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Newly diagnosed Stage IV

rhabdoid2018
Posts: 2
Joined: Jan 2020

My husband had an emergency Nephrectomy in 2018 to remove a 22 cm tumor along with his right kidney and adrenal glands. The pathology report showed the tumor had rhabdoid and sarcomatoid qualities, which meant it was aggressive. There was a positve margin on the vena cava. After his surgery, he's been having abdominal and chest CT Scans and MRIs every 3 months. From the beginning they've been watching 3 (now 4) nodules in the upper lobe of the right lung. In December, they performed a VAT biopsy of the largest nodule. It was just at 1 cm. The pathology report says: 

  • metastatic renal cell carcinoma with focal rhabdoid features
  • visceral pleural invasion is present
  • angiolymphatic invasion is present
  • etc.

Oncology gave 3 options:

  1. Nivo + yervoy
  2. Cabo
  3. take part in a trial comparing nivo + NKTR-214 and Cabo (I think. Still reading the details, and he may not qualify.) 

We are at a regional center of excellence for cancer treatment and have so far been pleased with the level of care. However, before we embark on any treatment, we wanted to get some advice from those who've been there. Which of these options would you choose? Should we get a second opinion? Where would you recommend we go for that second opinion? (Eastern U.S. is preferred.)

Thanks for any and all advice. If someone can explain what some of the terms in the pathology report mean in English, that would be helpful too. 

MarkDavid18's picture
MarkDavid18
Posts: 60
Joined: May 2018

First I want to say how sorry I am for you and your husband. I know how devastated I felt when I was told I progressed to stage IV. I pray for strength as you embark on this journey. The good thing is there are options ... new treatments have been introduced and there are more coming.  

My cancer pathology was similar - unclassified grade 4 with sarcomatoid and rhabdoid features as well as necrosis. I started with Ipi/Nivo (Yervoy/Opdivo) and had a pretty good response initially but one stubborn tumor in my right lung kept growing so I moved to Cabo. So far Cabo has been working - all tumors have decreased in size and nothing new. The SEs of Cabo are a lot harder than Ipi/Nivo but manageable.

My doctor is the head of GU oncology at Mayo Clinic. I recently asked him if he would have started with Ipi/Nivo if I was diagnosed today and he said he would probably start me on a combo of a targeted therapy (Cabo) and immunotherapy (nivo) as that has had significant success with similar types of cancer. That combo was not available when I was diagnosed in June of 2018.  I think your medical team has a pretty good plan but seeking another opinion is always an option. For me the tumors were growing so quickly that I needed to start systemic treatment if I had any chance to live.

I highly recommend checking out Smartpatients.com - it is a great community of survivors and Care givers and has a wealth of first hand knowledge based on experience. 

Best of luck to you both. 

rhabdoid2018
Posts: 2
Joined: Jan 2020

Thank you so much for your reply. I appreciate the time you took to answer me. Your response contains a lot of useful information. Each time I read it, I see something else that helps. You defintely understand how we are feeling - devastated is the only word. I'm also a bit overwhelmed.

It does sound like my husband's cancer is somewhat similar to yours. I'm afraid we may also be in a situation where we don't have too much time to spend seeking out second opinions as this is an aggressive cancer. It puts my mind at ease knowing that the options we are being presented with make sense. My husband is going in for some additional scans to see where else the cancer might have spread and also to find out if he qualifies for the trial his oncologist recommends. Thanks for telling me about Smartpatients.com. It looks like it will be a big help as we proceed. 

I hope the Cabo continues to work for you and that the SEs continue to be manageable. 

Manufred's picture
Manufred
Posts: 241
Joined: May 2017

My RCC history is also similar.  I enrolled in an Ipi/Nivo trial in July 2015 and am now in total remission (have been for more than 2 years).  Read my profile.  

For me the SE's from immunotherapy were quite mild and did not interfere with normal life.

Combination treatments look to be the current way of thinking.

Either way, you both have good reason to be confident of staying on top of this.  

