Son-in-law with sRCC

Options
penitent
penitent Member Posts: 79

Hello everyone:

I thought I'd join the forum on behalf of my son-in-law who just had a total nephrectomy about two weeks ago to remove a 13 cm tumor that had taken his left kidney.  It seemed to the surgeon to be fully contained with no evidence of mets to nearby lymph nodes.

The pathology is T2b, N0, M0, grade 4, with 60% sarcomatoid features and extensive necrosis.

He has met with the urologist/surgeon since the removal, but won't see the oncologist until next week.  They haven't done any further scans yet to look for distant mets.   The statistics on this rare and aggressive RCC are pretty depressing.  He is only 40 years old and has two babies...23 months and 6 months...so it's important that they have their daddy and my daughter her husband.

Does anyone in this forum have experience with this type of RCC?  

Penitent

«13

Comments

  • hardo718
    hardo718 Member Posts: 853 Member
    Options
    Welcome

    Although I don't have experience with this particular finding, I want to welcome you and let you know that I will be praying for your family.   I'm sure you will soon hear from others on this forum that can be of more help with details.

    It's never easy to get this kind of news, but the good news is this isn't the death sentence that it once was.  You will soon hear that over and over again from others on this site as well.

    Best wishes to you & yours,

    Donna~

  • donna_lee
    donna_lee Member Posts: 1,042 Member
    Options
    A crystal ball isn't part of life!

    Sorry to hear about your s-i-l, and by reading your screen name, you appear to have shouldered the job of worrying about him.  Because it's our child, we get stressed...their youth, the fact they have kids, the fear they won't be here to watch them grow up, etc. etc.

    My tumor was large, 12.5x11.5x8 cm; T2N1M1.  They knew it was in my liver before the surgery, and removed the left lobe in 2006.  There were lots of cysts in the right lobe, and they removed and did biopsies while I was on the table.  A set of nodes were removed with 2/11 positive for Clear Cell RCC.  They sent me home saying they got it all.  That is, all they could observe at the time.  I had single node lymphadenectomies (1 node at a time) in both 2007 and 2008.

    Ten years since the original surgery, and 7 years NED; "No Evidence of Disease"  Lots of tests, a few bumps in the road and a few scary moments.  But I made up my mind to not live in fear of "what could be."  Otherwise, you just exist from one moment to the next without even enjoying what moment you are in at the time.

    Hug your son and the grands.  Go chop weeds to get out the frustration.  Or go for a walk till you tire.  Find an outlet that works.  But don't blame yourself. 

    Come back and post.  We are here to listen.

    Hugs,  donna_lee

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    Options
    Be careful

    Be careful what you read, most is outdated, some is insane, none is keeping up with modern reesearch, which is continuing apace and turning cancer from a death sentence to a chronic disease. I am in my fourth year after the discovery of a 10cm tumour with aggressive tendencies. I'm on a immunotherapy that was only approved this year seems to **** the cancer and has no side effects of note.

    At this moment your worst enemy is your imagination. Dont worry, its never as bad as your imagination. Its no walk in the park, but it is doable and never as bad as you think.

  • foroughsh
    foroughsh Member Posts: 779 Member
    edited June 2016 #5
    Options
    23 months ago, at the age of

    23 months ago, at the age of 36, they gave me almost same news, mine was 10 cm, T2b, n0,m0. NED since surgery. Stay positive, I know it's easier said than done, but I'm also sure time helps and heals as it did for all of us.

    Forough

  • hardo718
    hardo718 Member Posts: 853 Member
    edited June 2016 #6
    Options
    Don't buy green bananas??

    I'm confused.

    Donna~

  • hardo718
    hardo718 Member Posts: 853 Member
    Options
    Ah, I see

    Don't write him off yet.  There's so much progress that's been made in dealing with this disease, and more on the horizon.   Your SIL will need as much positive support as he can get.  I know it's hard not to jump to conclusions, but truly there is life after such a diagnosis.

    God Bless,

    Donna~

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    edited June 2016 #8
    Options
    Kidney Cancer

    Sorry to hear about your son-in-law.  Seven years ago my son at age 41 was diagnosed with kidney cancer.  He had his left kidney removed and there was no spread, it was RCC and no further treatment.  He has his annual check ups and has been clear until last year when a cyst was discovered on his remaining kidney.  It is something they have been watching but after his latest CT it showed no growth but did show something on the lining of his sciatric nerve and now he is waiting for approval for an MRI.  But apparently his doctor told him nothing to worry about and to go on vacation as planned and they would get the approval and schedule the MRI when he returns.  For me I would have canceled my vacation and got the MRI asap since his father passed  last year from cancer.   His doctor said it was a rare spot for cancer but after researching it, if cancer could be bad and a spread of the RCC. 

