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Recurrance Worry

CK75
CK75 Member Posts: 15

Got my path report and it states stage T1a, Grade 2 Clear Cell. However, I am still constantly worried on possible recurrance and having read that some even have recurrance to the lungs etc. Will be having my first CT on Feb 3 and can't keep the pressure off being anxious.

From the report and MD explanation that there is 0.1mm positive margin which he said shouldn't be an issue as it will get burn off from the cut. Still inside me was kind of worried.

Now also constantly feeling some inner aches from surgery wounds and abdominal even after I completed my neph 3.5 months ago. Not sure whether is psychological.

My brother who passed on recently after battling RCC for 10 months, but his is stage 4, G4 and sarcomotoid and met to lungs, bones, l.nodes, liver. Doctor mention both of us are different.

Needing some advise. Thanks

 

 

Comments

  • CK75
    CK75 Member Posts: 15
    edited January 2017 #2
    My tumour is 3.5cm in

    My tumour is 3.5cm in greatest dimension (right kidney) and done through robotic partial neph.

  • icemantoo
    icemantoo Member Posts: 3,357 **
    edited January 2017 #3
    Your tumor is small

    CK,

    Mine was a tad larger 14 1/2 years ago. The odds are greatly in your your favor  that  all is well and your scans will be clear. Given your pathology you will be here for a long time to come. Your outcome should not be compared with your brother's whose history and pathology were the opposite of yours.

     

    Icemantoo

  • Bay Area Guy
    Bay Area Guy Member Posts: 521 **
    edited January 2017 #4
    I wish I could say that you

    I wish I could say that you'll get over the worry that your RCC will come back, but that would be a lie.  The concern will diminish over time, but it will never completely go away.  I had my first monitoring scan and followup with the surgeon (I also had a robotic partial) last week (and got an all clear), but I'll admit that when I was actually having the CT done, I couldn't stop shaking.  Yeah, it was cold that day, but that's not why I was shaking.  I was quite nervous, even though the surgeon, at the time of my procedure, told me he got the entire lesion (about 1.8cm, pathology report said chromophobe) and that nothing in any previous scan I had indicated that the RCC had spread.

    In regard to the pain around the incisions, I've unfortunately, had two other surgeries besides the neph.  Both were for issues in my colon and both were open abdominal surgeries.  The second, more serious surgery, required me to wear an ostomy bag for 2-1/2 months before my intestines could be reconnected.  That was in 2010.  I haven't had any issues with pain around the main incision area, which stretched from just below my navel to just above my pubc area, but the incision where the ostomy bag went, which was my lower right side quadrant, feels like it's pulling every once in a while, even today.  I think the feelings are generally related to where the incisions are made and whether any major muscles had to be cut into to get to the area of concern.

    My only complaint from the neph is in my hip.  From the time of the operation until today, I get a tingling sensation if I press my hip, similar to the sensation you would have a couple of days after someone hits you.  There's no bruise and there's no pain.  I can and do run on a daily basis with no problems, but it's just an odd feeling.

  • stub1969
    stub1969 Member Posts: 933 **
    edited January 2017 #5
    1st scan jitters

    That first scan is a real nerve wrecker.  I had my first scans on Novermber 29 and vividly recall those butterflies zipping around my stomach.  What you are feeling is completely normal.  Try to relax and celebrate in the fact that your tumor was found early leaving you with great odds of no re-occurance.  I'm passing on the advice from Fox: stop worrying and live life.  

    Stub

  • CK75
    CK75 Member Posts: 15
    edited January 2017 #6
    Hoping for the best

    Thanks. Appreciate all these information and experience. Just pray that it will be NED in my upcoming first CT.

  • Jan4you
    Jan4you Member Posts: 1,327
    CK75, use your faith.

    CK75, use your faith.

    I used to be a "worry wart" as a child. Learn fast that it is only wasted, negative energy I need for LIVING TODAY!

    This is why you are being monitored.

    Hang in there, Jan

     

  • todd121
    todd121 Member Posts: 1,448
    edited January 2017 #8
    Stage 1 Grade 2

    It's a pretty good prognosis. You need to be monitored, but don't worry too much. The chances are around the 5% range that it'll come back. You don't get a better prognosis than this with RCC. I understand you're worried. Just do the monitoring.

