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Well, here I am... and how I got here

pamstayner's picture
pamstayner
Posts: 22
Joined: Apr 2014

I have been lurking for a few days, reading almost all the thirty something pages of topics.... feel like I know many of you, and appreciate the good vibes that are given off of this site.

October 9, 2012

I met my brand new never before seen Internal Medicne PCP at an appointment I made to explain the explaination from a ct scan of my right kidney mass that was found on a routine pre surgery abdominal ultrasound. ( I was scheduled for bariatric surgery to "cure" my morbid obesity).  My poor new doctor, imagine him having to come in and tell someone you have never seen, or known about, and tell them they have  a 12cm mass on their  almost a totally necrotic right kidney, that they have a 99.99% sure diagnosis of kidney cancer.. I know I surprised him.. I was not surprised, scared, incredulous or uninformed.  I had figured it our already... with NO symptoms of any kind, I could not understand  ultrasound findings of a mass on the kidney, I had already read everyting I could find on the internet over each sentence in the report... I already knew it had to be cancer.

once I had the consult with the Urolgist, I was self prepared to demand a radical nephrectomy and nothing less.... plenty of people live with one kidney, and I saw no downside to the proceedure... right now.. no delay...GET IT OUT..... and surprise to me.. that is exactly what my surgeon said.. no other choices, or information... except that after the operation, we would discuss the pathologist report, and decide on the next step.

The surgeon is the typical urologist... " We got it all, it was fully contained no evidence of mets"  I was diagnosed and cured in 10 days of kidney cancer....How could I honestly go around and tell anybody that I had cancer and now was cured?  I didn't even feel I had earned the diagnosis... let alone the cure.

Fast foreward to December 9, 2013...

for 14 months,ignorance was bliss... then!  I was scheduled for a CT brain scan because my poor PCP AGAIN said the constant positional head pain I had was not a normal headache, and  kidney cancer, part 2 began... diagnosis after the crainiotomy:   brain mets RCC.

The PET scan before the brain surgery showed several nodules in my lungs... told they were likely mets also...

So I can say, with no guilt, that I am earning the diagnosis... I have had no serious, only annoying side effects from the Sutent, and will know if I am showing the standard response rate for the drug. 

I am lucky that I have only had to endure the recoveries from surgeries, and not the targeted therapy drug.  I have to get up and get exercise to keep going.. and I have learned from this discussion group that I better look into nutrition too...

So, here I am, and a short version of how I got here....

Pam

 

 

 

 

icemantoo's picture
icemantoo
Posts: 1527
Joined: Jan 2010

Pam, 

There is no such thing as a typical story as we all come together with our own unique set of experiences.What I can not understand from yours is why the doctors apparently waited 14 months for follow up scans. At 12 cm you were at a high risk for mets no matter what the surgeon originally said. Scans should have been done at 3 month intervals. Additionaly there should have been scans before the Kidney Surgery to rule out existing mets.

Hopefully the sutent will work and you will be here for a long time to come.

Icemantoo

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

You've jumped in with both feet. Make sure all your follow up appts. are frequent. Another challenge, Huh?

pamstayner's picture
pamstayner
Posts: 22
Joined: Apr 2014

Jumped in with both feet, on one cylinder, missing only one of my marbles, (thank you) and ready to go.  Since reading 43 pages of discussion topics, I appreciate each and every one of you regulars and your stories, inspirations and Karma.

Some day I will share how I handle challenges... before that I better get you used to me... otherwise you will all agree I should have had more extensive brain surgery!

Thanks to all...

Pam

pamstayner's picture
pamstayner
Posts: 22
Joined: Apr 2014

Icemantoo...I too cannot accept the lack of followup.  I know from this board what SHOULD have been done. I know from all the additional reading I have done now what I should have done.  I know that the hospital personnel from the Cancer Center visited me everyday while waiting for a slot in the Operating Room , asking what we felt they could have done... how they had dropped the ball on us... etc etc.. They clearly said they dropped the ball... and me..

But all of that is done and cannot be re-done or fixed... and here I am.. I firmly believe I am here for a long time to come... I have not lost ONE POUND through all this, so there is a lot of me left.  Some day I will tell the story about why I am fat, and we can all laugh over that..

I am sort of okay with the Sutent.. and with the PET scan scheduled and the Oncologist appt May 6th I should learn something from that if I am responding ...

 

Pam

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Hi Pam, and thank you for sharing your story.  Sounds like It's been a rough couple years for you.  I'm so sorry for what you've been thru and continue to go thru. 

I remember thinking the same thing as you, in terms of not feeling like a "survivor".  And like you, I was diagnosed with cancer and "cured" of cancer, all within a very short time.  It left me feeling like I didn't have the right to consider myself a cancer survivor.  Almost 1 year later, I can say, I am a survivor.  By the grace of God, I have not had mets or faced the many challenges that are associated with mets, such as drug therapy.  But not a day goes by that I don't worry about it.  Every ache or pain sends my thoughts spiraling out of control with the fear of recurrance.  So, to me, the emotional scars left behind are what make me feel like a survivor.  I fight every single day not to let fear get the best of me.  At the time of diagnosis and surgery, I couln't possibly know what an emotional toll cancer would take on me...probably for the rest of my life.  My fight hasn't been as difficult as many of yours and others like you, but I am fighting.

