CSN Login
Members Online: 10

New with RCC.

Patrick72
Posts: 14
Joined: Feb 2013

Hi all, I am new here as the post says. I am a 41 year old married male in otherwise decent health. Found the tumor (1.2 cm) due to a kidney stone. The stone was taken out on the 12th and a biopsy for confirmation was done on the 19th. I guess I got lucky that I had a kidney stone and found it so early.  My doctor said that the tumor might not have presented symptoms on its own for another 6 months to a year at which point they may have had to take the whole kidney. As it is I am only looking at a partial nephrectomy.  I'm rambling.  I just wanted to say hello.

icemantoo's picture
icemantoo
Posts: 1526
Joined: Jan 2010

Patrick,

 

You are one lucky man with the RCC caught so early. Your chances for a full and complete recovery are as good as they get. Unfortunately you have to go thru our little initiation called surgery. Mine was 10 and 1/2 years ago. Not fun, but it beats the alternative.

 

Icemantoo

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Let me chime in with  Iceman and your doctor in saying you are a lucky man, even if it does find you joining this elite club. The only point I disagree with is that it could well have been years--not months-- before you were diagnosed had it not been for your kidney stone. Many on this board find themselves  (my husband, one putt. included) diagnosed with advanced disease after experiencing basically no symptoms. So while I'm sorry of your need to be here, let me congratulate you on joining so early in the game.

Don't hesitate to hang around and ramble, question, vent, cry, and/or laugh with us. We all  have our moments, and this is a good place to let it all out.  

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

You are lucky they found it early.  Typically, RCC grows at less than 1 cm/year, and you would not have symptoms for multiple years (not 6mo to 1 year). 

I do not know how fast my cancer grew, but my father's is growing slow:  he has 12 masses on his kidney, the largest is 2 cm.
  Because of his age, the number of masses, and his overall health, for now they are monitoring the tumors. 

 

bry4856's picture
bry4856
Posts: 14
Joined: Nov 2012

Patrick yes you are in our club. I had no pain or symptoms but 12 years ago I discover after I primary doctor's visit a ct-scan showed 5 cm tumor contained in kidney. One month later my whole left kidney was removed and thanks to this find I recovered soon. 5 years later my right adrenal gland was removed. Pat keep the faith and thank goodness it was found. Surgery heals and life goes forward. Good luck and I am new to this wonderful site. Everyone keeps you informed with love and prayers.

todd121
Posts: 568
Joined: Dec 2012

And glad they found it early and it's small. I hope it's clearly in the top or bottom lobe also so you can save most of your kidney? I have to chime in and say you are lucky. I think it well could have been years before symptoms showed up. Somewhere I saw a good source as saying these tumors grow between 0.2-0.8 cm per year (something like that) on average I believe. I had a single bout of blood in the urine lasting late one night in December of 2011. It stopped by the morning. I went to the doctor a couple of weeks later to ask about it, and they did a urinalysis and said "no blood now". Nothing showed up again until late November of 2012 when I had bleeding again, but this time it lasted nearly 2 days and was accompanied by pain. I thought it was a stone, because I had had one 10 years ago. I almost didn't even go to the emergency room, because the experience with my previous stone was so unpleasant (one night in the hospital that cost thousands of dollars, 2 ct scans, and pain meds which did nothing but make me vomit, and still they just had me wait until it passed). I was lucky I went, because they did a ct (thank you ER doctor) and found a 6.8 cm tumor in my right kidney. Unfortunately, the tumor had grown into some of the small veins so that made me Stage 3. I had my right kidney removed in December.

Hopefully you'll be Stage 1, with a very high probability that the surgery will cure you.

