Really new but catching up quickly

I'm not American either, I'm 38 Iranian, and was diagnosed 19 months ago with 10 cm tumor on my right kidney, it was confined so I had neph and then follow up  till now, my last series of scan report was NED.

I had very difficult time coping with the "C" world, I'm very happy for you as your words are strong and show you are a strong fighter.

Just one example: a very wellknown Iranian singer  was diagnosed 15 years ago with stage four kidney cancer metastized to his brain, he is still fighting, recently not feeling very well but he is happilly alive, has made new CDs and performed live concerts. 

Wishing you all the best

Forough

I thought I was doing well with my 10cm specimin.

I'm a Brit, living in the States. I was diagnosed with kidney cancer 3 years ago, and I'm still alive and kicking and annoying the neighbours with my terrible banjo playing. I well remember the bowel chilling fear of being diagnosed with Cancer stage 4 (big) grade 4 (aggresively spreading). I remember being told it was incurable. Of course I heard the word 'terminal'. I dont mind admitting I cried tears of fear and despair to the sound of David Bowie singing 'Moonage Daydream' fergodssake.

The fear is the worst thing about this disease: Its never as bad as your imagination can, and will make it.

The fact is incurable is not the same as terminal. Its not even the same as untreatable. Look at HIV/AIDS 20 years ago it was a death sentence. Now it is just a chronic disease, easily treatable.

Cancer is going the same way. New discoveries are being made and new treatments are becoming available every months.

This is going to sound stupid, but there has never been a better time to have cancer. It is turning from a death sentence to a treatable chronic disease.

I aint gonna kid you that this is a walk in the park, cause it aint. Listen to your Doctors (and make sure they listen to you). There a whole bunch of treatments out there and you'll try them until you find one that works for you.

Good luck. and as Dave Allen used to say, 'May your God go with you.

Oh. Dont Google this disease, all the info is totally out of date.

Dutch1 said:

Footstomper is right

Kantbe;

My situation is about the same as yours -- except I'm three years ahead of you.  Footstomper's observations are right on.  I won't restate his points.  He does it very well.  Your disease is a serious problem, but it's a treatable problem.  There are solid chances of relatively long-term co-existence with your cancer.  Your life will be changed, no doubt. 

Once your family, friends and associates find out that you have a high stage cancer, you probably will notice that some of them will step up and be supportive and others will fade away.  For those who fade away, it isn't you, it's them.

Take care,

Dutch

Dutch says, some people will fade away. Thats a good thing. I also have receded from many people because I felt that I made them uncomfortable. I have more time now. I guess alot of things change as the years go by. And I have no complaints about it.

You're welcome here. Sorry you have to join us.

I hope you have access to some medical oncologists with RCC experience where you are? Or at least some medical oncologists who can get consults with a specialist who studies RCC?

There are several treatments around that have some pretty good chances of helping you out, so don't let what the docs who aren't plugged into the latest RCC research get you down if they are less than optimistic. Check out the smartpatients website. They have great support there too. I like to think of this place as more of a warm fuzzy, friendly place and that place as a more technical place (but both have some of both).

My tumor was only 7 cm (slightly under), but then I had a recurrence 2 years after and had to have another surgery. Now I'm on close observation. I've met many people in my cancer support groups that have been on treatments for years, in some cases 15-20 years. Some had lung mets, bone mets, brain mets. Drugs, radiation and surgery have all given them a lot of time. There is always hope!

Glad you stopped by to say hi. Please keep us updated on how you're doing.

Best wishes,

Todd

Hi Dani,

I just wanted to extend a warm welcome to the club nobody wants to join. But it has some terrific club members here, as you have probably already noted. I am sorry to hear of your health, but I can tell already that your great attitude is going to help you sail through this.

My tumor was 13 cm, and I was lucky to be stage 3, grade 2. I had the kidney removed December 2013. And so far, so good! Other members here have been living quite well with stage 4. And many have continued to work through a lot of it.

All the best to you with your upcoming appointment. Keep us posted!

Hugs

Jojo

Kantbe said:

Still gathering information

Hi all,

Thank you so much for your support, advise and for the reassurances - seriously means a lot. 

Since my last post I have had the staples removed - scar is impressive and my surgeon suggested that it would make a lovely base point for a tattoo (a bloody big one!). I have also had a PET scan to identify were the ba**ard is hiding - 2 large lymph nodes in abdomen (left over from surgery), all lymph nodes in chest and several spots in both lungs and a touch in the renal floor. I half expected to light up like a Christmas tree so all in all good news.

I see the oncologist on Monday to start treatment and my urologist has suggested that the first point of action wiLL be Surent. I have done some research and read a few clinical reports and it seems to make sense that this would be the starting point, I do, however, plan to make the oncologist defend this choice and sell it to me as the best option given the range of new drugs entering the market. Does anyone suggest alternatives for me to explore with the oncologist? Does anyone have experience with Surent?

On a final note - I am on a contract in Singapore and I have 14 months to go. My job tends to be highly stressfulful and quite public. My employers have been amazingly supportive over the last few weeks, however I am sensing an expectation that I will return home early, which I dont really want to do until I need to (better medical coverage and access to full range of drugs and clinical trials here that are not available at home). My question is; is it realistic to expect to continue to work full time? 

Thank you again for sharing and for you really kind support. I appreciate it very much.

Dani

I also found my employers incredibly supportive. I went back, part time at first then full time for this academic year. I couldnt do it due to side effects of my medication. By last November it was obvious to all that I was finding it very difficult to work every day, I went back  to part time but still it was no good for me and a terribly unpredictable education for the kids. I retired after trying to work for two years.

I cant give advice tho' because everyone's different. Thats my story its the best I can give.

Kantbe said:

A fellow educator?

I return to work in two weeks and am a bit worried about the side effects of whatever the oncologist decides to start me on (Sutent perhaps). Work is happy to have me back but are also very concetned about the effect time off with have on my classes, I am also worried but more about how to cope with 10-12 hour days! I am sure I will find away to work through it. 

Thank you for being willing to share your experience - I really appreciate it

If you can handle a quick return to your life as you knew it before cancer, more power to you.  But, please be prepared to adjust your personal and work schedule if you find that your body won't let you do what your head wants you to do.  Between the Sutent and the continuing recovery from major surgery, please be careful and be sure to take care of yourself.  I wouldn't have been able to do it, but I was in my early 60's when I had my surgery.  Perhaps your younger years can better get you through this time.

Best of wishes.

Dutch

WORKED VERY WELL FOR ME

DROP THE WORD "TERMINAL" UNLESS YOU LIVE IN TRAIN TERMINAL

WALTZ MATILDA FOR US!