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Just Diagnosed and Very Scared

Shecka1121
Posts: 114
Joined: Apr 2015

Hi Everyone,  You all seem like a wonderful group of people and I feel blessed to have found this site.

I have been reading through this site and it has given me courage.  I was recently diagnosed with kidney cancer two days ago. I am 44 years old mom with two young children.  I am very scared.  My primary care doctor told me the MRI results due suggest that it is a cancer mass.  The mass is 1.3 cm and has not spread and is at the bottom of my right kidney. I was referred to oncology at USCF and they are reviewing my case and I will be referred to a specialist.  The waiting is weighing me down.

 

My mass was found my accident as I had stomach pain for an unrelated reason.  My primary dr said I am very healthy and I will get through this.  The part that scares me is I just had a hysterctomy in February.

 

Any thoughts or experiences shared would be appreciated.

 

Mary

icemantoo's picture
icemantoo
Posts: 3208
Joined: Jan 2010

Mary,

 

Sorry I can not help you with the hysterectomy part, but as far as the kidney mass, its discovery at 1.3 cm is as good as it gets on this board. I am assuming they will follow up with a CT to further****** the mass. While most of us have our kidney removed by surgery (a nepherectomy) other options might be available with a mass so small. At 1.3 cm the doctors are in no hurray (much biggar masses get you to the front of the line). Based upon your diagnosis so far i would expect you to be around for another 44 years or at least until the grandchildren are married off.

 

 

Icemantoo

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hi Mary,

Welcome to our group! Feeling scared right now  is very normal. Now the good news is that given the small size of your tumor, it is likely that it is caught very early and will be very curable. You probably will have surgery, then some follow up scans to ensure it hasn't recurred. Once the kidney is removed (or partially removed), it should be pretty much smooth sailing.

You will get through this....we will help and support you!

Hugs

Jojo

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

You're allowed to be scared. Cancer is scarey.

As you and your doctors deal with it , it will become less scarey. What you describe, in terms of size and lack of spread is actually very good news. You'll be OK and at that stage your disease is very treatable.

Dont worry. We've all had that 'I'VE GOT WHAT?" moment. It will pass and you will be able to deal with it.

Shecka1121
Posts: 114
Joined: Apr 2015

Thank you for the quick and encouraging comments. I will take them as truth since you all have been here in one way or another.  I really appreciate it. I read in a post by someone in this group is watching the reactions of people that are close to you.  That is hard as they do not make it better.  You all have and I am thankful.

 

Big hug to you all.  

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Everyone gets it when you tell them. Dont let it get you down. As you start treatment and getting on with life it will go away.

Jan4you's picture
Jan4you
Posts: 1317
Joined: Oct 2013

Oh, Mary, you have come to the best place for information and support!

And as others have mentioned, your tumor is small. So you may have a partial nephrectomy. Make sure your surgeon does the robatic, Labroscopic incisions if you can get that. It is less invasive, and easier to recoup. But you still have to be careful, even though the incisions may be smaller.

I also used a lumbar wrap used for bad back support. I wrapped it around my abdomen in both my laprosopic surgeries. AND I used dry ice inside the wrap over the larger incision (due to a complete or radical nephrectomy). It helped reduce the swelling without need too many pain pills.

Again, as mentioned, its cancer so there are those scary feelings of the unknown. Please do not let your mind take you to dark places .. or worry. What good does it do anyone but zap your much needed energy to fight this thing. You'll be monitored for awhile with CT scans and blood tests.. again. to reassure you are NED=no evidence of disease.

So bring on ALL your questions. Breathe.. hug those babies and know that you are in good hands. Trust your surgeon. Not sure if you are more worried because you just had a hysterectomy? Or that you are having two surgeries in a relatively short time?

Sending you healing thoughts, and caring hugs. Remember the Serenity prayer: (GOD) Grant me the serenity to accept the things I cannot change,  the  courage to change the things I can, and the wisdome to know the diffrerence. I keep repeating that when I get anxious about a problem, until I become at peace.

God bless, Jan

Shecka1121
Posts: 114
Joined: Apr 2015

Thank you all for the replies. I keep reading them as they are making me at peace.  Same with my husband.  I actually was able to enjoy the kids tonight with a lighter heart so thank you for that gift and taking time out of your day to respond to my concern.  I am sure that I will be committed to this site for a very long time.  I have been praying and trusting that God will help me through this process.

With a grateful heart.

mary

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Shecka1121, it is very normal to be scared.  But as others have said, you should have many reasons to be optimistic.  As you may infer from my screen name, a positive attitude is very important--that does not mean I did not have moments of fear and doubt with my initial diagnosis. Our situations are very similar.  I had to go to the emergency room for severe abdominal pain at the end of April 2014, and they found the tumor.  I was on vacation at the time.  When I returned home, the tumor was confirmed to be cancer, and my first urologist said that they would have to remove my entire right kidney.  I decided to get a second opinion, and I did from a wonderful doctor at Memorial Sloan Kettering Cancer Center, and he was able to remove my tumor and preserve 95% of my right kidney!  My tumor was 2.9 cm.

I can't address the hysterectomy, but as an infant, I had two very involved surgeries on my intestines, and I had what the doctors called a "hostile abdomen."  That limited the doctors' choice, in that they would not do a laparascopic or robotic surgery.  They had to do an open surgery.  You will hear a lot of opinions here on whether a laparascopic or open surgery is "better", but "better" is in the eyes of the beholder, and depends on different situations.  I can tell you that I had an open surgery on Thursday morning, and I was realeased on Saturday morning.  I was walking 6 miles per day by the Monday after my surgery.  I was determined to get back to "normal", and the walking and excercise were a huge part of my physical and mental recovery.  I am guessing you are near San Francisco--and you have access to some of the best hospitals and doctors in the country.  In addition, you have beautiful scenery and fabulous weather, and walking is important for your recovery.  Positives all around for you.  You will be fine.

