26 year old....Just diagnosed

Welcome to the club
Hi BrodysMommy,

While this is not a club anyone aspires to join you are now a member just the same. I am 18 months post op (left side) and my tumor was 5.1 cm, my doc told me after the surgery that it had been growing for at least two years and would probably have been three more years and triple the size before symptoms developed at which point RCC becomes deadly. I couldn't agree more with Icemantoo, surgical removal of the tumor (usually found accidentally) during early stages is the most effective therapy for RCC, your odds of survival are greater than 90% and you should look forward to being around for a long long time. You have time, RCC grows slowly at first so don't be afraid to step back and weigh your options. You are young and your tumor is small, a partial nephrectomy might be a good option for your situation.

Good luck and let us know how things turn out.

garym said:

Welcome to the club
Hi BrodysMommy,

While this is not a club anyone aspires to join you are now a member just the same. I am 18 months post op (left side) and my tumor was 5.1 cm, my doc told me after the surgery that it had been growing for at least two years and would probably have been three more years and triple the size before symptoms developed at which point RCC becomes deadly. I couldn't agree more with Icemantoo, surgical removal of the tumor (usually found accidentally) during early stages is the most effective therapy for RCC, your odds of survival are greater than 90% and you should look forward to being around for a long long time. You have time, RCC grows slowly at first so don't be afraid to step back and weigh your options. You are young and your tumor is small, a partial nephrectomy might be a good option for your situation.

Good luck and let us know how things turn out.

You're good!
What a blessing that it was caught early, probably when they were looking for something else. Same thing happened to me. Because our tumors are small, they have not yet metastasized and surgery is a "cure." There are a couple of meds that shrink kidney tumors that have spread, but they don't spread until they are much larger. And as someone mentioned, kidney cancer is slow. So, no worries.

People live just fine on one kidney, and there's a 50/50 chance you'll only have a partial piece removed, not the entire kidney, depending on where the tumor is located in the kidney lobe. You can expect that surgery to happen very soon.

I know people freak out when they hear the "c-word," but honestly, surgery is the blip on your radar, not cancer. It's not fun to recover from this surgery, but the alternative is cancer. So let's go with the surgery and get it over with. : )

When you're ready to talk about the surgery and all those details, we're here for you!

BrodysMommy said:

Thank you!
Thank you so much for all of the advice! The past few weeks have been overwhelming with diagnoses, tests, labs and doctor appts. Yesterday I had a scope done to see where my cancer has spread and finally got some good news and answers. I can get away with having a partial nephrectomy done but due to the location of my tumor it will have to be an open surgery. I go in tomorrow to see my urologist to set up my surgery date. From the sound of things the road to recovery will be long and hard but I am so ready to be free of cancer. I will keep you all posted on my surgery date.

Thank you so much for the advice and support!

Tawnya

Hi Tawnya! Nice to meet
Hi Tawnya! Nice to meet you, even if it is a bad way to do it.

I was diagnosed at 33 years old with RCC-clear type. My tumor was just barely below stage 2 (by 1/10 of a CM) so I had quite a bit bigger tumor than your's, but, i did have an open nephrectomy.

It sucks, I am not going to lie to you, the recovery is hard, it takes a lot of time, and you will have a good size scar. It depends on your size, body type, etc, exactly how large. I am a big woman and I ended up having a midline incision (doctors are doing midline more and more as it is easier to heal than the traditional incision.)

Mine runs from just below my breast, all the way down my stomach and into my navel. It is 16.5 inches long (I have a long torso and a very low belly button, even though I am short.)

At first the scar was hard to deal with but, now I see it as a trophy. I will celebrate my 3 year survivor anniversary in September and I am doing pretty damn good, my remaining kidney has taken on the work very well. After your nephrectomy the remaining kidney will grow! I didn't know that until I went back to my urologist and asked why I was having so much pain in the kidney area.

In fact, I was scared that the cancer had spread, but, no the kidney was growing!

The majority of kidney cancers are found during a scan, ultrasound, or MRI for something else. I was having a CT scan because I had an infection in the skin of my abdomen and they were afraid I had an abcess. The ER doctor transferred me to another hospital (an hour away) and convinced me to have the CT scan (I'm allergic to the contrast so had to be medicated for 12 hours prior.)

The doctor saved my life and when I saw him again (with a subsequent infection, due to a condition completely unrelated to my cancer) I thanked him more than you can imagine.

Ok too long of a story, but, I wanted to share what I could. There are more and more of us young kidney cancer survivors every year. They don't know why but it is no longer an "old" persons disease.

Me too!

I was just diagnosed 2 days ago with the cancer. I am 23, have no family history of kidney issues, so my urologist was very baffled. It was caught by accident as well. Reading this thread has reassured everything my doctor told me. I feel very lucky that it was caught so early and will be taken care of. And I'm happy that I have a network of others like you out there to get support from. WE GOT THIS! 

Like your name, Tawnya, and

Like your name, Tawnya, and glad you found this site! Yes it can be scary ANY time to ANY of us when we hear the C word. Yes too young for several of you to be facing surgery for cancer. But we'll help you get through this time if you want us to walk this journey.

I have had 4 abdominal surgeries, (all unrelated to each other) have you had any? What they forget to tell you is that they pump up your belly with this gas to raise the abdominal wall in order to see. Afterwards this gas gets trapped in ridiculous areas, like the shoulder. i found this trapped gas more painful than the surgery itself. BUT it works its way out in a few days and you'll survive it, trust me. I waved my arm in circles. Walking helps too.

I also used a lumbar velcro wrap used for bad lower backs and wrapped it around my tender abdomen. It helped me get UP out of bed, or a chair. I even wore it to bed. It also has outside straps you can pull. There will be some swelling for awhile so I put packs of dry ice (less messy than ice) inside the wrap over the scars. THAT helped more than pain killers as it worked instantly to numb and reduce the swelling.

