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

AMAYEU
Posts: 8
Joined: Apr 2016

Hi Everyone!

My name is Mike and I am 38 years old.  I got my CT back on Tuesday.  I have 15cm renal mass on my right kidney.  There are "extensive scatterered cannonball metastatic lesions" in my lower lungs.  I also have 1.6cm metastatic lesion in my left adrenal, something about about lymph nodes.  I have a appointment with an urological oncologist on Tuesday and surgical urolgist on Thursday.  These will be my first meetings.

Why the first meeting with an urologist?   To make a long story short, I was denied life insurance in February after their blood test.  I went to see my doctor and 3 blood tests later I went for an ultrasound.   The ultrasound said I had a large mass on my liver   I saw gastroenterologist that orderd more blood tests and a CT.  Blood test showed no liver disease and the CT showed a kidney tumor.

This week I kept busy making sure I got appointments, copies of medical records, figuring out work plans and insurance.  Right now I feel l like I am in a holding period till I talk to the doctors next week.  Time makes your head spin.  I am on an emotional and mental rollercoaster.  Sometimes its denial as I feel normal with no pain. I also feel very optmistic and say surgery/treatment/recovery/back to work and life/ned.  The worst is the fear about morality and how my wife and kid will survive and live.  

With that, I thank you for allowing me to vent and express.  It's great that you can listen to newcomers and learn from survivors.  Everyone here contributes in some way.

So without seeing the doctor yet, do you think I am a stage 4 with a lot other issues?  It seems my tumor is on the large side plus all the other organ issues.  I probably caught this late and in a riskier state.  

Kind Regards

Mike

 

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

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

Allochka's picture
Allochka
Posts: 861
Joined: Nov 2014

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's picture
Nana4life
Posts: 78
Joined: May 2015

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!!

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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

 

Shecka1121
Posts: 114
Joined: Apr 2015

Hi Mike  I am sorry to hear what you are going through. It is scary to say the least.  We have all been there.  I was 44 when I found out about my cancer but I was fortunate to be at the very beginning of Stage 1.  Because of my obsessive personality I have done a lot of research.  Like others have said, even if it is stage 4 there are so many therapies out there that have made people go into remission for years.  One thing I have read over and over, younger people respond very well to intervention.

 

May I suggest you search out smartpatients.  There are a lot of young stage 4 people on that site that may be able to share their journey with you.  This way you are more prepared for your dr visits.

 

I will keep you in my prayers.

 

Dutch1's picture
Dutch1
Posts: 148
Joined: Mar 2014

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
Posts: 8
Joined: Apr 2016

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!

 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

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~

 

 

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

Hi Mike,

The reason that you are seeing a urologist is that he is the one that will perform the surgery.  Oncologists do not perform surgery.  They handle your cancer treatment.  Since you have tumors in your lungs, you are stage IV.  With your young age and tumors that large I strongly recommend that you see an RCC expert.  Kidney cancer is different from other cancers and it's treatments are different.  Because RCC is very uncommon, most general medical oncologists do not have a lot of experience with it.  The good news is that there are 8 FDA approved drugs.  I know you have boarded a roller coaster.  I was a basket case in the beginning.  The people on this site will be a great support for you.  I also recommend that you join SmartPatients.com.  There are many stage IV patients there and you will find a wealth of information.  People there share information about their experience with treatments, side effects and how to handle them.  You will find people who have been living with this disease for many years.  They can also recommend an RCC expert in your area.

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

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

canadiancruiser's picture
canadiancruiser
Posts: 14
Joined: Apr 2013

Hi Todd I my self had a partial done on right kidney on Sept 13 2012 .went for a ct scan in april and they found a stop on my right adrenal gland.Friday the 29th of April did the biopsy and am waiting to hear..Its funny how in both cases it was 3 1/2 years and it may have came back..Glad you are doing well and hoping for the best..

 

canadiancruiser's picture
canadiancruiser
Posts: 14
Joined: Apr 2013

Hello Todd.. my bio -op came back and its back in my adrenal gland.. waiting to see what they are going to do about it..

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Welcome, Mike.

Scary times for you right now, that is for sure. This is a great place for information, advice and support. You have already received some great advice. But I want to repeat this one: source out an excellent RCC oncologist. Please keep us posted on how things are going!

Hugs

Jojo

AMAYEU
Posts: 8
Joined: Apr 2016

Thank you for your wishes and advice.  It's late, and I am writing down all this and my additional pre meeting questions for tomorrow.  I will let you know how it goes.  

