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I do have kidney cancer.

jnizzi
Posts: 16
Joined: May 2010

Hello everyone. I have only posted once before asking if you thought I had cancer. On Wedneday I went in for a kidney removal surgury that was supposed to be done lap but ended up starting that way and ended up with the open so I got the best of both worlds with 3 little cuts and 2 big cuts. The doc who had previously said he would be shocked if this was cancer told me it was RCC Stage 2. He said he "thinks" he got it all and I woudn't require any further treatment. I was really drugged up when I spoke to him so I didn't ask him all my questions. So here are my questions....
How do you know for sure that I don't need any further treatment if you "think" you got it all. From all I have read RCC can go to brain, lungs, liver and other random spots. He said I would go back in 6 months to be checked but I have never been checked everywhere??? Should I ask to be referred to an oncologist? He never told me the grade or the TMN staging stuff I have read about. He didn't tell me the subtype of RCC. I just feel like you have RCC stage 2 and I think we got it all and now you are done just seems like not enough information. What do you all think. I am 38 years old, have been married 2 weeks and have a 7 and 11 year old to take care of. I don't want to find out in a year that I should have asked more questions or demanded more test. Can anyone point me in the right direction. I'm sorry if I am sounding all over the place, I just got home from the hospital and am in a lot of pain still and am on serious pain meds. Thanks for all your advice!
Jenn

icemantoo's picture
icemantoo
Posts: 1528
Joined: Jan 2010

Get a copy of your surgery report, discharge summary and pathology report on your tumor. These may answer a few of your queations. You should have a follow up with your surgeon in a few weeks also. As Kidney Cancer survivors we all face a chance of it spreading, but that chamce diminishes over time. Good Luck and you will hopefully helping others on this forum 30 years from now.

auburn1
Posts: 5
Joined: Jul 2010

Hi Jenn, sounds like we are in the same boat. I had symptoms (blood and clots in urine) on June 9. Absolutely nothing before this. June 21 my right kidney was removed. June 28, I was told I had RRC stage II, grade 3 and a 9cm tumor. I am 33, married. The Dr. said it was a surgical cure and I am now cancer free, because there was no spread and that I was very lucky. I, like you, am a mess. I have OCD, so thinking "what ifs" is my middle name. I can't get over the fact I did have cancer, it is now gone, what if it isn't gone, etc. . .I am meeting with the surgeon Aug. 5 (he has been out of town) and I hope to get more answers then. I have to get scans every 6 months for a year or more.

I did go in last Tues. to hear about a clinical trial I was suggested for for prevention of it coming back. I have 6 more weeks to decide if I want to try it. The one nurse was awful, the first bad experiece at the hospital. She kept telling me my chance of it coming back are very good because of the grade. I know there is a chance, but she was so mean and kept telling me she only sees old, fat men who smoke, not young, thin women. Then the other nurse told me my prognosis was so good, whatever. This is all unreal. I have the same questions you do, but don't have all answers yet. Do get a copy of your pathology. I have an uncle who is a retired Dr. and I am sending it to him tomorrow. I do plan on getting some more advise. Lets keep in touch. Not that I would wish this on anyone, but it is nice to see someone with the same stage and around the same age:)

I am at 3 weeks recovery today and am almost feeling back to normal. I still get light-headed when I stand too fast and get tired easily, but my hubby and I walked around the entire block tonight. That was huge. Rest, try to walk as much as you can and drink a lot of water. Let me know if I can help.

lifelvr2009
Posts: 2
Joined: Jul 2010

I was diagnosed w/rcc Aug 09. I was 39 at the time. I had a 7cm tumor in my right kidney and had it removed. They said it was stage II clear cell. They said I was very lucky that it was caught in time. I have been getting CAT scans every 4 months-which I know has to be bad for me...but oh well. I am nearing my one year mark and feel ok. I go in to my oncologist on Thurs this week...havent had a scan since Feb....he will probably want another one. I have an 11 yr old daughter and a 20 yr old son that has already moved out. I get emotional all the time...you probably understand what I mean. w/b

jnizzi
Posts: 16
Joined: May 2010

I just met with my urologist/surgeon to ask more questions. He said I am cured. I asked him if I could donate blood or organs (like if I died in an accident) and he said they probably wouldn't want to use my organs at least for a few years of clean scans. So I am cured...but it doesn't feel like it. He told me the chance of it coming back was low 5-10%. I read about rcc online and it seems like it is a cancer for older, male, smokers so when they tell me I have a low chance of reoccurance it is hard to accept since my original chances of getting this were so low in the first place. I don't understand why they only do chest x rays and scans. What if it went to my brain? AHHH! If I think too much about it all I will go crazy.

