Recently Diagnosed?

Priorities
Unfortunately, it sounds likely that you have kidney cancer, despite your tender years. It is serious but not the end of your world. It's understandable that your Family wouldn't want you worried sick at exam time but you do have every right to know the score and to participate in deciding on your best course of action. The size of the tumour is such that fairly swift action is desirable to optimise the odds that surgery will be all that's needed to cure you. A long delay (e.g. months) would be a bad idea since it could change the current good situation that the tumour is confined to your kidney.

In the meantime, reading the very long thread on "Recovering from radical nephrectomy" would give you a fast start on understanding what it's all about. Once you have had the surgery you will probably want to ask lots of specific questions which everyone here will be happy to try to answer helpfully.

Sorry you've had this experience - tough at any age but a real shock at yours. However, with youth on your side your prospects are good. We're all sorry you have to join us but will do all we can to welcome you and assure you you're now among friends who know pretty well what you're going through.

your life can become a blur
Hi mimir...

Like you, I was diagnosed out of the blue after a sudden onset of urine in the blood and soon followed by pain as the kidney filled up and was blocked with blood and blood clots. This was just on 11-27-12, through a big mess of two ER visits for pain and bleeding, becoming dehydrated from blood loss, etc., I was able to have hand assisted laporoscopic surgery on 12-4, yep, just 11 days ago! This surgery DOES suck, especially given that you most likely have cancer, as others noted, it's not likely it's benign. In my case I had a 7.3cm tumor that was pathologied to be a Stage 2 Grade 3 clear cell carcinoma, one of the most common kidney cancers, but also one of the best prognosis' for recovery and low chance of recurrence.

So what, this cancer, is one of the most easily cured when caught in time via nephrectomy. Your tumor, like mine, is 7+ cm, and needs to be moved on as fast as you can get a doc to get it out. TRY your best to get a doc that can do the surgery laporoscopically! It will speed your recovery time by a large amount. I was able to be walking within 12 hours of the surgery (slowly haha) on Wednesday, and by Friday I was on my way home and I have used zero painkillers since I left the hospital. That means I was at home just 48 hours after the surgery! It seems you are young, and that will help alot. If you are in good physical shape, that will help even more. I am 42 but I am/was/will be an active runner. I still am recovering but I can get out of bed myself, etc., walk for extended periods of time, and I actually did go back to work 6 days after the surgery, although I was mostly at a computer, and I only worked for 4-5 hours at a time with some small breaks, then I went home and napped a bit.

Don't be too physical, let the healing come, but don't be lazy about recovery either. Listen to your body and it's pains, you are going to be very good at it soon. Use your pain meds as needed in the beginning right after surgery, but wean yourself as fast as your condition permits. I was ultra constipated as apparently, I am a poster child for medicinal side effects. Getting off the meds faster will help cure this condition which can be painful in itself. I even gave myself my own suppositories! Colace, an over the counter medication, can be very helpful once you are home, as it brings water to your intestines to help soften things up and moving, it will be VERY hard to "push" 5-10 days after your surgery. If you have allergies, take an over the counter Zirtec every morning to try and stop and sneezing, it will F you up if you sneeze during that first week of surgery. Also sitting upright will help ease any coughing, and you WILL have to soon after surgery to clear your airway and lungs of fluid buildup. USE that little breath sucking device they give you in the hospital several times a day, it WILL help expand your lungs and bring up the small amounts of fluid up easier. Use a pillow pressed against your stomach area to help control expansion when you cough. It will be tough but as you can see, we all made it through!

Icemantoo noted the long thread "recovering from radical nephrectomy" and he's right, read the whole thing, my experience is in there towards the bottom. It's chock full of info both from a medical standpoint and a "living with cancer" standpoint. Your age, and the age of your friends, plays a part in your mental experience. People that have never had direct experience with cancer have a hard time understanding the impact and enormity of what it really means. Age tempers that somewhat with the simple fact we older folks have lived longer, seen more, done more, etc., but hey, it's OK to cry, let out that negative emotion and then get on with having an aggressive position about beating this cancer. You CAN beat it, it is NOT the end of the world, and your vernacular is going to expand quite a bit with a ton of information and knowledge coming your way.

In my case, I told my family and good friends immediately, and told my 8 and 13 year old children within 3 days of my diagnosis. I used facebook and mass texting as a sounding board and method to tell all my friends information without tons of phone calls.

