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After years on my own I'm happy to have found you!

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

I feel like my experience with kidney cancer has been a long, solitary journey through a scary landscape that keeps changing. I feel such great relief to have found this cancer survival site that includes a board dedicated to kidney cancer. 

I've only had time to read through a couple of posts and already my heart has been touched. I wish the best for everyone as you continue to get better and am sending messages of hope and strength to those who are currently in an active fight. 

I've been fighting my strange battle since 2000. I went for years undiagnosed and getting worse only to have the majority of doctors contribute my symptoms to stress or even outright disbelief. I was finally diagnosed with chromophobe type RCC in March of 2010 and had a partial right nepretomy in June of that same year. I've been followed closely since then but it hasn't been easy. My doctors thought my cancer had metastasized in the summer of 2013 because of enlarged mediasternal lymph nodes. The biopsy turned up sarcoidosis instead of cancer. Now I have several very small lung nodes in both lungs that are being watched. In March of 2016, I was diagnosed with uncontrolled asthma by yet another doctor. 18 months of worry with a worsening cough, throwing up and severe shortness of breath only to find out it was asthma and not metatastic lung cancer! A RX for Breo changed my life! 

I think I've been very lucky because the things that could've been bad turned out to be something else. But what a scary roller coaster ride! My wish for everyone would be that we could float safely down a lazy river. But if we can't, at least we're not alone. 

Allochka's picture
Allochka
Posts: 874
Joined: Nov 2014

Hello and welcome!

It is good you've found us, it is good that most difficult things like getting a diagnosis and surgerynare already behind you. And it is great all scares turned out to be not cancer related.

you will surely find this board very helpful, it is like second family here!

What stage were you?

Alla

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Scary stuff.  Sometimes it's a very difficult task to find doctors who truly listen to their patients.  I was lucky in that regard.  But then I've worked in a hospital setting as a Respiratory Therapist for many years.  As with any other profession I suppose, reputations follow.  Happy to hear your latest diagnosis wasn't another bout with cancer.  Asthma is nothing to fool around with either tho and I'm happy that you finally got a med that seems to help you.  It's important to know what your triggers are, so you can avoid those things.  Do you have a Peak Flow Meter?  I would hope so, and that is a great tool to have on those days when you're not feeling your best.  Make sure you use it enough to know what your typical values are on the good days, so when you are having a not so good day, you'll know the difference between needing your meds or needing to be seen by your doctor in an office or an ER.

Best of luck,

Donna~

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

Hi Donna,

Thank you for your help! I'm not sure what a peak flow meter is so I'm sure I don't have one. I had to seek help from another pulmonist and he diagnosed my breathing problems as asthma. I think there were several times when I should've gone to the ER. It's hard to know what to do when there's such an extensive health history. I'm so much better now that I'm on Breo. Almost two months with no problems breathing!

Thank you again. I hope you have a wonderful day!

Pony

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

Hi Alla,

Thank you for the warm welcome. I was T1-1 and was diagnosed at the stage where these things start to cause trouble according to my surgeon. I had a lot of weird symptoms and was getting worse leading up to the diagnosiS though. I seem to have a sensitive system! 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Welcome!!! 
What a scary set of experiences to have AFTER kidney cancer. It sounds like you are doing well, that's great. 

My husband had chromophobe as well. He had stage 3 and we are at 2.5 years so far. Getting check up next week. 

I have been told that chromobphone is "indolent" and "lazy" so I've got my fingers crossed. 

Again, welcome. 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I guess, If one must have tumours its probably best if its indolent and lazy.

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

Yes, for once lazy is good! 

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

Hi Sblairc,

i was told the same thing about chromophobe RCC. I hope your husband continues to do well! Good luck at his checkup! I think I was lucky that it's slow growing since it took so long to diagnosE.  Was your husband having any symptoms? 

Thank you for the warm welcome!

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Nope! Nothing until he started to bleed out in the toilet, I think the tumor was so necrotic it was breaking up and passing through him. 2.5 years with surgical "remission" so to speak. I pray he is cured. 

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

Welcome to our board, it's like our second family as Alla said. Sometimes we are even better understood here.

I'm happy that the surgery is years behind you and all those things turned out to be not related to RCC. It's terrifying to have those difficulties after cancer, every pain and ache brings cancer to a survivor's mind so you have had difficult time before final diagnosis, having such solitary journey makes it even worse, I'm happy you're not alone anymore. We are all here for you and sure your successful surgery brings hopes to our lives.

In your photo, What a cute baby

Forough

APny's picture
APny
Posts: 1949
Joined: Mar 2014

What a relief it must have been to find out that it's asthma. I always joke (yeah, black humor works at times) that the stress and worry about all the checkups, symptoms, aches and pains, will kill me before anything else. I'm glad you found us and we're here for whatever you need to share. Wishing you the very best!

