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Recently Cancer Free but still emotional

Yankee2012
Posts: 6
Joined: Dec 2017

Hello all...This is my first post here. Just looking for some comfort in knowing that someone else went thru this crazy up and down emotional rollercoaster.

I has a partially cystic/partially solid mass found on my rt kidney by accident. I had a CT on Nov 10th because of some RLQ pain that showed to be gastritis. In less than 3 weeks, I had a partial nephrectomy on Nov 30th. Path came back and do had my follow up on the 13th. It was confirmed Clear Cell RCC stage 1a grade 3, completely negative margins. My initial response was such relief..... I am still completely elated that I can say that I am cancer free but here's problem.... I now have to say that I had cancer and feel like it will be a constant fear of its return. Will it come back in my kidney? Will it show it's face in my lung? The worry, the constant ache of fear swallows me on most days. I have always had anxiety but now it seems worse. Will this ease with time? I am to have a chest xray, abd/pelvis MRI, and blood work in 6 months. I would be sure to say that the fear will be there when my scans are due. I'm only 36....I have way too many goals and dreams still yet to accomplish to allow this evil crap to define me. Thanks in advance for any advice you might be able to offer. 

icemantoo's picture
icemantoo
Posts: 3284
Joined: Jan 2010

Yankee.

 

While you didn't give us the size of the little bugger, having a partial suggests that it was small. I went throgh being nephed 15 yeqrs ago. Small tumors under 4cm are unlikely to spread.

 

 

Icemantoo

Yankee2012
Posts: 6
Joined: Dec 2017

3.7x2.5x2.6cm....

I have researched till I can't see straight and I haven't anything that has said that info. Thanks for that as it does give a little sigh of relief. I would love to read that article!!!!

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Hi. I too am in my 30s and just had my kidney removed 6 wks ago. It is all like a whirlwind so don't worry. I think the anxiety and awful feelings are normal. It will take time to digest everything from the news to the surgery and on through healing. It sucks that you had this, but you did have a better diagnosis! Small tumor. Partial nephrectomy. Stage 1. This means they caught it early and you have less chance of recurrence. Nobody will say it is 100%, but 80% it'll never come back is great!!! I think we all like to rush this process (that I am newly in too) but that isn't gonna work. Glad you are reaching out. You will get some great advice!

Yankee2012
Posts: 6
Joined: Dec 2017

I agree. Reaching out is something I need because keeping it all in just isn't an option. My husband is phenomenal but he's going thru it too....just from a different perspective. I am looking forward to talking with everyone. 

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

Hi Yankee, it's nice to meet you.

My situation is similar to yours. Stage 1 grade 2, kidney removed in February.

I find that I am not worried about recurrance. This may change in future but right now I am assuming it will not happen. I am not exactly sure why I feel this way. It is partly because I am more health focused now and I believe I am reducing my risk.

So now I am in the same place I was in before diagnosis. I always knew there was some chance of cancer in my future but I assumed it would never happen. I basically ignored it. I do wish I had become more health focused at an earlier age.

These days they say that about 50% of people will have cancer at some time. That is a much higher probability than a stage 1 recurrance. Now that we are cancer survivors do we still have that 50% risk or have we had our turn already? Life doesn't seem to work that way.

So here's the question. If you could communicate with your younger self, knowing what will happen in her future, would you advise her to be more anxious?

Steve.

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

I was also in my 30s, a 10 cm tumor was removed along with my right kidney. It was 3 1/2 years ago. Thanks heaven I'm NED.

What you feel is  normal, we all go through trauma in our own way, it take time to come back to your normal you.

It's good to speek up, to find comfort frim those with similar experience, to share emotions with close dear ones, to take care of oneself, to eat healthy food, to go to gym, to find new short term and mid term goals, to do what makes one happy, to follow long term dreams, ....

Time helped me and sure it will help you too

Bay Area Guy's picture
Bay Area Guy
Posts: 455
Joined: Jun 2016

Hi Yankee.