    Wishing you and your family peace and comfort.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    edited June 2016 #9
    Options
    Dont do online searches

    They are either out of date or crazy. Listen to the doctors, or if I may be so bold, the voice of experience you'll find here or Smart Patients.

  • dhs1963
    dhs1963 Member Posts: 513
    edited June 2016 #10
    Options
    I wish I had seen this sooner

    I have not spent much time on here lately.  I has sRCC.  4 years ago, my 6 cm primary tumor was removed; path report showed about 40% sarcomitoid.  In the six month scan, a met was found it my lung (it may be been there earlier, but not seen on the chest x-ray; it showed up on a lung CT).  Note my urologist argued with me about the lung CT -- he thought a X-ray was sufficent.  But, another doctor ordered the CT.  

    The metastisis (solitary) was removed.  It had the same pathology as the primary tumor.  I was given a dreadful prognosis.  But, I remain alive, 3 1/2 years later, with no evidence of disease.

    At minimum, he needs to be followed by someone who understands sRCC.  It is more agressive; he needs a lung CT; brain MRI is justifiable.  I go to a medical oncologist -- I figure if it comes back, I will need someone good.

  • penitent
    penitent Member Posts: 79
    Options
    Thanks for the quick replies!

    It's really great to get such positive reinforcement from all of you.

    Forough....was yours sarcomatoid?  Being NED after only surgery is a great blessing! Did they recommend chemo after that?   I know that we shouldn't read so much, but so many of the studies indicate that with more than 50% sarcomatoid features that there is an 80% chance of distant mets within a year. 

  • penitent
    penitent Member Posts: 79
    Options
    hardo718 said:

    Don't buy green bananas??

    I'm confused.

    Donna~

    Thanks for your great comments.

    My SIL is meeting with the oncologist on July 5 for the first review of his case.  Will know more then.

  • penitent
    penitent Member Posts: 79
    Options
    Had a top to bottom scan yesterday

    My SIL and daughter are meeting with the oncologist this morning to get the results of the multiple scans from yesterday.  Praying for NED~

  • Allochka
    Allochka Member Posts: 1,063 Member
    Options
    Hello and welcome!

    Hello and welcome!

    I fully understand how your daughter and you feel - I was pregnant when my husband was diagnosed, so I know the feeling "baby needs a father"! I gope scans were NED. Please update us. 

    And as other members' experience shows, even higher stages are far from death sentence nowadays!

  • hardo718
    hardo718 Member Posts: 853 Member
    Options
    Best wishes

    And prayers for all of you,

    Donna~

  • penitent
    penitent Member Posts: 79
    edited July 2016 #16
    Options
    Scan results

    Good news is there are no apparent distant mets in bone, brain, lungs, etc.    Not so good news are several  enlarged and inflamed lymph nodes in the kidney bed (of the one removed).  They're deciding whether to biopsy or radiate.  Most likely going to biopsy and then if cancerous then remove them.

    Decision should come soon as to proceeding.  The issue with this darn sarcomatoid diff sRCC is its statistical aggressiveness in short order.

    Penitent

  • dhs1963
    dhs1963 Member Posts: 513
    Options
    penitent said:

    Scan results

    Good news is there are no apparent distant mets in bone, brain, lungs, etc.    Not so good news are several  enlarged and inflamed lymph nodes in the kidney bed (of the one removed).  They're deciding whether to biopsy or radiate.  Most likely going to biopsy and then if cancerous then remove them.

    Decision should come soon as to proceeding.  The issue with this darn sarcomatoid diff sRCC is its statistical aggressiveness in short order.

    Penitent

    Of course there are enlarged lymph nodes...

    The body is healing.  

  • penitent
    penitent Member Posts: 79
    edited July 2016 #18
    Options
    Body is healing

    We certainly pray that healing is at the root of the enlargements.  The surgeon said they were around 1cm at the time of the neph but the oncologist says now they are substantially larger per the scan.  The worst part of all of this is the uncertainty and waiting.

    As G.K. Chesterson said "the worst thing about hurry is that it takes so long".

     

  • hardo718
    hardo718 Member Posts: 853 Member
    Options
    Hopefully

    It's only part of the healing process his body is going through.

    Keep the faith.

    Donna~

  • Allochka
    Allochka Member Posts: 1,063 Member
    Options
    Thanks for the update. Yes,

    Thanks for the update. Yes, quite possibly that lymphnodes are doing what they supposed to do - fighting off the possible infections after surgery

  • penitent
    penitent Member Posts: 79
    Options
    Biopsy tomorrow

    My SIL is having a biopsy tomorrow of two lymph nodes in the kidney bed that have grown fairly large in a short period of time.  At the time of the neph the larger one was around 1 cm and now, I understand, 3cm+.

    Please keep John in your prayers that these are simply nodes on steroids fighting off the bad guys.  They'll get the report next Monday and then deal with future options then.

    Penitent