need your help for my RCC

foroughsh
foroughsh Member Posts: 779 Member

I am a  36-year-old woman, I had a flank pain two months ago which let to an emergency open radical nephrectomy with a very good recovery. then the pathology result showed it was a cystic Eosinophilic renal cell carcinoma, size 10cm and grade II furhman system.other information in pathology test are: 1) the tumor is confined to renal capsule. 2) negative for vascular invasion or extension to renal sinus. 3) ureter and vein is free from tumor. 4) adrenal gland is free from tumor and unremarkable adrenal gland. IHC result is also: positive for vimentin and weak for cd10 and ema.
my surgeon said I should had an Abdomen and pelvis C.T and Lung C.T three months after the surgery which means one month from now. He also said my tumor was T2b.
He is a great caring surgeon but coming from our culture he doesn't give me exact information about my situation and just gives me hope, which doesn't work of me at all. I have searched and found it's 75% possibility for 5-year-survival for patients in my stage. Today I found this forum which first made me cry for an hour, you are the first people I know who are suffering from the same thing. It feels better not to be alone in this world,
Now I have two questions, first, is there anyone who had the same stage as mine, can you give me info? I've always had a healthy diet, sportive, fresh girl and I don't really know what should i change in my daily life to have more chance to survive?
And the second, since the diagnosis till now I haven't had a normal life, sometimes I'm positive, some other times negative, sometimes  I start crying with no reason, and sometimes start planning for the future, sometimes I start asking myself why me? And it goes to other questions which finally leads to crying, I usually seem OK and behave normal but in my thoughts it's always thinking about it. Is there a suggestion to help me back on the track?
Wish you all healthiness

Comments

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Welcome

    Welcome to our forum, forroughsh. I know that the reason you are here is not great, but I have always said that the members on this forum are the silver lining of being diagnosed with RCC.

    What you are feeling right now is totally normal. There is confusion, anger and worry. This is a good place to express your fears as well as educate yourself.

    I found that after I had my nephrectomy last December, the health care system did nothing as far as guidance for caring for myself. You now only have one kidney so you need to take care of it.

    Some of the basics are: do not use advil (tylenol is ok), stay away from all aspartame and try and eat non processed food and stay away from alcohol. Other members will chime in here with their advice too.

    Laughing Keep smiling! Cheers to good health!

    Hugs

    Jojo

     

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    My thoughts

    foroughsh,

    While I have had an easier road in the 12 years since my nephrectomy with a much smaller tumor,  there are many on this board who have survived and thrived many years with less than a perfect start.  Over the last 12 years there have been many new and effective drugs to deal with any possibility of problems down the road. The statistics are constantly improving and have improved over the past 12 years and the 75%  may be out of date with the real number being higher.

     

    The purpose of these scans is to identify and nip any problem which delelops in the bud.

    That being said you should seek the referal to an oncologist preferably one who specializes in RCC for follow up care and advice, There are also drugs and trials out there for drugs that reduce the possibility of recurrance or mets before they occur which you may qualify for.

     

    Best wishes for a full , long and uneventful recovery.

     

    Icemantoo

     

     

     

     

     

     

     

  • foroughsh
    foroughsh Member Posts: 779 Member
    How can I stay positive?

     

    Thanks Icemantoo & Jojo

     

    Did you use help of a psychologist on your road? As I read your pages you're both very positive. Being positive is what I need most, but my thoughts get out of my control and almost break me down. I thought of talking to a psychologist or reading a related book? Have you done the same? What exactly did you do to stay positive?

     

     

     

     

     

  • foroughsh
    foroughsh Member Posts: 779 Member
    How can I stay positive?

     

     

     

     

  • NanoSecond
    NanoSecond Member Posts: 653
    foroughsh said:

    How can I stay positive?

     

     

     

     

    It's normal - you are still in shock.

    So think about those things that may allow you to relax.

    I may get in trouble for suggesting this, but positive thinking may be a bit over-rated:

    http://www.nytimes.com/2014/10/26/opinion/sunday/the-problem-with-positive-thinking.html

  • icemantoo
    icemantoo Member Posts: 3,361 Member

    It's normal - you are still in shock.

    So think about those things that may allow you to relax.

    I may get in trouble for suggesting this, but positive thinking may be a bit over-rated:

    http://www.nytimes.com/2014/10/26/opinion/sunday/the-problem-with-positive-thinking.html

    Just relax

    Being told you have kidney cancer at a young age and than having your kidney yanked out first thing is a little unsettling. As you can see from the hundreds of us on tthis board and 1000's elsewhere it is very easy to adjust to 1 kidney after the initial shock. OK so we have to take kidney friendly medications and watch our blood pressure a little more, but other than that having 1 kidney feels the same as having two. And to top it off we got rid of the one with Tommy Tumor attached. All of us have been thru this and although we would not recommend a nephrectomy as a matter of choice it is something in our past, not our present. And the future keeps getting better for those of us that started with a little extra baggage.

     

    Only members of our little club can joke about that neph we went thru.

