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New member here with possible kidney cancer, Got some questions about telling

todfloyd's picture
todfloyd
Posts: 4
Joined: Apr 2013

The doc ordered a cat scan just before my gallbladder surgery.  They found a 1.1 cm complicated cyst/solid mass with an attenuation of 32.5 in my left kidney and a 1.8cm cyst / solid mass on my right kidney with a attenuation of 38HU.

I visited the urologists and cancer was the 5th word out of his mouth after introductions.  I actually thought I would have to ask him about cancer, boy was I wrong :)  We had a 45 minute conversation about cancer and he scheduled an MRI for a week later.  At the end of the conversation, I asked if he thought it was cancer, he gave a 50/50 precentage.

Now I am convinced I have the damn cancer and I found that I want to keep it a secret.  I don't want my coworkers and friends pitying me or treating me differently.  I have always thought that once it is known that a person has cancer that it takes over his identity.  Every conversation with or about him includes cancer.  So I'm not saying anything to anyone.  Of course my friends at work know something is wrong with the multiple doctor visits and changes in my attitude.  Once verrry very very close friend has basically written me off and ceased our closeness because I would not share what was happening to me to her.  Now I am really a mess..

What do you do?  Do you tell everyone or do you want to keep it secret?   To me  it is like I want my life to be normal for as long as possible, I do that by being in normal situations which makes me act and feel normal.  If I step on your toe I want you to be upset with me, not bite your lip  and smile at me for I am sick.

Right now, my wife, mom, boss and the now ex-friend knows. and I want to keep it to those people only.  Am I crazy or in denial?  Is this unhealthy?

 p.s.  If these are cancerous, being that I have three small children am I wrong of thinking the safest thing to do is remove both and be happy with dialysis.  My new goal is to see my 4 year old turn at minimum 21.  I'm not wanting to take any chances on this thing spreading and not letting me attain my goal.

Thanks for any input

Todd

 

 

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

Todd,

I am imagine everyone here approaches how and who they might share this unexpected news with differently.  As for me - I have no secrets. If it comes up I tell anyone who asks that I have cancer and then I quickly reassure them it is not known to be contagious.  :)

As a matter of fact, I am never at a loss for interesting dinner conversations anymore.  It really is a fascinating topic.  And you know what? I have yet to find anyone who either did not know someone close to them who already had/has cancer or who - surprise, surprise - were dealing with it personally themselves.

You do know that one out of two men (those who are luckly to live so long) are going to have to deal with cancer themselves?  Or that one of three women are going to have the same surprise in their life?

Now, about that idea of removing both kidneys???  Not so fast pardner.  That's what I would call really radical nephrectomy!  Wait and learn what your options really are.  And guess what? You can go and remove both of them and still have metastases appear almost anywhere else in your system.  So, no, surgery is no guarantee of anything around these parts.

So, spend some time here - and other informative sites - and you will quickly learn some real "secrets" behind this confounding disease.

Most importantly, the people here are very nice.  And they already know your secret so there is no problem on that score.

todfloyd's picture
todfloyd
Posts: 4
Joined: Apr 2013

Thanks nano,

 

I'm just having a flurry of info and possibilities going thur my head.  I think my issues are pretty small compared to others heer.  I guess I want to have a cancer free life like I have been, but that kinda difficult right now it seems with the whats looming  :) 

Thanks for the replay and I shall return with more questions soon.

Todd

 

icemantoo's picture
icemantoo
Posts: 1654
Joined: Jan 2010

Todd,

 

All of us on this board have been told we have Kidney Cancer and that we need major surgery right out of the gate. That is enough to scare the sh.. out of anybody. It sure scare me when I was diagnosed almost 11 years ago.

Your tumors assuming they are cancerous are very, very small. The recovery rate from surgery alone for tumors under 4cm is as close to 100% as possilble. Obviously with a very small tumor in both kidneys they are not going to take out both kidneys. Alternative procedures include one or both being treated with a partial nephrectomy, a freezing procedure or RFA a zapping or burning procedure.

Your comment to just remove the kidneys and go on dialysis is akin to having an incurable brain tumor and giving up because you have a headache. Face it you are going to get thru this with flying colors with a combination of 2 procedues and or surgeries. You are not going to be on dialysis and there is no reason that from what you have told us that you are not going to be around in 17 years in relatively good heath when your son turns 21. Faye across the street from me is relatively heathy and she is 18 years post op. Whether she lives another 17 years when she will be 99 is anybody's guess, but she sure isn't giving up.

