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Anyone else deal with this

LesliePeters's picture
LesliePeters
Posts: 17
Joined: Dec 2014

I was diagnosed with stage 1 RCC in Jov of last year. I had partial nephrectomy and successful removal of mass. I have had the hardest time dealing with having cancer mentally. I havent dealt with it nor know where to start

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

Hi Leslie,

Phred here using my wifes loggin. I'm not sure if I can help much but I'll try. I had a complete nephrectomy along with the removal of an adrenal gland and a large tumour earlier this year. My problem was with denial. I just wanted to forget I ever had cancer, get cured and get on with life, but its not that simple. While I was busy avoiding the issue and not wanting to confront the possibility of its return, my family were going through the mental and emotional angst and I wasn't really there for them. Anyway, I'm starting to realise that I will have to live with this thing, or at least the threat of it returning for the rest of my life. Any small health issue seems to have a link back to a possible return of the cancer although the doctors assure me it hasn't and our GP (who is totally wrong by the way), says its gone and it can't come back.

So you and I are at opposite ends of the spectrum - me in denial and you not knowing how to deal with it. Well, what I do know is this. Both of our reactions are normal and common and both can be unhealthy mentally if not dealt with. We are dealing with enough physically without adding a huge mental burden as well. I guess there will always be the mental issues to deal with, but its important not to let them consume you. So, I suggest you try the following;

1. Acknowledge to yourself that you have cancer and that you will need to live with it for the rest of your life, whether its successfully treated or not.

2. FIGHT THE *******. Give it a name and hate it. Mines called a starfish. I hate starfish.

3. Seek professional counselling help from someone who's role is dealing with cancer issues. There's absolutely no shame and it will probably help.

4. Find and join a cancer support group. Here in New Zealand we have the Cancer Society and they are great.

5. Seek support from your closest friends and if they dont get it, find new closest friends. But understand that some people just cannot understand cancer and dont want too. They are still friends but they are useless in supporting you so keep looking until you find someone real about the issue. Family too for that matter.

6. Seek and get the best help to fight the cancer that you can. Another good link to go to is SmartPatients.com

7. Keep talking on this site and others. There are heaps of people going through the same thing.

 

I hope this helps and all the best.

Greg alias Phred

 

 

icemantoo's picture
icemantoo
Posts: 3279
Joined: Jan 2010

Leslie,

 

Lets hope that having had a partial neph. that it is small enough that it will never come back.

 

Hearing that word Cancer is enough to scare the sh** out of anyone.  It sure scared me at first and everyone else on this board. And whoever heard of Kidney Cancer.

 We have all been there and done that.  Fortunately with small tumors the words Kidney Cancer are worse than their bite.

 

Not fun. Nobody in their right mind would volunteer to join our club.

 

While hopefully the Cancer has gone away the word still leaves a bad taste.

 

Concentrate on living a normal life and treat it as a blessing that you survived and thrived after KidneyCancer. There are a lot of things much worse in life than a small Kidney Cancer tumor.

 

Icemantoo

LesliePeters's picture
LesliePeters
Posts: 17
Joined: Dec 2014

Phred

Tyanks for respondng. as u said we r at different ends of dealing with it... I appreciate what u had to post though... I find mysekf always worryi g ut will come back even though it was only a 4cm mass. Dr sad small percent come back blah,blah,blah..... I am now down to yearly scans and blood work... but what scares tye crap out ofme the most is I had classic gallbladder systems when they found the cancer so it a concern

jason.2835
Posts: 337
Joined: Nov 2014

Leslie,

I feel the same way, recently.  I had a very small mass and very successful surgery and was able to bounce back pretty quickly.  But in the past week or so, I've felt the dread creeping back into my mind and I'm pretty sure its because of my quick recovery.  I got back to life and back into the routine too quickly.  I haven't fully dealt with it.  I find myself kind of deflecting the subject when people ask me about it.  