Best Wishes,  Fred

kimmer4life's picture
kimmer4life
Posts: 3
Joined: Feb 2020

18 months post radical Left Nephrectomy clear cell carcinoma

This morning i reviewed my ct scan results.  CT of chest reveals 2 pulmonary nodules that were not present on previous scan  They are not small.  one is 1.5cm and the other is 2 cm.  The abdominal CT revealed increasing Upper adbominal and retroperitoneal lymph nodes with definite gastrohepatic ligament adenopathy, non specific metastasis and reactive nodes also states probable new right lower lobe pulmonary metastasis. 

All previous scans were normal post nephrectomy

I dont see my doctor until next Tuesday.

I am a nurse. and I am terrified.  I could use some successful treatment stories

sandy23
Posts: 143
Joined: Jan 2017

If I am understanding this, the scans show enlarged lymph nodes.  As a nurse, you know that this doesn't automatically mean anything.  With the abdominal scan, you mentioned increasing nodes, were those there in previous scans?

kimmer4life's picture
kimmer4life
Posts: 3
Joined: Feb 2020

Combined with new lung nodules the lymph nodes are concerning.  Alone I would agree that doesn't automatically mean anything.  The nodes were large initially but still in the normal range.  Now they are outside the normal limits.  I have been referred to an Oncologist.  Brain Scan Friday, PET Scan next Tuesday and follow up with Oncologist Thursday.  

 

eug91's picture
eug91
Posts: 202
Joined: Jan 2019

I'm so sorry you had to join us under such circumstances. 

As for successful treatment stories, search this forum and you will find a bunch of them - some who've had long lives with treatment, some who've had complete response (remission). You have reasons to be optimistic. I know it's hard, but try not to be scared. Give yourself some time to get over the shock of this news, let yourself be sad, and maybe treat yourself to something nice this weekend.

But then come Tuesday be ready to see your doctor, be ready to ask questions and take notes, and get ready to battle. You already beat this thing once. No reason you can't do it again. 

We're with you - you've got this! 

Oh, also, if you haven't already, consider signing up at smartpatients.com - it's another great active forum. Depending on what your doctor tells you about your plan to deal with the lung nodules, you'll get great advice there, too. 

kimmer4life's picture
kimmer4life
Posts: 3
Joined: Feb 2020

Thanks for the encouragement.  I've been mostly positive, but as I start researching therpies and treatments, and read the prognosis, it gets really scary!   I want to be informed about my treatment options, but at the same time its really discouraging.  

spiny_norman's picture
spiny_norman
Posts: 3
Joined: Dec 2019

First of all - IGNORE THE PROGNOSOS STUFF YOU SEE ONLINE.  The current published stuff is hopelessly out of date, as RCC is one of the cancers that has been most affected by the immunotherapy revolution.  Yes, this stuff still kills a lot of people, but now there are also a lot of people that it doesn't kill.  And the runway is a lot longer, if you know what I mean.  My oncologist has declined to discuss a prognosis for me, but has simply told me that Stage 4 RCC is "incurable but manageable".   He also told me that a few years ago there would only be a couple of things he could try on me.  Today, there are so many choices that it's almost too confusing for the doctors to pick one to start with.  

I was diagnosed in October, started a treatment in November/December.  Had my first post-treatment scan two weeks ago today and the results were technically mixed.  My two largest tumors were substantially beaten up by the therapy, called mixed because I had a couple of new ones pop up.  But the two large tumors had shrunk by 40% and 70%, respectively, and one of thme now has a necrotic spot in the middle of it.   Not uncommon to have a little new stuff show up when starting a treatment, expect the next scan to be all good.  

I also agree with eug in recommending you also check out smart patients.  The kidney cancer group there is substantially made up of Stage 4s, a lot of whom have survived with their disease for yeeeeeaaaaarrrrrrs.     

donna_lee's picture
donna_lee
Posts: 931
Joined: Feb 2009

22cm; or was that supposed to be 22 mm.    22cm is 8.a5 inches; whereas 22mm is  about 3/4 inch.  Either way, cancer is not good.  I can only give encouragement, as mine was large, aggresive and stage 4 when it was Dx'd.  And was never offered any drugs for control, shrinkage, etc. 

More info when you click on my user name.

Hugs,

donna_lee

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