Recently Diagnosed

pmurray151
pmurray151 Member Posts: 6
in Kidney Cancer #1

I am new to this site and to cancer.  I have urothehal carcinoma of the right kidney and it must be removed.  Still in shock, scare, uncertain of the future.  Would appreciate any tips, thoughts, encouragement. Thank you.

 

Pat

Comments

  • Bay Area Guy
    Bay Area Guy Member Posts: 619 Member
    #2
    I'm not familiar with this

    I'm not familiar with this type of carcinoma, so I can't really comment about any specifics.  But, generally, I would suggest you not search the internet for information.  When I was diagnosed in late 2013, that was the first thing I did, and the result was I terrified myself.  What I found, after talking with both my primary care physician and the urologic oncologist to whom I was referred, is that many of the sites have outdated and, in some cases, just plain wrong information.  Trying to sort it all out ups the stress level and drives you crazy (or, in my case, crazier).

    The other thing I have learned through my journey is that amazing progress has been made in the treatment of all cancers and new treatments are coming online all the time.

    Ifyou could share a little more about your diagnosis (like how it was found, size, those kinds of things), I'm sure the people on this site will have information to share.

    Lastly, if you have concerns or questions that you absolutely need answers to right away, call your doctors and ask.  A large part of successfully dealing with a cancer diagnosis is getting your mind in a position to cope with it.  The docs I've dealt with have been great with answering questions, even if it's by email.

    Best wishes for a successful outcome and please know we'll all be here for you.

  • stub1969
    stub1969 Member Posts: 978 Member
    #3
    Welcome, Pat!

    Scared??  Wow, that is an understatement...at least for me it was.  I remember feeling numb and having to practice breathing exercises just to gain some composure.  It's an absolutely terrifying experience to hear that you have cancer.  If you feel this way, too, please know it's normal.  Allow yourself time to grieve and come to terms with this.  Then, brush the dust off your pants, and get ready to take action.  Like Bay said above, try to stay away from searching prognosis and survivor rates.  Do spend your time on google building knowledge from people that have taken this journey before you--this is an excellent site and I'd recommend smartpatients.com.  Smart patients have a lot of stage 4 folks, but they also have a conversation category with your cancer variant.  Both of these sites will provide you with support.

    Other advice I have, make sure you feel comfortable with your doctor.  I'd suggest finding one that specializes in the type of cancer you have.  A larger research hospital would be an excellent choice.  Don't be afraid to ask your doctor questions--but educate yourself and advocate for yourself.

    Finally, seek out support for yourself.  Whether it's a spouse, significant other, clergy, or a support group; this is a life-changing event that would be difficult to tackle by yourself. 

    I hope this helps.  Wishing you only the best!

    Stub 

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    edited March 2021 #4
    That was me almost 19 years ago.

    How big is the bugger?

     

    icemantoo

  • pmurray151
    pmurray151 Member Posts: 6
    edited March 2021 #5
    Bay Area Guy said:

    I'm not familiar with this

    I'm not familiar with this type of carcinoma, so I can't really comment about any specifics.  But, generally, I would suggest you not search the internet for information.  When I was diagnosed in late 2013, that was the first thing I did, and the result was I terrified myself.  What I found, after talking with both my primary care physician and the urologic oncologist to whom I was referred, is that many of the sites have outdated and, in some cases, just plain wrong information.  Trying to sort it all out ups the stress level and drives you crazy (or, in my case, crazier).

    The other thing I have learned through my journey is that amazing progress has been made in the treatment of all cancers and new treatments are coming online all the time.

    Ifyou could share a little more about your diagnosis (like how it was found, size, those kinds of things), I'm sure the people on this site will have information to share.

    Lastly, if you have concerns or questions that you absolutely need answers to right away, call your doctors and ask.  A large part of successfully dealing with a cancer diagnosis is getting your mind in a position to cope with it.  The docs I've dealt with have been great with answering questions, even if it's by email.

    Best wishes for a successful outcome and please know we'll all be here for you.

    New diagnosis

    Thank you so much for your response and encouragement. Yes, I will find out more info and post again soon.  Best wishes to you also.

