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26 year old....Just diagnosed

BrodysMommy
Posts: 3
Joined: May 2011

I am 26 years old and I was recently diagnosed with Kidney Cancer. The doctors found it by accident and are baffled as to why I have it. My husband and I have still have many unanswered questions. I was wondering if anyone could help with advice on what to expect.

Thank you!

icemantoo's picture
icemantoo
Posts: 2639
Joined: Jan 2010

As far as what to expect you are going to have to meet and speak with your doctors. If the tumor is small and has not spread the first step is generally a nepherectomy or partial neperectomy. Not what you want to hear right out of the gate. but who said this is fair. While the prime demographic for Kidney Cancer is ages 50 to 70 there are some on this board like you who are diagnosed at a very young age. That being said if the tumor is small and has not spread there is no reason you will not be able to enjoy your grandchildren down the road. It has been almost 9 years since my surgery and I am doing fine and trying to help the newcomers. Being told you have Kidney Cancer and than that you have to have surgery is a big shock. Most of us on this board have gone thru this and will try and help you as best we can.

BrodysMommy
Posts: 3
Joined: May 2011

Thank you for your help! My tumor is 2.1cm x 2.0cm x 2.1cm my doctor is pretty hopeful we caught it early but he said we wont know for sure until my surgery is done. I have been told mixed things in regards to chemo....did you have to have chemo?

icemantoo's picture
icemantoo
Posts: 2639
Joined: Jan 2010

I may have qualified my earlier answer as I did not know the size of your tumor. Now that I know its size you have nothing to fear, but fear itself (FDR WWII). There is no reason that you should not make a full and complete recovery, Chemo is not in the cards as it has little effect on Kindney Cancer and is only used if the Kidney Cancer speads and at 2,1 cm there is no reason not to expect a full and complete recovery.

DarrylPe's picture
DarrylPe
Posts: 75
Joined: Mar 2011

Hi Brodysmommy and welecome to our special group. I was diagnosised with kidney cancer in March and had my right kidney removed with a 4.5 cm tumor on April 13. As my doctor told me if you have to have cancer Kidney cancer is one of the better ones to have. Stay tuned to this site there's a wealth of info and the people here our great. People here really have an idea what your going thru. By the way when is your surgery? I'll keep you in my prays stay strong.

Darryl

garym's picture
garym
Posts: 1651
Joined: Nov 2009

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.

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

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!

Malroy85's picture
Malroy85
Posts: 5
Joined: Mar 2011

Hello!! I can't believe it! I'm so excited (in perhaps a morbid way?) that you're here!! I am also 26 and was just diagnosed 9 months ago, back in September. Most Kidney cancer "recipients" find it by accident. That's just how it goes. By the looks of the size of your tumor, you most likely won't have to do chemo. Surgery is the best bet for Kidney cancer. Mine was stage 4 and the size of an NFL football, so quite large. I did chemo for about 4 months, but that was only because of the position of my tumor, the surgeon was hesitant to go in there. They wanted to see if the chemo would shrink it at all. It did a tiny bit, but not very significantly. As others have said, chemo usually isn't used for those with kidney cancer, unless it has metastisized elsewhere. Sometimes people only get part of their kidney removed if the tumor is small enough. This might be your case. However, a full nephrectomy (removal of the kidney) is typical and most effective. I had my surgery March 2, 2011. They also had to remove 6 lymph nodes. It can be daunting, but your chances of coming away from this with nothing more than just a surgery is really really good. Sure, there's always going to be that shadow of "what if?" that's part of joining any cancer team. But there is so much support out there if you feel you need it.

I would LOVE to keep in contact with you (You're the first person my age who also has kidney cancer that I've ran across!!) and have found lots of places to go for help and support that I can tell you about. PLEASE send me an email or message on here if you feel like you need a compadre during all of this. Hope to talk to you soon!

-Mallory

BrodysMommy
Posts: 3
Joined: May 2011

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

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

My tumor is really small as well. And although my doc now thinks he can do a cryoablation -- just freeze the tumor dead -- instead of doing the partial he first thought he'd do, it still has to be an open surgery because the tumor sits right on my renal artery.

Really, our tumors are so small, our biggest worry will be the scar. But I like my scars! They're the story of my life!

suzika's picture
suzika
Posts: 12
Joined: Jun 2011

Hi Jamie! Glad to see another young kidney cancer survivor! Sorry you had to join us, though.

suzika's picture
suzika
Posts: 12
Joined: Jun 2011

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.

flavortown's picture
flavortown
Posts: 1
Joined: Feb 2017

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! 

icemantoo's picture
icemantoo
Posts: 2639
Joined: Jan 2010

flavertown,

Not fair to join so young. Your recovery should be much easier than us old guys. Fill in your bio and start a new thread so we can help you thru this.

 

Icemantoo

Jan4you's picture
Jan4you
Posts: 1168
Joined: Oct 2013

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 

Bay Area Guy's picture
Bay Area Guy
Posts: 190
Joined: Jun 2016

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.

stub1969's picture
stub1969
Posts: 413
Joined: Jul 2016

I'd encourage you to start a new thread including some details about your experience thus far.  You've come to a great support network.  The members have a great balance of compassion mixed with kick RCC in the a** attitude.  I'm not far removed from where you are in starting this journey.  If you want support, we're here for you.

Stub

 

donna_lee's picture
donna_lee
Posts: 761
Joined: Feb 2009

I was Dx'd at age 63, a month shy of having survived 11 years.  Because it had already mets to liver and nodes, I was given 5-7 months to live "if something couldn't be done."  That something was a very long and involved surgery, and they still didn't find it all.  So the subsequent two years saw me return to the table for separate lymphadenectomies.  (Such a long name for a thing the size of a swollen dime.)  The right kidney came out with a 12.5x8.5x11.5 cm tumor, and I didn't have any symptoms, at least from that.  The 8.5x5x7.5 tumor in my liver was what me say something to my PC on a regular visit.

It's all water under the bridge and much has been forgotten.  Sometimes I'll have a re-call or flashback of something, and realize there's another piece in the puzzle.

From now on, take notes at your visits; ask for chart notes; results from any test.  Always be prepared with a list of Any Surgeries you have had-Day or Admitted, Meds-name, dosage and frequency, family history for parents/siblings, grandparents with disease history, age at passing, etc.  Allergies to any foods or medications, or sensitivities.  Even dairy products and latex.

Once you get more into the plans for surgery, come back and ask for help in preparing yourself, your household and your care givers.  We all can give you ideas that might work for you.

Luck and Hugs

donna_lee

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