Feelings of guilt

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. 

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 said:

We do need follow up!

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.

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 said:

Whatever

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.

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

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 said:

Same boat

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.

 

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 said:

Survivorship

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

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.

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!

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

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.