The answer really is: there is no right answer in how to deal with having (or having HAD) cancer.  Everyone's different.  In my case, I have been STARVING for information, good or bad.  The more information I have, the realer it seems to me.  But some people deal with it differently.  I spoke with my doctor, who is very laid back, and she told me that I should be "thanking my lucky stars" that the cancer was caught so early, etc, etc, and my surgeon was also kind of blase about it as well.  So it's been hard to cope with the cancer itself because the doctor's say that my case is overwhelmingly a cure.  I guess it's a good problem to have.  

But I know how you feel.  You feel like one day, it's going to catch up to you no matter what the doctors say.  They want you to feel great and "get on with it," they see hundreds of cases like yours every year.  Some are worse.  But I don't think they see themselves as playing a part in the "dealing" process.  That's where WE come in.  Coming on here, reaching out, sharing stories and information... WE deal with it, TOGETHER.  So stick around a while and throw what you've learned out, or just read.  Coming on here is what keeps me honest about it.  I feel like if I didnt come on here, I wouldn't be real about what I've been through.

LesliePeters's picture
LesliePeters
Posts: 17
Joined: Dec 2014

Jason

Thanks for posting. It made me smile to see someone admit they understand how I am feeling. My husband has been by my side through this whole ordeal just after the diagnoses till now...My hardest thing is the unknown... yeah dr say it may notcome back but heck they thought i had gallbladder attacks when they saw the tumor.... I dont have any friends that have had cancer (thankfully) but yet itleaves me without someone whm really gets the scares of the cancer... I find myself more drawn to movies and shows wheere people are fighting and dealing with cancer in hopes to get that comraderie   i am lacking

vinnyc
Posts: 19
Joined: Jun 2011

It is not always obvious to patient or doctor where the pain is coming from, that's why the scan is done. Mine was not a kidney stone,

as first thought, it was cancer. Your doctor is right, stage one, a small chance of coming back. Actually a very small chance. Most of us

at stage 4 will not make 5 years. Consider yourself lucky, move on and start enjoying your life.

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

Hi Leslie,

I had a full nephrectomy last December. At first I was quite confident that they had got it all. It was a large tumor and pathology was stage 3. It took me til about May that it hit me. Probably because I had a seizure one day in May and they couldn't find a medical reason for it and attributed it to stress. At that point the feeling of vulnerability started to seep in. It got to the point where I couldn't stop crying and felt despair. Finally, I went to the doctor. And guess what? He was expecting me! (a few months before I was diagnosed, I had lost my mom to lung cancer, and a couple more heartbreaking tragedies happened.) He has been wonderful and supportive. I have since been going to a psychologist who has been phenomenal. I have been discussing it more with close friends and family. It turns out that I was being so optimistic at the beginning, that they held their own feelings back for fear of discouraging or scaring me. A close girlfriend said to me recently that she thinks I only just realized that I had cancer. I think she may be right. Talk about denial!

When I was first diagnosed, I didn't even cry. I was upset, but I didn't cry. My husband and I didn't really have the typical cancer discussion  - we just discussed the surgery - until just before the surgery. We were in the waiting room and just before I went in to get prepped, I finally said "in case anything happens to me...." and he said "nothing is going to happen. You are going to be fine." That was it. That was all we discussed -until a couple of weeks ago, after a session with the psychologist.

So you see, everyone's story is different. Except for the bottom line: we all have our fears....some sooner, some later. But it is perfectly normal to feel the way you have been feeling. You have received some excellent advice from some friends who posted before me. We are here for you!

Hugs

Jojo

LesliePeters's picture
LesliePeters
Posts: 17
Joined: Dec 2014

Jojo and others

I undrrstand I need to get on with life. I know I was very fortunate that being persistent about the pain I was experiencing is what led to the discovrry of the cancer. I was fortunate enough that my urological surgeon had also gone through the same surgery.  I have always heard and now learned from my experience not true that cancer doesn't hurt till later stages. 