     

    As time passes things will get better.

     

    I note this is my 1600th post or 1400th if I was from Alaska.

     

    Icemantoo

  • Ree_Maryland
    Ree_Maryland Member Posts: 161 Member
    icemantoo said:

    My thoughts

    foroughsh,

    While I have had an easier road in the 12 years since my nephrectomy with a much smaller tumor,  there are many on this board who have survived and thrived many years with less than a perfect start.  Over the last 12 years there have been many new and effective drugs to deal with any possibility of problems down the road. The statistics are constantly improving and have improved over the past 12 years and the 75%  may be out of date with the real number being higher.

     

    The purpose of these scans is to identify and nip any problem which delelops in the bud.

    That being said you should seek the referal to an oncologist preferably one who specializes in RCC for follow up care and advice, There are also drugs and trials out there for drugs that reduce the possibility of recurrance or mets before they occur which you may qualify for.

     

    Best wishes for a full , long and uneventful recovery.

     

    Icemantoo

     

     

     

     

     

     

     

    ENCORGEMENT

    Everytime I read a post from you ,it gives me encourgment, Think you so much for your imput on the RCC, I will keep reading your posts as well as others, It gives me comfort to see so many survioors of RCC , as I had my right kidney removed in April of this year. feeling alot better . Keep up all the encouging words{ this is to all the posts on here from everyone}  Ree from Maryland . 

  • sblairc
    sblairc Member Posts: 585 Member
    Time. It helps.

    It is like the process of grieveing. You will go through different stages, at your own pace.  My husband was 47. We have an 8 year old daughter. I have been going to a therapist/councellor for a year to help with my anxiety about his cancer coming back.. She has helped me learn how to get through the tough times. I was in a very dark place. It has been one year and tomorrow he will get his tests. Right now, I am much calmer than this time six months ago. You will get through this, with time. Please use this place to get support, it will help. Thinking of you. 

  • APny
    APny Member Posts: 1,995 Member
    sblairc said:

    Time. It helps.

    It is like the process of grieveing. You will go through different stages, at your own pace.  My husband was 47. We have an 8 year old daughter. I have been going to a therapist/councellor for a year to help with my anxiety about his cancer coming back.. She has helped me learn how to get through the tough times. I was in a very dark place. It has been one year and tomorrow he will get his tests. Right now, I am much calmer than this time six months ago. You will get through this, with time. Please use this place to get support, it will help. Thinking of you. 

    Foroughsh, so sorry you have to be here.

    Being positive is wonderful but it’s a lot easier said than achieved. In the beginning I also roller coastered between optimism and being positive, and down in the pits depressed and wondering why the heck this happened to me, who was also always so health conscious, active, and watched what I ate. It’s all perfectly normal, considering our diagnosis. It’s not like we were told we had appendicitis; we were told we had or have cancer. Not something that is easily put out of mind. Personally, I found it life-altering. So be patient and kind to yourself and yes, a psychologist can be a very big help if you find yourself unable to shake the sadness. Sometimes a short term anti-depressant or anti-anxiety med could help as well. I find Xanax to have been a god send. Wishing you the best and as said above, with time you will find yourself more at peace.

  • donna_lee
    donna_lee Member Posts: 1,041 Member
    APny said:

    Foroughsh, so sorry you have to be here.

    Being positive is wonderful but it’s a lot easier said than achieved. In the beginning I also roller coastered between optimism and being positive, and down in the pits depressed and wondering why the heck this happened to me, who was also always so health conscious, active, and watched what I ate. It’s all perfectly normal, considering our diagnosis. It’s not like we were told we had appendicitis; we were told we had or have cancer. Not something that is easily put out of mind. Personally, I found it life-altering. So be patient and kind to yourself and yes, a psychologist can be a very big help if you find yourself unable to shake the sadness. Sometimes a short term anti-depressant or anti-anxiety med could help as well. I find Xanax to have been a god send. Wishing you the best and as said above, with time you will find yourself more at peace.

    The word Depression

    comes to mind.  If you are not under the care of a regular Primary Care doctor, I would suggest you make an appointment.

    I guess, thankfully, I was on an anti-depressant med before this cancer thing all came about 8 years ago. Over 20 years ago, a dr. figured out that I did not produce enough brain serotonin to keep me from plunging into depression. And although the initial cancer DX and the wait to find out if anything could be done brought lots of tears, I got through. (Now the death of my mother-in-law in June sent me into a real tailspin and I had to have my meds boosted this summer.)

    Sometimes a traumatic loss, such as you are experiencing, can cause a temporary and short term depression.  Please do not hesitate to bring this to a physicians attention.  There are a number of types of anti-depressants that can help you.

    Keep us posted, and I hope you find some answers.

