I finally joined

jazzgirl
jazzgirl Member Posts: 243 Member
edited November 2017 in Kidney Cancer #1

Hi Everyone,

It has taken me a long time to get here.  I discovered the site long after my surgery and wish I had found it way earlier.  Then I lurked around on the sidelines trying to get myself to join the group.

I finally stepped out of the shadows thanks to posts by foxhd ["Where is everyone?"] and 

Kwilliams630 ["Does anyone else feel like a cheater?"]  That's when I knew how much I need all of you.

During a routine physical in the summer of 2016, something in the labs caught my doc's eye, and in less than a month she had ordered lots of tests and referred me on to a urology surgeon.  Absolutely no prior symptoms.  I had an open partial nephrectomy of right kidney.  Fear and anxiety were heightened by the fact that I was born with only the one kidney.

So far so good.  I'm working hard to keep my sodium and potassium levels in line – a task made easier by my extremely supportive wife who is learning along with me and is a great cook. 

My blood pressure has been creeping up after a lifetime of solid exceedingly normal levels.  I'll meet with the nephrologist next week. 

Sorry my profile is pretty bare at the moment but once I wanted to get on the list I wanted to do it in a hurry.  I'll try to add more as we go along.  So – thanks for all your support while I was hiding out – glad to be in the open with the rest of you.

 

 

Comments

  • jazzgirl
    jazzgirl Member Posts: 243 Member
    #2
    Hmmm

    Sorry when I look at my msg I'm seeing lots of additional code - I'll try to figure that out tonight.  Anyone else have that happen?

  • APny
    APny Member Posts: 1,995 Member
    #3
    Welcome, and glad you joined

    Welcome, and glad you joined us. Wish you didn't have to but then we all wish that :)  I don't see any additional codes in your post so all is ok.

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    #4
    Hi Jazzgirl

    Great to see you have shared your story but obviously wish we didn’t have to meet here

    You have had a very scary time... The law of someone means that a person with one kidney ends up getting renal cancer

     

    I can’t imagine how you have being over the past twelve months

    Can I ask what the measurements of your mass was and what your pathology report said

     

    Great to hear  you have been to the old country (Ireland). which part were you staying in

    Annie

    Sorry if this seems brief and blunt  its bedtime here 

     

  • jazzgirl
    jazzgirl Member Posts: 243 Member
    edited November 2017 #5
    Wehavenotimeatall said:

    Hi Jazzgirl

    Great to see you have shared your story but obviously wish we didn’t have to meet here

    You have had a very scary time... The law of someone means that a person with one kidney ends up getting renal cancer

     

    I can’t imagine how you have being over the past twelve months

    Can I ask what the measurements of your mass was and what your pathology report said

     

    Great to hear  you have been to the old country (Ireland). which part were you staying in

    Annie

    Sorry if this seems brief and blunt  its bedtime here 

     

    Stats

    I was asked about dimensions of mass:  Renal mass, right, 136 grams, partial nephrectomy:  Renal cell carcinoma, clear cell type, ISUP grade 3, 4.7 cm, with extensive tumor nexrosis, confined to kidney.  No lymphovascular invasion identified.  Resection margins free of carcinoma.  Non-neoplastic kidney with no specific pathologic change.  4.7 x 3.5 x 3.5 cm well circumscribed mass.  pTl b: Tumor more than 4 cm but not more than 7 cm in greatest dimension, limited to kidney.

    I'm a little confused on some of the measurements - I think the 136 grams is total of tumor plus part of kidney removed.

    As for Ireland, we were in Fanore for two weeks and a few days in Dublin.

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #6
    Welcome!! You will find great

    Welcome!! You will find great conversations and help here!!

  • jazzgirl
    jazzgirl Member Posts: 243 Member
    #7
    Thank you for getting rid of

    Thank you for getting rid of spammer scammer mr. fake person.  I was feeling fragile enough just joining and it helps to have that message gone. Thank you!

  • Rooster@1
    Rooster@1 Member Posts: 9
    #8
    Hi everyone

    Hi, i have kidney cancer and just went through a cryosurgery procedure that froze teh tumour with a probe (lacroscopy keyhole job), painless and now back home after 5 days in the Fuda cancer hospital in Guangzhou China, I am an Australian man 62 living and working in Hong Kong. Next step is to start a tragetting therapy drug called Axitinib (INLYTA), and i wonderd if nayone hear heard of that, or knows anyone, searching the topic here brought up a few people, but seems they are not posting anymore, hope that means they survived ha.

    Chin up

    Robert

     

     

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #9
    Hi! There are many who have

    Hi! There are many who have been in or are on meds. I am sure they will comment soon enough. All the best!

  • Rooster@1
    Rooster@1 Member Posts: 9
    #10
    AnnissaP said:

    Hi! There are many who have

    Hi! There are many who have been in or are on meds. I am sure they will comment soon enough. All the best!

    Hi Annissa

    Annissa,

    So how did your surgery go?

    Rob

  • Angiebby75
    Angiebby75 Member Posts: 208 Member
    edited December 2017 #11
    Welcome, sorry you have to

    Welcome, sorry you have to join. This group does provide great support, and knowledge.

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #12
    Rooster@1 said:

    Hi Annissa

    Annissa,

    So how did your surgery go?

    Rob

    Hi Rob. I ended up losing my

    Hi Rob. I ended up losing my whole kidney, but they got all the cancer so that is great. I am 6 wks out and it has been a long process. If I do too much physically I get very sore and swollen (my stomach). My energy is back to normal though and I start work next week!! Thank you for asking.

Discussion Boards