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Time for me to vent some anger and anxiety again

DSFrey
Posts: 69
Joined: Jan 2014

It seems to me, that knowing that I had cancer, however insignificant it may have been, that it would make sense to do a full complete follow up to make certain that there wasn't any other asymptomatic cancer in other parts of my body. After all the whole deal about catching kidney cancers early, before they are symptomatic is that doing so makes them easier to deal with and offers a more promising outlook. Shouldn't the same be said of the possible mets? Why should I wait in ignorance hoping that the cancer isn't elsewhere in my body? Do the "professionals" really think that betting my life on the odds is a sane thing to do? To just wait and hope I don't get it in my lungs or brain or bones or whereever for the freaking rest of my life, until I either die or actually begin to have symptoms from the mets that would now likely shorten my life or at the very least decrease ones quality of life? When all they had to do was look and catch it before it got bad enough to hurt or kill. I'd gladly trade a full body CT or MRI and PET scan just one time for a lifetime of peace of mind. Call me crazy I guess. It's make me think what Einstein said once, that "God does not play dice", to which I would have reminded him, even so, doctors do. Now that the venting of the anger is done, onward with the anxiety. I finally get to get my chest CT this week for the first time ever. And it was my regular GP that I had to get to order it, since I'm on my second batch of antibiotics and this cough and lightheadedness isn't going away, nor are the pains in my chest, back and armpits. Then a week later I get my abdominal CT for my urologist to check up on the kidney. Right, the urologists seems to only want to look at the kidney he operated on apparently to see how its doing, to make sure there is no hematoma or urinoma I guess. He never said he was interested in watching my other kidney. I just realized that today, makes me kind of uneasy prolonging my relationship with him. Its like he really believes he cured me, even though on my pathology report, on the part describing the margins, the pathologist never said it was positive or negative. He left it up in the air because it was so freaking close, less than 0.1 mm! I'm thinking to myself, ok doc maybe you are some kind of Jedi with the robotic scalpel but it would have been ok with me if you would have cut a margin that was a bit bigger than that, my other kidney is fine afterall.

Galrim
Posts: 308
Joined: Apr 2013

Hi DS,

Your anxiety and thoughts on this are well understood by all of us, disregarding the histology and stage of disease.

On my own part, and I had more or less the same thoughts as you, understanding my report and thus understanding why my urologist/onc had the approach they had, was the key to get rid of some of those thoughts.

Statistics should be taken with a grain of salt or more, and all cases are individual, but to understand your "doc´s" approach and assesments you have to view yourself with their eyes.

I cant remember your histology and it seems to hold some of the reasons for your anxiety etc. Can you repeat it for my (our) understanding?

/G (currently contemplating whether or not being completely out of the control regimes after my 5 year scan next thing is a good or a bad thing...)

 

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

Hey DS, I feel your frustrations.  I have similar ones.  Day after tomorrow (the 29th) will be my 1 year post-op anniversary.  Last week, I saw my urologist for my post-op visit.  Upon leaving his office, I had already decided I would never return again.  I mentioned to him that I've had rib pain for the past 4 months or so and was looking forward to having a ct.  He told me that I really didn't need another ct because my cancer "was only stage 1, grade 2 and the likelihood of it returning were slim to none".  He ordered a chest x-ray.  I told him that I have good insurance that I pay out the *** for and I want ct's.  So, he ordered a ct of my belly and pelvis only...no chest ct.  I call BS on that idiotic way of thinking.  What were the odds of me having kidney cancer in the first place??...slim to none!  Yet, I had it.  Like you, I do not want to wait around in ignorance while cancer is destroying yet another organ when, CT's and PET scans are so readily available.  So, while I was at hospital for ct, the technician that was hooking up my IV (for contrast) asked why I was having the scan and I told her.  I also told her that I asked for a ct of the chest as well but that my urologist thought an x-ray was sufficient.  I explained to the tech that my oncologist has been watching an enlarged node between my lungs and it didn't make sense to me to not look at it while I am having contrast.  She offered to call my onc for an order of the chest.  It took her less than two minutes to make the call and get the approval.  I am currently awaiting results for the chest, abdomin and pelvis ct. 

Have you considered finding an oncologist to follow you?  I did so against the advice of my urologist and, as a result, last week was my 4th ct in the year since my surgery.  My onc has never ordered an x-ray, said they're a waste of time and that he prefers CT's.  Granted, my onc does not specialize in RCC but I'm OK with that...for now.  At least I feel like I'm doing all I can to ensure mets are caught early, should I develop them.  The peace of mind is priceless!!

It seems ridiculous that you are having to have ct's at two seperate times when you could have a chest, ab and pelvis all at once.  But, I know you are happy to be having them at all.  I would love to know the outcome so I hope you'll keep us posted.  I just got off the phone from calling my doctor to have them mail me a copy of my ct report.  I hope you'll do the same and get copies of both your ct's.  It is, afterall, how I learned I had cancer.  So, I ALWAYS get my report mailed to me...no matter what.

Doesn't it feel good to vent once in a while?  It's good therapy!!  I'll be thinking of you this week and next, and hopefully, you can keep your scanxiety at a minimum.  I find the more anxious I get, the more my aches and pains hurt and the worse my symptoms (whether real or imagined) get. 

Hang in there, you'll have a good dose of peace of mind soon.

Sindy

safado
Posts: 18
Joined: May 2014

there are few things as exhilarating as firing a bad doctor or lawyer...

Skagway Jack's picture
Skagway Jack
Posts: 224
Joined: Oct 2013

DSFrey,  Sindy has good advice there.  "Be the Boss"!  No one is looking out for your best interest more than you, so take control.  Chest X Rays dont do didly for what you need.  Do your part to ease your mind,  then do your best to forget it between appointments.  I really believe it is mind over matter.  We all understand your concerns here, hang in there. 

By the way I too got an Onc after my Urologist said it was not necessary.  I told my urologist..." its like an airplane I preflight it, but I like it when my copilot prefiights it too....less chance of missing something important"  Two docs...pilot and copilot.  Cheers,  Jack

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

with worries. Cancer is like a dandelion. Get rid of it if you don't want it to spread. But all it takes is a couple seeds to leave the flower. How can you catch them before they settle down and grow? All you can do is wait and watch. Eliminate the weeds as you find them. Your comment about your armpits is the most concerning to me. Something is going on. Here's hoping it's just some virus.

cjhawk38's picture
cjhawk38
Posts: 44
Joined: Dec 2013

I got bronchitis in October and still had it when I had my surgery in March and don’t you know coughing right after surgery was fun.  Bronchitis can last 6 months even with treatment.

I too had a small tumor 2cm stage 1 grade 2 and a 5cm fatty tumor.  My doctor told me not to see an oncologist because the damage that could be caused by all the x-rays the oncologist has to do would increase the chance of developing cancer somewhere else then 2 six month follow-ups a year with him.  He said if he wasn’t confident that he got it all or if it was a bigger tumor he would have recommended me to one.  I feel I have to trust my doctor he did after all save my life

 

I think no matter how small once you hear the C word while grateful to survive the thought that you could hear it again is always there.

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