Todd

Patrick72
Posts: 14
Joined: Feb 2013

Todd, it is on the upper part of the kidney. It does not seem to have had any growth into any veins. It has been graded as stage 1a according to the report that my urological oncologist sent out. As much as I do not enjoy surgery (Who does?) I how to get it done scheduled and over with soon. I have a follow up for the biopsy scheduled for the 7th. We  shall see if I hear any kind of results before then. It has been almost a week since the biopsy.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Patrick, I weary of hearing the panic brigade tell people to ignore the experts' medical advice and listen to them instead. 

Did your doctor really tell you that an item, whatever it is, measuring less than 1/2 inch could grow in 6 months to a size that would necessitate removal of your entire kidney?  If so, a doctor prepared to say that about something which they obviously know nothing about shouldn't be permitted to continue practising medicine. 

Maybe you've made a mistake and are misquoting your doc - I notice you say that your lesion is "graded as stage 1a".  Stage and grade are two different parameters.  It's doubtless stage 1a - the very lowest level - and probably also grade 1 - the most favourable grade but that can only be determined after surgery, and surgery is not sensible at this point.  It's likely that you could have it grow for another 5 years without need for surgery. It might also just spontaneously disappear without any form of treatment, or remain the same for the rest of a long life.

It is definitely contrary to the current opinion of leading kidney cancer experts to operate on such a minute lesion.  I'm betting your oncologist did not endorse immediate surgery.  If that's wrong, then you would be well-advised to seek another opinion from a kidney cancer specialist before even dreaming of surgery.

todd121
Posts: 568
Joined: Dec 2012

I said in a very poor manner, that I had a much larger tumor growing into the center of my kidney and into the collection area both, and yet I almost had no symptoms. So the idea this tiny thing could have caused symptoms in 6 months is ridiculous. I meant to contradict the doctor's statement.

And I have to say that a second opinion would be a great idea. Active surveillance for such a small tumor far from blood supply or lymph nodes, would be a reasonable approach.

I didn't mean to encourage surgery.

I also fully remember and understand that panic of wanting to get the thing out of me when I found out it could spread and that it was on my uncle's list of cancer's he would never want to have.

Todd

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Not trying to minimize this situation,but cmon 1.2 centimeters thats a baby why do some type of partial when there are less invasive procedures that can eradicate this little bugger and no i am not try to advocate how anyone should approach their situation since i am not a doctor but still 1.2cm sure is kind of little.

LKidd
Posts: 37
Joined: Feb 2013

Hi Patrick - It's Lkidd again. In reading this post, I would love to hear about your biopsy. I have one Monday 3/4. I am concerned about the sedation, how awake you are - I was combative under sedation before - how the biopsy felt, any pain? Did you bleed after, how did they make sure you didn't keep bleeding, any complications, and how you felt after. How much soreness or pain is involved? Or just back to yourself? Please share. It looks like you are just a bit ahead of me so your insight is valuable to me. Thanks.

Patrick72
Posts: 14
Joined: Feb 2013

Hey, my biopsy went really well and it was nearly painless. The worst part was when they were starting to put in the lidocaine. It felt like a few bee stings. Not comfortable but also not too bad. I had to sit in an awkward position due to the location of the tumor but that was not too bad either. I was given some light sedation to help with any discomfort and was told that I could ask for more if I felt I needed it but what they gave me was just fine. I was awake the whole time. When they were done they filled the hole that that the needle made with collagen and that helped to close up the hole and prevent bleeding. After that it was just a matter of waiting. I had it done at University of Michigan hospital and their protocol was to wait 4 hours after that particular kind of biopsy to discharge. Because the kidney is such a vascular organ they wanted to be sure that there was no bleeding afterwards. The first two hours after the biopsy I had to lie flat to let things heal.  AFter that I was allowed to sit up and move around a bit. No real bleeding.  I left with just a bandaid. If wherever you are going has a similar procedure the longest part by far is going to be the recovery. Since then, no pain or soreness though there was a little bit of bruising. However, I have not even had to take any motrin or tylenol because of the biopsy site. Took the rest of the week off of the martial arts classes just to be extra cautious but other than that, went right back to my normal routine.

