New here looking for support

Smitty65

Hello All,

 

I was diagnosed in May of this year with a pretty large growth in my right kidney (2a I think).  The tumor was contained within the kidney no lymph nodes, viens, or anywhere else by the ct scans and pathology post surgery. I was very blessed to have caught it so early.  My 3 month scans, chest xrays, blood and urine tests all came back negative as well.

But now my problems have begun.  I am a 36 year old father of 2 wonderful little girls and I cant stop thinking about dying.  I constantly battle with thoughts of cancer in other parts of my body.

I think that the anxiety has caused me to lose a good bit of weight and develop some digestion problems. Which in turn cases me to believe that I have other types of cancer. 

 

I hoping that I am not the only one that has gone through this and just need support from people that have gone though the same.  I feel like everyone I talk to has no idea what I'm going through so I tune them out when they say everything is going to be fine (even my doctors). Prayer is about the only relief I get and sadly that is often short lived.

 

Thanks for listening it feels good just to get it out.

Jan4you

Sorry for all you are going

Sorry for all you are going through. Losing weight due to anxiety is not uncommon and shows us just how powerful our mind-body conneciton truly is. Thinking of dying is also a sign of anxiety. There is help for this. I would suggest you may start with telling your primary doctor and seeing if you may need an anti-anxiety med for awhile.

Remember too this word: F.E.A.R=False Evidence that Appears REAL! CHOOSE not to allow fear to rule your thinking!

Maybe see a therapist for awhile. Also do not forget we all are fighting off cancer cells, even those who never get cancer. So you ARE fighting this and winning.

My last recommendation is that our brains NEED the proper nutrition to function optimally. Make sure you are getting proper food and rest. No sugar, processed foods and do a gentle detox to assist the liver/kidneys in ridding your body of toxins.

Yes, our bodies react to our thoughts. Change those thoughts and use your faith to guide you through this too. Your children will continue to be your inspiration. See your doctor ok?

Warmly, Jan

icemantoo

We support you

Smitty,

All of us here are ready to support you. All of us are either Kidney Cancer Survivors or caregivers. Myself 11 years last August,

You state that they caught it early and the sucker was pretty large. Others and myself would feel more comfortable trying to help if you told us the size of the little sucker (tumor). That way we can give you a helpful and honest basket of support.

 

Icemantoo

Bellweather

Time to live

Smitty, most of here have experienced these thoughts, you are not alone.  Your diagnosis,  while unfortunate, is not a death sentence.  there are others here witn much more experience than me, but your future has good odds of disease free living.  Keeping a good check up schedule is imperative as there is always a chance for future issues.  There is no good that comes from dwelling on the unknown,  there will be plenty of time to worry WHEN and IF something occurs.  Please take the time to live in the moment with your two beautiful daughters.  I have three beautiful daughters and work hard every day to stay in the moment with them and everyone else that is part of my life.

Prayer is always a great calming factor in the life of a cancer survivor.  There are meds that your doctor can prescribe for your anxiety as well.  I am keeping you in my prayers.  As hard as it may seem now, you can begin to manage your thoughts better as time passes.  keeping yourself busy to avoid idle thought helps.  Hang in there buddy, we are all here for you.

Smitty65

icemantoo said:

We support you

Smitty,

All of us here are ready to support you. All of us are either Kidney Cancer Survivors or caregivers. Myself 11 years last August,

You state that they caught it early and the sucker was pretty large. Others and myself would feel more comfortable trying to help if you told us the size of the little sucker (tumor). That way we can give you a helpful and honest basket of support.

 

Icemantoo

Size

Sorry it was 10 cm.

 

Thanks so much for the quick responces.  Im seeing a therapist although I think that I may need to switch. She deals more with teenagers and I just went to her because she could get me in.  I live in the Cleveland area so if anyone has a recommendation it would be very welcome.

Smitty65

Thank you all so much

I have to admit I have been stalking this Web page for a while now. The support  I saw in this group is amazing. So many cancer websites I saw were negative and dealt with the initial diagnosis as opposed to living positively after treatment. 

Today for some reason has been worse then most.  My back and my surgery scars have been aching since the weather turned so I currently have myself convinced I have pancreatic cancer despite the ct scans,  xrays and blood tests to the contrary.  I have to start believing the science and stop listening to the crazy thoughts in my head.  