Jojo

I like u havent dealt with the emotional. After finding out they saw a mass and radiologist was adamant about it being a neoplasm,I did have a few moments where I cried. By a few I mean that literally. I then went on into fight mode. Everyone I told aboutgthe cancer reacted and cried and I was put in the position of being thevstrong one. Right before my surgery in tge preop area as surgery time got closer I got more scared and nervous, but yet again even though I wanted to cry my eyes out I had to b strong for my husband and reassure him I would b ok.

 

So as u see "get over it, get on with life" is not where I am at.

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

Leslie,

I had a partial nephrectomy in July of 2014.  My first post-operative scans are on January 5, and I see my oncologist on January 9.   My attitude since July has been somewhat "out of sight, out of mind," but now with the scans coming up, worry is creeping into my head.  It's tough around the Christmas and New Year holiday, and I don't want to bring any of my family or friends down with my worries or fear.  On one hand I feel lucky that my tumor was small and removed early, but on the other hand, we all have to remain vigilant regarding recurrence. My screen name is about thinking positively about everything in life and being hopeful for positive outcomes.  It's the best we can do, even when faced with the worst of circumstances.  There are some folks on this board who have it 100 to 1000 times worse than me, and i just hope that I am in the one and done club like many of the others.

Stay vigilant, stay strong, stay positive.

 

 

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

Leslie,

I hope you didn't think my message was a "get over it and get on with your life" message. It wasn't. I want to extend my support to you. Having cancer, no matter what the stage, is a serious matter. We all need to address it emotionally to help us move on. I understand that completely! But it isn't easy - because it is always there hovering. I think - and hope - as time goes on - and we keep getting NED results (fingers crossed) that maybe the anxiety will eventually fade away. Cancer is evil.

Take care, and I wish you a carefree Christmas and Happy NED Year!!

Hugs

Jojo

LesliePeters's picture
LesliePeters
Posts: 17
Joined: Dec 2014

I understand how u feek about those first scans. For me it was the hardest one... If u can and dr can see if they can book the scans and ur follow up same day. For me my urologist is able to access the hospital's scans so i booked the dr apt in the afternoon of my scans... If u have to drink contrast I recommend drinking it fast.

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

We all cope differently. We have different values. For me, working for 35 years in health care has exposed me to death and dieing. Death doesn't scare me as it might scare others. I have been around too much of it.  But I'm not remotely ready to go. I feel far too young with way too much to do yet. I think that remaining positive is the trick. Any time worrying is not recoverable. It is lost forever. So do everything in your power to avoid negativity. Concentrate on finding the positive and make it your way of life. It may take practice. but you can do it.  It is like absolute zero. What is absolute zero? Something like 250 degrees below zero? If the temp. is -200 degrees, then there is 50 degrees of heat in that cold. Despite the odds, you can find the positive. Engineers have figured that out and build heat exchangers to both warm and cool us out of what was pure cold.

Learning to avoid all negative thoughts and words can actually be fun. When asked "How are you?" ALWAYS say, "GREAT!" Never say, "Not bad," When ever someone says "not bad" to me, I always say that I wish things were worse for you. Maybe you would be happier. Things like this have brought me a long way.

Another important thing to do, is to use this board regularly and make some personal friends. We are all in the same boat here, but, I'm sure you will find someone a bit more like you to share your feelings with. This resource sits here available in many ways. Occaisional use is nice. But utilizing it more regularly will provide much more support. This forum provides more along the interpersonal and emotional aspects. Smart patients offers food for the intellect.

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

English musician. Diagnosed with terminal cancer refused chemo and went on a farewell tour. Didnt die! Was reexamined and told that his was a rare form which was operable. Had surgery and survived. Says that having come to terms with death he cant work out what to do with this unexpected life thing.

I kind of feel the same way having nearly died last year. But every day feels like a bonus

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