LKidd
Posts: 37
Joined: Feb 2013

Patrick - Thanks so much for taking the time to tell me of your experience. Wow, I hope mine goes as well. Sounds like a piece of cake. I appreciate the detail. I am a little hyper, so laying flat for any length of time will be trying. Your post just made me feel better about the whole thing, so thanks again.

LKidd
Posts: 37
Joined: Feb 2013

I concur with TW. I would seek another opinion. I did. Mine is small, but not as small as yours. They wanted to do open kidney surgery. My 2nd opinion believes less invasive procedures is more sensible in my case with a biopsy scheduled for this Monday. I just didn't feel right about the surgery given no one is sure what it is, and it's small so I has some time to find out. I would agree that it actually could be nothing and sit there forever without growth or disappear, however, probably good to investigate. My 2nd opinion doc is really on the ball. I have been very comfortable going with his advice, and I hope he is right and all will be okay. If not, I will again go with his advice. Good luck, keep us posted. Feel good about being able to ask questions here or gain support!

djc2
Posts: 17
Joined: Nov 2011

Patrick, everyone's case is different and you will get some great advice on this site.  Mine was quite unusual---a small (1.8 cm) tumor that was discovered accidentially from a CT scan performed due to bleeding which was ultimately determined to have been caused by a bladder stone.  Although my surgeon suggested it could be wateched for a while I opted to have it removed largely for practical reasons: It was summer and I had some free time before my academic year began.  But there was emotion involved too:  while no one in my family had had kidney cancer, cancer had wrecked havoc in my life, taking many of my closest loved ones, beginning with my mother when I was just a young boy...I wanter that tumor out!  After it was successfully removed in an open partial nephrectomy it was determned that while small, it was Grade 4 due to it being 50% sarcomatoid. To this day I have not found anyone else who had such a small tumor with such a high % of sarcomatiod de-differentiation, a characteristic suggesting rapid growth. Due to this sarcomatoid characteristic, for eighteen months we hace been monitering with CT scans almost every three months.  Now, with no evidence of disease, I am beginnig to feel some relief and we are going to 6 month checks alternating ultrasound with CT scans (due to the hazzards of too much scaning.)  Recovery from the surgery was Hell, but it passed and I am feeling glad that I opted for removal.

But, my case was very unusual and, it is almost certain yours will not be similar.  And everyone's personality and circumstances (not to mention variation of disease) are different . I agree with everything that has been written on this board and encourage you to use it as an invaluable source of information and persepctive form those of us who are dealing with this disease first-hand, but I want to strongly reinforce you get additional professional opinions; as well as discuss your situation thoroughly with your loved ones.  Whether the tumor is removed now or later, by this means or that, or watched for a while, even if it disappears on its own, this disease will no doubt be a part of your consciousness for some time going forward, so it's important to build a good foundation for good decision-making and peace of mind.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

What an excellent and useful posting.  It's very good to hear you're continuing to do so well.  The team that evicted 'the pygmy shrew' knew what they were doing. 

In the intervening 18 months I've also never heard of another tumor as small as yours that was 50% sarcomatoid.  Of course, you also had rhabdoid features, like Nancy, but she had an 11 cm tumor that was 95% sarcomatoid and mine was 9 cm and mostly sarcomatoid but previously chromophobe, so it's not surprising that she and I have had recurrences and gone on to systemic therapies.  It's so good to have it confirmed that you're doing fine. 

I hope your added insights will help Patrick to handle his situation in the best way possible.

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

I am glad to here and see people like you all with Sarcomitoid tumors around.  I am about 8 months after my kidney was removed wth the tumor was 6 cm, but with Sarcomatoid features (15-20%, revised upward by by followup pathologists).  Mine metastisised to the lung, probably before the kidney was removed, but not id'd untill 6 month scans.

I like reading from people that are still around....

 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network