Jamie1.3cm

Bellweather said:

Time to live

Smitty, most of here have experienced these thoughts, you are not alone.  Your diagnosis,  while unfortunate, is not a death sentence.  there are others here witn much more experience than me, but your future has good odds of disease free living.  Keeping a good check up schedule is imperative as there is always a chance for future issues.  There is no good that comes from dwelling on the unknown,  there will be plenty of time to worry WHEN and IF something occurs.  Please take the time to live in the moment with your two beautiful daughters.  I have three beautiful daughters and work hard every day to stay in the moment with them and everyone else that is part of my life.

Prayer is always a great calming factor in the life of a cancer survivor.  There are meds that your doctor can prescribe for your anxiety as well.  I am keeping you in my prayers.  As hard as it may seem now, you can begin to manage your thoughts better as time passes.  keeping yourself busy to avoid idle thought helps.  Hang in there buddy, we are all here for you.

Follow ups

Also remember that you undoubtedly have a schedule of follow ups. Kidney cancer is very slow growing, so if you keep all your follow up appointments, you can catch it when it's teeny tiny and an esay fix. But most likely this is now safely tucked away in your history. Cleveland has some of the best medical care and support communities in the world! It may also help if you join an in-person support group and help some of the newbies navigate the road you already traveled.

icemantoo

Smitty65 said:

Thank you all so much

I have to admit I have been stalking this Web page for a while now. The support  I saw in this group is amazing. So many cancer websites I saw were negative and dealt with the initial diagnosis as opposed to living positively after treatment. 

Today for some reason has been worse then most.  My back and my surgery scars have been aching since the weather turned so I currently have myself convinced I have pancreatic cancer despite the ct scans,  xrays and blood tests to the contrary.  I have to start believing the science and stop listening to the crazy thoughts in my head.  

10 cm

Smitty,

The Cancer free guarantees go up to about 6cm. At 10 cm their is a slight risk over the years, but any problem should be caught in the bud and taken care of with regular scans. There are many survivors with 10 cm and over and with regular scans you should be here for a long time to come. The aches and pains from that initiation (surgery) that will cintinue for a few more months are normal and are not Cancer If you felt Cancer they would be able to do away with the scans and bloodwork. If RCC does not usually go to the Pancreous so stop worrying about something you do not have.

 

 

Icemantoo

Smitty65

icemantoo said:

10 cm

Smitty,

The Cancer free guarantees go up to about 6cm. At 10 cm their is a slight risk over the years, but any problem should be caught in the bud and taken care of with regular scans. There are many survivors with 10 cm and over and with regular scans you should be here for a long time to come. The aches and pains from that initiation (surgery) that will cintinue for a few more months are normal and are not Cancer If you felt Cancer they would be able to do away with the scans and bloodwork. If RCC does not usually go to the Pancreous so stop worrying about something you do not have.

 

 

Icemantoo

Thanks

My doctor gave me a 90% 10 year survival rate for my type of RCC (clear cell really slow growing). I truly can't thank you all enough. Knowing that I am not the only one going through this is a god send.  I'm feeling better already. 

a_oaklee

Smitty65 said:

Thanks

My doctor gave me a 90% 10 year survival rate for my type of RCC (clear cell really slow growing). I truly can't thank you all enough. Knowing that I am not the only one going through this is a god send.  I'm feeling better already. 

normal thoughts

It's certainly normal to think every pain and ache is something to do with cancer.  That is our new thought process also.  My husbands shoulder was aching and we thought for sure it was cancer.  He had an MRI and it turned out to have a diagnosis of arthritis.  What can I say?  We are scared.  It has gotten better with time, but I think we will probably always have the fear.  The thing is...it doesn't incapacitate us and we can still enjoy life.  It's only been six months for you and things will improve.  I'm really glad you are here talking about your concerns. 

adman

Thank you for reaching out....

 

Smitty65,

Thanks for reaching out, you're in a safe, non-judgemental environement amongst people and caregivers fighting the fight.

I was very lucky w a Stage 1/ Grade 1 RCC tumor last year. I am like you. Very nervous a lot of the time, although getting better. When follow up testing time comes around every 4 months I'm also a nervous wreck.

Just remember to try and live in the moment as much as possible and be kind to yourself.

God Bless!

