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Shecka1121
Posts: 114
Joined: Apr 2015

Ok, I was at work and some people mean well but do not realize the impact of their words... or the real possiblity is that I am full of anxiety, worry, etc.  and I twist their words.  

So I had surgery 8 weeks or so ago and a co-worker came to check on me as we both keep missing one another due to travel.  She asked very nicely, "did the pathology come back?  I confirmed to her that it was RCC, Stage 1 and it was 1 cm and dr said, most likely it will never come back. She then went on to tell me that her Pastor at church is dying from Melanoma... 

It was like someone punched me in the stomach.  I did not want to hear that.

So what did I do...yup, came home and had my husband check my moles and one that I know has not changed over time I now start to convience myself it looks like the pictures of melanoma.

I start researching and read there is a link betweeb melanoma and rcc.  Oh gosh, I am going deeper and deeper into anxiety.

Now I am freaking out, my husband walks by and starts getting irritated with me because I am on the internet and  I am making myself nuts.  You see, he was in the same meetings with me and my doctors.  He heard that I was fine, scanned all over, blood work is all good and no evidence of any cancer in my body. Kidney function is great.  Got to keep 97% of my kidney. My dr also told us she performed cryoblation where the tumor was cut out after the partial removal as an extra step. dr also noted that in her 20 years as an onco she has never seen a 1 cm mass metasis as a recurrene (noted that it could happen) but never with her.  This meeting was only four weeks ago. Hubby gets stressed/angry that I am not listening to my oncologist and researching things online and making myself crazy.  I also got a second opinion at Standford which confirmed what my original dr noted that chances of recurrence are low and I will just have to get scanned every six months for a while and then annually for the rest of my life.  My oncologist/surgeon is at UCSF. my husband keeps saying that I have two opinions from two of the best hospitals in the world and I am trying to almost prove them wrong.  He keeps asking me why don't I believe them.  

I know why....  I am scared.  Scared that I will not be here to raise my children (age 9 and 4), scared that I will not grow old with the love of my life, not be here for my sister when she is older, scared that what I worked hard for will not be enjoyed, scared that God is not hearing my prayers or worse will not grant me what I ask for.  I am angry that this happended to me at age 44, angry that I am the only person in my family to ever have HAD cancer (this includes cousins, aunts, etc.  By the way I have a big family).  I feel guilty that I could have caused this somehow.  I have been slightly overweight most of my life so I think I caused this.  Angry that RCC stole 2015 from me, my summer was spent physically with my kids but emotionally and mentally somewhere else. I feel bad that there are others on this site who are struggling severly and I feel guilty for not being as postive and inspiring as them.

When will I believe my docotrs when they tell me that I will not die of rcc, that I will see my kids proms, college, weddings? (of course assuming a natural disaster does not happen)

Ironically, I got a phone call from my primary care dr who told me that my oncologist called her and is worried about me due to my anxiety given the excellent prognosis and she wanted to know if I needed her help. I said what does that mean... she referred me to UCSF Osher center for alternative therapy and offered to review medications to help me cope with my anxiety. 

Is this my new normal?  By the way, I thought today was going to be a good day.  

Sorry to vent... just could not deal with rcc today and did not know where to turn.  Am I crazy to feel all of this for a 1 cm mass (grade 2)?

 

Nana4life's picture
Nana4life
Posts: 78
Joined: May 2015

i know exactly how you feel. I was stage 3 though! I've been given the all clear (for now). I know your anger and fear. I'm right there with you. I too spent my summer gripped with fear. Had all three beautiful grandkids with me but was so consumed with anxiety. I'm sorry you have this with such young kids. Im 54 and have 3 grandsons and a granddaughter on the way. I just started therapy in hopes of releasing this. I would strongly suggest it for you. Your kids need their mom to be present. I know it's very hard it sucks ***...you have to fight this for them. Read a book called Crazy Sexy Cancer by Kris Carr. Shes fun and has helped me have a better outlook. Keep fighting but let's not do this alone .... Seek support and fight those negative thoughts!!! 

Lets do this!!!

APny's picture
APny
Posts: 1988
Joined: Mar 2014

 

I think you had to be told you have cancer to truly understand what that does to your head, your mind, your emotions, and your imagination. Which is why I post here about my fears and anxieties.

The anger… I get it. No one in my big family ever had cancer either and 2014 was stolen from me with one awful thing happening after another. On top of cancer diagnosis, surgery, blood transfusions because of anemia, and the surgical removal of a colon polyp, my cat got sick and had to be put down at 17. Thank you for that icing on top of an already $hitty cake.