Now that you either have or will likely have Cancer as the cysts grow now is the time  to fight back and let every one know that you have Cancer, that your prognosis is very good to excellent  and your are going to fight back and kick Cancer on its ASS. Meany members of our club who start out with much larger tumors in the 8 to 20 cm range would almost die for a diagnosis like yours. One thing worse than a diagnosis of Kidney Cancer is a diagnosis of Kidney Cancer where it has spread and at 1.1cm and 1.8 cm you are a long way from such a bleak diagnosis.

Remember everyone on this board has been diagnoed with Kidney Cancer and we are here to help you thru this initial shock. The quicker you pull yourself up and decide to fight back the better things will get.

 

Icemantoo

 

 

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

Cancer is going to be a part of your personality. As any other major paradigm shift in your life. You are who you are, cancer included. Hiding something which in the future will be a part of your mental framework isnt a good choice in my opinion. And whether its cancer, meeting God, finding the love of your life or something completely different, you should be open about it to your surroundings.

Keeping it secret is partially a denial. And believe me, denial is the last thing you need to deal with this mentally.

/G

foxhd's picture
foxhd
Posts: 2058
Joined: Oct 2011

This is a real sucky part. It gets easier as time goes by. Sometimes it is a convenient way to get rid of people. I didn't want anyone to know at first. But word spreads. Now that a couple years have gone by, I get a kick out of people expecting to see a weakened old man. And watching their expressions when they realize that I look a lot healthier than them. Especially the lazy ones. I tell them I've been exercising and jogging. They know all they are guilty of the opposite and with no excuse. I've heard the neighbors talking.

todd121
Posts: 641
Joined: Dec 2012

Todd,

Welcome. At least we'll have no problem remembering each other's names!

I'd keep my kidneys for awhile. Don't rush. You didn't mention your age? Cysts are common as we get older. They can pretty well tell from the CT scan if it's likely to be RCC or not (about 90% of what they think is RCC, really is). Hopefully you're seeing a urologic oncologist at this point? Someone who knows a lot about kidney cancer and cysts and is a surgeon?

Having a small tumor like that metastasize to the other kidney next is very, very rare. Unless you have one of the genetic conditions that predispose you to that. There's another member here that knows a great deal about that (he's had generations have family members with RCC). Hopefully both masses are not RCC.

Given their small size, depending on their location, you may be an excellent candidate for a partial nephrectomy so you can retain your kidney function.

These tumors usually grow pretty slow, so don't rush to make bad decisions. Get good advice. If you can get a medical oncologist that specializes in RCC, that's your best bet. If you likely have tumors in both kidneys, I would see a medical oncologist ASAP. One who specializes in RCC. There aren't a lot of them. I would not depend on a urologist/surgeon without medical oncology background. (Don't let the title urologic oncologist fool you. A medical oncologist normally has a background in hematology and is an internal medicine doctor. It's a different specialty.)

I was like you and didn't want to tell people. I think waiting until you know something is generally a good idea. On the other hand, I did tell everyone close to me really soon and I found it very helpful to have people know what was going on with me. Just be clear what you know and what you don't know but are worried about when you tell people what's going on with you. Telling people you have something, and then coming back and untelling and then later retelling a different story can cause issues. This is going to be an unfolding story.

In general, I found people to be very supportive and I was touched by their concern. It did seem to be at times that that's all people wanted to talk about (including me). When I'd had enough, I'd just say it. I'd say, "Let's talk about something else now. I've had enough of this." Or I'd even tell everyone at the beginning of dinner, "I know you have questions, let me answer them for you. Let's do it now, or at the end of dinner, but let's not talk about cancer for the entire meal." I also found it helpful to somewhat stick to answering people's questions. They sort of let you know they've had enough by not asking any more questions.

The other thing I did, was get a therapist through my work insurance. It costs me $25 a session, but she has to listen to me moan, complain, talk about difficult emotions, etc. that my family might not be able to listen to. This has helped. I've been seeing her once a week for a couple of months.

Hope something here helps. Best wishes,

Todd

todfloyd's picture
todfloyd
Posts: 4
Joined: Apr 2013

By the way I am 45 years old in good health until now.

Thanks so much for all the help and advice.  I am not so sure why I was for this to not be known but now that is changing.  Loosing a great friend (or so I thought) for I didn't share what I was going thru threw me for a huge loop also.

I have shared with both my brothers for they needed to know.

I have my Mri and urologists appt thursday, so hopefully it will be shown to not be cancer.

