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

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Comments

  • todd121
    todd121 Member Posts: 1,448 Member

    Spindle Cell Sarcoma

    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!

    Welcome

    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
    PonyWave Member Posts: 33
    I'm new to this board and

    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
    AMAYEU Member Posts: 8
    PonyWave said:

    I'm new to this board and

    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!

    Crazy, Darron! We have the

    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
    Srashedb Member Posts: 482 Member
    AMAYEU said:

    Crazy, Darron! We have the

    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.

     

    Question

    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
    Srashedb Member Posts: 482 Member
    AMAYEU said:

    Crazy, Darron! We have the

    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.

     

    Part 2

     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
    AMAYEU Member Posts: 8
    Srashedb said:

    Part 2

     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

    Hi Sarah,
    Dr Won Kim is my

    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
    Footstomper Member Posts: 1,237 Member
    AMAYEU said:

    Hi Sarah,
    Dr Won Kim is my

    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 

    Sutent

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

  • Srashedb
    Srashedb Member Posts: 482 Member
    AMAYEU said:

    Hi Sarah,
    Dr Won Kim is my

    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 

    Dr. Meng

     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
    AMAYEU Member Posts: 8
    Srashedb said:

    Dr. Meng

     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.

     

    I hear great things from both

    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. 

  • canadiancruiser
    canadiancruiser Member Posts: 14
    todd121 said:

    Welcome

    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

    same as you

    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
    canadiancruiser Member Posts: 14
    todd121 said:

    Welcome

    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

    confirmed

    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..

     

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    AMAYEU said:

    Wow, Todd121 pretty much

    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

     

    IL2

    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

  • btchida
    btchida Member Posts: 1
    I am a 35 year survivor of

    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
    Johnol Member Posts: 1
    Hi Mike

    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
    James62 Member Posts: 4
    scared

    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
    Steve.Adam Member Posts: 463 Member
    It gets much better

    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
    foroughsh Member Posts: 779 Member
    edited June 2017 #38
    James,

    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
    beemurguia Member Posts: 57
    Mike, I am so sorry to hear

    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
    Steve.Adam Member Posts: 463 Member
    edited June 2017 #40
    Hi Bee

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

    How are you? I have been thinking of you.

    Steve.