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UPDATED Lost in the world of waiting

apple12
Posts: 4
Joined: Nov 2016

I've been reading through the board for a couple of weeks now and am finally pulling the trigger on making a post. I found out 3 weeks ago that I have a 1.8 cm complex partially cystic mass with enhancing soft tissue at the bottom of my left kidney. It was an incidental finding on an MRI for lower back pain. I followed up with the urologist that told me there's an 80% chance it's RCC and we set a date for a partial nephrectomy. This was a bit of a whirlwind for me because I'm a 34 yr old female that has never smoked. The good news is that it's small and the location makes it easy to access without taking too much of the kidney. Just to cover my bases, I set up a second opinion at MD Anderson for today. The appointment was fantastic - the facility, staff and patient care are outstanding! The doctor gave me slightly better odds of 60% chance it's RCC because of my age and gender. He gave all of the same options as the urologist and recommended the partial nephrectomy as well. Then he told me about a second cyst that he found on my images and threw me into another tailspin. The second one is 1 cm near the top of the same kidney but buried deep inside. Removal of that one is not a good option right now because of the damage that would be done to the kidney without knowing what it is for sure. So the plan is to move ahead with the partial nephrectomy this Thursday and once we have pathology results, we can make a plan for the second one. It's been an emotional roller coaster the past few weeks and every time I start to get my feet under me, I get flipped around again. I started the week getting nervous about surgery and the pain of recovery, and now I'm trying to wrap my mind around the fact that after all of that, this will still not be over. I guess I just came here to share my anxiety with all of you that have been in my shoes because it's hard to relate to people that haven't experienced this before.

 

UPDATE - After surgery, I didn't really keep up on here. My general feeling was that everyone else had real cancer, and I was "lucky". So I moved on to other groups, but because of that, today I feel a strong need to share my update. Last month I had my 6 month follow up scans which were all clear and my kidneys look great. I also did genetic testing because the tumor was malignant and I'm still quite young. Yesterday, I received the genetic test results: positive for VHL, meaning that the tumor and cyst are the first ones in what will likely be a series of them. VHL also brings cysts and tumors in the brain and spinal cord, pancreas, eyes, and adrenal glands, with an average female life expectancy of 49. So today, I'm not feeling so lucky. And I just wanted to share with you all that when you meet new members in this group that have small, grade 1 tumors, their prognosis may not be as enviable as it seems from the first diagnosis. Please be gentle - a tumor of any size, grade or stage is immensely frightening and life changing.

icemantoo's picture
icemantoo
Posts: 3280
Joined: Jan 2010

apple12,

 

The good thing is that it was caught early. As a complex cyst grows its chance of being Cancer incresae so that 60-80% chance could only go up over time. At 1.8 cm it is much easier to deal with and more option are available  than if it had grown larger. Not fair to go thru this at age 34, but at that age your recovery should be easier and faster than us old guys. I was 25 years older when I was nephed 14 years ago. While there is no way to sugar coat the surgery and recovery it does beat the alternative. You shuld be back to a slow normal in 4 to 6 weeks.

 

Icemantoo

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I bet nearly every single one of us on this board wishes we could have a do-over with your stats. Just think about how fortunate you are to find your lesions at such an early stage. Count your blessings that you have such an opportunity to live long and healthy. Don't dwell on the negative. Most of us would trade spots in an instant. Consider your diagnosis a wake up call. You've been given a wonderful opportunity to have a second chance at life. I say, pull yourself together and devote the time you worry toward smelling the roses. Your family needs that from you. As scarey as this is, beliieve all will be fine. Please read this as encouragement, not a scolding.

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

You're probably telling the people who need to be told. They are probably exhibiting the mixture of shock, horror and confusion that I came to call 'cancer face'.

Sorry to find you here, but youre very welcome. Sounds like you are doing all the right things. You have a plan and a timeline, let it happen one day at a time. You have caught it early so everything should be fine.

Rule #1 Dont google this disease. Everything you will find will be out of date or insane or both. Frankly I blame the Lizard People.

Rule #2 Dont Panic. You caught it early. Its all good.

You're in the medical system. Listen to them and let them look after you. You are in very good hands. Good luck

mrou50
Posts: 389
Joined: Mar 2013

You caught the issue early and there is still a chance it is not cancer so try to focus on the good. If it is cancer since you caught it early your chances are great a living a full and happy life.  Either way the biopsy comes out stay positive and enjoy life.'

Mark

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Sorry you have to be here. Given that, you're in a pretty good position at this point having caught it early. Well over 90% of those tumors (Stage 1) caught early like this are cured from the surgery alone.

Still, you have to take care of business and get it out and get your followups. Recurrences caught early also increases your chances of long term survival, so you want to be followed regardless after its out so if it does come back you catch it early while it's operable still (if it even turns out to be RCC, which you may be very fortunate and it's not).

If you have a chance at a really good surgeon at MD Anderson, I'd go for it. Don't let loyalties get in your way of picking the best surgeon available. You want someone that's done a lot of these.

Keep us informed.

Wishing you well,

Todd

P.S. Small cysts like your other one are very common (unless the doc said something about it being abnormal). Many people have cysts and it gets more and more common as we age to have those.

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

The smaller the mass, the better -- Regarding your surgery, recovery, and odds for "Uncle NED" (No Evidence of Disease) to visit for a long time.  So glad you had low back pain AND a medical team that followed up on it with imaging.

Still, it's not just a quick trip to urgent care.  Keep us posted, remember to practice your breathing, and walk. Oh -- and to focus on being present to the Life You're Living Now. 

