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Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Two months ago i thought I had a kidney stone on the left due to left flank pain.  Regular Doc said nope urine is fine... you have a pulled muscle.  I didn't beleive him. I waited 2 weeks.  Dealt with sometimes excruiating pain with what felt like internal burning until one day I said nope... I am going straight to the urologist.  Called and got in that morning!  Unbelievable.  Xrays were negative for stones so a CT was ordered.  While waiting for insurance approval I had an episode of pain that sent me to the ER.  They did the CT and much to thier and my surprise I did not have stones on the left. I didn't have any stones and nothing that could be seen to be causing the pain.  But there was a solid 4cm mass on my right kidney.  Immediately went back to the urologist, had a CT with and without dye then had a CT guided needle biopsy that came back non-diagnstic meaning they couldn't tell if it was or wasn't cancer.  After a couple more opinions I opted to bypass any more biopsies and had a robotic partial nephrectomy on Sept 6.  The tumor was not very deep in my kidney and they only took 10% of the kidney. It was 4.5 cm with clear defined edges and was Clear cell RCC.  Stage 1 grade 2. I will be monitored for the next 5 years but my doctor says i don't need any other treatment.  I am worried about recurrance or spreading that was missed even though he said everything is clear.  I don't really have any questions.  I am just thankful there is this board to come to and read about others experience. Everyone is saying I am a cancer survivor... But I don't feel like one since i was never really sick or had to have more radical treatment.  

icemantoo's picture
icemantoo
Posts: 3304
Joined: Jan 2010

Angie,

 

You don't look 521 years old. The worst is behind you. After 5 years suggest to your doctor an Ultrasound every year. Thats what I have. I was nephed 15 years ago.

 

 

Icemantoo

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

I'm 51 :)  

 

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

It's nice to meet you.

Mine was 4cm, stage 1, grade 2 and I am not expecting recurrance. It is rare but can happen.

But not to us, right?

Steve.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

I am sure you will be fine! So lucky they found it and took care of you!!!

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Not to us Steve!  We kicked Cancers a$$!

 

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

A small stage 1 and grate 2 tumor is almost the best a cancer survivor could expect. Stay positive, the odds are in your favour

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

So sorry you are here but thank you for sharing

its sounds like you  got in the right place at the right time

My mass is 4.2 or 3.7 depending on who you talk too

Surgery is on Sept 21st

 

can I ask where on the kidney yours was and what shape it was

plus  can I ask how the surgery went

are you still in much pain

 

Many Thanks

 

Annie

 

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Annie,

 

I am feeling really good.  Much better than I expected to feel at this point.  I have actually been working from home since Monday.  Wearing pants has been an issue and I took pain meds about every 5 hours until yesterday when i realized my pain had changed alot.  Today I have only had one pill.  I have 5 incisions.  One is about 4 inches just under my breast bone.  It has given me the most problems 

I was not as anxious or nervous as I expected to be he day of surgery.  Before they took me to the operation room they gave me something to relax and as soon as it hit my veins my last little worry was gone.  I remember moving over to the surgical table and then the next thing I remember is the rcovery nurse waking me up. 

The first few days at home were hard trying to get into and out of bed or from a sitting position.  I did have a wedge or incline pillow that helped alot.  I sure wished I had a bed that i could raise and lower though!  COughing or sneezing and even laughing the first few days were a challenge and riding in a car wasn't too fun either.  I went to the store today for the first time and it wasn't that bad!  

My CT report says this about my tumor: There is an enhancing mass th the upper pole of the right kidney measuring 4.7 4.4 cm in greatest axial diameter x 4.3 cm cranocaudal.  One Doctor said it was perched on top of my kidney like it was waiting to be plucked off of it.  I asked my doc to take pics of it for me and it is about the size of a walnut.  It has very clear well defined margins on the CT and after it was out.  

I know you are nervous and anxious and I can't and not expect to be able to change that for you.  But you will do fine.  My mind ran with me for weeks before this was removed and I imagine yours is as well.  Try to do something that will take your mind off of the procedure.  I started "nesting" for a week before mine buying things I thought i would need and wanted to have after I was home. I cleaned and organized the house and made all kinds of lists of what ifs for everyone.  I felt like I was having a baby!  It kept my mind off what was happening and I had what i needed while I was at the hospital and then at home. 

 

I will keep you in my prayers and thoughts!

