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Diagnosed This Week by Sonogram

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Hi, 

I had an MRI for back pain and a renal cyst was discovered. I had a sonogram and was referred to a urologist who told me this Thursday he was pretty sure it was cancer. It was described as a Bosniak III 3cm cyst on my lefy kidney. He referred me to a surgeon and I'm waiting to get insurance approval for an CT scan with contrast. My Father had RCC last year and had a robotic nephrectomy performed but also had the lower portion of his lung removed about a year later. I took some steroids for the back pain and a lot of it is gone but I believe what pain remains is from the kidney.  it's a constant reminder of what im going through.  I'm 48 with a 9 year old son and a husband who has no ability to handle any stressful situation. I'm totally freaked out. I have a pretty intense sales job which I really need to keep. I've tried to act brave. I can't even tell my mom because I'm afraid she will lose it.  I'm waiting to get the results from the CT scan to find out more information. I feel really helpless and only have the support of my Dad.  What do I tell my little boy whom is so sensitive. 

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

Hi CM,

I intendedly write cheer up even though it to some, especially new members here, can seem a bit rude.

First of all, with a Bosniak III theres still roughly a 50% chance its benign. But almost as important; If it *is* malign, you were caught almost as early as its possible when it comes to RCC. With a 3 cm RCC tumor you will have to be extremely unlucky not to live a full lifespan (unless you have a rare agressive subtype or high Fuhrman grade/stage, all of which the likelyhood is very low).

The long term survival rate is 95%+ for the overwhelming majority of 3 cm RCC´s and given your age you are probably even in a 98-99% group.

So...cheer up. Even if it *is* RCC you are better off than 95%, in all aspects,  

No Guarantees, we dont use that in here, but even in a "worst case" youre pretty well off.

/G (I hope the silver lining I tried to draw on your cloud is visible)

 

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Thanks for the support. I really need it. The urologist I saw told me he was pretty sure it's cancer but I'm praying for the best. 

NanoSecond's picture
NanoSecond
Posts: 609
Joined: Oct 2012

I am sure this has come to you (as it has for most of us) as an unexpected shock. Yet, as Galrim points out, your situation is likely not as dire as your imagination may be painting it.

However, there is one very important thing that you immediately need to consider.  Since your dad has already been diagnosed with RCC it is imperative that you get yourself under the care of a qualified (i.e. experienced; expert) renal cancer oncologist.  If it turns out that you have RCC it is likely that yours is an inherited variety - and, if so, that will highly influence the proper course of action and kind of therapy that you should pursue in the future.

Hang in there.

 

-N

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Hi!

So sorry for what you are going through.  It is not easy, I know.  But I do agree that even if it is malignant, it's likely caught so early that surgery will be the cure.  As for when and what to tell your son, that's a bit tougher.  Even though I am roughly your age (49), my children are 28 years old and emotionally better off to handle the whole 'mom has cancer' freak out.  Still, knowing what I know now, I wish I hadn't told my children I had cancer.   Now that I no longer have cancer, they still fear it will return.  That's my worry and concern, not theirs. 

By the time my children were nine, they had lost a couple of family members to cancer, as well as the parent of one of their close friends.  Knowing full well my kids associated cancer with death, I would never have told them at that age.  But, nobody knows your son better than you do.  You know what he's capable of handling.  If and when you decide to tell him. he will likely require plenty of reassurance that mom is going to be OK...and you will be!  You'll see. 

Keep us posted!

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

I am so thankful to have found this message board. 

I plan to post here often. I appreciate the support from you and I hope one day I can support someone like myself.  My father was treated at Sloan Kettering in NYC. I probably will continue there as well. Has anyone else been treated there? Maybe this should be posted as a new Topic.

 

icemantoo's picture
icemantoo
Posts: 1658
Joined: Jan 2010

C.mom,

Been there done that, except for dealing with the husband part. You are at one of the top facilities in the country so I won't weigh in on the diagnosis. Not fun being told you have the big C and than surgery to boot. The surgery should remove the Cancer for good and you should be around long enough to enjoy a 9 year old grandson and watch him grow up. At least thats what I have in store for you for the next 30 years. Mine was 11 and 1/2 years ago.

 

Icemantoo

 

 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Yes to what everyone else has said. But don't be surprised if you still have the back issue. At 3 cm it is very small. Good luck. Ron

Darron's picture
Darron
Posts: 242
Joined: Jun 2013

Welcome I the club nobody wants to join. My response is short as I would say exactly what Ice and nano already stated. Sloan is only one of he best in the world, you will live a long life. The happy is if you make it that way!

beat of luck, keep calm, and keep us posted

 

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

Hang in there and 'try' not to worry too much.  Like the others have said, yours was caught early and likely will be cured by surgery.  However, I would recommend, given family history to be tested for genetic predisposition to RCC.  That testing will also set your mind at ease regarding your children and grandchildren, too.  Keep us updated on your journey and know that you are probably at the very best place you could possibly be for this.  Hugs to you.

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Thank you Tillie. I hope it was caught early. Fingers are crossed.