Mike

APny's picture
APny
Posts: 1933
Joined: Mar 2014

So sorry you have to be here. I agree with finding a good medical oncologist with RCC experience. Also agree that smartpatients is another excellent site for information and support. Wishing you the very best on this scary journey but know there are treatment approaches and that new ones are constantly being discovered and tested.

AMAYEU
Posts: 8
Joined: Apr 2016

Wow, Todd121 pretty much nailed it.  I had a very busy week... uncologist appointment, mri, ct scan of the chest, bone scan, and a meeting with urological surgeon.  And I still have a biopsy this coming Tuesday.   

I saw the uncologist on Tuesday.  He broke down the treatments into 3 categories. 1) Targeted, with Sutent or Votrient 2) Immunotherapy, with Opdivo 3) Clinical.  We also discussed IL-2.  He ordered all the scans to check the whole body for mets.  He explained the different types of RCC like clear cell, etc.  Treatment is now determined by the pathology report from the biopsy.  I felt the uncologist was leaning more toward treatment before surgery.

On the other hand and after talking with my urological surgeon, he felt removing the kidney tumor and other areas would be a good course of action.  This would be dependent on the pathology report and the opinion of a liver specialist because of the proximity to the liver.  We also discussed IL-2.  The case is on the tumor board so others are involved in the decisions. 

I signed up for smartpatients and there is alot of information, esp technical medical info on treatments.

Forgot to mention, chest and mri came back negative.  Waiting on bone scan. 

Mike

 

Jan4you's picture
Jan4you
Posts: 1317
Joined: Oct 2013

{{{{ HUGS MIKE  }}}}}

Glad you found us and Smart Patients too.We will walk this journey along side you,if you want us too. Hold you up at times,applaud your victories too~

Make sure your wife and family get the support and resourcesthey will need too. As you can see, this is a very treatable disease.

Sending you healing thoughts and love~

Jan

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

WHEN I WAS DIAGNOSED EXACTLY 3 years ago IL2 was the only hope of a cure. The onc. said my youth was on my side (I was 52) and it reduced the size of my tumours by half. You have to take it in the ICU tho' (make of that what you will).

Out of the others Opdiva has given me less side effects and has had the best results after IL2 which can be pretty rough in terms of side effects

Darron's picture
Darron
Posts: 303
Joined: Jun 2013

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!

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

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

APny's picture
APny
Posts: 1933
Joined: Mar 2014

Super happy for you, Darron! Wondeful news.

Jan4you's picture
Jan4you
Posts: 1317
Joined: Oct 2013

YAAAY!!

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

YOU are an inspiration for all~

Jan

_Catarina_
Posts: 4
Joined: Apr 2016

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!

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Hi Catarina and welcome.

You might want to repost this to the top of the discussion. Spindle cell sarcoma appears to be a connective tissue cancer and not kidney cancer. I understand it was found on the kidney. It's probably a very different kind of treatment.

Of course you're welcome to post anywhere you like, but you might want to see if there's another discussion group that more closely matches your dad's cancer. You may get better feedback. I know zip about this kind of cancer. Each type of cancer is so different.

Go to the top "Discussion Boards" selection. There is a group called "Sarcoma". I see posts regarding spindle cell sarcoma in that group. You might also try the group "rare and other forms of cancer"?

Wishing you the best,

Todd

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

I'm new to this board and don't have a lot of knowledge to share but I am wishing you the best. I understand how your world has been turned upside down especially since you're so young. So far your scans have been great! Good for you! I hope you continue to find hope!

AMAYEU
Posts: 8
Joined: Apr 2016

Crazy, Darron! We have the same tumor locations.  Its wonderful that the Nivolumab-Sutent trial worked for you.  I live in San Francisco and goto UCSF. 

Thanks for the support Jan and PonyWave

Update-  I got a call earlier this week from my uncologist and I have clear cell rcc based on the pathology.  There is ongoing dicussions between the oncologist and surgeon about surgery but they need the ok from the liver specialist due to proximity of the tumor to the liver.  Fast foward a coupled of days, I am to go on Sutent for a few months to shrink the kidney tumor before surgery. 

Has anyone seen posts of Sutent/treatment prior to sugery?  Been constantly searching on here and smart patients for some type of experience but coming up empty.  A link or opinions would be great!

Thanks Mike.