What is the clinical trial? I guess I haven't researched clinical trials at all. Have you made a decision about that yet?

I am about 6 weeks after surgery and I am feeling pretty good. Still really tired by the end of the day and still a lot of internal pain when I move around too much.

Keep me posted on how you are doing! Sorry if I sound like a crazy person....This is just such a whirlwind. I went into surgery with the docs saying it shouldn't be cancer, I woke up and it was cancer...but they "think" they got it all, now I'm cured...all within 3 months!!! Crazy! I am really grateful that I am recovering!!!

icemantoo's picture
icemantoo
Posts: 1528
Joined: Jan 2010

I am 8 years post surgery and was in your shoes. I was given similar odds to those you were given. The fact remains that the vast majority of us who go thru the surgery and the doctor thinks that have got it all will lead a normal balance of their life. Sure our risk may be a little more than the general population but the fact is that we are much more likely to die of something else. So please look at this as you have been cured and you have in fact recovered.

auburn1
Posts: 5
Joined: Jul 2010

That is wonderful news, I will meet with my surgeon in Aug. I am 4 weeks tomorrow from my surgery. And, you don't sound like a crazy person, I am feeling the exact same way. I keep thinking the same thing, "why didn't anyone scan my brain?" Maybe, I will demand that at my next scan. I have talked to 3 dr.s who have looked at my pathology report and agree it was a "surgical cure", like you. We are truly blessed, especially for having the rarer subtype, Chormophobe, it is the least likely to spread, that is my understanding. How big was your tumor? Mine was 9cm, Also, where are your incisions? I am feeling sad, because one is causing my tummy to pucker funny and looks really odd, almost like it is anchored down. I have 4 ports and one vertical 3inch incision right of my belly button. That is the one that is uncomfortable at times. All are healing well and now that the glue stuff has fallen off, everything looks less scary.

Here is the link to the trial, I don't know if your hospital is involved with it. http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=478976&version=HealthProfessional&protocolsearchid=7944839
I think I have pretty much decided against it. I spoke to a friend from high school with liver cancer. He was given 5 years and tried an expensive, experimental treatment and he is in remission, but for us we are cured. My uncle (and dr.) said because my prognosis is so good not to mess with it. One dr. I spoke to said to do it and was all for it. I am VERY sensitive to meds, so taking a powerful drug might cause more harm than good.

It has been only 5 weeks since everything happened. Unreal. I am doing better, hubby and I went to a mall out of town and had a good time, tired from walking, probably the most yet. I have been reading a really cool book, Crazy Sexy Cancer, it is really good. It is very real and the author is a 30 something woman. I really like it:)

Keep up the good work and stay positive (don't worry, my husband tells me this daily, but I am programmed more like Eeyore). Keep in touch:)

auburn1
Posts: 5
Joined: Jul 2010

I just read a different post you wrote and we have literally the same diagnosis. Stage 2, grade 3, Chromophobe. It is the best we can possibly have, if we had to have it. Do you have a facebook or would like to e-mail? I went last week to a free cancer support organiziation. It was really nice, they had one survivor workshop that I think I can really benefit from. The other support groups are more for later staged cancers and people in treatment. I asked if there were any other people my age or with my cancer. The woman told me to contact someone who could look, but doubted it. It would just be nice to talk with someone who gets it. The more time, the better I feel, both mentally and physically.

I am meeting with an oncologist Monday to discuss nutrition and the trial (even though I have basically decided no). And then with my surgeon in Aug..

Have you been anxious? I have been really anxious recently, like something else has to be wrong with me, since I thought I was completely fine before all of this. I was just really, really hot. Have you experienced this?

Also, something else I did was start a website to keep friends updated. I am not sure if you are a private person, but this has been very helpful and thereputic. The wensite is http://www.caringbridge.org/ I really like it and it has been nice to write and say it once, instead of several e-mails/calls/etc. . .to family and friends.