I know exactly what you're going through.  I'm 18 months out from a partial for a lesion that was even smaller than yours.  Until I had my first follow-up scan, I would find myself frequently wondering if they got the cancer out completely, if it ihad spread, what the odds were of it returning.....every question that you have going through your mind.  And that's all despite the surgeon, a nurse practitioner, my own primary care doctor and my sister (who is a nurse practitioner) telling me that every test result and every statistic under the sun was pointing to a 99.9% rate for a completely cancer-free existence.  The day of the first scan, I was a wreck.  I had to take a Xanax to calm myself down.  As expected, the scan showed absolutely no evidence of disease and at the follow-up appointment with the surgeon, he was amazed at the speed with which the incisions from the robotic were healing.  That gave me a lot more confdence that, in fact, what everyone was telling me was accurate.

Now, does that mean I never have a sneaking thought pop into my mind?  God, no.  When my second scan time came around, I was a little better, but I was still nervous.....not nervous enough to need a Xanax, but still nervous.  Again, the results were fine and the surgeon this time couldn't even find the incision scars, so he complemented himself on a job well done.  LOL.  I had to tell him I had a little to do with that, so we had a good laugh and he switched me from six month scans to annual scans.

This is all a long involved story but the point is that the feelings you are having are very natural.  They'll diminish over time as you rack up scan after scan that shows no evidence of disease (our dear Uncle NED).  But there will always be times when the thought pops into your head out of nowhere.  All of us here are part of a group that had to stare down something that, if not treated, would have killed us.  We all have reason to be happy that we're here to support each other, but we also all have little doubts and fears that creep into our minds.

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

You're barely a month past surgery so it's understandable that you feel that way. It hits you hard being told you have cancer and having surgery for it. The first few weeks or so you're just relieved it's over and you're focusing on recovery. So you don't have as much time to worry about the future or its reappearance elsewhere. So it makes sense to me that you're starting to feel more anxious now that it's done. It will ease with time, although I don't think it will ever go away. Or at least not for me. But you'll see that you spend less and less time worrying about it and more and more focusing on the normal everyday parts of your life. Around checkup time, yes, the anxiety will amp up. But it's completely natural to feel that way. The fact that you're young and strong is in your favor. There's a very good chance the surgery was the end of it. If you get too anxious around checkup time just ask for some Xanax. It's mild but does take the edge off.

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

Sorry you find yourself here.  The emotional rollercoaster, perfectly normal.  Speaking for myself, it does get better with time, but honestly I still have my moments and it's been 5+ years.  It became part of my history.  Try to tell myself it's character building and I try to convince myself to keep it in perspective, yes, I had cancer, but I don't now!  I try my best to live in the moment and not let the diagnosis define me.

Best wishes,

Donna~

Yankee2012
Posts: 6
Joined: Dec 2017

Such words of encouragement!!! Thank you all.... 

I do talk to my husband and closest friends a lot. It seems to help to talk about it. I actually have Xanax 0.5mg... I only use them when I feel like I'm spinning out of control. Most of these times are when I'm alone, feeling trapped because the weather is nasty and I'm not allowed to work yet. I plan on starting to slowly work out again. Just the thought of being on the treadmill for 30 min helps ease my mind so I know it will help. I agree that the words I HAD cancer helps too. This has opened my eyes to living a different way...a better way. Making better choices as to food, as to all around mental and physical health. My life before cancer was great so I can only make it better now that it's AFTER cancer. My biggest issue at hand is thinking of recurrence. I know the percentages are low but it' the thought of it showing up somewhere other than my kidney. I am a smoker and am working hard to quit. It's not the easiest thing to do as it decreases my stress (I know that sounds strange) but trying to quit and dealing with all of this is a struggle. I have decreased the amount drastically so far so I know it will be accomplished in the I hope so near future. The lectures from others are hard to handle. Hearing people preach because I smoke a cigarette...."Don't you think you've been thru enough.....I can't believe you are still smoking....you must be stupid"..... some have no idea what I am dealing with so their words do nothing but infuriate me. By no means do I ever want to come off as wallowing in self pity....I don't want to be that person. I know it's a one step at a time process and with the help of this group and my strong will too succeed, I will overcome.

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

I recommend the book Allan Carr's Easy Way to Quit Smoking.

