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Feelings of guilt

DSFrey
Posts: 69
Joined: Jan 2014

I'm starting to have guilty feelings about using this web resource. I honestly don't feel like I'm a survivor of anything. I didn't even really know I had cancer until after it was removed and I was "cured". The guilt goes even further than this, with my tumor being so small the real odds of me ever having to deal with this cancer again are exceedingly small, and I feel I would just be wasting the doctor's and radiologist's time such that it would be better for them to help someone that really needs their services. Am I being completely irrational with my rationalization?

rainsandpours's picture
rainsandpours
Posts: 136
Joined: Apr 2013

Regardless of your previous tumour size, you DO deserve the exact same care and followup.There are no guarantees in cancer.  Anything can happen, it coould recur, you could develop another form (as I did).  I will be eternally thankful that my Rad Onc for my thyroid cancer ordered my initial CT to check on the exact sizing of my mediastinal met.  The RCC was discovered because of that CT.

 

There is nothing to feel guilty about.  You  had cancer, this is a cancer support forum. 

icemantoo's picture
icemantoo
Posts: 3280
Joined: Jan 2010

DS,

 

No need to feel guilty. You had a disease that if left unchecked would have killed you. You are statistically at risk for other setbacks as well as less than perfect kidney function which adversely effects your heart. Your life expectancy is a little less than what it used to be. None of this was fun or is fun.

 

Appreciate life and live it to its fullest. No need to feel guilty that you dodged a bullit that was headed for you.

 

Icemantoo

 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

DS, 

Why would you want to risk your long term health? Check ups are so important irrespective of the size of your tumour, after all a tumour is a tumour. I had a very small low grade tumour in 2003, the tumour was ablated and with five years of clear scans behind me my Doctor considered me cured. I moved to France and subsequently had yearly ultrasounds. In 2012 I had a CT scan for a separate issue and low and behold they discovered a new tumour on the old site. The tumour had been miissed on the ultrasounds, unfortunately it had grown to over 4cm and turned out to be more aggressive. You probably know the rest.

You should feel no guilt, you have to stay vigilant. There is no real comfort zone when it comes to having had cancer, it's a sneak thief. Please keep up with your check ups, it can only serve to secure your future, your life is too precious.

You are a cancer survivor, and even if you don't always feel the need of support, we welcome yours. Be assured you have just as much right to be here as any of us:)

 

Djinnie x

APny's picture
APny
Posts: 1987
Joined: Mar 2014

After reading on this board for a while I realize that there’s no such thing (or at least shouldn’t be) as complacency that I was cured and have nothing to worry about in the future. Regardless of tumor size I realize that we’re all at risk for recurrence, and no matter how small that risk may seem statistically, the reality is that it’s there. So I don’t think that we’re wasting the radiologist’s time being monitored just because our tumors happened to be small. Regardless of size we need the follow up and we do need their services.

nsb748's picture
nsb748
Posts: 90
Joined: Feb 2014

DS,

I on occasion feel the same way.  One thing to keep in mind, is that many of the people who are in the more advanced stages of this disease got there due to a lack of proper follow-up care.  I'm sure they like the fact that people like us can learn from their stories and demand a higher standard of care and awareness, which will ultimately benefit everyone. 

 

Limelife50's picture
Limelife50
Posts: 476
Joined: Nov 2011

Sorry DS you are more than likely cured but then again just something to think about i was told i was cured in December of 2011 only to find out in April of 2012 surprise surprise !!!! found another tumor in my remaining Kidney so what i am trying to say is i would not recommend turning ones back to this disease.There is a member i know of on a Facebook cancer link who was told she was cured 21 years ago only to find out recently the cancer had recured in her lungs.I am not trying to cause people any stress but my point is you are one of us so why not hang around.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Not Guilty..!  Keep in mind you help all of us when you do well, we feel good that someone is doing so good..!!  Sure we (I) envy you.. but still relish in the joy when people are NED.  I hope to get to NED one day as well..  So please visit us every now and then to remind us of how good you are doing..!  WE need people like you..!

Thank You..!!

Ron

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

DS,

I couldn't agree more with Djinnie and the others, in that, regardless of tumor size, follow-up care is crucial to your long term health.  I think your thoughts say alot about the kind of person you are...not wanting to waste the time of doctors and radiologists who could be helping other patients, less fortunate than you.  That's very honorable, but irrational.  For, it's those very doctors and radiologists and tests that will hopefully prevent you from being one of those less fortunate patients.  