 

mean56

Smitty,
Your thoughts and

Smitty,

Your thoughts and fears are totally normal for a cancer survivor. I am a 58 year survivor and I still get anxious when I have a skin cancer lesion removed or an abnormal anything, any little thing. I've gotten very good at not dwelling. It is what it is and I cannot control it. My wish for you is to be able to live in the moment. When I do that I see what is in front of me and I am never disappointed. You survived to enjoy life and to fullfill your purpose on this earth. It's taken me many years to get there - I hope you can do it now. Congratulations and enjoy.

Mary

 

 

twinthings

I can relate

Smitty, I completely understand what you're going through!  I can't tell you how many times a day cancer is in the forefront of my thoughts.  Too many to count!  I don't know how to turn my mind off it, in terms of thinking every ache and pain is cancer.  It's kinda funny, not haha funny, but, while seeing my doctor 2 weeks ago for my first set of post op tests, I could not fight back tears.  I think the whole memory of that day in May, sitting in that same office, when he told me I had cancer, came rushing back to me and tears just ran down my face.  I'm pretty sure my Dr thinks I'm loco!  He suggested I seek counseling.  At the time, it made me laugh realizing that he probably thinks that's all I do is sit around and cry about having had cancer.  Quite the contrary. Other than the episode of PTSD induced by returning to his office, for the most part, I'm fine.  And I remain fine...until a new ache pops up.  I can't find a common thread as to why some of us react this way while others never give it a second thought. 

But, God forbid we face recurrence or a new primary tumor, odds are excellent it would be caught early.  For someone like me who has lost both parents and numerous family members to cancer, I am alllll too happy to be so closely monitored. Still, even knowing that, I can't help but worry.  I think the fact that you are still raising your girls explains much of your anxiety.  My children are 28 yrs old and no longer need my parenting but, they still need their mama!

Hang in there, Smitty!  If we believe it will get easier with time, it will.  Think happy thoughts

Did I read you're in the Cleveland area?

Sindy

   

MMondi1

Smitty,
 
You are def not

Smitty,

 

You are def not alone.   I was 37 with a 2 yo and 3 month yo at home when I was rushed off to surgery with what turned out to be a stage 3 grade 3 tumor. The thought of leaving those two fatherless is very tough to take.  It has gotten a little easier but its never easy. As my scans approach the anxiety hits real hard but I will say between scan I have also come to have some normalcy too.  Hearing high risk at every dr appointment hits me hard.   I still think about the boys growing up fatherless but Ive also learned to appreciate each moment with them.

 I just celebrated my litle ones 2nd birthday and now get to enjoy my oldests 4th birthday.  There is also a lot of inspiration on this board.    I view most of the people on here as needle movers.  The have taught me that the stats you read about are being beaten consistently.  The are changing the number in our favor.  They are a great inspiration to us all.  

I would also like to add we are in a time that some scientist call the era of discovery.  We are finally figuring things out. Our knowledge is doubling every two years. Soon it will be every year.  Once we start to implement these discoveries the number of long term survivors and cures for all stages will be real impressive. 

Darron

twinthings said:

I can relate

Smitty, I completely understand what you're going through!  I can't tell you how many times a day cancer is in the forefront of my thoughts.  Too many to count!  I don't know how to turn my mind off it, in terms of thinking every ache and pain is cancer.  It's kinda funny, not haha funny, but, while seeing my doctor 2 weeks ago for my first set of post op tests, I could not fight back tears.  I think the whole memory of that day in May, sitting in that same office, when he told me I had cancer, came rushing back to me and tears just ran down my face.  I'm pretty sure my Dr thinks I'm loco!  He suggested I seek counseling.  At the time, it made me laugh realizing that he probably thinks that's all I do is sit around and cry about having had cancer.  Quite the contrary. Other than the episode of PTSD induced by returning to his office, for the most part, I'm fine.  And I remain fine...until a new ache pops up.  I can't find a common thread as to why some of us react this way while others never give it a second thought. 

But, God forbid we face recurrence or a new primary tumor, odds are excellent it would be caught early.  For someone like me who has lost both parents and numerous family members to cancer, I am alllll too happy to be so closely monitored. Still, even knowing that, I can't help but worry.  I think the fact that you are still raising your girls explains much of your anxiety.  My children are 28 yrs old and no longer need my parenting but, they still need their mama!

Hang in there, Smitty!  If we believe it will get easier with time, it will.  Think happy thoughts

Did I read you're in the Cleveland area?