Guilt.. yep, have that too. I smoked for many years so feel I may have caused it.

Anxiety and panic over every little mole, bump, ache, yep. BTDT. I was also stage 1 with a fairly small 3.4 cm tumor but it was grade 3 which is not wonderful. So yeah, I worry.

So no, you’re not crazy and I think for a while this is the new normal. I’m taking Xanax to cope with anxiety and hopefully as more time goes by being NED I’ll return to the old normal. If that’s ever possible.

Never apologize for venting. It’s perfectly understandable and human. Don't be afraid to seek therapy or medication to help you through this. You will get through it but until then do anything that helps including venting here.

hugs, Andi

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Shecka, I'll tell you the same thing that I've been saying for a long time. (you see, we are living with cancer, not dieing from cancer). Anyway, as I've said to people who don't understand how overwhelming it can be to our psychie not being able to stop thinking about it, I say to those people, "Have you ever had a song get stuck in your head and you can't get it out?" That is what it is like living with cancer. That they seem to understand. So of course the next step is to start singing or whistling Christmas carols or some annoying pop diddy. You plant that into their head until it's contagiousness has them singing or whistling too. They start to get the idea. It will make you giggle and now you become a little more in control of your emotions. Remeber life is good. Dieing sucks. Your choice. Time wasted worrying is never recoverable.

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

Shecka, all of those thoughts over just one comment from a co-worker? I have a friend who was diagnosed with stage 1 RCC 10 years ago, and he only revealed to me last year about it because he did not want anyone to know, and he only did because I told him about my diagnosis (same, stage 1, RCC, Removed by open surgery, 95% of my kidney preserved).

I feel strange telling people I was diagnosed with cancer. I certainly can't say I "have" cancer, because I consider it gone and out of my body.  But, that does not mean I have forgotten about it or I am cavalier about the chances of recurrence.  However, as difficult as it may be, I will not let fear of death rule my life.  I'm 48 years old. I have two boys, ages 14 and 12, and a wife I love dearly.  I was working like a maniac before my diagnosis.  I consider my diagnosis the kick to my gut that I needed to work less and spend more time with my family, and LIVING IN THE PRESENT.  To me, worrying is wasted time.

Jim Morrison of the Doors sang "People are strange."  Reading stories like your make me understand why my friend revealed his diagnosis to only a few people.  Sometimes people don't know what to say.  It's like when someone dies---I simply say to the bereaved "I am sorry for your loss, and there is anything I can do for you, please let me know."  A lot of people try to relate and commiserate by saying more or about a loved one they lost.  In your situation, I think your coworker was trying to relate/commiserate that her pastor is dying from melanoma.  Not the kind of thing someone who recently was diagnosed with any cancer wants to hear, but your coworker has no idea how fragile somone's mind can be after being in shock from a cancer diagnosis.

Moving forward, I would not tell that many people about what you went through.  Unless they have been through it, they do not know what to say.  But don't let other people's problems get into your head and become your problems.  You are in a very good statistical group that will have a very small chance of recurrence.  

Shecka1121
Posts: 114
Joined: Apr 2015

I am so glad I wrote how I was feeling and thank you for all your responses.  They are a reality check.  I appreciate your time and listening.  There is comfort knowing that I am not in it alone.

 

Today I woke up and feel a lot better. i think I needed to break down and stop being strong for everyone.

 

All your comments hit home and thank you so much.  

 

I am seeing a therapist so I look forward to mental relief. 

 

Big hug to you all and you are an insipiration.  000000.............

Allochka's picture
Allochka
Posts: 929
Joined: Nov 2014

Please do not feel guilty for causing cancer somehow - you haven't. Don't feel guilty for having it in an easier way - consider it a blessing. Don't feel guilty for not being positive - you've just had a brush with potentially deadly disease and it is natural to be scared.

you shold be proud for dealjng with cancer and winning! The only thing you could be guilty for in the future - if you allow hypochondria to take over and steal your life. But that's in the future. Right now you have all right to be scared and emotional, because all this is still too fresh.

You will be allright, taking your pathology into account. Great that you'll be seeing a therapist - life with hypochondria and PTSD can suck even when NED.

Good luck, you'll be fine both physically and mentally!

Kdemart15
Posts: 20
Joined: Aug 2015

I have been going through the same thing.  I just had surgery a few days ago.  I'm constintly my wondering if I'll be there for my kids 1 &4 when they get old.  Will it reappear somewhere else.  My cousin calls to wish me luck and starts naming all these people who have passed away from cancer.  Not what I want to hear at all.  I think people don't know how to comfort people who are diagnosed like us. They want to say something and sometimes the wrong this or wrong tone of voice comes out.  I really do know what your going through both being so youMy. I too get anxiety.  i always have a horrible headache and aLot of GI problems.  But he best thing we can do is stay current with all specialist and ouR primary doctors with annual visits.  And if you dont feel right get it checked out.  It's better to have a piece of mind than worrying all day. Good luck with everything!