Jan4you's picture
Jan4you
Posts: 1322
Joined: Oct 2013

A warm and overdue WELCOME Pony to you and yours!! Your baby looks adorable too!

What a journey ... ENUFF!!

Yes Kidney cancer can be a sneaky diseasel, often missed of found "accidently."

Glad you are here now.

Keep us informed as to how you are doing,

Warmly, Jan

donna_lee's picture
donna_lee
Posts: 901
Joined: Feb 2009

but glad you found the site.  I didn't jump in till about mid-way thru the previous 10 years, but I did participate in a live cancer support group every week.

Mine was Clear Cell RCC and was removed along with the organs it had infiltrated (right kidney, left half of liver, and set of nodes) and in 2 different nodes where it recurred during the 2nd and 3rd years out.  Thus far, I'm 7 years with NED.

There is something they can do for the Sarcoidosis as my husband was treated for it.  Sometime about 1995 he had a growth removed from the front of the tibia (lower leg bone).  The only thing they could say upon biopsy was that it looked like Sarcoid.  A few years later, we went to the optomotrist to get a new prescription for lenses, and was immediately referred to an ophtalmologist because his eye pressure was way over the roof.  He had sarcoid uveitis (inflammation in the middle layer of the eyeball and was put on prednisone.  It brought the inflammation and pressure down, but made him gain 40 pounds in 6 weeks.

It took nealy 2 years to get it under control; and then it returned about 2 years later.  He said no to prednisone and was sent to Casey Eye Clinic at Oregon Health Sciences University.  The specialist put him on Methotrexate, a cancer drug developed in the '70's that has been used for several other diseases.  It worked, cleared the eyes up, got ride of the small conglomerations of sarcoid in the lungs (which had been found on X-ray at the beginning of the Casey treatment), and hasn't had any evidence of return.  He still has to take glaucoma meds due to the damage caused over the years-he's 73-but this is just a suggestion for you to ask about.  Because the drug is toxic to the liver, he had to have regular blood work (quarterly), see the specialist quarterly and then every six months, and then every six months to a year as he tapered off the drug.  He still sees an opthalmologist locally every 4-5 months.

The sarcoid nodules could also be creating the asthma problems.

Good luck while you take care of your health needs.  Keep us posted.

donna_lee

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

Hello Donna_lee,

What amazes me and gives me hope is how well people are doing who have had far more extensive problems with kidney cancer than I have. I'm so new here that I'm still not quite sure what NED stands for but I at least know that it is good! And seven years is a long time to have such good results! Could you please tell me what NED stands for?

They found granulation in the lymph node biopsy that they did in 2013 and that's when my sarcoidosis was diagnosed. I'm being followed by a good optometrist who also doesn't want me on prednisone. I know about the weight gain while on prednisone and all the other side affects. 40 pounds in 6 weeks is so discouraging. I was gaining 10 pounds every six months. Finally I said enough since I was sure to develop more problems due to obesity! Plus I wasn't having sarcoidosis sypmtoms - Asthma was the culprit! I think I had All of the prednisone side effects and lost 20 pounds in 45 days after coming off of it.

Did the sarcoid in your husband's lungs look,like nodules on his X-rays? My latest ct scan said that two nodules have increased in size Since 2013. I'm afraid it's because I'm no longer on prednisone? My doctor wasn't hapay when I stopped taking it.  I was at 2.5 mm every day. It was a super low dose so I thought it Wouldn't hurt that much to stop taking it. maybe I was wrong!

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

Thank you for the warm welcome, Jan. I appreciate it so much! The little baby is my granddaughter, Emma. She just turned one in March. I look forward to getting to know everyone here and wish you good health and many many good times!

Pony

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

You are so right about that! and the killer drives to the hospital for checkups! I have to combat New York City and Philadelphia rush hours every time I go! A 2 1/2 drive takes at least 4 hours one way! 

Thank you for your kind wishes. Right back at you! 

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

Good morning, Foroughsh,

i was so surprised to login and find the many warm responses to my first post. Thank you for your kind words! 

It is scary to have so many strange symptoms after the diagnosis. My heart seems to have been affected by my cancer too. Or the stones. Or sarcoidosis. i don't know why!  hope to find clues on this board that will help me feel better. 

The little baby is my granddaughter, Emma. I'm lucky to be able to know her!

thank you again!

PonyWave

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

You look very young, I thought this little cutie pie was your child, good for you

Forough

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

Thank you! I appreciate it because sometimes you don't feel like yourself anymore! 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Welcome! So glad you found us here. You're awfully young to be typing. Heck, you appear to not even be walking or talking yet. :) I'm impressed you know how to use the internet.