    If you had a radical nephrectomy, it's going to take months to feel normal. It took me over a year to really start to feel normal again. The insides take a long time to heal. My feeling is that your body needs time to adjust to the 1 kidney somehow also. I had weird/odd symptoms for months and also pains and fatigue for a few months. After a couple of years I felt really back to normal.

    Find ways to deal with your worrying. It will probably subside with time. I took a small dose of ativan at bed time when I couldn't stop worrying. I did meditation (I love Gerald White's MAARS cancer guided meditation CD. In fact, I still listen to it at bedtime quite often. Google it.), prayer, focused therapy for a few months, exercise. Make an action plan. Some people find anti-anxiety/anti-depression drugs help. Xanax or Ativan can be habit forming, so if you get those, try not to take them all the time. You might notice an anxiety surge after they wear off. That's why I only sometimes took a small dose and only at bedtime. Find somebody you can talk to that is good listener. Stay away from advice givers and problem solvers. You need someone that will listen to you. There are cancer survivor support groups. I went to some really regularly at first. I still go once in awhile. There's an RCC support group in my area. I go every 2-3 months now.

    Todd

  • DAC677
    DAC677 Member Posts: 59
    stub1969 said:

    1st scan jitters

    That first scan is a real nerve wrecker.  I had my first scans on Novermber 29 and vividly recall those butterflies zipping around my stomach.  What you are feeling is completely normal.  Try to relax and celebrate in the fact that your tumor was found early leaving you with great odds of no re-occurance.  I'm passing on the advice from Fox: stop worrying and live life.  

    Stub

    First scan 1/16/17

    My first scan was 1/16/17 and I was extremely nervous as we all are. I had a bad feeling it would be bad but I was wrong and it was fine. 

  • dhs1963
    dhs1963 Member Posts: 513
    edited February 2017 #10
    No one here can convince you not to worry

    This is a process of comming to grips with the fact that you have/had cancer  I was not anxious after the primary tumor was removed; I was T1b also, but grade 4 with sarcomitoid features.  This was almost 5 years ago.  For 6 months I thought I was cancer free, until scans six months in where a solitary met was discovered (and removed).   I have been NED since then.

    For the first couple of years NED I lived one scan at a time; I did not plan life after the next scan figuring there would be bad news.  Only, the news was good.  Now, 4 years post removal of the metastisis, I talk about my retirement plans -- I am 53.  I talk about longer term plans.  I rarely talk about cancer.  I have learned that I can only do what I can do.  And, things will work out one way or another.  My worrying will not help things.  

    In your case, get the CT, see what it says.  T1b CC is usually not agressive.  If you are a betting man, the odds are about 20-1 that you are done with it.  Those are good odds.  

  • lobbyist0724
    lobbyist0724 Member Posts: 471 **
    edited February 2017 #11
    I have been suffering since

    I have been suffering since 18 with anxiety, grounded for over 10 years until I met my second psychologist. After my diagonosis, it triggered obsessive-compulsive disorder (OCD) again and I was seeking all different methods to try to save myself, speed up the appointments, scan and surgery. As it can been a lengthy process in Canada. The good thing is resulting an early surgery just 4 weeks after my first Ultrasound result of a cystic mass. Then after the surgery, once my doctor confirmed it is RCC, it triggered my OCD again. I spent over 4 months reading all related medical documents, trial results and anything that is related to this disease day and night; trying to convince myself that I am fine. My wife keep telling me to talk to my psychologist, but I wanna to try to overcome it myself since I recalled she told me "be brave, have the courage, fear will be gone".

    So since January, it seems that my anxiety of recurrent is becoming more gentle to me. I am living a more normal life, starts planning and setting long term goals.

    As all others mentioned, fear will never be gone but how to minimize it and learn how to live with it will be something that you have to find out. Since it will be different for everyone. My suggestion is that don't let any question unanswered because it makes you worry more and later becoming fear. For a pT1a disease, a well known uro-oncologist told us he did over 500 hundread cases of them and none of them ever comes back. Hope this fact will help :)

    Best wish,

    Carmen