 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

th was very useful. I am not worried about the operation in general  it's more about if something goes wrong but I am a wimp when it comes to pain so happily pay the price on this one

Your tumour sound similar to mine its looks like a   big walnut  sticking out of top of kidney

any size is too big Of course

 

trying the nesting but I only have Two sons and my energy is not strong enough to do more than the normal tasks but  I am stll workiing

 

 I wish you well and will keep you posted

daisybud's picture
daisybud
Posts: 500
Joined: Jan 2016

I also had pain but they thought gallbladder.

I thank God that I had pain otherwise might have not found it early.

Welcome aboard,

Kim 

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

My son is a senior in college. I still felt I needed to plan and get things ready as if I were going to be unable to do for myself. I kept thinking about the what ifs that I'm sure everyone in this position th about. 

My pain has been diagnosed as shingles without the rash. 2 months from the first pains I still hurt on that side. Not daily but it's there. It became a non issue once the mass was found on the other side.  I am so thankful for that pain. Had it been shingles with a rash I would have never had a CT for kidney stones. The mass would not have been found probably until after it had spread!  

 

my Mom passed away from renal failure. Before she got really sick, 20+ years ago, I tried to give her a kidney. She refused. Told me I would need my kidney one day. That was my first thought when I was in the ER bring told that there was a mass and not to worry because even if I lost the entire kidney I could liv a normal life with just one. 

 

Very Sobering moment 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

can I just check.. you say yours was 4.5 cm. is that from the pathology report

plus what size did the  Ct scan on diagnosis say?

Annie

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

The first CT said 4.0x4.0x3.7. The second CT with contrast dye said 4.7x4.4x4.3. They were 2 days apart read by different doctors.  The impression on the second Ct was the 4.7 enhancing mass on upper pole of the right kidney should be considered as renal cell carcinoma until proven otherwise.  After it was out I got pic of it with the riuler from my doc. When he called me this week with the path report he referred to it as 4.5cm in size. I am going to ask for a copy of that path report to get more exact information. 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

and that was about  six weeks apart?

Today I feel terrible no energy and feel  as if not breathing right... very very scary

five days to go and every day is a nightmare

My son who I cant tell is being a complete idiot and he is normally a very good child   He is 17

do you feel different now that it is out

 

 

Rockspin
Posts: 77
Joined: Aug 2017

I had mine out total kidneys Tuesday 9/19, 3.7 tumor  and now I'm recuperating. It's a slow processs but I'm so glad it's out of me. Now I'll wait for the pathologist report. 

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

I found out about the mass August 2. Was told August 4th it was RCC. i beleive the difference in size in the CT is purely based on what could be seen and the difference in the contrast CT showing a better view of it. My surgery was Sept 6 and the mass when removed is almost exactly the size the second Ct showed a month before. 

My son was freaked out by this.  he lost all but one grandparent to cancer.  He is 21 so he has a little more maturity this time to deal with that but he did have a change in his behavior. He almost seemed to become more adult like but clingy like when he was younger  he was home from school when I got the diagnosis and would come lay on the bed with me. He started asking me to write down how to make all the food i make that he loves  but he also googled and read a lot about the disease. I think the biggest thing that helped him was the advanced biology classes he has taken.  He had dissected a kidney and completely understood  he was reading and what my doctors told us.  after I woke up from surgery his real emotions came through and he was relieved It was out and they were saying I had a very high recovery rate. 

 

I feel pretty good. I was having a lot of fatigue before surgery but I also wasn't sleeping good. I don't have any pains from that side. I had a TAP block so the first day after waking up my abdominal pain was not as intense as it would have been. I totally recommend that procedure. The anesthesiologist offered it the day of the surgery. I would ask about it or at least read about it before your surgery.  I was not aware of the procedure until the doc asked if I would like one. 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

i will ask

So glad you are doing well and you have this over you

Result is great news 

thank you so much and hope and I am back with good news

Annie

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

I hope for the best for you too!

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

HI Angie! Glad you found us! We're here to support you, inform you best we can and help you get on with your life. You have a very good chance of never seeing anymore Cancer. That is what is nice about having it contained inside the kidney. But I wonder what was causing all your pain. did your Urologist/surgeon ever tell you? Inflammation perhaps?

