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Son-in-law with sRCC

penitent
Posts: 79
Joined: Jun 2016

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

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

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's picture
donna_lee
Posts: 900
Joined: Feb 2009

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's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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 retard 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.

Kangaroorex
Posts: 45
Joined: Jul 2016

The worst and scariest moment of my life is whe I was initially diagnosed and started reading the "official" survival rates.  Reading behind the scenes shows most of this data to include numbers from 30-40 years ago, which just doesn't provide a real indication of survival with all the recent changes in the field.

To top it off it seems like every day there are new treatments entering development which offer high success coupled with low side effects.  Stay positive and keep your eyes open for new treatments and good doctors!

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

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

penitent
Posts: 79
Joined: Jun 2016

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. 

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

I'm confused.

Donna~

penitent
Posts: 79
Joined: Jun 2016

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

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

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
Posts: 770
Joined: Apr 2012

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's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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's picture
dhs1963
Posts: 510
Joined: May 2012

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
Posts: 79
Joined: Jun 2016

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's picture
Allochka
Posts: 871
Joined: Nov 2014

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's picture
hardo718
Posts: 853
Joined: Jan 2016

And prayers for all of you,

Donna~

penitent
Posts: 79
Joined: Jun 2016

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's picture
dhs1963
Posts: 510
Joined: May 2012

The body is healing.  

penitent
Posts: 79
Joined: Jun 2016

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's picture
hardo718
Posts: 853
Joined: Jan 2016

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

Keep the faith.

Donna~

Allochka's picture
Allochka
Posts: 871
Joined: Nov 2014

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

penitent
Posts: 79
Joined: Jun 2016

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

stub1969's picture
stub1969
Posts: 797
Joined: Jul 2016

I'll include him in my prayers.

Stub

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

I'll be praying for John.

Donna~

penitent
Posts: 79
Joined: Jun 2016

John went to the oncologist yesterday to get the results of the biopsy and heard that both enlarged lymph nodes in the kidney bed were positive for RCC.  So with that regional 'met' his diagnosis has been bumped from Stage III to Stage IV (grade 4).  They're meeting with another surgeon on Thursday to discuss -- and likely schedule surgery to pull those bad boys out and come up with a treatment plan.  There isn't a whole lot of research into sarcomatoid RCC and no specialized chemo for sRCC that I'm aware of, so I think they'll likely treat it as regular clear cell.  

Thank you for your continued prayers.

Penitent

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

Ive been StageIV, grade 4 since May 2013. I'll keep both of you in my thoughts.

penitent
Posts: 79
Joined: Jun 2016

John is scheduled for surgery to remove the lymph nodes in about 5 weeks, but in the meantime the oncologist is starting him on Votrient to see what impact a 4 week regimen will make.  They'll do another scan at that time to see whether to continue on to the surgery depending on growth or shrinkage of the nodes.  If they go back in to 'scoop out' the kidney bed they'll probably follow up with a regimen of Opdivo.  At least, that's the plan right now.    But it's GOOD to HAVE a plan!

I really hope the Votrient side effects won't be too bad on him.  Doesn't sound like fun.

penitent
Posts: 79
Joined: Jun 2016

Votrient is not treating John too kindly.  His voice is very hoarse which apparently is a side effect from it combining with the Lisinopril that he takes for high blood pressure.  Also the dry skin is troublesome, especially around the eyes and mouth.  He's using Bag Balm to help protect and moisturize.

He's only into his second week, so I'm sure there's more to come.  I have natural white hair through age...so we'll be twins when his hair turns white as I've been told it will.

 

Rob57's picture
Rob57
Posts: 25
Joined: Aug 2016

I also take Vortient and I take a different medication for high blood pressure, Benazipril. Your son in law might want to ask his doctor about switching. The combination may be affecting the Votrient. Also make sure that he takes the votrient at least one hour before and at least two hours after eating. I find that if I take my normal medications in the moring and eat a light breakfast around 7 am and then take the votrient at about 10 am the effects are not quite so bad. I wish him good luck and hope that the treatments work.

rhominator's picture
rhominator
Posts: 232
Joined: Nov 2015

Like Rob57 I'm taking the Benazipril and Votrient combo - for 2 1/2 years now. We did a bit of experimentation to find the best time. I take first thing in the AM and eat later.

penitent
Posts: 79
Joined: Jun 2016

Rob:

I'll pass on your comments and have him address the Lisinopril issues.

Allochka's picture
Allochka
Posts: 871
Joined: Nov 2014

I somehow missed your updates... Very sorry to hear he is Stage 4.

But he is young man and have lots of things to live for. He will fight it and your grandchildren will have their father for a long time to come.

 

penitent
Posts: 79
Joined: Jun 2016

Thank you for your kind comments.  Yes, John does have much to live for!  He's been on Votrient for 2-3 weeks now and it is making him quite weak, very hoarse and has some very sore spots.  We continue to pray that the next set of scans will show good results.