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Sorry for what you are going through

BUT...

I believe its up to us to teach others how we want to be treated
and to educate them on what they don't know (about us).

Warmly, Jan

Shecka1121
Posts: 114
Joined: Apr 2015

Again thank you everyone.  Today was the most normal day I have had :)  I cleaned all day, spring cleaned to be exact.  It was like a mental cleanse. I feel like I hit rock bottom and now climbing my way out.

Jan, you are right!  K, I know how hard it is to have young kids and worry about them.  We will get through this.

 

I made a commitement to myself that I will not research but only visit this site.

 

Thanks everyone

Kdemart15
Posts: 20
Joined: Aug 2015

I think your right with the research.  No more looking thing up sounds like a good plan!

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014



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I was there exactly one year ago. I was deadly scared and couldn't stop searching on net even though I knew it was a wrong action, I spent almost all day, searching about RCC and even I used to wake up in the middle of nights, scared and hopeless trying to find an answer on Internet. Every news about someone dying of cancer, no matter what type, made me feel even more hopeless. I also remember telling myself, I won't feel any better in the future no matter what others say. I also remember I was crying almost all days, and thinking about the worst possibilities.

But believe me, time helps and time heals. Since almost four-five months ago I started to gain more mental strength (I met with a therapist for few sessions) and now I'm almost back to normal me. I'm enjoying my life again. This thought of having HAD cancer is still in my mind, whitch I think will remain with me forever but it can't stop me from living my life anymore.

You need "distance from diagnosis day" as another member told me one year ago, Time will do the magic and you'll enjoy your life once again. And please be accompanied by some friends or family members who have empathy with you and could understand what you're going through. You really don't need someone telling you how deadly cancer is!!!. Spend your free time watching comic movies, do exercises and dance, watch happy ending movies, listen to positive music, meet fun and energetic friends.

& Make sure, you'll be there when your grandchildren celebrate their weddings.

Forough

 

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

Dont worry, Sorry try to not worry. I know its impossible, but people try to sat the righ thing and fail hilariously. Maybe we could make  a list of them.

 

I like Socrates as the Athenian jury condemn him to death. :"and so we part you and I. you to live and I to die. Who has the better fate you or I? Who knows?

Dembel
Posts: 32
Joined: Jul 2015

Hihi,

Good you're climbing out! :-)

People can be terrible.....I'm "only" the partner of a 43-year old with RCC since June, stage 3, grade 2, radical nephrectomy done. When I got back to work, my boss said to me "terrible disease this cancer, I just lost a friend 6 months after diagnosis". I can assure you..........even as a partner, this is NOT what you need to hear!!!

Just don't listen, at best, only the doctors have some idea, and that is good news in your case :-)

I'm not sure the worry will ever stop.....for us it's only been 2 months we (trying to) live with this. The worry, but also the anger of 'why me', it doesn't seem fair at 43....living healthy, not obese, not smoking, sport a lot etc.... but that's life! ANd now we have decided (he even more than me) to make the best of it.

You will live happily ever after :-)

All the best!

Demi

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

People's responses range quite a bit. I have friends who are totally open with me - which I really appreciate - and have friends who don't discuss it at all. It is hard to know what to say, I know. But I have had some really awkward moments: The first one was when I was first diagnosed - I hadn't even had the surgery yet. I had to go to the bank and was getting my financial matters set in place. I told her I was having surgery...the conversation went on to the point where I told her I had kidney cancer. She said the other teller's mother had kidney cancer as well, but some of the cancer "spores" got released (or something like that) as they were removing the kidney and she didn't make it. I know she was mortified after the words left her mouth. I reassured her and left when I was finished with the banking. But it scared the hell out of me!!

 Another time, a friend was talking about someone else we knew who was undergoing further cancer treatment, and she said to me "I am not surprised her cancer is back. Let's face it: cancer NEVER goes away". I nodded, didn't say anymore. Then I could see her face transform when she remembered that I also had cancer.

I had a friend whose husband popped by the day before my surgery and brought me flowers (it also was my birthday). She came to visit me at the hospital the day after the surgery, and told me that the only reason he brought me flowers was because he was feeliing guilty because he dreamed that I died. What kind of person says stuff like that?? She also told me some other very disturbing things - the day after I had my kidney out! In front of my oldest son! I kept waking up that night in the hospital and thinking of all the horrible things she said. I have since distanced myself from her - and talked to my son afterwards. But he reassured me that he had her figured out. Knew she was crazy from the moment he met her. I am glad my son has more common sense than I seem to! LOL.

