Hi - my name is Laura and it was not a kidney stone

LauraM3

Hi I am new.

I went to the ER thinking I had a kidney stone.  No, I had a mass on the left kidney (big one) and my ER doctor said most likely its kidney cancer.

My life stopped on a dime -- sounds familiar I am sure...

Short version:  Radical Left nephractemy (sp), removal of one lymph node.   Chest CT indicates 3 spots on lungs.  So - its stage IV and some think I have a very short time to live.  This would be true if I opted to not seek treatment/therapy.... but I have elected and I pray...I am currently taking Votrient 800mg a day.  I go to see my oncologist next week to check on how I am doing and then the plan is to rescan and redo blood work at the end of May/June.

I joined this site, because I need to talk to people who are going through the same thing I am .... this is scary.  I believe in God and I pray and I have faith...but yes, it still scares me.

I am married, I have 12 year old twins and I want to live.

 

 

 

 

 

Footstomper

Welcome Laura

Reading your story was exactly like my own. Sent to ultrasound for kidney stones, instead they found a mass. 10 cm on My kidney and mets in my lungs: stage 4 grade 4. I spent two weeks saying goodbye to every one before I went into surgery. I was terrified, but I survived, and the surgery wasnt as bad as I feared, even though I was on the table for about ten hours. That was May 1st 2013. Please take this reply as evidence that I still am very much alive

You dont say so, but I'd be willing to bet you were scared of the surgery too. Thats the thing with this disease its scarey but no way as scarey as your imagination will make it. You will think about this disease all the time, its like the bogeyman, but you dont have to be scared by it.

I dont want to minimise your experience, you have got a very serious disease, but it is treatable more treatable than ever. You say your on Votrient. There are people on this site who have been successfully taking that for years, others who found it didnt work for them after a few weeks. No bother; stop Votrient and try another drug, theres loads out there and they are increasing in number and effectiveness. I truly believe that Cancer, kidney Cancer is well on ots way to becoming a treatable disease like Aids. As Fox(who you'll meet on this site) has said we are living with cancer not dying of it.

Nice to meet you Laura, sorry it had to be here, but I'm glad you found us.

Nil Desperandum

Footstomper

Footstomper

You're another teacher!

Years 10-12. There seem to be a lot of us on this board for some reason. 

You dont say where you are, but if youre working in the USA, youve got the whole summer break to recover.

Jan4you

Footstomper said:

You're another teacher!

Years 10-12. There seem to be a lot of us on this board for some reason. 

You dont say where you are, but if youre working in the USA, youve got the whole summer break to recover.

Glad you found us and Yes of

Glad you found us and Yes of course, we'll walk along side you in this journey if you want.But I understood your post to say you HAD the surgery (left nephrectomy) yes?And you are looking for those who are stage IV and undergoing treatment, or not quite started?

Anyway there are others on here, like Footstomper who are still among us. ANd there is another site called Smartpatients.com

who have more folks to converse with as well. I had left nephrectomy and doing fine 2 years now.

Keep us posted and there will always be there for you. Do your twins know?Again, its scary, but doable and liveable!

Hugs to you and yours, Jan

LauraM3

Footstomper said:

You're another teacher!

Years 10-12. There seem to be a lot of us on this board for some reason. 

You dont say where you are, but if youre working in the USA, youve got the whole summer break to recover.

Hi I live in the US - Florida

Sorry it's this forum too... but glad to meet you, too.

Yes, the surgery scared me to death.  I am almost 6 weeks out and still have intermittent pain etc...    I had to have transfusions and was in ICU for 2 days.   But, God (my super power) got me through it and I am here today.  I was having a bad day and started looking at the effectiveness of Votrient and that is when I stumbled on to this board.  Thank God, I found you guys to help me and hopefully I can help you.

 

LauraM3

Jan4you said:

Glad you found us and Yes of

Glad you found us and Yes of course, we'll walk along side you in this journey if you want.But I understood your post to say you HAD the surgery (left nephrectomy) yes?And you are looking for those who are stage IV and undergoing treatment, or not quite started?

Anyway there are others on here, like Footstomper who are still among us. ANd there is another site called Smartpatients.com

who have more folks to converse with as well. I had left nephrectomy and doing fine 2 years now.

Keep us posted and there will always be there for you. Do your twins know?Again, its scary, but doable and liveable!

Hugs to you and yours, Jan

Thank you Jan4you

I will check smartpatients.com  too.  Thank you for your warm welcome. 

Yes, left nephretomy is done.  I am undergoing treatment with Votrient 800mg per day. 

Yes, my twins know about this because they knew something was up and we decided to be honest. 

Thank you so much again.  I look forward to getting to know you.  Is your story on here?  I will try to find it and read about you.  Hugs!

Jan4you

LauraM3 said:

Hi I live in the US - Florida

Sorry it's this forum too... but glad to meet you, too.

Yes, the surgery scared me to death.  I am almost 6 weeks out and still have intermittent pain etc...    I had to have transfusions and was in ICU for 2 days.   But, God (my super power) got me through it and I am here today.  I was having a bad day and started looking at the effectiveness of Votrient and that is when I stumbled on to this board.  Thank God, I found you guys to help me and hopefully I can help you.

