38 yrs old 15cm renal mass with spread to lungs, adrenal, and lymph nodes

foroughsh said:

Mike
I'm very sorry for all

Mike

I'm very sorry for all you're going through, you're so young and having cancer at this age is far from what we expect. I was 36 years old too when they caught 10 cm tumor in my right kidney, it was 19 months ago. The treatment was just neph and I needed no more treatment so far but emotionally  it was like living in hell for long time.  All I can say is to stay positive and don't make the the worst conclusion, I was sure I wouldn't live more than few weeks of months and it was 19 months ago. There are many drugs and variety of treatments they'll put you on. We have some members who are on drugs for years, some of our stage four members are NED for last few years, sometimes the Mets are operable so a surgery will be an option. All you need is to find a urologist with experties in RCC, then have a neph, after a while they will put you on drugs or second or third surgery to remove/ stabilize/ reduction in size of Mets.

We have all been there, we feel you, I remember how frustrated I was as during first weeks or even months, but time heals and helps, you'll learn about RCC and all treatments out there. I personally know a rcc survivor who was diagnosed with stage four kidney cancer metastasised to brain, and guess what, it was 15 years ago, and he is alive.

You're young and as you say healthy other than this, so it helps you recover sooner and easier.

Keep us posted

We will take this journey with you, if you want us

Forough

Hello Mike,

Forough has told you all the main things in very detailed way, nothing for me to add. Sounds like you could be Stage 4, but it is NOT a death sentence these days. Many members here will testify that! 

It is good you've found us, read the posts of Stage 4 guys and see there is hope and future!

Alla

Nana4life said:

My son is 38 too

Hello Mike,

I am sorry. I know how hard it is. My son who is 38 years old had kidney cancer as well. He is a father of two young boys. He had a full nephrectomy on his right kidney last November. I had partial nep last year. Yes we both were diagonsed with kidny cancer the same year.

Stay calm and carry on. It sounds like you have some fight in you so that is exactly what you have to do. You can do this!!! I have to keep this short because I am leaving on a trip but I will be praying for you and please keep posting. What state are you in? Fight for the best doctors and the best treatments out there. You are worth it. You may have to be very assertive during this time but that will only benefit you. I do not consider myself an assertive person but this cancer has forced it out of me. I've learned that doctors and nurses are human and they can make mistakes or they can have a bad day. So I am assertive with love.

Take care and keep coming back!!

But then 54 seems too young to me and I'm 54. As people have said, its not the death sentence it once was. Its still a very serious disease, but very treatable.

Welcome to our board, you're in the right place. I myself am stage 4 (big) and grade 4(aggressively spreading) and have been since May 2013

Mike;

I agree with the prior posts.  Their tone is straight on.  My background is with stage 4 cancer also.  I've been doing OK ever since my surgery.  That's over 3 years ago. 

Dutch

AMAYEU said:

Foroughsh- Thank you for

Foroughsh- Thank you for taking time to share your experience and giving a detailed account of things to expect and hope for. 

 

Alla- Thanks for the reassurance it's not a death sentence. 

 

Nana4life-  Oh my, I couldn't imagine two diagnosed in the same year.  I live in California.  And I will remember assertive with love. 

 

Footstomper-  Ha. I guess I'm an early bloomer or got a head start with my age.  

 

Shecka- Thanks for your response.  I hope to stay on top of all the research.  I really need to involve my wife more about the technicalities.  I think we are both researching when not around each other.  I did come across one of your posts.  How was UCSF?   I am going there.  

 

Dutch- Thanks for sharing.  3 years and going!

 

To a place none of us ever wanted to be.  I can only tell you I wish I'd have found this site long before I did.  We all have something in common here and it sure does help.  Yes, spouses and other loved ones are helpful, but if they haven't experienced this firsthand they can't possibly know the anxiety that comes with a cancer diagnosis.  Just the word "cancer" can be very overwhelming to process and it definitely isn't a death sentence, despite the negativity that it carries.  It's quite a different type of adventure, to be sure.  Not trying to minimize the emotional toll it takes on the spouses and other loved ones though.  They walk a diffcult path along side of us and much like us (the patient) are quite helpless in many ways.  It can be quite transforming of our relationships in a good way, or it can be damaging.  It all depends on how we navigate the insane process that lies before us.

I will keep you and your family in my prayers.  Please update us with your progress.  Try your best to keep a positive frame of mind.  Changes lie ahead in your future, and typically not all of them are so bad.

Donna~

Hi Mike,

I'm sorry you're here with this kind of a medical issue.

Until they have pathology (looking at cells under a microscope), they are guessing what it is. Urologic oncologists handle surgery on genitorurinary tumors, but they do not treat metastatic disease. If you have tumors in multiple places besides your kidney, you really should have a consult with a medical oncologist (I'm not a doctor). They may not recommend surgery right away. They are the ones that manage the care of metastatic disease. They are the ones that treat with drugs, or refer us out to surgeons (urologists, cardoliologists/pulmonologists, etc.) or radiation etc.