 

a_oaklee
Posts: 177
Joined: Nov 2013

Hi.  I agree with what everyone else has already posted.  Right now you are probably totally in shock and totally stressed out.  It takes time to realize that you are going to be okay.  But to answer your question about what do you tell your son who is 9.  That is so young, and I think I would just say mommy doesn't feel good.  If he sees you crying, tell him you have a back ache that hurts.  I would not put him through this turmoil that you are experiencing currently.  Since your husband is not that great of support in a stressful situation, you may want to rely on a girlfriend more than you do your husband.   Friends can be amazing sources of comfort.  There is also this site that you can come to anytime day or night.  Yeah.  Another idea is to talk to your primary care provider and ask for help.  You could talk with a psychologist to help you through this rough time.

Jan4you's picture
Jan4you
Posts: 235
Joined: Oct 2013

First of al, I am so sorry for all you are enduring. You are in shock and trying your best I can tell. But what I hear is that you are projecting the "what ifs" before you have all the facts. It uses up much needed energy to do your job and be a good parent. Try hard not to do this hon.. still.. WE understand why you do.

After all, "what if" it is benign? "What if" it is cancer but completely gone once your surgery is over?

So if I were you, I'd wait to tell your son any details. With Robatic surgery the healing time and pain are lessened. AND just in case it is more serious, read the many posts here of those who are STiLL HERE and surviving with new treatments eracticating or reducing any mets.

Again, I understand hon, but if you do have any faith this is the time to use it. As my mother always told me (I used to be a worry wort as a child) WORRYING is an insult to God!! LOL

Gentle hugs, come back anytime with ANY questions or concerns you have hon

Jan

NewDay's picture
NewDay
Posts: 182
Joined: May 2012

Hi CommuterMom,

So sorry you had reason to join our group, but glad you are here.  This group has been a great source of information and support.  It looks like RCC (renal cell carcinoma) may be hereditary in your family.  As someone mentioned, knowing that can be important if you end up needing more treatment after surgery.  Even if you are fortunate enough to be cured by surgery, you may want to know anyway.  As you are just starting the roller coaster ride, you don't need to be worried with that right away.  It sounds like you have chosen an excellent hospital.  After the surgery is behind you and you want to consider genetic testing, let me know and I will give you the information to get in contact with the National Cancer Institute/National Institute of Health (NCI/NIH).  They study hereditary RCC and can do the genetic testing for free.  They will even pay expenses to travel there.

Hang in there.  I was in a panic in the beginning, but things will calm down later.  I don't have children so I don't feel qualified to answer the question of telling your son.  If you are going to be in the hospital and recovering at home, you will need to tell him something, but certainly dont have to use the "C" word.  This is hard I know, but you will get through it and we are here to help you with that.

Hugs and Prayers,

 Kathy

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Thanks Kathy for your support. Where is National Cancer Institute/National Institute of Health (NCI/NIH)?  

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Thank you Jan.  I actually haven't been to Sloan Kettering yet.  I have an appointment.  I only have seen one urlogist who has refered me to a surgeon after reading the sonogram.  I made a second appointment with my father's doctor at Sloan Kettering.  I figured 2 options would be helpful. What is making me nuts, is that I haven't gotten the CT scan scheduled and I'm very worried about what might be found on the CT scan.  I realize that a 3 cm kidney tumor is relativley small. In my father's case he had cancer in his bladder as well.  But he is 70 years old and was a heavy smoker for over 40 years.  I don't smoke. I'm worried that there culd be other sights were it may have spread.  I guess that is what we all here worry about.

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

Hi CM,

Metastatic disease is something we all either worry about or already battle in here. I know its hard to put those thoughts, and fears, aside, but try to, for your own sake.

Your risk of metastatic disease is really really small if your primary tumor (IF its a malign tumor) is 3cm. Theres a few extremely rare agressive RCC subtypes that can metastize early on, or if the tumor location is at a "bad spot". But the risk is really very small...

/G (still trying to paint that silver lining on your dark cloud)...

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Thanks Galrim....

Jojo61's picture
Jojo61
Posts: 481
Joined: Oct 2013

Hi CM,

I would like to say all the things that everyone else has said. We are here for you. I hope that this journey is an easy one for you.

Stay strong and hang in there!

Jojo

NewDay's picture
NewDay
Posts: 182
Joined: May 2012

Hi commutermom,

 

NCI/NIH is in Bethesda.  Actually, they didn't pay for my trip.  I forgot.  They did all of the scans and genetic tesing (quite a bit of it) all for free.  They are great people but a very busy place.  The genetic testing did not shed any light on mine and my nephew's RCC.  They saw me mainly because my path report from MD Anderson said I had a particular rare type they are interested in, but they decided I didn't have that one.  Instead I have some other unknown rare type.

I will also mention that I would definitely get a second opinion no matter who you see initially just to see that their recommend path is the same.

If you choose to contact NIH, call their genetic counselr, Lindsay Middleton at (301)402-7911.

Keep us updated.

Kathy

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