 

WOW what a scare. Are you on

WOW what a scare. Are you on iron (SLOW FE)? I had to ASK for it as I am always anemic following any surgeries.

My tumor was in a precarious place (could've bled out) so the kidney was removed, but I am Stage 1.

I remain on here to follow my friends and welcome newcomers. I have other health issues to tend to now.

You can also use the Direct Message here in CSN Email. Its a more private way to talk.

Jan

Footstomper

Jan4you said:

WOW what a scare. Are you on

WOW what a scare. Are you on iron (SLOW FE)? I had to ASK for it as I am always anemic following any surgeries.

My tumor was in a precarious place (could've bled out) so the kidney was removed, but I am Stage 1.

I remain on here to follow my friends and welcome newcomers. I have other health issues to tend to now.

You can also use the Direct Message here in CSN Email. Its a more private way to talk.

Jan

Jan's right (of course)

Smart patients is very good, but a bit more technical. Other than these two sites the rest of the internet should probably be avoided. Its mostly out of date and scarey or the outer fringe of the lunatic fringe.

icemantoo

Footstomper said:

Jan's right (of course)

Smart patients is very good, but a bit more technical. Other than these two sites the rest of the internet should probably be avoided. Its mostly out of date and scarey or the outer fringe of the lunatic fringe.

Welcome

Laura,

 

Sorry you are here. My journey was easy, but others are chiming in with journays similar to yours. Where in Forida are you? Sure is hot today in Palm Beach County.

 

 

Icemantoo

lcsvb

Footstomper said:

You're another teacher!

Years 10-12. There seem to be a lot of us on this board for some reason. 

You dont say where you are, but if youre working in the USA, youve got the whole summer break to recover.

I am a teacher too!

Why do so many teachers have kidney cancer? Think we can never take restroom breaks??? Interesting!

APny

lcsvb said:

I am a teacher too!

Why do so many teachers have kidney cancer? Think we can never take restroom breaks??? Interesting!

Another teacher here. You may

Another teacher here. You may be onto something with those bathroom brakes.

Laura, so sorry you have to be here but you couldn't find a nicer, more supportive group. Wishing you the very best!

Kantbe

lcsvb said:

I am a teacher too!

Why do so many teachers have kidney cancer? Think we can never take restroom breaks??? Interesting!

Teacher and bathroom breaks

Or is it the wine we need to get through the day? Joking...I actually don't even drink! 

Hi Laura, I am also new to this - 3 weeks post op, right open radical, two days in ICU, 17cm+ tumour, kidney etc  removed and about to start on Votrient on Monday.

Footstomper

Kantbe said:

Teacher and bathroom breaks

Or is it the wine we need to get through the day? Joking...I actually don't even drink! 

Hi Laura, I am also new to this - 3 weeks post op, right open radical, two days in ICU, 17cm+ tumour, kidney etc  removed and about to start on Votrient on Monday.

Kids

I always said the job would be the death of me

Allochka

Footstomper said:

Kids

I always said the job would be the death of me

Hello Laura,
please do not

Hello Laura,

please do not hurry to think that you are doomed! So many Stage 4 people here, living full lives!

Teachers and bikers - seems these 2 professions/hobbies are most popular with kidney cancer...

foroughsh

Laura
Glad you found us, my

Laura

Glad you found us, my tumor was also large, 10cm, so it all happened in few days less than a week from first flank pain to the surgery room, I was scared to death once they told me it could be cancerous so all I wanted was to take it out and get free of it. Sure it was cancerous but not that deadly that I expected it to be. I thought I would be dead in feww weeks and it was 19 months ago. I found CSN one month after my surgery and it helped me realize that this disease is far different from what I expected, there are drugs and treatments, I'm not trying to suger coat it but sometimes we make it worse that it really is

Wish you a quick uneventful recovery and hope your body responds to votrient very well.

Oh, I used to be a teacher too

Forough

moonjell

welcome

It is very scary indeed. I was in almost same situation. ER for kidney stone (actually had one) but urologist found mass on right kidney so stone took a back seat. Had the partial neph done 2-weeks ago and confirmed clear cell RCC Gr 2.

Yes, when I first found out my life stopped too. As you'll find on this board though, so many have gone before us and are here telling their story. They are inspirational to me an certainly helped ease mymind about the surgery and diagnosis.

Prayers to you and your family.

mrou50

Laura

I can't say don't worry because we all do to one degree or another. Your story is much like mine and I worry everyday, however there are great medications out there to treat this disease that can buy a person more time, and new ideas are being made everyday so hang in there lean on your friends and family and continue your prayers, and I will pray for you as well.

 

Mark

PonyWave

Hi Laura,
I'm new to this

Hi Laura,

I'm new to this board but not so new to kidney cancer. ER doctors found my tumor during a horrible stone attack in 2010. I've been on my own until I found this site in April of this year. Even though my cancer was small I've had plenty of health scares in the past 6 years. It IS so scary! I'm glad you found this site and wish you the best!