I do have one more question,  if the mass on each kidney is cancerous, and it is determined that a partial nephrectomy is the suitable treatment on both kidneys.  Will it be possible that they perform a partial nephrectomy on both kidneys during the same operation? or wouild it have to be two seperate operations?

 

 

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

That is a great question to put your doctors.  However, it certainly is possible.  Here are a couple of articles that are pertinent:

"Synchronous nephrectomy with unilateral dual kidney transplantation: feasibility in patients with adult polycystic kidney disease"

http://www.ncbi.nlm.nih.gov/pubmed/22941144

"Simultaneous Laparoscopic Radical Nephrectomy and Laparoscopic Sigmoidectomy for Synchronous Renal Cell Carcinoma and Colonic Adenocarcinoma"

http://online.liebertpub.com/doi/abs/10.1089/1092642041255496?journalCode=lap

foxhd's picture
foxhd
Posts: 2058
Joined: Oct 2011

If after your scans and surgery you find out that you do or don't have cancer, just lie to everyone. If you can feel good about it ,do it. Or tell the truth. I don't carry a sign around, but it is no longer a secret. One less weight on your shoulders. I don't believe that anyone you know, that you care about, should be an issue for you. To me it is like the girl with a bad reputation in high school. After a while, everybody has done it. So, just get over it and move on. Those with big mouths become insignificant. You will know who your friends really are.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I guess I need to stop stopping people on the street and telling them!  :)  LOL 

oldguy5
Posts: 7
Joined: Apr 2013

Tell people who need to know at work that you've got cancer and how you're dealing with it.  Word will spread, and some people may ask about it.  Just tell them you're working on it.  I didn't tell any relatives other than my immediate family until I had a surgery date set, and didn't make an "announcement" until my wife posted on my Facebook account that I was out of surgery and everything went well.  Generally, "I've got cancer" is usually followed by an awkward pause in conversation, but "I had cancer and the doctor got that sucker all out" is a good way to let people know.

mrs_blkjak's picture
mrs_blkjak
Posts: 92
Joined: Apr 2013

My husband was very recently diagnosed so I don't have tons of experience with this yet. We have not kept it a secret for the most part. The only exception has been that we have chosen not to tell our children (who are 9 and 12) until we have all the information. We have also chosen to be discretionary with parents of our children's friends. Some know, but those that we don't trust to keep it from their children do not. They will find out eventually I'm sure. But for now this is what we need. The ones who know we are very close to and they respect our choice. We figure the more prayers the better! I hope you are found NOT to have cancer. Good luck!

sammy62257
Posts: 2
Joined: Apr 2013

I wouldn't hold back from telling the truth. It happens, and yes I know people look at u with pity, but some will respect u, pray for u and give u words of encouragment.

I had my left kidney removed 3/2/2012, the cancer then spread to certain bone areas, but thru the grace of god and radiation treatments, so far so good.

Godspeed and hope things go well, I am sure they will and will keep u in my prayers.

Stay well todd speak to u soon.

Harley61
Posts: 2
Joined: Apr 2013

I have also been recently diagnosed with RCC (4/23/13), I too am scared sh_tless. I have a 4cm mass on my right kidney and a 1cm uncharacterized spot on my left. Since my diagnosois I have been doing alot of research. And I have to agree with all the responces to your post. Slow down do some homework keep a positive outlook it could be a whole lot worse.

As far as letting your coworkers know about your cancer, i believe you will find a whole new network of support you didn't realize you had, i know i have and its comforting knowing ther eis support.

 

Best of luck to you.

Eims's picture
Eims
Posts: 423
Joined: Feb 2013

Hi Todd, I too went in with suspected gallstones and came out with a tumor on my left kidney!!  I had a radical nephrectomy on the 14th of Jan this year.  It all happened so fast and I felt like I was in a tunnel.  I chose not to tell my co-workers because it was a space where noone treated me any differently and it gave me a bit of relief too.  I told my manager and he was great and he started to be nice to me and I said don't be nice to me or I will cry...he then said I would end up looking like I was found in a bath of ice in Greece after having my kidney stolen....that made me laugh so hard because that is what I wanted and needed to hear!!  It is entirely up to you who you tell but Fox is right...it finds a way of getting out all by itself and to be honest people will surprise you!!!  You truly find out who your friends are cancer or no cancer!!!  Everyone here knows how you feel and its a nice place to come and chat......stay positive because honestly it is the only way to get through this and you will absolutely see your little ones 21st!!!  We all have waaaaaaay too much that we cannot miss...if that makes sense.  Stay strong and concentrate on what is important at the moment....getting well!!

Eims x

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