You get to the end and don't want to smoke again. I mean you just don't feel like lighting up. It is surprising.

Steve.

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

I also recommend a low carb diet. After a week or two I felt a lot better about everything. 

Maybe start with some Youtube videos of William Davis. He says eating wheat can cause depression.

Steve.

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

It's ok to wallow in self-pity every now and then. As for smoking, you'll quit for good when you're ready. You cannot do it before no matter what you tell yourself. So give yourself a break, ignore the preachy comments, and focus on getting well. One way to really cut back is not to say you're quitting but that you're not having one "now". You'll have one later. That can really stretch the time. Telling yourself you've quit and never again will just add more stress and make it harder. Just quit that one cigarette until later :)

CRashster's picture
CRashster
Posts: 236
Joined: Mar 2017

There is nothing wrong with emotional. I still have like little PTSD type moments. I'll just be going along and all of a sudden, something in my head says "cancer. you had cancer". Throws me almost everytime. Seems to happen less over time. You'll be ok.

stevez
Posts: 51
Joined: Dec 2017

Not trying to hijack someone else's thread but this is just so incredible.  I haven't been able to capture how I feel, but this statement of going along and all the sudden I think.....cancer...I have cancer and it's overwhelming at times.  Guess I always thought I could get it and that's it's probable.  Still, a shock.  

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

HI, glad you are here and willing to share this difficult issue. Yes, many worry about the return of the dreaded "c" word, especially around scanning/monitoring appointments. However, one thing you CAN control is your attitude and persepctive. 

So, ask yourself, what do I gain by worrying if "c" will return? (notice I only use it in lower case so as not to give it any power)

Why waste needed energy in recovering and learning to be as healthy as you can be, diet, exercise, mental health. 

I usually say this prayer. If you are not a beliver, then leave off the first word:

(GOD) grant me the SERENITY to accept the things I cannot change. 

COURAGE to change the things I can 

and WISDOM to know the differnce.

 

I know, I know, easier said than done. But try best you can.

Either way, we'll always be here for YOU!

Sending you HOPE, HEALING and COURAGE in a gentle HUG!

Jan

BoondockSaint's picture
BoondockSaint
Posts: 242
Joined: Mar 2017

Welcome Yankee. Hate you have to be here but glad you found us. Our story is similar, I am the husband to an amazing woman for 21 years now. Longer than that really, we've know each other since we were 13 and 12. We're 46 and 45 now.

One thing that jumped out at me in your opening post was that you didn't want this to define you and it won't. I promise it will get better. You'll find that you'll think less and less of it as time passes. You'll get back to normal soon, albeit, a "new" normal.

My wife's mass was found incidentally also while looking for a kidney stone. We looked at it like this......

There's a reason she had that stone and we intend to take full advantage of the good fortune of finding it soon and getting it sent back to Hell from where it came. You will do the same.

Best wishes to you.

 

Yankee2012
Posts: 6
Joined: Dec 2017

I am looking forward to that new normal. This has definitely opened my eyes to a new light, a new way of seeing per say. I have found that talking out my feelings, be them good or bad, has helped. I have made a few steps forward in then last several days. Every once in a while that q step backwards shows up but I push thru. My husband and I are working thru this together. I will come out stronger than before. Thanks for such kind words. 

donna_lee's picture
donna_lee
Posts: 968
Joined: Feb 2009

And I still get emotional.  Especially if I know the hospital where my tests are done are deficient in the customer service end; or I don't feel the Nurse or Onc. is giving me a straight answer.

As in, did they lie?  No.  Did they tell the entire truth? No.

So being emotional comes with the territory-just don't be a "Sarah Heartburn" over it.

Hugs for Christmas.donna-lee

MFoster
Posts: 17
Joined: Sep 2017

I completely understand although most people don't. I am 35 and had left radical nephrectomy in July. 8.5 cm mass, stage 3 grade 1 RCC. I've had scans already due to pain. No signs of cancer. 1.6 mm spot on lung but doc said don't worry. It is horrible knowing I had cancer. I get emotional and worry about it coming back. It is normal to worry. My advice would be to live life. Be thankful it was found and that it is out. 

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