I'm curious to know how you feel about me using this site.  Should I feel guilty?  Should I log off and never sign on again because my tumor was small, caught early, never likely to return?  I think not.  It's a support site.  It's a give and take site.  You may never need to take the advice of others here but others will benefit from what you give.  You have given me words of support and I appreciate them so much.  Personally, I am not nearly as well versed in the ins and outs of RCC like so many others so, all I really have to offer, for the most part, are words of comfort.  Nobody is going to come to me for words of wisdom, they're gonna go to fox, Ron, Darron, Brenda, Djinnie, NanaSecond...I could go on and on.  But, if someone just needs to be heard or wants to vent or, like me, post silly paper gown pics...then I'm your girl.  My point is, everyone has something to offer.  Even YOU!!

I hope you'll stick around. 

a_oaklee
Posts: 523
Joined: Nov 2013

I read your post and was thinking that perhaps you are still in shock over the entire experience, due to how it all came about.  You got told you have cancer, had surgery, got lucky that it's  small, and someone said you are cured.  It all happened so incredibly fast.  Must have felt like a bad dream.  On top of that, all this is very recent.  I think you just need some time to gain perspective on everything that you have been through in a short period of time.  Then.....

I read your bio, and it all made sense to me.  You have a history of being healthy, strong, not going to doctors or feeling the need for them thus far in your life.  My husband is alot like that, and I admire him.  However, my husband did have a physical every year of his life (for what that was worth).  It's just the way you have always thought of getting help....that someone needs it more than you.   That is so incredibly independent and strong, kind of macho....lots of positives.  However, there's a downside.  If you make a choice to not seek help, or let something go because "it's not that bad"....with a diagnosis of RCC, things can go bad rather quickly. 

I truly hope that you continue with follow-ups.  You are deserving of that.  Your good health and long life and follow-up care has nothing to do with any other patient.

Take what you can from participation on this site and give what you can.  It's a personal choice.  You are absolutely entitled to be here.  There are few rules and an extraordinary number of helpful and caring participants.  You belong here as much as anyone else.  I encourage you to stay connected and educated, and please keep your follow-up appointments. 

 

A note to nsb:  RCC is a silent cancer.  As one person wrote it "creeps" up on a person.  When my husband urinated blood, was when we went to the hospital and he was diagnosed at Stage 4.  There was no way we could have known, and nothing we could have done.  He had yearly physicals.  Just the other day I told my husband, too bad we weren't in a car accident, or fell off a ladder and have a lumbar spine series done earlier.  What a strange comment don't you think?  This disease can be found by accident, literally and figuratively.  I really wish that we would have known when it was only a Stage 1.  His tumor was only  5cm, but already in bone and lymph nodes.  There were no signs or symptoms. 

Best of luck to you DS. 

Annie

 

Champers's picture
Champers
Posts: 12
Joined: Jan 2014

DS, I'm a passenger on the same boat as you...

Since my surgery in 2010, I've had lots of opportunity for rational and irrational thoughts about my RCC!

Rational: I am not a "survivor" nor having "battled" anything. My Stage 1 tumor was caught early and it was removed. 

Irrational: It is easy to feel guilt as I lurk here and read the stories of people much worse off than I at diagnosis. I am awed at their subsequent vigilance and persistance in dealing with each new met that shows up, and fearful that I wouldn't be as strong if I were in their shoes.

Rational:  I pop in once in a while and view members' input here as an immensely valuable resource. Because of them, I know that RCC is seen as more of a chronic disease rather than a death sentence. 

Irrational: Should I spare myself the guilt of lurking and just stop? Do I have any right to read these people's stories? Is it macabre and weird?

Rational: There are very few members here who were diagnosed at Stage 1 and are now dealing with mets. I have to tell myself it is statistically unlikely my RCC will return. But I will continue annual scans...just in case...

I don't think you are irrational in your rationalization. And you are not alone with the guilt.

 

a_oaklee
Posts: 523
Joined: Nov 2013

Sounds to me like you guys don't like the term "survivor" and "battled".  Lots of people  feel that way.  Kind of undeserving of the term.  My husband doesn't feel like a "survivor".  We feel like we are "treading water".   To put a term to it.  Most often I feel quite useless and frustrated.   It's complex, being the spouse and being a woman and mother.  I just want to fix everything and make it all better.  You both are describing that syndrome of PTSD.  "How did I get lucky?"  "Why am I doing well, when so many have it worse?"  "Am I deserving?"  Ah...the guilt of driving past a car crash and saying a prayer for the people, and then thanking God it wasn't you.  I get what you are feeling.  It gets better with time and if you get stuck there is help.  Articles online about PTSD and cancer survivorship.  Talk to eachother here, and know you are not alone.  Quite natural and normal feelings.

