Was told July 14th of a 12cm mass...

BadBoneshaker

June 28th I had very bloody urine when I went to void... 3 hrs later it happened again... I went to Urgent Care that evening. They took a urine sample and it was clean. June 29th 30 hours later, another bloody urine... none since. They set me up to see a Urologist. I went there gave another urine sample, once again clean. From there the Urologist set me up with a CT Scan, July 7th... I got the call Friday, July 14th that I have a 12cm mass in my left kidney and I am scheduled to have my kidney removed Friday July 21st.

Croakerjoe

Hello..

I'm assuming that your scans did not reveal any possible spread from the primary tumor because you didn't mention it... That is good, if so.

You probably have a lot of questions and there are definately things you should know.

I'll tell you a few but you may want to visit this site:

http://listserv.acor.org/archives/kidney-onc.html

And join the kidney-onc mailing list. You can find out pretty much everything you'll need to know about Renal Cell cancer there. There are also a bunch of great people that understand just what you're going through. This site is great but the kidney-onc list serv tends to be more active.

See another fantastic site for RCC info at:

http://cancerguide.org/kidney.html

Once a solid mass is discovered on the kidney, there is a 90% (or so) chance that it is Renal Cell Carcinoma of one type or another.. the most common is Clear Cell.

In the mean time, be sure to get a copy of your pathology report. It's important to know the subtype, the grade and stage of your tumor. Also, you should seek an expert if at all possible. RCC is represents only about 3% of all cancers making it not rare but still uncommon.

Feel free to reply here if you have questions, I'll try to answer (I've been dealing with RCC for the last 2 years) but you'll do much better at the sites above and by reading the posts here as well.

Good luck!

BadBoneshaker

Croakerjoe said:

Hello..

I'm assuming that your scans did not reveal any possible spread from the primary tumor because you didn't mention it... That is good, if so.

You probably have a lot of questions and there are definately things you should know.

I'll tell you a few but you may want to visit this site:

http://listserv.acor.org/archives/kidney-onc.html

And join the kidney-onc mailing list. You can find out pretty much everything you'll need to know about Renal Cell cancer there. There are also a bunch of great people that understand just what you're going through. This site is great but the kidney-onc list serv tends to be more active.

See another fantastic site for RCC info at:

http://cancerguide.org/kidney.html

Once a solid mass is discovered on the kidney, there is a 90% (or so) chance that it is Renal Cell Carcinoma of one type or another.. the most common is Clear Cell.

In the mean time, be sure to get a copy of your pathology report. It's important to know the subtype, the grade and stage of your tumor. Also, you should seek an expert if at all possible. RCC is represents only about 3% of all cancers making it not rare but still uncommon.

Feel free to reply here if you have questions, I'll try to answer (I've been dealing with RCC for the last 2 years) but you'll do much better at the sites above and by reading the posts here as well.

Good luck!

I actually haven't been told much more at this point... I have to admit, I didn't ask enough questions the day I got the news, but I have been forming quite a list of them for our face to face meeting... I have pre-testing at the hospital Tuesday, A consult session on Wednesday, and surgery on Friday... I'm sure I'll be overwhelmed with info from the doctors in the next few days...

How fast can these actually grow...??? How long did it take to get to 12cm...???

Croakerjoe

BadBoneshaker said:

I actually haven't been told much more at this point... I have to admit, I didn't ask enough questions the day I got the news, but I have been forming quite a list of them for our face to face meeting... I have pre-testing at the hospital Tuesday, A consult session on Wednesday, and surgery on Friday... I'm sure I'll be overwhelmed with info from the doctors in the next few days...

How fast can these actually grow...??? How long did it take to get to 12cm...???

I really can't help you with those questions though as I understand it, RCC can remain dormant for quite some time then suddenly grow like wild fire for no apparent reason. I believe this is especially true for metastatic RCC.

My tumor was 6.5 cm, and the dr. said it may have been growing inside me for a number of years but there was no real way to tell. My symptoms were exactly the same as yours.

Again, I urge you to try the kidney-onc list serv I mentioned above. If you need help signing up for it let me know. It's really the best place I've found for asking questions and general support. You can often get answers within minutes of posting.

I only tell you this because someone pointed me there 2 years ago and it was the best thing I ever did in regards to RCC.

This site is great too, of course but as I said, it seems much less active.

BadBoneshaker

Croakerjoe said:

I really can't help you with those questions though as I understand it, RCC can remain dormant for quite some time then suddenly grow like wild fire for no apparent reason. I believe this is especially true for metastatic RCC.

My tumor was 6.5 cm, and the dr. said it may have been growing inside me for a number of years but there was no real way to tell. My symptoms were exactly the same as yours.

Again, I urge you to try the kidney-onc list serv I mentioned above. If you need help signing up for it let me know. It's really the best place I've found for asking questions and general support. You can often get answers within minutes of posting.

I only tell you this because someone pointed me there 2 years ago and it was the best thing I ever did in regards to RCC.

This site is great too, of course but as I said, it seems much less active.

Thank you by the way...
I signed up at that site...
http://listserv.acor.org/archives/kidney-onc.html
Starting my research there...

Croakerjoe

BadBoneshaker said:

Thank you by the way...
I signed up at that site...
http://listserv.acor.org/archives/kidney-onc.html
Starting my research there...

Great..

You can search the archives there on whatever topic you are curious about or better yet, post a message with your questions.. I guarantee you'll get a number of good responses from people that really know what they're talking about.

LynnBortka

Croakerjoe said:

Hello..

I'm assuming that your scans did not reveal any possible spread from the primary tumor because you didn't mention it... That is good, if so.

You probably have a lot of questions and there are definately things you should know.

I'll tell you a few but you may want to visit this site:

http://listserv.acor.org/archives/kidney-onc.html

And join the kidney-onc mailing list. You can find out pretty much everything you'll need to know about Renal Cell cancer there. There are also a bunch of great people that understand just what you're going through. This site is great but the kidney-onc list serv tends to be more active.

See another fantastic site for RCC info at:

http://cancerguide.org/kidney.html

Once a solid mass is discovered on the kidney, there is a 90% (or so) chance that it is Renal Cell Carcinoma of one type or another.. the most common is Clear Cell.

In the mean time, be sure to get a copy of your pathology report. It's important to know the subtype, the grade and stage of your tumor. Also, you should seek an expert if at all possible. RCC is represents only about 3% of all cancers making it not rare but still uncommon.

Feel free to reply here if you have questions, I'll try to answer (I've been dealing with RCC for the last 2 years) but you'll do much better at the sites above and by reading the posts here as well.

Good luck!

Hello, this is my first time to this, or any other, cancer survivor web site. I just had a partial nephrectomy and, immediately after surgery, the surgeon pronounced to my family that they "got it all", that "it was totally encapsulated". later, the pathology report showed that, in fact, cancer cells were present in the fatty tissue around the kidney, and that it was stage three. I'm now wondering if the prudent course of action isn't to go go back in and have the entire kidney removed. I've expressed this to the surgical staff, but haven't received a reply or opinion. Has anyone else had this issue?