I had about the same size tumor as you (stage I) and now am 3.5 years NED =No evidence of disease. I also had referred pain (though again surgeon denied it was related to tumor). As my primary doc said, well if it goes away, then you know it was related to cancer. LOl

Now I did use a lumbar supportive, velcro wrap ( found in any drug store) to hold my recovery muscles etc and it helped. I even wore it to bed. Helped me get UP easier.

I also am a firm believer in using ICE, like those dry ice packs you can get either from coolers or from drug stores and put them over your incisions, but not right on it. It reduces the swelling/edema caused by surgery. It really helped me use less pain pills. 

Also getting up and walking, NO lifting or exercise as your insides are still healing. I was told for 30 days I could not exercise.

AND..Soon enough you'll be on your own, healed and whole again. Your kidneys will work just fine. 

I got scans for first year or two, chest x ray and there is a blood test that shows any cancer elevations in your blood. Again, you should be just fine. RELAX hon!

Fatigue is common as you just had your insides abused via surgery. I was a bit anemic even though my surgeon didn't think is was necessary, I insisted he check my iron level. Yes it was a bit low. OTC, Slow FE (less constipating) helped.

Let us know if you need anything more from us. That is why we're here. 

Sending you healing, gentle hugs,

Jan

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Jan,

 

Thank you!  My pain on the left was said to be shingles without the rash. However they cannot test for it since I had chickenpox I would test positive. Every doc I've seen since the mass was found has been more concerned about the mass than the left flank pain. The left flank pain still happens. It's not daily. It comes and goes and has not been as severe as it was. It is either sharpnburning pain up under the skin that spreads around my side or it's a dull ache that sometimes responds to movement. The first urologist that found the mass said he felt it was shingles without the rash and that I possibly had nerve damage from it(not the exact words he used). I was hoping for referred pain but I have felt it a few times since I have been recovering from surgery.  My tumor was on the right  

Today the larger incision has been achy and tender around and below it some. But I've also cut back on pain meds. All incisions look well healed.  I have been moving a good bit. Walking down the drive and around the parkinglot of a nearby church.  I am listening to my body and slowing down when it tells me to stop. I am not doing any lifting and my family is doing the things I can't and making me sit. 

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

ICE it as that penetrates and its a natural reduces of edema. Good for healing!

And Shingles, really? Hmm..Like how doctors "guess" mecially w/o proof. 

I told my primary that maybe I had shingles, but she said no, it always presents with that horrible rash.

My immediate pain went away as I healed from surgery.

Remember YOUR insdies are still healing as you know. 

Nerve endings have been cut. 

Stay in touch, ok?

Hugs, Jan

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Jan,

Yep... Had I had the rash I never would have had the CT that found the mass. I have not had an episode of that pain since last wednesday.  I am hoping it is gone.  but I will be going to a new Primary care physician as my current one has not been on my list of favorites for a while now.  This RCC has made me realize I need a Primary I am comfortable with and that cares more than my current.  I only see him when I am "dying" because I feel like the service I get isn't the best.  I see a few "specialists" for my knee's and female etc... but not one main Doc that I feel the same rapport I do with my specialists.  Both my knees have to be replaced and never would I have thought that the surgery I would have this year would be for RCC!  I have been working on becoming more physically healthy to prolong keeping my knees by changing my diet, working out 4 to 6 times a week and have lost 49 pounds doing that.  I have had the gym on hold for about 6 weeks and cant wait to get back.  I use ice for my knees all the time but never thought about it for the left side pain.  I do have some lidocaine patches that have helped when it is bad.  I am hoping that it is now over.  

Thank you for being so kind and caring!

Angie

 

 

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Angie, good that you are seeing a new Primary. I adore mine as she has saved me many times over, with her knowledge and ability to think outside the box. She was right every time!

You had a partial correct? I think you can still take NSAID, like Advil and such. I miss my NSAID. I had RX Diclofenac but can not longer take NSAIDS. I loved Diclofenac its an anti-inflammatory. 

And do you take Glucosomine for your knees? It helps too.

KUDOS on weight loss and exercize program~

Sending you wishes for continued good health with Hugs,

Jan

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Jan,

 

I have glucosimine and have stopped taking it.  not sure why!  I saw my doc yesterday.  I feel better about everything. NO signs of spreading into the healthy tissue removed.  Scans in 6 months! He told me that I can have advil in a month BOOO!  but I will do it. I can ease back into my normal life and the gym!!  

 

So glad to have this group and the people in it!

 

Angie

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