You are lucky to have caught this, tho accidently, so early. You will be fine. Need a good month or more before you lift or exercise, even if you start to feel better.  Remember, your insides need to heal and you don't want to risk any hernias.

Again, bring all your questions and fears to us. WE understand and will be there for you!

You can also direct message us in the email section.

Hugs, Jan 

Jan4you said:

Like your name, Tawnya, and

Like your name, Tawnya, and glad you found this site! Yes it can be scary ANY time to ANY of us when we hear the C word. Yes too young for several of you to be facing surgery for cancer. But we'll help you get through this time if you want us to walk this journey.

I have had 4 abdominal surgeries, (all unrelated to each other) have you had any? What they forget to tell you is that they pump up your belly with this gas to raise the abdominal wall in order to see. Afterwards this gas gets trapped in ridiculous areas, like the shoulder. i found this trapped gas more painful than the surgery itself. BUT it works its way out in a few days and you'll survive it, trust me. I waved my arm in circles. Walking helps too.

I also used a lumbar velcro wrap used for bad lower backs and wrapped it around my tender abdomen. It helped me get UP out of bed, or a chair. I even wore it to bed. It also has outside straps you can pull. There will be some swelling for awhile so I put packs of dry ice (less messy than ice) inside the wrap over the scars. THAT helped more than pain killers as it worked instantly to numb and reduce the swelling.

You are lucky to have caught this, tho accidently, so early. You will be fine. Need a good month or more before you lift or exercise, even if you start to feel better.  Remember, your insides need to heal and you don't want to risk any hernias.

Again, bring all your questions and fears to us. WE understand and will be there for you!

You can also direct message us in the email section.

Hugs, Jan 

Oh yeah.  I remember the

Oh yeah.  I remember the shoulder pain and being told to walk.  My reaction was "What the.....?"  (I think you can fill in the rest.)

Tawnya, as iceman said, you'll likely have a partial nephrectomy and, hopefully, minimally invasive.  Like Jan, I've also had other, unrelated surgery, all on my abdomen.  Compared to those, the partial nephrecotmy is much less harsh.  But it's still surgery.  When you get out of the OR and back into your room, the first thing they'll do is getting you standing up.  That's what I remember.  That, and the first voice was my 30 year old niece yelling in my ear, "Wake up Uncle Steve!".  I recall thinking, "Shut up!", but I think all that came out was "ujnlhfkbunhg".

Once you're up for a little bit, back to bed you go to sleep off the anesthesia.  My operation started at 3 and I think I got back to the room around 7 or 7:30 but that included time in the recovery room and also included about a 15 minute ride on a gurney from the recovery room to my room.  (My operation was robotic assisted and was at Stanford Hospital.  The robotic equipment is only in the outpatient surgey center and that's about a fifteen minute walk (all indoors) from the main hospital unit where my room was.)

If it's robotic, you'll have four small incisions where the instruments go, along with one slightly larger incision where a drain goes.  When you wake up on a more normal basis (not just the getting you standing when you first get back to the room), you'll have the drain and a catheter.  On the little table next to you, you'll have water and an incentive spyrometer.  It's a plastic contraption that hassome tubing in it that your breath with.  Make sure you have them show you how to use it, as it's important for people in the hospital to do breathing exercises.  It helps to prevent pneumonia, which is a pretty common complication after surgeries (and happened to me after one of mine, which is why I preach the use of the spyrometer).

Your surgeon may or may not come to visit you in the morning, but someone from the surgical team will come in.  As Stanford is a teaching hospital, I got two doctors from the surgical team and about four or five students from vaious phases of their training.  The doctors will tell you how the operation went, how large the tumor/lesioon was and verify that they did, in fact, get all of it.  You won't get a pathology report for a few days.  The path report is the bible.  It'll tell you things like the grade of the tumor and the type of renal cell carcinoma you had.  In my case it was chromophobe RCC, a relatively rare strain that is characterized by little, if any recurrence, little, if any growth, and little, if any spread to other areas.  So I had the jackpot of a path report.

They'll check your surgical tape or sutures (depending on what they used) and inspect the drain.  My understanding is that the drain typically remains in until just before discharge.  At this point, my doctors said the catheter could be removed.  Since I hate the catheter more than pretty much anything I've ever experienced, I offered to kiss the doctor full on the lips, but he graciously declined.  They told me the surgeon would be in that afternoon and that, as long as I could pee without issue and my pain was controlled, I'd likely go home that day.  I asked if I could eat and walk, because I hadn't eaten the day of the surgery at all and I was famished, and because from my previous surgeries, I know the value of getting out and walking.  They said yes to both, and, in fact, instructed the nurst to disconnect the IV fluids I was receiving so I didn't have to schlep a pole around with me while I walked.

I ate and walked for a while with a nurse, then walked on my own and went back to eat again.  After about two hours, I peed without incident.  The surgeon came in and we talked for about ten minutes.  He explained in a little more detail what the two morning docs had told me, then said I was free to go.  A nurse practitioner came in to remove the drain and dress that incision and I was officially discharged at 1:30 in the afternoon.  So, from the start of the operation to my discharge was less than 24 hours.

After coming to this site, I recognize that my story is different from just about everyone else's story.  Indeed, all of our stories are different.  But if you follow the instructions, particuarly from the nurses, your recovery will go a lot smoother.  I have been fortunate in all of my surgeries to have had top notch surgeons, but just as importantly, the nurses have, to a person, all been top notch.

Any questions you have.....always ask.  There will always be someone here that has either had the exact same situation or something very close to it.