I am glad that you seem to be tolerating your meds fairly well.  And yes, exercise and good nutrition are key.  Did you ever have the weight loss surgery?  If so, are you losing weight?  I have battled obesity my entire adult life.  Roughly three years ago, I lost 75 lbs.  I know all too well the physical and emotional pain of being obese.  With obesity being one of the risk factors for kidney cancer, I can't help but wonder if my weight contributed to my diagnosis.  I suppose I'll never know. 

I will lift you in prayer, my friend, as you continue fighting.  Since you admitted to lurking around, reading many of our stories, you are no doubt, familiar with fox, Ron, djinnie, NanoSecond, Brenda and so many others who's challenges far exceed mine.  I believe fox has even surpassed his expiration date and is stronger and better than the text books say he should be.  Draw strength and courage from these people, for they have an abundance of both and are happy to share.

Keep your chin up and try to stay positive.  Drink all the water you can handle and get outside and walk.  I hope you'll hang around and let us get to know you better and follow your progress. 

Best wishes,

Sindy   

 

pamstayner's picture
pamstayner
Posts: 22
Joined: Apr 2014

Thanks.. Your picture shows a great looking paper gown .. who would ever think you fight weight....!!

I have learned that walking 30 minutes is a goal for me... between fatigue and breathing I don't get far at tll... so baby steps begin.  I am 66 years old, I  spent 20 years of my life traveling all over the world with my husband while he was in the Navy.. we raised 4 children, and just are at the last one of 4 grandchildren we raised. I don't have time effort emotion or tollerance for anyting slow.. I have never rested..

Since I am now in recovery mode... I will only get stronger... I won't accept less.

Pam

 

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Thank you, Pam.  The paper gown is pretty forgiving and hides alot!!  I fight weight every day.  I am an eater, a foodie as some would call it.  I love food, and it loves me.  I have put on 15 lbs since my surgery, last May.  I blame it on the sweet tooth I traded my kidney for.  But, I am proud to say, I am 10 days clean.  I haven't had so much as a bite, lick or taste of a cookie, ice cream, cake, chocolate or any other sweets...for 10 DAYS!!  I have never battled addiction but this must be what it feels like...my DT's are baaaaad!!!  But, thanks to NanaSecond (one of our fellow surviviors), I am kicking my addiction to sweets, one day at a time.  It is a struggle every. single. day!   

I am so proud of you for walking!  Nothing wrong with baby steps.  It doesn't matter how far or fast you go, what matters is that you go.  You sound like a strong woman who's been thru a lot and taken care of a lot of kids, all while supporting your husband...I think we can all draw strength from you!!  What an inspiration you are!

You will get stronger by the day as you journey thru recovery.  Keep your spirits high and stay positive and you'll do fine.  You sound like a hell of a woman to me and I hope I have half your gumption when I'm 66!

danbren2's picture
danbren2
Posts: 183
Joined: May 2013

It's all here Pam! Just by being here qualifies you as a fighter, and one not to give up! I have been a member for almost a year (wow it will be a year in May), but I started my cancer journey in August of 2011.  I made the worst mistake that most of us do when we find out we have cancer and I hit the internet, oh my goodness! Worse mistake ever, and I am still have some anxiety over some of the things that I read about on the internet.  When I first came here one of the first rules I was told about was to stay off the internet, and they were absolutely right.  I met people on here that have been living and fighting kidney cancer for 3, 5, 10 years and longer, which was quite the opposite of what it was saying on the internet.  I was also able to get some answerers to questions from real live people that not only knew the answers but have lived through some of the same situations I was dealing with.  Like I said I was diagnosed in August of 2011 and have gone through 3 surgeries, right kidney, lower portion right lung, and this last one in November 2013 which was a met to the brain.  The people here have helped me more mentally than any doctor could have, Fox, Djinni, Iceman, JoJo, Twin, and so many others.

Answers, strength, compassion is what I have gotten from all these wonderful people and it just never stops! Wishing you all the best in your fight.  Please keep in touch and let us know how things are going for you.

                                                       Prayers of good health for us all!

                                                        Brenda 

Jan4you's picture
Jan4you
Posts: 184
Joined: Oct 2013

Welcome Pam!! Glad you decided to post, after lurking and reading ALL those pages of posts. I think you are amazing with a wonderful, yet realistic attitude. I hope you stay. We'll walk this journey along side you if you choose.

Keep us informed as to how you are doing hon.

In the meantime, here's a BIG HUG  (((( PAM )))

 

Warmly, Jan

Jojo61's picture
Jojo61
Posts: 366
Joined: Oct 2013

Hi Pam,

Welcome to this forum. It is a good place to be, given  your situation. If  you need advice, support, kinship - this is the place to be! I often say this place is the silver lining of having kidney cancer. This is a tremendous group.

Everyone's story is different. It sounds like you are a fighter, with a great attitude. You will do great! Looking forward to more of your posts!

Hugs and smiles,

Jojo

 

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