    Donna

  • foroughsh
    foroughsh Member Posts: 779 Member
    Thanks for your help

    Now I'm in the good mood, but I've decided to choose a therapist to make sure about my feelings in upcoming days & months. We've just bought a new apartment and are moving there, so it's great coincidence because all my thoughts and energy goes to a good direction. :) Thanks again for your support and help

  • foroughsh said:

    Thanks for your help

    Now I'm in the good mood, but I've decided to choose a therapist to make sure about my feelings in upcoming days & months. We've just bought a new apartment and are moving there, so it's great coincidence because all my thoughts and energy goes to a good direction. :) Thanks again for your support and help

    The why me question is a good

    The why me question is a good one. It is something I ask myself quite a bit this year.  I am the owner of a small company.  My year started with our offices being destroyed by a massive fire in our building.  Fortunately nobody was hurt. Then the kidney cancer diagnosis in April and surgery in July.  Capped off with an epic battle with my insurance company who initially refused to pay for my surgery to be done at Memorial Sloan Kettering.

    What I have learned is the follow the meaning of two sayings that used to have no meaning.  My Dad used to say "everything happens for a reason."  When I was younger, that did not mean a lot to me. The other saying is "make lemonade out of lemons."

    I got knocked down twice this year.  With both incidents, I feel I am coming out stronger and better.  Fortunately, wih the fire nobody was injured.  We were able to resructure our small company in ways that made us more efficient and profitable--so that's a good thing.  With the cancer, I consider myself lucky that I was diagnosed early, found a specialist who did a great job, and I feel like I got a new lease on life.  I often think that if my tumor was not discovered early, it could have been a much bigger and life-threatening problem later on in life.

    It took me a while to come to peace with this year.  In April, May and June, I was depressed and scared.  It is natural.  But don't stop believing that better days are ahead.  For most everybody here, the outcomes after surgery are extremely positive. 

  • myoung790
    myoung790 Member Posts: 75
    I have had many different

    I have had many different feelings and emotions lately.  I'm honestly not sure many can understand except for those that go through it.  I have good and bad days.  I am still in somewhat of a state of shock.  

    Try to keep your head up and let the emotions work themselves out.  That is what I am trying to do.  I talk with my husband and a close friend about how I am feeling daily and they let me vent.  Eventually, I hope, comes acceptance for what it is and what it was.  I'm not quite there yet.

  • todd121
    todd121 Member Posts: 1,448 Member
    foroughsh said:

    How can I stay positive?

     

    Thanks Icemantoo & Jojo

     

    Did you use help of a psychologist on your road? As I read your pages you're both very positive. Being positive is what I need most, but my thoughts get out of my control and almost break me down. I thought of talking to a psychologist or reading a related book? Have you done the same? What exactly did you do to stay positive?

     

     

     

     

     

    Things that might help

    I did see a counselor. I found exercise to help. I got a prescription for Xanax and Ativan (don't take both at the same time and only take it when you absolutely need it, they are addictive). I found 1 of these at bedtime helped me sleep when I was obsessing.

    Gerald White has a book out there about his fight with RCC. I only read half of it, but I found his meditation CD very helpful. After 2 years I still listen to it when falling asleep sometimes. It offers a guided visual meditation to help you relax and imagine your body fighting the cancer. I highly recommend his meditation CD. Google Gerald White and MAARS. He's a very supportive and helpful survivor. He personally answered my email when I ordered his book and he wrote an encouraging note in the cover of his book. He's survived Stage 4 RCC for over 20 years now and I believe he's in his early 80's.

    I found a couple of cancer survivor support groups and started going regularly. I made a friend at one of them that also had RCC and we meet for lunch now and then.

    Try and pay attention to what gives you more anxiety and do less of that and what helps and do more of that.

    Try different things. Walks. Eating healthy. Cutting back on stressful relationships/people. Get a massage. Listen to relaxing music.

    Just take good care of yourself. Do more of that. :) Look for information. Share on here.

    (Don't research stuff that makes you nervous).

    I've never heard of the type of RCC you have. 

    Wishing you the best,

    Todd

  • dme59
    dme59 Member Posts: 62
    donna_lee said:

    The word Depression

    comes to mind.  If you are not under the care of a regular Primary Care doctor, I would suggest you make an appointment.

    I guess, thankfully, I was on an anti-depressant med before this cancer thing all came about 8 years ago. Over 20 years ago, a dr. figured out that I did not produce enough brain serotonin to keep me from plunging into depression. And although the initial cancer DX and the wait to find out if anything could be done brought lots of tears, I got through. (Now the death of my mother-in-law in June sent me into a real tailspin and I had to have my meds boosted this summer.)

    Sometimes a traumatic loss, such as you are experiencing, can cause a temporary and short term depression.  Please do not hesitate to bring this to a physicians attention.  There are a number of types of anti-depressants that can help you.

    Keep us posted, and I hope you find some answers.

    Donna

    Your situation sounds very

    Donna, your situation sounds very similar to mine. I just went to my primary care dr. and got a new prescription for zoloft and xanax. I was pretty much just "plunging" into depression just thinking about old childhood memories, or family members I haven't seen in months/years. Anyhow the point is, Don't be afraid, or embarrassed to admit you need help. THere is plenty of it out there, just look in the right places.

    Dan