So, it is all very delicate. For others and for us. And a learning experience, as well.

The worry doesn't go away. But with each NED result, the worry lessens a little bit. The trick is to live life with the proper balance - don't let cancer win by devouring your life - through worry, through taking the joy out of your life. It can enhance your life (hard to believe, but it can!). It can enhance your life because you savor things more, take the time for the important things, and not waste your precious time with things/people that are no good for you. Think of cancer as forcing your hand in prioritizing your life, bettering your life.

Hugs,

Jojo

 

 

Texasgranny38's picture
Texasgranny38
Posts: 24
Joined: Jul 2015

I really liked your kind words of encouragement, and the practical advice that can apply to anyone of us.  

Thanks, Jojo!

nancybuck's picture
nancybuck
Posts: 117
Joined: Sep 2015

I am new to this site. Just diagnosed with a small kidney cancer this week. I am meeting with a surgeon on Monday. More than likely will have a partial nephrectomy. 

I am asking that someone explain what some of the following mean:

 

RCC, NED and any others that you use in your posts. I feel silly for asking but I would love to understand the posts.

 

Thank you all and I hope to get to know each of you better soon.

 

Prayers for all of you in your fight with this horrible disease.

 

Nancy

2015-09-11

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

NED is No Evidence of Disease. It's the best we can hope for once we have had kidney cancer. There's no blood test or any definitive test to say whether we have additional cancer or it's come back. The best they can do, is say you have no symptoms and do some imaging to see if they see tumors (which they typically only look in certain places), and if they don't see anything they say you have No Evidence of Disease. We call this NED.

RCC stands for Renal Cell Carcinoma. There are different types of kidney masses. Many different types. In fact, whatever they've seen when they looked at your imaging, the almost surely won't know what it is until they remove it and get it under a microscope. Kidney cancer (Renal Cell Carcinoma) has different subtypes which can't be diagnosed until you have it looked at under a microscope/pathology is done. So you will also see different subtypes of kidney cancer discussed like Clear Cell Renal Cell Carcinoma (the most common type) called ccRCC. Chromophobe is another subtype and we'd call that chRCC (I'm already getting out of my comfort zone describing these). There are others.

You might be interested in reading up on different types of kidney masses, since you've been diagnosed with having one. There's an excellent website, unfortunately I just found it to be down at the moment. I'm not sure why it's down. You might check it periodically. http://www.kidneycancerinstitute.com

Best to you. Hope you don't have cancer. There's a chance I would guess that you don't. I was told 90% of these smaller masses they think are kidney cancer turn out to be kidney cancer. I hope you're in that 10% category of it not being cancer.

The good news if it is, and you have a small tumor, you have a pretty good prognosis of being done with this once you've had your surgery.

Warm regards,

Todd

 

 

 

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

I've never had anyone say anything about people dying from cancer and for that I'm very grateful. I totally understand why you're scared. Thank goodness you found this forum. I think the people here will help you put things in perspective so you can go on giving your sweet children lots of terrific memories! 

My experience has been the opposite with my siblings, father and close extended family. No one ever said anything about people dying of cancer - they just never said a word about my cancer at all. I live in NJ and they live in WI so I rarely get to visit. The first time I did was two years after my surgery and I was excited to see them because I had done so well with my surgery and scans. I was expecting them to ask how I was feeling but no one (except for my mom) even acknowledged that I had been sick let alone have cancer. It made me feel inconsequential and very much alone. If I mentioned my cancer in passing to anyone I just received silence In return. It was so weird!

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Hi Pony,

I can totally relate.  I've had the same experience from those closest to me, friends and family.  Sort of like they are sweeping it under the rug.  I can only assume that it must be the easiest way for each of them to deal with it?...not sure.  One of my daughters was talking to me a few months back about how her dad (my ex - same age) is not in the best of health because he had heart surgery (about the same time I had kidney surgery) and at least "you are healthy" she said.  And don't misunderstand, I am very thankful my health was restored because of an early diagnosis, but in my head I was thinking, he had a bypass procedure, I had cancer!! 

Crazy how our we digest the comments people make.......or don't make.

Donna~

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

YEs, you're right about how we take what others say or don't say, Donna, and I guess we all react differently to other people's concerns. I've always been someone who sides with the underdog so I try to be there for others. But I know people who think talking about personal things is a sign of weakness. I think it's just being human. 

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