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Avalon 11-09-2006 02:21 PM

Question on kidney cancer
My boyfriend, age 55, was diagnosed with kidney cancer (renal cell carcinoma) after a large mass was found on his kidney. The kidney was removed, but a small spot was seen on the other kidney. He had an MRI and goes for the results on Mon. He told me he doctor mentioned the possibility of more surgery on that kidney, or "a pill" he could take. He doesn't really understand the medical terminology, nor does he want a lot of detail, he just wants to "get it fixed". I was not with him during his follow-up visit to the doctor nor will I be with him Mon. (We just got back together since he's been sick; he has his sister and another close friend accompanying him to the doctor and as much as I want to be there, four will be too many in the doc's office.) So unfortunately, I can't ask the doctor my questions in person. I don't want to give my boyfriend a "list" of questions because I don't want to scare him.

I am very afraid that the spot on the other kidney is also cancer. I don't know what 'stage' the other kidney was, but I believe they took part of the ureter with the kidney. I am concerned that the other spot is the beginning of cancer that spread from the other kidney. Does this sound plausible? Will the MRI show if the new spot is cancer? If they operate on his one remaining kidney, will he still be able to function with only one partial kidney? Any idea what this 'pill' is? I've read posts from Brighterday about a pill that made her husband very sick. What is the prognosis for kidney cancer? I've seen statistics on 5-year survival rates that aren't great. I'm extremely worried!!!! I will not share any negative information with him, I want him to remain positive. I just am thankful I found this board and hope some of you can share as much as you can about kidney cancer. Thank you!

JennColorado 11-10-2006 12:08 PM

Re: Question on kidney cancer

Sorry to hear about your boyfriend. My dad was just diagnosed with RCC, and had the left kidney removed.... from what I have learned it is possible to spread to the other kidney along with other areas...
I really wish you had the opportunity to go with him to the doctor... if you don't, I think the list of questions is a great idea...I sent my questions with my mom to the doctor, due to me not being able to be there. It is better to have answers than to constantly worry...
As far as the pills go, in my dad's case they are offering Sutent or Nexavar (I may have spelled those incorrectly)... Remember that the pills have different reactions with different people... although I find this board and everyone's postings very helpful...
I hope you find a way to get answers to ease your mind...
Good luck!


Avalon 11-14-2006 04:31 PM

Re: Question on kidney cancer
I ended up being able to go to the doctor's with the boyfriend because his friend cancelled last-minute. I was so glad I was there! The situation is this: The spot on the one remaining kidney does appear to be kidney cancer, same as the other side that was removed. It is a small mass (about an inch) and has not gotten any larger since the last MRI a few months ago. The doctor said if my boyfriend were a lot older, he would say to just monitor it. But since he's still relatively young, it needs to come out so it does not get larger and/or spread. (He said they cannot tell whether this cancer spread from the other kidney.) The previous surgery was laparascopic, with a relatively short recovery. This surgery (partial nephrectomy) cannot be done laparascopically; it will be major surgery with an 8-10-week recovery. The doctor said the kidney can function at almost 100% even after a partial nephrectomy, though there is a (apparently rare) risk of temporary or permanent dialysis. There is no follow-up chemo involved, unless the cancer pops up somewhere else.

The boyfriend doesn't want the surgery until after 1/1 (financial reasons). Because the mass seems stable, the doctor gave the OK, though I am really concerned with leaving it in any longer than necessary. I couldn't really ask some of the detailed questions I had -- the prognosis, the likelihood it could spread even though it's still small, etc. I did not want to scare my boyfriend and his sister, who was also there, by asking too many questions -- but I am really scared myself....probably because I have access to so much more information than they do. But at this point, it doesn't do any good to worry. It is what it is, and we just have to get him through the surgery and hope/pray that's the end of it.

JennColorado 11-15-2006 08:46 PM

Re: Question on kidney cancer

I am glad you got the chance to go to the doctor!! Being scared is completely understandable. Good luck with the surgery and recovery. My father is having a hard time eating since his surgery, however, we are taking a trip to Mexico next week to spend some time together, and hopefully he will get some rest and start eating normally. I think waiting until January will be alright, seems how it didn't get larger in the last couple of months, but then again with this cancer you never know.
Please keep us posted on your boyfriends situation. Take care!


Avalon 11-21-2006 09:15 PM

Re: Question on kidney cancer
Thank you, Jenn. I honestly don't think the BF quite understands the risk with this cancer -- he mentioned tonight that he wishes he could just forget the surgery altogether. I think he thinks maybe it would have been OK to just leave it in and monitor it -- then if it starts growing, do the surgery. He's not understanding that it could take off at any time, and could spread to another organ. His sister even said "oh please don't do it til after the holidays". I don't think I'm over-reacting, but holidays aren't important when there's a cancer inside his kidney and he already lost one due to cancer that became aggressive. The survival rate for kidney cancer that has metastasized is not great. I don't want to scare him, but I also could just shake him when he makes comments like that. I'm already freaking out that he's waiting til Jan. I can only pray that it stays stable until then.

Can I ask why your Dad is on medication? The BF had his kidney removed too, but they didn't put him on any medication post-surgery. Is your Dad's other kidney involved as well?