 

Srashedb
Posts: 482
Joined: Dec 2013

Mike:

 first of all, I am sorry that you are dealing with this at such a young age; my son is your age. my husband as stage 4 renal cancer and is being treated at UCSF. You are in excellent hands. I firmly believe that my husband is alive (and actually well) almost 3 years post diagnosis.

which doctors are treating you? My husband's surgeon was Max Meng and his oncologist is Chuck Ryan; his radiation oncologist is Jean Nakamura. They work as a team along with his gp and nephrologist.

i cannot answer your question about sutent 

 

Srashedb
Posts: 482
Joined: Dec 2013

 About sutent, if UCSF doctor recommends it, trust them; if you have any doubt, get a second opinion.

 Are you aware of the current trials with immunotherapy being done at UCSF? Dr. Fong is the head researcher on this.

 Sarah

AMAYEU
Posts: 8
Joined: Apr 2016

Hi Sarah,

Dr Won Kim is my oncologist and Dr Max Meng is my surgeon. Yes, we discussed immunotherapy and clinicals.  We also dicussed IL-2 offered at UC Davis and UCLA.  Good to know about Dr Fong as the researcher. 

Thank you for the support.

PS.  Staring at a bottle of sutent that was delivered to me. 

Mike 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Seems to be the first drug of choice for oncologists. Buy some soft, moist towelettes

Srashedb
Posts: 482
Joined: Dec 2013

 Max Meng is an incredible surgeon; he removed my husband's right kidney (10 cm) laproscopically  an hour and a half; loads of experience and a dark sense of humor.

 

AMAYEU
Posts: 8
Joined: Apr 2016

I hear great things from both doctors.  And HA! Looks like I will using my kid's baby wipes.  Sharing is caring!

Oh, I will be on 50mg Sutent.  4 weeks on, 2 weeks off, 4 weeks on, then scans to revaluate surgery. 

btchida
Posts: 1
Joined: Jun 2017

I am a 35 year survivor of spindle cell sarcoma.  This is not a death sentence.  I had a 20% chance of survival when diagnosed, and I will never forget my diagnosis.  My doctor looked my mom in the eye and said "you need to change your way of thinking; not everyone who comes in here dies."  Amen.  I have lived a good life since being diagnosed at age 8.  My wonderful surgeons cured me, and I have been cancer free since.  Please keep all hope.  

Johnol
Posts: 1
Joined: Jun 2017

How are you doing now? 

Thinking of you. 3 weeks after my rad neph clear cell left kid.

I made contact with a oncological social worker to provide support for me and family. 

Thankful for the modern medicine years ago options were limited.

 

Blessings

John

 

James62
Posts: 4
Joined: Jun 2017

I was in the U S Navy 72 thru 78. Nothing scared me. I found out I have kidney cancer and they are going to do a partial on it. I was over exposed to asbestos and have lesions in lungs and alot of crud but no cancer. I am very scared have a wife and daughter. I dont let them know. Dont sleep well. Does the fear get better or stays the same.

 

 

 

 

 

 

 

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

Hi James,

Welcome to our forum, it's good to meet you. Please tell us some more about yourself and your situation. How were you diagnosed? Is there a mass on your kidney? How big? Which kidney? Etc... It's best to start your own topic. 'Add new forum topic'.

If the docs are planning a partial nephrectomy then your tumour must be fairly small. That means you have a good chance of being free of cancer after the operation.

You've come to the right place. This is a very supportive group.  I think it would be hard to go through this alone. 

My right kidney was removed a few months ago.  It is scary but it does get better.  Life is 100% back to normal now.

Steve.

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

James,

Everyone is different, but in my case, I felt emotionally stronger after I decided to open up with my hubby. I didn't tell my family including my mom, and I tried to act luke a strong girl in front of my hubby just because I didn't want to put pressure on anyone. But I felt like living in hell. I was so vulnerable at that time and this decision was like putting more pressure on myself. It took me few months to finally admit I would need a shoulder to lean on.

Forough

beemurguia's picture
beemurguia
Posts: 57
Joined: Mar 2017

Mike, I am so sorry to hear of your recent health discovery.  I can only imagine you feel and how frustrating it can be to be with out proper health insurance.  I was initially told to have a 6-8cm tumor on the right kidney which warranted a nephrectomy.  Two months later surgery revealed a 11 cm tumor and simply because of the size of it it placed me at a Stage 3.  My Oncologist does not recommend any other treatments for now.  Even if it would have metastized into the lungs..often times people are just "observed" and many lung lessions disapear with time.  Let us know what  happens when you see the surgeon and oncologist!  Hang in there...you will be fine!!

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

I think you replied to the original post from last year.

How are you? I have been thinking of you.

Steve.

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