welcome.

    Sorry you have this happening. I can only imagine you would be shocked.

    Given your age/gender combination, I have to echo Kathy's advice regarding genetic testing for hereditary kidney cancer. It's a slightly different disease and has been very well studied at NIH. Treatment can be different than the rest of us. It might be worth looking into sooner rather than later. If you can find a medical oncologist that specializes in RCC, you should be able to get in for a second opinion and soon. Many have a policy in situations such as yours to get you in within a few business days.

    I know the size of the tumor is a typical Stage 1, but keep in mind that they cannot tell the stage, aggressiveness, or subtype of cancer until they get the mass out and look at it under a microscope. The staging is not based only on the size. Also, there are different types of kidney cancer. In fact, they can't usually even say for sure it's cancer until they get it out.

    In any case, I wish you the very best. Please keep us up to date.

    Todd

  • HopefulBeliever
    HopefulBeliever Member Posts: 4
    hardo718 said:

    Hopeful Believer

    First, welcome!  My goodness, that's quite a story.  You must have an angel watching over you.  Not sure anyone has answers for what the cause is, but you sure are lucky it was found in time, as was I.  Hopefully you will have a long happy and healthy life ahead of you.  Is your doctor a urologic/oncologist?

    God Bless,

    Donna~

    Hey Donna,Thanks for the

    Hey Donna,

    Thanks for the welcome. I have seen two doctors regularly since going into the hospital back in January. I see a nephrologist (my surgeon) and a oncologist (my cancer specialist). Both checked out my CT scan and told me their assessments and their recommendations. I definitely have an angel or two on my team, sounds like you do as well ;)

    God bless you too and have a nice evening!

    - Dom