Renal Cell Carcinoma (Kidney Cancer) Support Group
Renal cell carcinoma, also known by a gurnistical tumor, is the most common form of kidney cancer arising from the renal tubule. It is the most common type of kidney cancer in adults. Initial therapy is with surgery. It is notoriously resistant to radiation therapy and chemotherapy, although some cases respond to immunotherapy.
We found out that my wonderful partner has very advanced RCC last Thursday. His pelvis is being eaten into by a secondary tumour, and his kidney tumour is huge. it has been a massive shock as we had thought all his pain was muscular in origin, and, though annoying, not sinister
i just don't know how to 'be' really. Everything I thought I knew about our life together seems to have been snatched away, and I know this is a time for great re-evaluation of everything.
He started Sutent on Sunday (we're in the UK, and, somehow, the postcode lottery worked in our favour). Already I find that my vocabulary is changing.
Sorry, i don't have a specific question, I just wanted to join this community of people who know above all others what we are going through.
Thanks for reading.
i just don't know how to 'be' really. Everything I thought I knew about our life together seems to have been snatched away, and I know this is a time for great re-evaluation of everything.
He started Sutent on Sunday (we're in the UK, and, somehow, the postcode lottery worked in our favour). Already I find that my vocabulary is changing.
Sorry, i don't have a specific question, I just wanted to join this community of people who know above all others what we are going through.
Thanks for reading.
My husband is new the metistatic condition of RCC also. He's on his third wk of Sutent. You are reeling right now, and that's normal. However, it feels like crap! RCC really SUCKS BIG TIME because of the few traditional treatments it has!
How "involved" will you be in research, and helping him make decisions about his care?
Sarah
Getting such news is definitely shocking for you both. We've been through the same thing, so can totally understand what you're feeling. The most frigtening thing is thinking about the future. I make myself focus on only today, and that has helped me greatly.
My husband didn't have a good experience with Sutent, but most people tolerate it well. I pray that your partner will too.
Hang in there, and know that all of us on DS are here for you.
God bless!
Love,
Ingrid
I don't know about research, Sarah, the doctors haven't mentioned it, but I'm not sure if that's because we're in the Uk/not suitable...probably worth looking at. As to helping him make decisions about his care, well, I always said I wore the trousers, but....ultimately it's his decision, though I will be right there every step of the way. Smothering him a bit at the moment I think!
Focusing just on the moment sounds about right.
Sending lots of positive thoughts both your ways too
Meriel
I am sorry that you and your partner are going through this. I feel like I'm fairly seasoned with the experience you are now facing. My husband lost his kidney 7 years ago. Since that time the cancer spread to his lungs, some lymph nodes and his stomach. However, he has a good Oncologist (which I recommend) and that doctor is well researched on all the medicines and treatments available. My husband has tried Sutent and many other drugs including many clinical trials. Some worked for a period of time and then stopped working, and we move on to something else. After 7 years, we are starting to think that perhaps, it just may be possible to "live" with cancer as people live with other chronic diseases. Please don't lose hope and do find a good doctor who knows his Kidney cancer research. Good luck to you both.
LSMS
Not doing too great at the moment, as his pain levels are very high - since the diagnosis really, which i think must be at least partly psychological.
Very best wishes to all here tonight x x x x
I am so sorry to hear what you and your partner are going through. You will find a lot of love and caring on this site. If you believe in prayer, you will find a lot of that here also. You don't have to have a specific question - just let us know how you and your partner are doing.
I have lost a kidney, and been diagnosed with mRCC (metastatic Renal Cell Carcinoma). You are right - it is very difficult to know how to "be". For me, I have decided I am not going to let cancer consume my life the way it is trying to do to my body. Fight, do your research and concentrate on the joy of living, not dying.
We are here for you. Keep in touch.
Sandra
you are going thru the shovk of it all right now just stay with this site for any advice, you need to talk or get frustrations out....It's a long road as i know, my fiance and i have been living with it a year now....There are wonderful women here that will help you thru this, welcome to Daily Strenth...
God bless you & yor other half
Beccanne
My advice to you is to stay strong and positive, don't rely on internet research and be there at every doctor visit as the extra pair of ears.
Don't despair, as there is hope and much treatment available today. I don't know what the health care system is like in the UK, but Sutent is the drug of choice here in the U.S. for MRCC too.
Have they scheduled surgery for him?
This is a great web site and you will find information, compassion and support here.
Good luck to you both.
glors
Hunter, thank you for your support and prayers.
Beccaanne, I looked at your profile, and I'm so glad that your other half is still around. You seem to be so very strong. I too would like to believe, that, despite what the doctors say, this thing can be beaten, or at least controlled.
and, Glors, you are so right about going along to every appointment - partly it allows me to feel a tiny bit more in control of things, but also he doesn't take things in too well himself. No surgery is scheduled; it's all just too big and uncontrolled. I'm allowing myself to hope that the sutent may shrink things enough to allow for a nephrectomy at a later date, but am aware that is very much a best case scenario.
Lots of love to you all x x x
I'm sure you are reeling from the shock. I'll be praying for you, for coping, for decision making, for good communication between you and your partner. My husband had a neprectomy 5/08, and the RCC has spread to his pelvis. Had pins inserted into his pelvis and femur to stabilize the area to prevent fracture. Not any easy surgery, he is less than 1 week out, and recovery has not been what the orthopedic surgeon led him to believe, it has been more difficult. Continue to live life together, laugh together and cry together!
Take care of you!