Newly diagnosed

Hi...I've been a lurker here for a couple months but was hesitant to post since I didn't have a definite diagnosis yet.

A little background first: My name is Amanda, I'm 32, married and mom to two crazy boys, ages 14 and 5. I've always taken pride that I am (was) extremely healthy. I eat good, try to stay active...you know, everything they tell you to do to avoid any of the "bad" diseases. I mean, I'm not a complete health nut, but I do as much as I can and have time for.

Anyhow, I'd been having problems with the doctors finding microscopic blood in my urine since I was pregnancy for my youngest child. After I had him, my drs. said it was still there, but since he was so big (over 10 lbs) that it was possible that he damaged my bladder while he was in utero and that if it didn't go away or got any worse then I would be referred to a specialist. Fast forward to last August--I'm still having the blood in my urine but it hadn't gotten any worse. We went up north for the last weekend before school started but ended up having to come home early because I was having major stomach issues and was taken to the ER. They performed a CT scan on me there and found I had inflammation in my bowels and sent me on my way with an rx for an antibiotic in hand. (There's more to that, but I'll get to it later).

Fast forward to this May-I finally begged to be referred to a urologist because not only was the blood still being found in my urine, but suddenly I was having repeat UTI's and lots of spasms/pain when I had no infection. The one I was referred to did a procedure where they fill your bladder with fluid(don't know what its called?)and look for any abnormalities. He found none, but concluded I "must have an overactive bladder and an underlying infection that isn't going away with the short courses of antibiotics". Again, I was sent home, with rx's in hand for Vesicare and an antibiotic I was instructed to take once a day, on M,W, and F for six months. I was to have a follow up in November.

All of this didn't sit well with me and given that I went through 3 weeks of the treatment he rx'd with no relief, I decided to get a second opinion. Let me just say, my new urologist is absolutely wonderful! I've never been made to feel more welcome and like my concerns were important than with his office! My first appt. with him was at the end of June and immediately upon getting my history he said that what the previous urologist did was not sufficient. He told me that blood in my urine with no sign of infection or trauma was a huge red flag for more serious issues than what I was treated for and immediately ordered a CT scan w/ contrast of my abdomen to get a closer look at what was going on.

I had the scan done July 11 and was back in his office Aug. 13th where I was told that they had found a "solid enhancing mass" in the upper quadrant of my right kidney. The scan measured it as 2.8 x 2.9 cm. I was a mess immediately. He said at that point that he was 80% sure it was cancer but given my age and gender it was still a possibility that it was benign. He suggested a biopsy, but I refused, my initial reaction being, NO! It's not part of me, it doesn't belong there, and I want it out! So..instead, I was sent for an MRI w/ contrast for a closer look which showed that it was solid, enhancing and also had some cystic properties.

At that point it dawned it me...This didn't just show up out of no where! So I mentioned that I had the scan last year and wasn't told anything about. He had me request the disc and report and bring it to his office for comparison to the new scans. Of course, me being me, I popped the disc in my computer and guess what?! The mass was there as well! However, the report from the radiologist stated, "Kidneys are functioning, and appear normal" Complete WTF moment for me there. I waited for the comparison results and they found it had grown 1-2 mm since last August and surgery was scheduled for the earliest opening he had which was for Oct. 17th.

I received the pathology results at my post-op appt. yesterday. The mass that I had removed was malignant. It was Stage 1, Grade 1-2 Renal Clear Cell Carcinoma. It was 2.0 cm, so it was smaller than originally thought, but because of the proximity to my renal artery, I lost 1/3 of my kidney instead of the intended 20%, but that's nothing considering the alternative. The doctors are confident that they removed everything so the plan of action is to have blood work done in two weeks and again the end of December to make sure my kidneys are functioning properly and follow up scans in January, then again in 6 months and every 11-14 months from there on out.

I still can't believe that I was diagnosed with cancer and one that normally targets men, people over 40 and smokers! I'm not any of those! Lesson learned--If something doesn't "feel right" or your doctor seems to be dismissive about your concerns or doesn't order tests for "unexplained" symptoms, ALWAYS trust your gut! People may call me a hypochondriac, but being proactive about my health and asking for second opinions saved my life!

I'm now a little over a week post-op and I feel pretty good. My surgery was done laparascopically so I thought I would be better recovered by now, but I feel much more drained than I expected. I've had 3 other major abdominal surgeries that I was "opened up" for and actually felt better at this point post op., but it was a different surgery so I guess I should expect a different recovery. My doctor said it yesterday, but I still feel strange being called a cancer survivor because I never had symptoms (well, just the one), never had treatment besides surgery, never got sick, I was diagnosed post surgery and now they say I'm cancer free. My Dr. says that I now have as small of a risk of it ever coming back as anyone else has of ever getting it, but know it will always be something that eats at the back of my mind, especially when it's time for my scans. For now, I think I better just be thankfully it was caught early and enjoy my life the best I can.