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

They sound a bit much. I think you should contact your oncologist soon. These quality of life issues are important. There are many other drugs that perform as well as Votrient and perhaps have less appalling side effects.

It is a case of trying different medications that are effective with less debilitating side effects.

Good luck

penitent
Posts: 79
Joined: Jun 2016

Good news/bad news...

Good news is no 2nd surgery for now to remove the cancerous lymph nodes in the renal bed.  Not so good news is that those nodes have grown, slightly, but the mets have moved definitely to the right lung, with a new nodule there and evidence of possible pleural carcinomatosis, which as you probably know is the diffusion of tumor into the pleural space in the lung lining.

He's starting on Optivo on Monday and we'll have to see how he responds to that.  Please keep up your prayers.

BTW, take a look at   www.lifechronicles.org   It's based in Santa Barbara, CA and their mission is to create memories, via DVD interviews, story telling, etc. for primarily advanced cancer patients (although they also do alzheimer patients and patients with other potentially life threatening diseases.  Kate Carter of Life Chronicles visited us in Oregon this past weekend to film John, my daughter Elizabeth and their two children.  It can be a great gift.  Just sayin'....

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

....for sharing all the updated info on John and I will sure keep him in my prayers.  Thank you also for sharing the info on Life Chronicles.  Wish I heard or thought of that sooner while my mom was still verbal (she has alzheimers).

Have a blessed day,

Donna~

Allochka's picture
Allochka
Posts: 871
Joined: Nov 2014

Very sorry to hear... But he is still fighting, so nothing is completely lost.

How is your daughter ? Stupid question, I know, given the circumstances. I wish her to get all the strength and support she needs.

penitent
Posts: 79
Joined: Jun 2016

My daughter is an RN, so she has that strong nurse aura on the outside but I know the stress and worry is getting to her.  As we all know...it's hard and I wouldn't wish this 'club' on anyone.

 

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

Hi penitent. I'm coming in reading after being away for a couple of months and just caught up with your son-in-law's story. Really sorry to hear he's had to join our ranks.

I'm sending good thoughts through the Ether. I hope they help.

You don't talk much about the specialist(s) he's seeing. Is he seeing a specialist in RCC? With his cancer type and condition, he absolutely should be seeing a medical oncologist that is up-to-date on the latest research in RCC. I hope one is available near you. I've been lucky living in the Los Angeles area there are multiple top RCC specialists to get opinions from. They don't always agree, by the way, but it sure helps me to feel good about my choices when they do. When I was first diagnosed, I saw a general oncologist without RCC experience and frankly his opinion was just not right. I pushed on and saw 2 more (both RCC experts) and got much better information. To be fair to him, it probably wouldn't have changed my outcome, I'm still happy I pushed on until I found specialists that do research in this disease and keep up with the absolute cutting edge. The field is rapidly changing.

Best to you and to him and the family,

Todd

Allochka's picture
Allochka
Posts: 871
Joined: Nov 2014

It is very hard. But I'm sure she is happy to have her mom on her side, I'm sure she feels your love and it gives her strength to support husband fully. Damn disease, I can think about it pretty calmly when speaking about our family's brush with it, but I hate it when hear stories like this.

please continue to inspire your son in law to keep fighting!

penitent
Posts: 79
Joined: Jun 2016

John's first infusion of Opdivo is this afternoon.  His oncologist will be attending the first couple of treatments as there is always concern about initial reaction to the meds.  I pray that it will do what it's supposed to do.

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

I hope he has as few side effects as I have. I get my bloodwork checked every time I have an infusion of Nivo.

penitent
Posts: 79
Joined: Jun 2016

John had his 4th infusion of Opdivo on Saturday along with a new set of CT scans.  He and my daughter are meeting with the onc this afternoon to get the results of the scan.  Total scanxiety all around.

Praying for good news as the last scan showed progression to the lungs and pleural lining.

penitent
Posts: 79
Joined: Jun 2016

John is responding well to Opdivo so far.  The existing kidney bed nodes have shrunken by 40%, the pleural lining of the lungs seems to be clear and although the lung nodules are still there are no new mets to be found.  

He is to continue on infusions every two weeks as usual and next scans in 8 weeks.

daisybud's picture
daisybud
Posts: 461
Joined: Jan 2016

Great news. ;)

Allochka's picture
Allochka
Posts: 871
Joined: Nov 2014

Excellent! You see,  too early to give up!

penitent
Posts: 79
Joined: Jun 2016

On 12/23 he had a new set of CT scans and then met with his ONC on Christmas Eve.  After six or so infusions of Opdivo the news wasn't what we had hoped for.  There are new lymph node mets in the paratracheal area and in the mid-chest near the aorta.  Apparently this is a fairly common met site for RCC.  Also the lung mets are still there but I'm not sure whether they were larger or not in size or number.

So Opdivo is off the table as well...and the oncology team is looking at genetic matching for possible trials for 'plan C'.  Everything is kind of up in the air right now until the tests come back.  Not the Christmas present they were looking for.

Penitent

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