New with RCC.

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.  

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.

Texas_wedge said:

Up the pole!

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.

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

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.

djc2 said:

speed of growth

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.

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.

Texas_wedge said:

speed of growth

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.

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....