  • pmurray151
    pmurray151 Member Posts: 6
    edited March 2021 #6
    stub1969 said:

    Welcome, Pat!

    Scared??  Wow, that is an understatement...at least for me it was.  I remember feeling numb and having to practice breathing exercises just to gain some composure.  It's an absolutely terrifying experience to hear that you have cancer.  If you feel this way, too, please know it's normal.  Allow yourself time to grieve and come to terms with this.  Then, brush the dust off your pants, and get ready to take action.  Like Bay said above, try to stay away from searching prognosis and survivor rates.  Do spend your time on google building knowledge from people that have taken this journey before you--this is an excellent site and I'd recommend smartpatients.com.  Smart patients have a lot of stage 4 folks, but they also have a conversation category with your cancer variant.  Both of these sites will provide you with support.

    Other advice I have, make sure you feel comfortable with your doctor.  I'd suggest finding one that specializes in the type of cancer you have.  A larger research hospital would be an excellent choice.  Don't be afraid to ask your doctor questions--but educate yourself and advocate for yourself.

    Finally, seek out support for yourself.  Whether it's a spouse, significant other, clergy, or a support group; this is a life-changing event that would be difficult to tackle by yourself. 

    I hope this helps.  Wishing you only the best!

    Stub 

    Thank you

    Thank you so much Stub, this is great advice.  I will check out the website.  I am working on my support group, I am fortunate to have a great spouse, family and friends and I am learning to ask for help.  Best wishes to you and I will keep posting.

  • pmurray151
    pmurray151 Member Posts: 6
    edited March 2021 #7
    icemantoo said:

    That was me almost 19 years ago.

    How big is the bugger?

     

    icemantoo

    New diagnosis

    Thank you for your response, not sure, I just know that it is multifocal, stage Ta, so I think it is very early, which is good.

  • Deanie0916
    Deanie0916 Member Posts: 626 Member
    edited March 2021 #8
    Hi Pat

    Welcome, I know you will find so much support from this group. Good thing it's caught early.

  • eug91
    eug91 Member Posts: 471 Member
    edited March 2021 #9
    welcome-

    Sorry you had to join us, Pat, but I'm glad you found us. This is a great forum here. We've all been through what you're going through, so we know you're going to do great. We're here for you if you have questions or just need to vent. 

     

  • pmurray151
    pmurray151 Member Posts: 6
    #10
    Deanie0916 said:

    Hi Pat

    Welcome, I know you will find so much support from this group. Good thing it's caught early.

    Thank you

    Thank you for the encouragement Deanie, I hope you are doing well.

    Pat

     

  • pmurray151
    pmurray151 Member Posts: 6
    edited March 2021 #11
    eug91 said:

    welcome-

    Sorry you had to join us, Pat, but I'm glad you found us. This is a great forum here. We've all been through what you're going through, so we know you're going to do great. We're here for you if you have questions or just need to vent. 

     

    Thank you

    Thank you so much for your response, it is great to have support.  Hope you are doing well.

    Pat

  • jazzgirl
    jazzgirl Member Posts: 243 Member
    #12
    Hi Pat!

    "Still in shock" - yes, that pretty much describes the early days - I remember it as a two-by-four between the eyes. I'll second what everyone has said - especially two things from Stub. 1. Be comfortable with your doctor. I asked for a second opinion just because I was so uncomfortable with the first doc. I had the luxury of being at a magor medical center where there were docs to choose from - I looked up their bios and specialties and watched videos of those who included them. I was/am extremely comfortable and confident in my second choice, the oncologist/urologist/ surgeon who did my partial nephrectomy and who I still see for followup (5 years this July). 2. Seek out support - you are lucky to find this group early. It was a year and a half after surgery that I stumbled in here. But my wife, extended family, my church, friends kept me sane - even my Irish friend who, because of the time difference, could correspond with through me the four nights in hospital when my mind was all over the place. And one big thing I want to reassure you - one kidney will serve you well. I stated out with only one since birth and now that's a partial and I'm doing fine. Hang in there - keep reaching out. Take care ~

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