Does it help to know that I am very happy for you?  I love hearing a story of someone finding it early, having surgery and being cured.  YEAH! 

(champers:  really cute dog)  annie

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

I don't like those terms. Survivor. Let's be honest. None of us (even those that have never had cancer) are getting out of this alive. We've been given a good dose of that lesson. Most people walk around in a state of denial about this fact most of the time. I realize now that I'm surviving and that's what I was doing before, but the term "survivor" has this past tense idea like it's over with, and none of us know if it's over with or not. At least that's what I don't like about the term. And battle? I don't care for that term either. Have to think about why I don't like it.

Cured? Well, that remains to be seen too. For all of us. I hope it is, but only the future will tell. I'm healthy today, and grateful for that, and hopeful about the future. Still, I'll do my preventive stuff.

You belong here.

Don't get lulled into complacency. The odds are not "negligible", even for a small stage 1 grade 1 tumor. The studies I was shown say it is in the 1 out of 20 (3-7%) range. If it comes back, you want to catch it early. Catching it early can mean all the difference in the world in terms of survivability. I know a friend or two in my support groups with RCC, that had it, got the nephrectomy, then a few years later had a single, operable met that got caught early, had it removed, and then were cancer free for years after. Then I had a co-worker that didn't find it until it was way into Stage 4, and he lived 6 months (but this was several years ago before many of the drugs we have now). You aren't wasting their time. Get your followup CTs of your lungs/abdomen and pelvis regularly as suggested.

I don't feel guilty about using this site, but sometimes when I'm here a lot it does increase my anxiety. Even though I love to hang out here and visit with you guys, I find if I do it too much I start thinking about my cancer too much, and start obsessing more than normal about my chances (which are more like 1 out of 2) because I had a larger Stage 3 Grade 3 tumor.

So come and share and if you want to feel guilty, allow yourself to feel guilty for 10 seconds, and then tell yourself to stop it and enjoy visiting with us. You certainly deserve the followups and care of your doctors for prevention. The earlier you catch any recurrence, the better.

Best to you,

Todd

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

Survivors guilt is real. I know many of us have gone through this. I still do. Alot. But I am getting over it. This is why we are here. What is better than someone being detected and hopefully cured right in the beginning. Your story is inspirational. Just think how many people are getting their first scan and surgery. Afraid of cancer and afraid of dieing. Who do they want to be like? Me? or you? And don't confuse guilt with depression. Another cancer moment. I don't think enough people share their feelings. There is so much more to share than diagnosis and surgery. You have to get better in the head too for a full recovery.

DSFrey
Posts: 69
Joined: Jan 2014

You guys are making too much sense. I suppose since my scans remaining this year are paid for I might as well get those. Being the introvert I am I'll leave it up to more seasoned members to provide info and emotional support. I'll just stick my head in the door once in awhile. I will likely have to switch to annual scans rather than bi-annual, my high deductible and living paycheck to paycheck will make that hard enough.

angec's picture
angec
Posts: 924
Joined: Mar 2012

Don't feel guilty!  I want to share a story with you. Since you joined in January then I doubt you would have known our TW.  A fellow member on the boards who we all love very much! He was diagnosed with Chromophobe cancer and had surgery. His tumor was advanced.  He found another tumor a few months later and had another surgery. But some point after that he was told that his scans were clear and that Chromophobe was a very slow growing disease and most likely he won't get anymore after that surgery. He came on the boards here and had a major, major guilt trip. He wanted to know why he was so special and why he was going to do well while others weren't so fortunate.  Well, shortly afterwards he was in pain and had another scan done. They found another tumor and along with that his nodes were infected. After sending his second tumor for a second opinion he found out that his cancer was mostly sarcomatoid, a very agressive type.  Well, needless to say his guilt trip turned into a pity party. He couldn't believe how he went from NED to an agressive cancer within a few months, or even less time. Sad to report, he is no longer with us today.

So, I am not writing this to scare you. You probably won't have anything return, and I hope that is so. But just be thankful for that and don't feel bad about it.  There are many others here like you and I am happy for it.  You are a part of this family now, and we will always wonder how you are.  Don't think that you are wasting anyone's time, you are not. You are a survivor and you still need to be checked. This is a very sneaky disease.  No one gets a 100% guarantee.  Continue to see your doctor like you should, don't put off any scans, don't suggest to the doctor to scan you less. The routine is usually every three months for the first year or two, depending more or less on the size/type.  But have at least two scans a year.  You don't have to hang around these boards because maybe it will bring you down. You have done well and can move on, but let that be because you feel the need to do that, not because you feel you are wasting people's time.  You definitely are important to us!