Trust me, you are going to be fine, but get that mass out as soon as you can. Don't accept long waits of you don't have to, the bleeding indicates a faster than normal surgery as it can become problematic especially if it starts the copious amount of pain that a blocked kidney can deliver. I had femur surgery 8 years ago from a motocross crash, and this pain put a butt whipping on that experience.

You have now entered a totally new life experience, with some new emotions you have probably never felt before coming your way. Use this board as a tool to whine/cry/whatever. Don't hold anything back, and go on living. If you want to talk to one of us that has had kidney cancer, some here are even willing to talk on phone or private discuss via email, me included, just email or private message us for contact info. My email is (take out the spaces and *'s) the*raptur @ gmail**.com

Be sure and update us as things develop, I will be looking forward to hearing your updates. As a newly diagnosed and post surgery subject, I am most interested in your case.

Mimir said:

CT
Thanks for the input.

The "Conclusion" of my CT is: Large minimally vascular tumor mass in the left kidney with patency of the renal veins and no evidence of any significant lymphadenopathy. There are pericapsular prominent veins. Bilateral duplication of the collecting systems.

Looking at the CT, the tumor appears as a big solid black splotch.

I am in good physical condition so I hope my recovery will be swift.

I understand that finals take a backseat to cancer, but I ended up getting appointments after finals were finished. I think I just wanted to whine about dealing with finals and learning I have cancer at the same time.

Well
There is a bit more going on here other than your renal mass. A double collecting system either single or bilateral is an abnormality you were born with. Some people have this duplication from the renal pelvis (center of the kidney) all the way down to the bladder. Some have the ureters split apart further down. It would mean you have two ureters on each side instead of one. The ureter is what carries the urine from the kidneys to the bladder. I've seen many of these in my 30 years of scanning and some say it's just a congenital anomaly. Having it on both sides is a little unusual. I did a little research just now and found a few places online that state that Transitional Cell Carcinoma is sometimes reported in patients with duplicate collecting systems. Please remember I am not a physician and I am not giving you any medical advise here.....but some friendly advice would be not to wait on this. Please keep us informed. The fact that you have no significant adenopathy is a great thing. By getting this out quickly, you'll hopefully keep it that way.

Mimir said:

Update
I saw my first round of Doctors today. While they basically confirmed what most of you said about it being cancer, some interesting things came up. Due to my age (18) and that I have none of the risk factors, they think there is a possibility that it is a Wilms tumor. The doctor I saw said that Wilms tumors are responsive to chemo. They suggested I get a biopsy of the tumor because if it is a Wilms they want to try and shrink and or eliminate it with only chemo. The doctor wants to save as much as my kidney as possible. If it is RCC they would almost 100% have to remove the entire kidney because the tumor has basically cut my kidney in half.

Tomorrow I am going to NIH to meet with other doctors and see what they have to say.

National Institute for Health is great
I just had a workup yesterday and today for familial kidney cancer. My news was not great (they found a probably met.), but the staff there took the time to understand and seemed interested in me. I wish you luck. I take it you are in the DC area? If so, I would like to know who you DR's are. I am over in Northern Virginia. My surgeon is Dr. Todd Tescher, but he knew nothing about familial cancer.

Familial means that it is inherited. My Dad's dad died for RCC, my dad has it, and I have it. There thinking is, if they can figure out what happens with us, why we get it, they may be able to figure out all cases. Definitely good use of our tax dollars.

I'm also recently diagnosed. A week before Thanksgiving I had the bleeding and pain and at the ER they found a 6.7cm mass in my right kidney. On 12/10 (last Monday) I had my right kidney removed. I pushed the doctor to get the thing out fast. I'm home recovering now.

There were a couple of other small anomalies on my CT scan, but it appears to be confined to the kidney. I'm thankful for that. I don't have my pathology report back yet, so I still don't have a definite staging/diagnosis.

My surgery was done laproscopically, but like you, my tumor is in the middle of my kidney so they had to take the entire kidney out intact. That meant a large incision to remove it.

My recovery has been pretty much ok. The surgery was last Monday afternoon. On Wednesday afternoon I got to go home. I've been recovering pretty well.

This is hard to talk about. I'm having trouble discussing it with colleagues at work. I didn't know much about this a month ago, and now I know way more than I had ever wanted to learn.

I wish you the best. I hope they move quickly. I'm sure they will.

Chances are 90% it is a

Chances are 90% it is a Kidney Cancer 10% are benign. You may want to talk to your uro-oncologist about the type of  the cancer Cells and the nuclear grade of the cancer.Good luck with this, the waiting is always so grueling!