You have time to figure things out.  My surgery was not until 6-7 weeks after my initial diagnosis, and I was going to wait until the end of the summer, and the doctor was fine with that.

APny's picture
APny
Posts: 1933
Joined: Mar 2014

ITA with everyone that at a little over 1 cm they caught it early and your chances of the surgery being the end of it is excellent. As far as whether it will be a full or partial nephrectomy or open vs. lap/robotic, all depends on where the tumor is located.

Not everyone’s tumor is a candidate for robotic and/or lap surgery. Make sure your follow your surgeon/oncologist’s advice rather than insisting on a procedure that may not be optimum for you. My tumor was fairly small at 3.4 cm and my surgeon at Sloan Kettering recommended open and convinced me with his reasoning why. I could have opted for another surgeon there who specializes in lap but went with the open. My recovery was better than many people’s with lap surgery. Two days in the hospital and a 4 inch incision instead of 5 different incisions. More incisions, the more chances for infection. I was walking the night of the surgery. I don’t think my recovery was difficult and pain was very well controlled. So if it has to be open, don’t assume your recovery will automatically be difficult. I had the same surgeon as Positive_Mental above me, and we had very similar experiences as far as surgery and recovery is concerned.

Best of luck to you and yes, being scared is natural. I was terrified of the surgery and the pain/recovery and what I feared turned out to be a lot worse than the reality.

Shecka1121
Posts: 114
Joined: Apr 2015

Thanks for the encouragement. mental, you are right, I live in San Francisco and do have access to the best care.  I am grateful for that.  I was so scared of open surgery but you all made it better. 

 

What is ITA?  Still learning all the language.

 

 

 

 

 

APny's picture
APny
Posts: 1933
Joined: Mar 2014

ITA = In total agreement.

jason.2835's picture
jason.2835
Posts: 336
Joined: Nov 2014

Mary,

1.3 cm is barely a tumor! Ok, it's a tumor, and it's still scary that it's there, but your news is about as good as it can be if it turns out to be RCC. The probable line of treatment will be removal of the mass, pathology to see what type it is and then nothing because surgery is the primary line of treatment with RCC. My tumor was 2.8 cm, removed 7 months ago, and no treatment to follow. Just scans. 

So take a breath and count your blessings that you are stage 1. Of course you'd rather be NO STAGE but your situation is as good news as you can get. 

- Jay

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

As you have been told by several now that your tumor is small and will most likely have a good outcome, I will tell you also, LOL.  You have a very good chance of it being removed and no further problems as it is very small.  Just wishing you the best of luck, and I will be praying for you.

Shecka1121
Posts: 114
Joined: Apr 2015

Thank you Jason adn Brea for the input.  I appreciate it.  I am glad I found this site.

you all are awesome.

 

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014



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It's normal to be scared.  "Cancer"  is one of the worst words to hear, as survivors, we've all passed that time. Yours is just 1 cm and hasn't spread which means stage 1. You've got more than 90% chance of the upcoming nephrectomy to cure  you andthe tumor will never come back. It's great, is't it? Nephrectomy is the only treatment you need, radical or partial depends on your own case but for 1.3 cm tumor I'm almost sure you'll have partial. It might be done open or laparoscopic by your urologist. And then you'll be followed at least  5 years.  the pathology report will turn on light about this tumor, the grade and type and finaly stage is most important information you can have from pathology report. You're very lucky, early stage and small tumor which was caught accidentally are all good signs.

 

myoung790
Posts: 75
Joined: Sep 2014

Hi and welcome.  I'm sorry you have to go through this.  I was diagnosed one month shy of age 41 and also have two kids.  It is super scary to hear those words, but the odds are in your favor for a very good outcome.  My tumor was small as well, 2.7cm.  I did wind up losing the whole kidney though due to location of my tumor, but have had a great recovery since then.  I hope that all goes well.

This board is a wonderful resource with a great group of caring people who have been through all different stages of this ugly disease.  

aamdsi
Posts: 284
Joined: Apr 2014

But the size is small, so very good chance that once it is removed it will just be a horrible memory 8-)

I know the faces of people when you tell them is hard to take.  But, in their defience, they need to be allowed the shock and such.  They will get over it.  I know it hurts and you shouldn't have to deal with THEM having to deal with it.  But that first "face" is normal.

In the meantime, ask questions...lots of questions. Any fear, doubt, concern..ask.  Between the Dr.s and this board, I am sure you will find an answer that will help.

Hang in there.  We are all here for you from start to your 16th year NED scan.

 

Hugs,

Laurie

Shecka1121
Posts: 114
Joined: Apr 2015

Thank Laurie. I appreciate the response. It is encouraging.

 

I did recieve my call from the UCSF Urology Oncology department today and my first apt is Monday, the 4th.  I am anxous to get in as I have only spoken to my primary dr.  I thought it was a good sign when the scheduling nurse offered my appointments in June :)  I said, heck no, I am coming in ASAP.

I appreciate the support and as I read the stories of others they are inspiring!

 

Mary

RMolinaro414's picture
RMolinaro414
Posts: 43
Joined: Sep 2014

I would be worried if you weren't scared. I'm in a similar boat to you. Young Mom {34 with a 3yr old and a 10mth old} diagnosed in September with Stage 1 Papillary Type 1 RCC. I just had a scare with my liver, but everything turned out to be ok. Find comfort that you in the best care possible, you have an amazing support system at home AND your tumor is teeny tiny!! Yes, still a tumor but small which is good. I am always here to talk/vent if you need. This group has been a blessing to me during my journey. We are all here for you every step of the way. You will be ok xoxo

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