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I finally joined

jazzgirl's picture
jazzgirl
Posts: 133
Joined: Nov 2017

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.

 

 

jazzgirl's picture
jazzgirl
Posts: 133
Joined: Nov 2017

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's picture
APny
Posts: 1938
Joined: Mar 2014

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
Posts: 479
Joined: Aug 2017

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's picture
jazzgirl
Posts: 133
Joined: Nov 2017

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's picture
AnnissaP
Posts: 623
Joined: Sep 2017

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

jazzgirl's picture
jazzgirl
Posts: 133
Joined: Nov 2017

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
Posts: 9
Joined: Dec 2017

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's picture
AnnissaP
Posts: 623
Joined: Sep 2017

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
Posts: 9
Joined: Dec 2017

Annissa,

So how did your surgery go?

Rob

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

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.

Angiebby75's picture
Angiebby75
Posts: 190
Joined: Aug 2017

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

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