Personally, once the cancer has or may have spread outside the kidney, I'd want a medical oncologist involved. This is a fast changing field (there have been many new drugs and new surgical/radiation techniques), so someone very familiar with kidney cancer would be ideal. Do you live near a national cancer center or a university medical school? One way to find an RCC specialist is to go looking for studies in your area that are related to RCC (renal cell carcinoma) and find the contact number of the doctor who is coordinating the study in your area. These doctors usually have policies to see patients in situations like yours within a few days of being called. I called the weekend before Thanskgiving and managed to get an appointment set up on the Monday after. Just be sure to tell them of the seriousness of your situation when you call for the appointment.

Urologists cut stuff out. While the treatment for Stage 1/2/3 is nephrectomy, once the cancer has spread it's not so clear that that is the first thing to do. Hopefully your urologic oncologist is going to help you figure out/make sure what you have in all those places before they decide a course of action. Usually they do a CT of chest/abdomen/pelvis with contrast if possible for more information. They also quite often do a nuclear bone scan (to look for bone lesions) and an MRI/PET scan of the brain (to look for brain mets). It's important to know the full extent of what you are dealing with before starting a treatment. As I said, until they look at cells under miscroscope, they can't tell what kind of cancer it is. It's possible to have more than one kind (although this is rare).

My two cents.

Please let us know what they are recommending and what tests you are going through. It helps us all to learn about this and we want to hear how you are doing.

I know it has to be very stressful. I came in here with one medium size tumor 3 1/2 years ago in my right kidney. Kidney removed. Then a litte over a year ago had a new tumor show up in my right adrenal gland. Adrenal gland removed. So far no other tumors. I'm followed closely by a medical oncologist who sees many RCC patients a week. A typical medical oncologist will only see a few RCC patients a year. It's not a very common cancer.

There are several treatments available now. I think any talk of treatment before they've made sure what you have is premature. Until they remove a tumor/some cells through surgery or a biopsy, they don't know what you have. Without knowing what exactly it is, you can't really make any treatment decisions.

Wishing you the very best.

Todd

Darron said:

Keep you chin up

i feel like I could be reading my own biography. Yes, you appear to be stage 4. Any spread outside the kidney jumps you to stage 4. Please take a minute to read my biography, scary how similar...the basics- 17cm mass in right kidney, 3 Can mass in left adrenal, lung spots...all back in October 2012.

i just had a scan last week and continue to be NED, coming up on two years now. Make sure you see a kidney cancer specialist. Do not rely on any oncologis. Kidney cancer is tricky, and if they are not a kidney cancer specialist, politely find a doctor who is one. where do you live, this site van help a lot with funding a food RCC specialist.

keep a positive attitide and be a self advocate. hope and pray for the beat for you!

Subject line says it all!!! Thanks for the update. 

Darron said:

Keep you chin up

i feel like I could be reading my own biography. Yes, you appear to be stage 4. Any spread outside the kidney jumps you to stage 4. Please take a minute to read my biography, scary how similar...the basics- 17cm mass in right kidney, 3 Can mass in left adrenal, lung spots...all back in October 2012.

i just had a scan last week and continue to be NED, coming up on two years now. Make sure you see a kidney cancer specialist. Do not rely on any oncologis. Kidney cancer is tricky, and if they are not a kidney cancer specialist, politely find a doctor who is one. where do you live, this site van help a lot with funding a food RCC specialist.

keep a positive attitide and be a self advocate. hope and pray for the beat for you!

YAAAY!!

Glad that all YOUR hard work, perseverance and good doctors are helping!

YOU are an inspiration for all~

Jan

At the end of 2015 my dad who is only 54 years old was diagnosed with a rare form of kidney cancer called Spindle Cell Sarcoma. In October of 2015 he went for a check up and was told there was a mass on his kidney over the next few months he was going back and forth to the hospital for different checks. In February 2016 he finally had his kidney removed and the mass which turned out to be bigger then his kidney, after the surgery he felt normal again but we waited nervously to find out the results on the tumor turns out it was cancerous... the doctor said we should take him to the best hospital in NY which is Sloan Kettering. We set a appointment and met with the doctors there they ended up doing more tests on him and it turns out the spot they removed the kidney and tumor that another tumor grew back so now they are started chemo and he has to go every three weeks to NY for chemo treatment they also found a small tumor on his liver and lung those arent cancerous but the doctors are hoping the chemo will kill them or shrink them. My dad is stage 3 right now I'm trying to stay postive that the cancer will go away! The doctors said with his type of cancer he might have only 5 years.... but I;m really hoping this chemo works and lives to 100!