Sindy

   

Sindy and smitty

Please take a moment to read my info. I would give anything for your diagnosis.

I can tell you 1st hand that time helps. A day doesn't go by that I don't think about my cancer, but I try to make that motivation to make sure I make the most of the day that I have been given. I know several peiple my age that were not given the time I have already enjoyed since being diagnosed. i try to enjoy every day, not because I am worried I am dying, but because I am happy to be living.

Hug your kids, kiss your spouse, smile at a stranger. we should all have a different appreciation for every day. If you don't share it, your wisdom will be wasted. Let everyone see how much you love life, it is amazing how good it makes you feel.

hope I didn't ramble, sorry if I did. You will be OK, and now you are in a group where people do understand what you are going thru. 

Hope you are doing better now And know that you can share....

 

twinthings

Darron said:

Sindy and smitty

Please take a moment to read my info. I would give anything for your diagnosis.

I can tell you 1st hand that time helps. A day doesn't go by that I don't think about my cancer, but I try to make that motivation to make sure I make the most of the day that I have been given. I know several peiple my age that were not given the time I have already enjoyed since being diagnosed. i try to enjoy every day, not because I am worried I am dying, but because I am happy to be living.

Hug your kids, kiss your spouse, smile at a stranger. we should all have a different appreciation for every day. If you don't share it, your wisdom will be wasted. Let everyone see how much you love life, it is amazing how good it makes you feel.

hope I didn't ramble, sorry if I did. You will be OK, and now you are in a group where people do understand what you are going thru. 

Hope you are doing better now And know that you can share....

 

I couldn't agree more

Darron, I have read your info and I totally get that my diagnosis is much preferred to yours.  I do not doubt that if I were in your shoes, I would not have handled the situation as graciously as you have.  I have nothing but respect for the bravery you demonstrate. 

I try to never lose sight that there are countless people who'd give anything to walk a mile in my shoes.  Being one of the lucky ones has definitely taught me a whole new appreciation for what matters in life and, maybe more importantly, what doesn't.

Having said all that, try as I might, I can't keep cancer from creeping into my thoughts.  But, I am going to work on making those thoughts motivate me to make the most of my day, like you do.  I'm ready to be back to my happy go lucky kind of style, maybe this will help!

This place is the best!!  Thanks, Darron and Merry Christmas!!

Smitty65

twinthings said:

I can relate

Smitty, I completely understand what you're going through!  I can't tell you how many times a day cancer is in the forefront of my thoughts.  Too many to count!  I don't know how to turn my mind off it, in terms of thinking every ache and pain is cancer.  It's kinda funny, not haha funny, but, while seeing my doctor 2 weeks ago for my first set of post op tests, I could not fight back tears.  I think the whole memory of that day in May, sitting in that same office, when he told me I had cancer, came rushing back to me and tears just ran down my face.  I'm pretty sure my Dr thinks I'm loco!  He suggested I seek counseling.  At the time, it made me laugh realizing that he probably thinks that's all I do is sit around and cry about having had cancer.  Quite the contrary. Other than the episode of PTSD induced by returning to his office, for the most part, I'm fine.  And I remain fine...until a new ache pops up.  I can't find a common thread as to why some of us react this way while others never give it a second thought. 

But, God forbid we face recurrence or a new primary tumor, odds are excellent it would be caught early.  For someone like me who has lost both parents and numerous family members to cancer, I am alllll too happy to be so closely monitored. Still, even knowing that, I can't help but worry.  I think the fact that you are still raising your girls explains much of your anxiety.  My children are 28 yrs old and no longer need my parenting but, they still need their mama!

Hang in there, Smitty!  If we believe it will get easier with time, it will.  Think happy thoughts

Did I read you're in the Cleveland area?

Sindy

   

Thanks for the support

Thanks for chiming in. I was just sitting here feeling sorry for myself and got on for Some good vibes I was so glad to see new responses to my original post. Things are getting better but there always crazy thoughts in the back of my mind. I do in fact live in the Cleveland area.