JennColorado 11-27-2006 10:46 PM

Re: Question on kidney cancer

Sorry for the late response, I just got home from a trip to Mexico with my mom and dad.... anyway, he is not on any medication yet. He is resting and recovering from the left kidney and 10 pound tumor being removed. The other kidney is not involved yet, as far as I know. However, it is in both lungs, you are right on the survival rate when it has metastasized is not at all great. However looking back at the whole thing, I am wondering also if it was the best option to slam him right into surgery... that has really taken a toll on my dad. I think as far as us being loved ones, we just want them to do whatever is available to get the dang thing out, or atleast as much as possible. In your boyfriends case, I think it sounds like he may have a chance at this fight, and I completely understand you wanting to remove it as soon as possible, however, they (the person with cancer) need to do it when they feel is best. I hope that helps in some way.
My dad will be starting either Nexavar or Sutent in mid to late January... he is getting a few family trips in, family photos, and it will be after the holidays... somedays he is ready for it, others he is not sure if it will be worth it in the long run. Keep me posted please. Good luck, this isn't easy on anyone involved... my prayers are with you!

Avalon 11-27-2006 11:13 PM

Re: Question on kidney cancer
Jenn, glad you had a good trip. I was away too -- spent 5 days in Southern Calif. -- gorgeous! These trips help get our minds off things! How old is your Dad? I know how you feel, second-guessing the surgery. I did the same thing last year -- my Mom was very sick at home, I took her to the ER and insisted they admit her and keep her until they figured out what was wrong. She went through a bunch of stressful tests and wound up having a stroke. I blame myself -- maybe it wouldn't have happened if she hadn't been so stressed. So I know what you mean. But with a 10-lb. tumor, you had no choice, really. My BF's surgeon said this cancer can be aggressive. Keep in touch and I'll do the same. Thank goodness for the support of these Boards!

JennColorado 11-28-2006 12:06 PM

Re: Question on kidney cancer

My dad is 59, I am turning 30 on the 7th. I am glad you got a little break also! How is your mom now? If life were just a little simpler and less painful! Thanks for your support. I will let you know how the medication works out for my dad! Hopefully after the surgery on your boyfriend you will not need to do any of the medication follow up and it will not come back. There is some success from what I have read if you can get it in time! Also, did he schedule his surgery yet? I know you were saying after January 1, but didn't know if you had the date set? We just have to enjoy the time we have, it is more precious than ever!! Take care, please keep me posted!!

Avalon 11-28-2006 11:39 PM

Re: Question on kidney cancer
Hey Jenn,

Yes, your Dad is too young NOT to have had the surgery. My BF is 56. His doctor scheduled the surgery for 1/5. BF was surprised (didn't expect it that soon after 1/1), but the doctor is not playing around.

Thanks for asking about my Mom -- after the stroke, she was slurring her words and was kind of out of it. I was a mess. But miraculously, within a few days she was talking fine and you'd never know she had a stroke now. The brain is a wonderful thing -- amazing how it can heal itself. However, she lost her appetite and taste buds, and I think she's lost her zest for life. So it did take a lot out of her (she's 84). I have resolved that I will not allow her to be hospitalized or have major tests or surgery unless it's a dire emergency.

So we do need to treasure every day with our parents. Anyway, we'll keep in touch!

JennColorado 11-29-2006 11:49 AM

Re: Question on kidney cancer

I am glad they have scheduled the surgery as soon as that! The sooner they can help the better. I hope you enjoy your Holidays with your loved ones. That is great about your mom. I will definately keep in touch, you've been great. Thanks for everything.


Avalon 02-03-2007 11:06 PM

Re: Question on kidney cancer
Hi Jenn and all -- just wanted to give you an update on the boyfriend's kidney cancer situation. As mentioned above, he had one kidney removed last summer that had a large aggressive tumor on it. They also found a small lesion on his other kidney, which turned out to be the same type of renal cell carcinoma. He had surgery on 1/5 to remove the mass. They were able to save 80% of his kidney and it seems to be functioning fine! He has home from the hospital in 4 days and despite the fact they said the surgery would involve a lot of pain with a long recovery period, he's up and around and feeling fine. He really has done so well.

At his follow-up visit with the surgeon, he asked what the odds were that it would come back. Surgeon said 20-30%. I thought those odds were kind of scary, but there's nothing he can do except pray he's not in that 20-30%. (I think typically, if it does come back, it's somewhere else in the body like the lung.) Meanwhile, he just lives life normally -- no chemo or anything. I was not with him at his follow-up visit but would have liked to have asked what "stage" the RCC was.

So that's the update. Jenn, I'd love to hear from you to see how you and your Dad are doing. Thanks for your support.

JennColorado 02-06-2007 01:56 PM

Re: Question on kidney cancer

I am so glad to hear your great news!!! Amazing he is recovering so fast also. My dad is doing alright, he started on Sutent and has only a few side affects, but for the most part is doing well.
Thanks for keeping me posted on your dad, we will continue to pray that the cancer doesn't come back.... I think the odds are in your favor if they caught it in time to remove it completely!!!
Enjoy every moment, seems we all have learned that life is very precious!!

Take care! And again, CONGRATULATIONS!!!

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