Who is the lovely lady in the picture with you?

Seriously, so nice you're here! You are not alone. Just come online and here we are.

Hope you'll stick around and post an update now and then. Also wishing you NED. Small lung nodules that don't change are so common. We all have those. Hopefully, yours remain the same, small size they have been.

Best wishes!

Todd

P.S. Who's in the picture with you?

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Welcome Pony!

So glad you found us, even though it has been quite a ride before you found us!

This is a great place to vent your concerns/fears, get support and learn from others' experiences. Wishing you continued good health.

Hugs

Jojo

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

Hi Jojo,

Thank you for welcoming me here!

One of the worst things about my experience was the sarcasm that I received from so many of the local doctors. My internist felt there was something going on and was sending me to the right specialists but they dropped the ball. The surgeon who ultimately diagnosed the cancer felt that it should have been found earlier. It was still caught early on though. I'm lucky that I had so many symptoms even if they were difficult to deal with.

I wish you good health as well. Have a wonderful day!

Pony

 

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

I have just begun to walk and can type better than my grandma! Lol!

The pretty little girl is my granddaughter, Emma. She just had her first birthday in March. I love her personality. She seems to be outgoing and adventurous.  

Im sure I'll be searching for help here. Things keep coming up that rock the boat! I get sea sick!

Thank you for the warm wishes! I wish the same to you!

donna_lee's picture
donna_lee
Posts: 901
Joined: Feb 2009

NED means No Evidence of Disease...as in they haven't seen anything in the blood work or any kind of mechanical scan that indicates a difference from the one prior.  It's what we all hope for, because with kidney cancer, there is no way to say "you're cured".  At this point-2016-there is not test that can tell if there is any of the kinds of kidney cancer alive or multiplying in your body.  So NED it is.

I'm surprised the optomotrist is prescribing prednisone.  Usually that is reserved for ophalmologists.  The lesions or spots in my husbands lungs were not large-probably in mm. and the methotrexate did make them go away.  While he was being seen at OHSU, a Fellow from South Africa, used him as a final test in his study of a diagnostic procedure for sarcoid uveitis that could be done with photo microscopy instead of biopsy.  The inside of his eye was the cover photo for Opthalmology Today.

My concern for you is that the sarcoid in your lungs could be aggravating or a contributing factor to your asthma.  Methotrexate has come way down in price now that is generic.  A dermatologist had mentioned it for my son with psoriasis over 35 years ago, but didn't want to use it because of the side effects and need for liver monitoring, especially in a child younger than 10.  Put it on your question list for the next time you see your oncologist or PC Doc.

Hug that sweetie for me.  You're both pretty cute.

donna_lee

 

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

Thank you for the explanation. That must be why when I asked my doctor's nurse practitioner if I was cured at the five year mark she said "In a way, but we're going to watch you forever." I still have a lot to learn And I'm glad I found this board. 

My pulmonist was the one who put me on prednisone not my opthomologist. I'm getting the doctors and specialists confused! I was referred to her after a lymph node biopsy came back with a sarcoidosis diagnosis. My urologist who did the nephrectomy had the mediasternal lymph nodes biopsied because one of the radiologists at HUP caught a slight difference on a chest X-Ray in that area compared to my prior X-rays. Everyone thought the cancer had metastasized and we were all surprised by the sarcoid dx. I was having trouble swallowing at that time but my lungs were fine. And I still had a lot of pain over the right kidney where the partial nephectomy was done. The prednisone cleared up the swallowing problem as well as the pain.  i wasn't having any lung issues in the beginning of the sarcoid treatment (7-2013) but soon developed an unrelenting cough. My breathing studies showed an improvement after nebulization even in the beginning but I was still kept on prednisone only. It has been a miserable time since then as I only found relief for sob and the nasty cough with a new doctor in February of 2016. My poor husband suffered as much as I did through the restless nights!

Most of the lung nodes are 5mm or less and have been stable. But two grew from 3 mm to 5 mm on my last CT scan with a six month interval between scans. I wonder if they're growing because I'm not on prednisone? I'll be sure to ask about the medicine you mentioned at my next appointment  

So far there's no sign of sarcoid in my eyes. I see my opthomoligist in May. I'm sure your husband's uveitis must've been painful! I'm glad he's received the most cutting edge treatment and I wish him well! Does your husband have sarcoid any where else? My new pulmonist asked if my heart was ever tested for sarcoid. It seems my heart has been affected by all these kidney issues too. I regress every time I have a new kidney stone attack that always originates in my partial right kidney - of course - and with urethers too small to pass even small stones. I've had two lithotripsies and a major stone event since my surgery in 2010. 

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