 

thanks again and Merry Christmas to everyone

Jojo61

MMondi1 said:

Smitty,
 
You are def not

Smitty,

 

You are def not alone.   I was 37 with a 2 yo and 3 month yo at home when I was rushed off to surgery with what turned out to be a stage 3 grade 3 tumor. The thought of leaving those two fatherless is very tough to take.  It has gotten a little easier but its never easy. As my scans approach the anxiety hits real hard but I will say between scan I have also come to have some normalcy too.  Hearing high risk at every dr appointment hits me hard.   I still think about the boys growing up fatherless but Ive also learned to appreciate each moment with them.

 I just celebrated my litle ones 2nd birthday and now get to enjoy my oldests 4th birthday.  There is also a lot of inspiration on this board.    I view most of the people on here as needle movers.  The have taught me that the stats you read about are being beaten consistently.  The are changing the number in our favor.  They are a great inspiration to us all.  

I would also like to add we are in a time that some scientist call the era of discovery.  We are finally figuring things out. Our knowledge is doubling every two years. Soon it will be every year.  Once we start to implement these discoveries the number of long term survivors and cures for all stages will be real impressive. 

You did the right thing

Smitty

You did the right thing reaching out to this forum. They are knowledgeable, compassionate and can help you find hope and even give you a laugh.

Hang in there and remember we all have our dark days - we just pray that they few and far between. And that you can get back to savoring the good things life has given us.

 

Jojo

Darron

I still struggle

Don't get me wrong, I struggle too. Time helps, but we all have bad days.

the hand we have been dealt in life really stinks, but we've got to play the hand out.

I didn't mean to come across like I did. It is OK to have a bad day, but at some point, it is a day we have been given.

 

Merry Christmas back at you! Hoping and praying your tomorrow is better than today!

 

brea588

Darron said:

I still struggle

Don't get me wrong, I struggle too. Time helps, but we all have bad days.

the hand we have been dealt in life really stinks, but we've got to play the hand out.

I didn't mean to come across like I did. It is OK to have a bad day, but at some point, it is a day we have been given.

 

Merry Christmas back at you! Hoping and praying your tomorrow is better than today!

 

I still struggle

Smitty is good that you came on here and talked to us about your problems and thoughts.  Its good to have people who know where you are coming from.  I fear cancer everyday and probably with good reason too.  I had RCC last year.  This year on my colonoscopy I also had Adenocarcinoma in one of the 6 adenoma polyps that was removed.  Again i was blessed that the cancer had not spread.  I started having pain in my right hip about 5 months ago.  My Pcp sent me to an oncologist because these are primary tumors.  Me PET scan lit up in the iliac crest of my hip  this scan was sept 28  so onc wanted to wait and do another pet scan in Jan 14 due to cancer being slower to show in bone.  Due to increased pain i had a ct scan last week that had even the radiologist confused.  He could fine only sm amt of arthritis in hip and said pet scan and this ct did not match up.he can find nothing where the cancer cells are showing.  So my onc is sending me the university hosp to see bone doc that only takes care of pts with bone cancer.  Im scared to say the least to go next week but this needs to be found and treatment started.  They now have me on strong dose of pain meds that helps.  Just need your thoughts and prayers as I go to new onc next week.  I am feeling very afraid.   thanks

Renee1128

Very new to this.

Smitty, your strength and courage have inspired me to put pen to paper (so to speak) Thank you!   I am 46 and had surgery on Nov 4th to remove a 3cm RCC mass from my right kidney.  I too have been told how blessed I am to have found the mass so early and am finding it easier day by day to accept this.  I am definitely waging a war in my mind between feeling very blessed and extremely scared.  I was able to have surgery using the Davinci method leaving me with 6, small incision areas.  I am back to work and feel great most of the time but still feel a soreness in my kidney area.  I am certain that this must be normal only 6-7 weeks post surgery but my mind goes to that deep, dark place when I allow it.  It is a daily, sometimes hourly, struggle to remain positive and thankful BUT....I can look back over the past 8 weeks-since hearing the "C" word, and can see that I am making progress. I am a Christian and I have experienced a closeness with God that I never knew was possible.  Prayer is a very powerful tool for sure.  I am also seeing a therapist to help with the doubt, fear and anxiety and this is helping as well.  I am sooo thankful to have found this forum as I am having a hard time finding support groups in my area for SURVIVORS-that is what we are-of RCC.  I have approached my Urologist about starting a support group with his practice...it is a very large practice and they currently only have a support network for prostate cancer.  I would appreciate any advice/words of wisdom on how to proceed with starting a support group.  May God bless us all!

Renee