All the best --

Jerzy

medic1971's picture
medic1971
Posts: 199
Joined: Sep 2015

Hi Apple12,

I was exactly where you were July of last year.  They found a 2.1cm mass on my right kidney, by accident, during CT scan.  I too went to MD Anderson for a second opinion.  They too found a second mass on my right kidney along with a 3.1cm cyst.  No one but me seemed concerned about that large cyst.  It's did not enhance during the scan and since it was in the middle of the kidney Dr. karam did not want to mess with it.

Trust me when I say this, you dodged a bullet.  I know it's hard to see that now, but you did.  There is a very good chance that you could have had this another 10 years before you knew anything about it.  PLUS you are getting treatment at MD Anderson, one of the top cancer treatment centers in the world.

On October 23rd of 2015 I had a robotic partial nephrectomy.  Surgery last about 4 hours, he removed two mass (0.8cm and 2.2cm) from my right kidney and I got to keep more than 95% of the kidney.  I spent two days in the hospital, four days in the hotel, and flew home exactly 6 days after surgery.  I did take 6 weeks off of work, but only becasue I have so much sick time at work.  I could have gone back in about 3 weeks if I needed to.  

Those first 48 hours were hardest mainly because I could not sleep and they came in around 3 AM for morning blood draws.  The pain wasn't all that bad.  Getting in and out of bed was not fun.  Pain wasn't too bad.  I was on pain meds around the clock for the first 48-72 hours, but after that only at night.  

Couple of suggestions, If you are staying at a hotel I would highly recommend the Marriott that's right next to MD Anderson.  During my last follow-up we stayed at the Rotary house and I wasn't a fan. There were a lot of sick people there and I kind of felt like I didn’t belong there

Please check my bio, there is a really good link to a video about the treatment for the small renal mass.  That video gave me a lot of comfort and hope. 

Hang in there, the next 6 to 12 months are not going to be easy, mentally speaking.  If you need something to help with anxiety don’t hesitate to ask your doctor for something.  I was on Xanax for a while, but don’t stay on those for too long. 

Good luck and feel free to inbox me if you have any questions or concerns. 

Jason   

apple12
Posts: 4
Joined: Nov 2016

Thank you all for your encouragement. I'm on my 2nd day post op. Surprisingly, yesterday was better than today. I'm struggling with maintaining a steady pace of pain control. It's been a bit of a roller coaster today. Hopefully tomorrow is better and we can get closer to going home. We don't have pathology results back yet, but the doctor said it didn't look good when he took it out. So we should know more in the next few days.

medic1971's picture
medic1971
Posts: 199
Joined: Sep 2015

3rd day post-op was my worst day.  I felt like hammered dogsh*t.  The 4th day was a little better and everyday after that I felt a little better. 

Hang in there it will get better.

Jason

apple12
Posts: 4
Joined: Nov 2016

Doctor called with the pathology results this morning - clear cell RCC stage 1 grade 2. I'm glad to be out of the stress of waiting, but still in the post-op pain management funk, so not really ready to process anything yet. Thank you to all of you for your earlier responses, especially Jason for helping me get to this point. I'll be spending more time reading through old posts and may have more questions as I put all of this into perspective.

medic1971's picture
medic1971
Posts: 199
Joined: Sep 2015

Thank you and I hope you are feeling better.

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Now your body will be catching up with the effects of the "spring cleaning" (only it's fall-almost-winter cleaning).  Whether the mass was little or big, your innards had a heck of a workout.  Take it easy, walk and breathe (The exercises... odds are really good that you're still breathing at this point). 

Keep us posted --

Jerzy 

donna_lee's picture
donna_lee
Posts: 963
Joined: Feb 2009

so can stress.  I definitely won't say your's is a cake walk, but you will be able to walk away from surgery with the hope that all that ails you is in a pan for biopsy.

There are people on here who have had it lot's worse than I have and are still on here encouraging others to fight on and stay calm.  Guess that's something that comes with experience and age....but we won't discussed the aged ones around here.  Right Iceman!

Have HOPE, get a good Dr. that you can communicate with, follow directions, get regular follow up tests, and continue to LIVE.

Love and hugs,

donna_lee

donna_lee's picture
donna_lee
Posts: 963
Joined: Feb 2009

Worrying about pain in recovery absolutely never entered my mind.  I was more concerned about awaking from recovery and still being alive.

Deal with the current problem and don't focus to far out there.

Donna

apple12
Posts: 4
Joined: Nov 2016

Update in original post

APny's picture
APny
Posts: 1987
Joined: Mar 2014

Oh, Apple, that really sucks being told you're positive for VHL. Please keep in mind that while it increases the probability of developing more tumors it's not predestined to be true. In other words, yes you're more at risk than someone who's not positive for VHL but that doesn't mean it will happen. I'm sure you'll continue with yearly monitoring so should it recur you can get it early. Also, medical advances in diagnosis and treatment can change everything. All the very best to you; you must be so devastated to hear that but again, it's a risk factor, not a gurantee. Hugs!

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

My heart goes out to you.  I am a double-mutant and I haven't been given an average life expectancy, but I know I'd be devastated if I heard the news that you had to hear.  I'm glad that you are (or were) getting care at MD Anderson, which I know is the best, and my prayer and hope is that since they are learning more every day about these genetic mutations, that they can catch up to all the knowledge with effective treatments in order to prevent cancer and hopefully ultimately have life expectancies become higher as a result.  Big hugs to you, sending much love, light and support to you.  Please message me any time you ever feel you might need someone to talk to.  

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