Glad you are doing well.  May this be the end of your ordeal with cancer.  You ARE a survivor!

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

This is pertainent to dsfrey,commutermom and so many others.  Please keep an eye on things and make sure you have regular followups. Denial doesn't cure cancer. Guilt does away.

Srashedb
Posts: 482
Joined: Dec 2013

as someone who had breast cancer almost 23 years ago, I can sort of understand the guilt part; I have lost friends to breast cancer and witnessed others undergoing debilitating treatments.

what troubles me is your comments that you are wasting doctors' time and energy; first, doctors get paid well for the "time and energy" and 2) treating you will not cause them to not treat another.

you are way early in declaring yourself safe; from what I have learned, renal carcinoma pops up when least expected and the first couple of years are significant for vigilance.

so, your question about rationalizing, in my opinion is yes. I do not get the connection of vigilance and being an introvert. I do not think you need to become an advocate or in any way come out of your shell.

Sarah

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

Fact- you are a cancer survivor.

Fact- you have experience that will help others deal with the same isses

Fact- you are feeling guilt, and emotion generated from cancer and therefor you need support

Fact- when my surgeon said clean margfins, I felt te same guilt.

I am glad you are here, we all help each other. That is what a team does.

aamdsi
Posts: 284
Joined: Apr 2014

Hello,

Am new to this site, and it's this subject that got me to join. I found out I had cancer the end of this January and had surgery a month later.  I feel I never had time to even deal with the fact I had cancer before hearing they got it all.  So the thought of being a "cancer survivor" doesn't sit well.  Feel like I am more a survivor of just the surgery.

I only think of even having had cancer in the dark hours of the night.  An it is then that the fears of it returning haunt me.

aamdsi
Posts: 284
Joined: Apr 2014

Hello,

Am new to this site, and it's this subject that got me to join. I found out I had cancer the end of this January and had surgery a month later.  I feel I never had time to even deal with the fact I had cancer before hearing they got it all.  So the thought of being a "cancer survivor" doesn't sit well.  Feel like I am more a survivor of just the surgery.

I only think of even having had cancer in the dark hours of the night and it is then that the fears of it returning haunt me.

aamdsi
Posts: 284
Joined: Apr 2014

Hello,

Am new to this site, and it's this subject that got me to join. I found out I had cancer the end of this January and had surgery a month later.  I feel I never had time to even deal with the fact I had cancer before hearing they got it all.  So the thought of being a "cancer survivor" doesn't sit well.  Feel like I am more a survivor of just the surgery.

I only think of even having had cancer in the dark hours of the night and it is then that the fears of it returning haunt me.

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

DSFrey - I know your feelings all too well. I'm just at the three year mark of my diagnosis and surgical 'cure' (all in a 60 timeframe.) Like you, I had a small tumor, caught early and had a lot of guilt. It really hit me last week when my boss' dad died of kidney cancer. Why him and not me? I'm lucky?!? Hardly, but yes.

I check in on the board from time to time and sometimes contribute. Sometimes I read about someone having a recurrance after a situation like mine. That scares the hell out of me and I run away for a while. Other times, I feel guilty because I don't offer enough comments/support/encouragement to others on the board.

We each experience our own emotions and have our own way of dealing with them. You DO have a right to be here and are welcome anytime to give and take what YOU need. As others have said, keep up your follow-up care and don't feel guilty about it.

Nibblersmom's picture
Nibblersmom
Posts: 1
Joined: Aug 2015

well I was kinda feeling a little alone,I too had a stage 1 "low risk" Tumor, after a month of gray zoneness being told maybe youll need chemo, maybe you won't, I finally got good news that I wouldn't need chemo but after the lumpectomy, 32 rounds of radiation and maybe hormone blocking therapy. The same night I got the good news, I was invited to go out with a group of young women in their thirtys (around my age), one was extremely happy and announced that I wouldnt need chemo, hard part was every other person there had underwent chemo. They all said I had a reason to celebrate and I felt I did too, but I also felt bad for feeling good. I'm also torn because when the docs thought I would benifit from chemo I felt comfortable sharing my grief with my survivor sisters, but I feel like i have no right to complain. I still can't say it has been easy, ive experenced family, marital, and possible future fertility issues. An early stage is a pretty lonely place, I feel bad talking to the only people who actually get it. Maybe if I met another early stager it would help.  i too feel bad when I go to the onco and I'm taking up her time with my emotional or other issues. 

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