Since all of this there are 4 of us who have contacted eachother from high school. How weird is that 4 within 2 years of eachother. One has breast cancer, liver cancer (mentioned him before), lung cancer (like us, surgical cure), and me. WEIRD~!!!

My husband's roommate and wife from collge sent me the coolest gift, a Relay for Life shirt with SURVIVOR on the back. Can't wait to wear it next year at our town's event:)

Ok, keep in touch and have a good week coming up.

Jrow
Posts: 13
Joined: Nov 2011

Really. When your surgeon pops in your room at 6:30 the morning after an open cut partial nephrectomy surgery while you are still on morphine drip and tells you facts about your cancer. Really? As if you are going to remember THAT conversation! I vaguely remember my surgeon saying that my tumor was Stage I, Grade 2, but the cells were very "angry"! Anybody ever hear that? My husband was there and says he never heard that... But he was sleepy too. I did get the pathology report later and I did have left side Grade 2 RCC, chromophobe. Mass was 3.5 X 3.0 X 2.2 cm.

That was 4 weeks ago and I am doing much better now after a few rough weeks. One week after surgery I was back in the ER with a leftover gallstone in my bile duct which was removed by an endoscopy. I had my gallbladder removed about 8 weeks before my nephrectomy. They saw the mass on my kidney incidentally during pre-gallbladder surgery scan. No symptoms .

I have my 3 month follow up tests in Jan.

Jrow
Posts: 13
Joined: Nov 2011

Really. When your surgeon pops in your room at 6:30 the morning after an open cut partial nephrectomy surgery while you are still on morphine drip and tells you facts about your cancer. Really? As if you are going to remember THAT conversation! I vaguely remember my surgeon saying that my tumor was Stage I, Grade 2, but the cells were very "angry"! Anybody ever hear that? My husband was there and says he never heard that... But he was sleepy too. I did get the pathology report later and I did have left side Grade 2 RCC, chromophobe. Mass was 3.5 X 3.0 X 2.2 cm.

That was 4 weeks ago and I am doing much better now after a few rough weeks. One week after surgery I was back in the ER with a leftover gallstone in my bile duct which was removed by an endoscopy. I had my gallbladder removed about 8 weeks before my nephrectomy. They saw the mass on my kidney incidentally during pre-gallbladder surgery scan. No symptoms .

I have my 3 month follow up tests in Jan.

Jrow
Posts: 13
Joined: Nov 2011

Really. When your surgeon pops in your room at 6:30 the morning after an open cut partial nephrectomy surgery while you are still on morphine drip and tells you facts about your cancer. Really? As if you are going to remember THAT conversation! I vaguely remember my surgeon saying that my tumor was Stage I, Grade 2, but the cells were very "angry"! Anybody ever hear that? My husband was there and says he never heard that... But he was sleepy too. I did get the pathology report later and I did have left side Grade 2 RCC, chromophobe. Mass was 3.5 X 3.0 X 2.2 cm.

That was 4 weeks ago and I am doing much better now after a few rough weeks. One week after surgery I was back in the ER with a leftover gallstone in my bile duct which was removed by an endoscopy. I had my gallbladder removed about 8 weeks before my nephrectomy. They saw the mass on my kidney incidentally during pre-gallbladder surgery scan. No symptoms .

I have my 3 month follow up tests in Jan.

Jrow
Posts: 13
Joined: Nov 2011

Really. When your surgeon pops in your room at 6:30 the morning after an open cut partial nephrectomy surgery while you are still on morphine drip and tells you facts about your cancer. Really? As if you are going to remember THAT conversation! I vaguely remember my surgeon saying that my tumor was Stage I, Grade 2, but the cells were very "angry"! Anybody ever hear that? My husband was there and says he never heard that... But he was sleepy too. I did get the pathology report later and I did have left side Grade 2 RCC, chromophobe. Mass was 3.5 X 3.0 X 2.2 cm.

That was 4 weeks ago and I am doing much better now after a few rough weeks. One week after surgery I was back in the ER with a leftover gallstone in my bile duct which was removed by an endoscopy. I had my gallbladder removed about 8 weeks before my nephrectomy. They saw the mass on my kidney incidentally during pre-gallbladder surgery scan. No symptoms .

I have my 3 month follow up tests in Jan.

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