Husband Diagnosis of pT3a with Sarcomatoid components - need help

rebapicc
rebapicc Member Posts: 8
edited December 2014 in Kidney Cancer #1

My husband was diagnosed with Kidney Cancer on December 10, 2014 at the age of 39.  He is not a smoker and has no family history.  His cancer was found after a CT scan that was looking for kidney stones.  The mass was 10cm.  The urologist performed a radical nephrectomy and said everything looked good with clear margins.  There were no positive lymph nodes.  Along with the CT scan that was done in the ER, they also did an MRI and a chest x-ray.  Chest x-ray was clear.  When he went back to the surgeon on Monday, the news was that the tumor was given a pT3a and had sarcomatoid components.  The urologist has now refered us to an oncologist.

What does this all mean?

What questions do I need to be prepared to ask the oncologist?

What do I need to ask for?

Emotions are running high I need to know what to do next.

Comments

  • jason.2835
    jason.2835 Member Posts: 337 Member
    #2
    Ask lots of questions

    I preface this by saying that I am no expert, but I have read a lot about tumor classification online.  It's like me saying, "I'm no doctor, but I did stay at a Holiday Inn last night..."  The same is true of most of us on here.  Although we have read and absorbed a lot of information we are, by NO MEANS, experts.

    That being said, obviously the main question for the oncologist is going to be what he/she recommends for further treatment (if necessary).  With RCC, taking out the primary tumor is the first and main treatment.  After that, it will all be dependent upon what further testing says.  Sarcomatoid features usually are the sign of a more aggressive tumor so I am sure that the first order of business will be more testing to ensure that the tumor hasn't spread.  Bone scan, blood tests, more CTs or MRIs, X-rays...

    It's generally good news that the margins are negative and that the lymph nodes were clear.  It is good news that nothing showed up on any of the imaging tests.  pT3a means that the tumor was above 7 cm and it has invaded some surrounding tissue, such as the veins going in or out of the kidney or the Gerota's Fascia (a layer of fat surrounding the kidney).  If nothing is showing up on imaging tests that means one of two things 1) IT HASN'T SPREAD, or 2) the metastases are so small that they aren't showing up on imaging tests.  The only other place to check would be the bones with their own scan.  

    Try to stay positive.  It sounds like there is a lot of good news to hang your hats on right now.  The oncologist will monitor the situation and ensure that anything that comes up in the future will be dealt with early and quickly to minimize damage (if any).  Although a lot of these terms sound scary, remember it is 2014 (almost 2015!) and there are a lot of treatments available if he should need them.    

  • angec
    angec Member Posts: 924 Member
    #3
    Sorry to hear about your

    Sorry to hear about your husband.  Glad that the surgery is over and the margins were clear. Be sure to get a copy of all scan reports, test reports and blood tests from here on in.  Make yourself a big folder. The best thing is for them to do a whole body ct/petscan, ask for it.  What furman grade did they give him?   It is good that they didn't find any nodes or mets anywhere.  Stay positive. Just be sure to get 3 month scans of the whole body.  I don't think they will give him any treatment, other than surgery, unless something else pops up.  There are many good treatments available out there that were not available just a few short years ago.  But hopefully he won't need anything further.  Another good sight to join is smartpatients.com.  Enjoy the week and sending hugs!

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #4
    angec said:

    Sorry to hear about your

    Sorry to hear about your husband.  Glad that the surgery is over and the margins were clear. Be sure to get a copy of all scan reports, test reports and blood tests from here on in.  Make yourself a big folder. The best thing is for them to do a whole body ct/petscan, ask for it.  What furman grade did they give him?   It is good that they didn't find any nodes or mets anywhere.  Stay positive. Just be sure to get 3 month scans of the whole body.  I don't think they will give him any treatment, other than surgery, unless something else pops up.  There are many good treatments available out there that were not available just a few short years ago.  But hopefully he won't need anything further.  Another good sight to join is smartpatients.com.  Enjoy the week and sending hugs!

    Try and stay positive

    rab,

    The responses so far are right on. At 10 cm they are going to watch you like a hawk and any blimps on the radar can hopefully be nipped in the bud. The pre surgery chest x-ray shows only nodes 8mm or larger. Ggenerally those smaller are for the most part harmless. In the follow up they will no doubt do a Chest CT which has the advantage of showing smaller nodes and the disadvantage of showing nodes too small to be of a concern. I just do not want you to be freaked out by the presense of nodes too small to show up on a chest x-ray There are many on this board doing fine after starting with similar tumors to your 10 c.

     

    Icemantoo

  • Phredswife
    Phredswife Member Posts: 162
    #5
    Sending hugs

    Sorry about your husbands diagnosis. Its great they removed it so quick and glad it looks like there were clear margins.

    My hubby was diagnosed with RCC last Christmas and we waited 2 months for it to be removed.  It was a 13cm tumour that also was extending into his adrenal gland. The histology came back with rcc with extensive sarcomatoid change and rhabdoid morphology. I soon freaked myself out reading too much old info. Anyway Greg is still here despite scaring us all silly. He has had no treatment since, just regular scans. Hope that encourages you. Keep calm between scans. You will get way more monitering now they know his histology but that means more scanxiety!

    There is a group of others with the same histology on Smartpatients who know a lot about the latest treatments available if the nasty thing ever returns. Sending hugs I know how much this sux at Christmas! Thinking of you

    SmileHugs Melissa.

  • rebapicc
    rebapicc Member Posts: 8
    #6
    Thank you!

    Thank you all for your words of encouragement.  I did freak myself out and read too much on the internet.  There is so much negative information out there!  I am finding this group to be quite helpful and very encouraged by those who are so positive!  I will keep everyone posted on our journey as no one else in my family has any history of this type of cancer and this is all new to me.

    The oncologist is reviewing his case and will call us when he is ready to make a plan.  My husband goes back to have his staples removed from surgery on Friday.

     

  • NanoSecond
    NanoSecond Member Posts: 653
    #7
    Advice

    You have gotten lots of good advice here.  However, whenever a pathology report mentions any hint of sarcomatoid component it calls (in my mind) for extra vigilance.  Sarcomatoid means that the tumors are or can easy become aggressive and so may require an additional level of RCC expertise from your oncologist to stay ahead of it.

    My two pieces of advice.  This first one already mentioned here:

    1. Register at: www.SmartPatients.com  This site is free. You can get direct access to unvarnished facts from other sarcomatoid patients and/or their care-givers there.

    2. Find an oncologist who is an expert on RCC. This generally means finding an oncologist who only treats RCC patients.  Such an expert can still work closely with your local oncologist (if there considerable distance involved to seeing them) but you really need to have access to one on your team.

    Just my 2 cents.

     

    PS  My primary tumor was chromophobe (11cm). I was NED for 2 years after a left nephrectomy in May 2010. But in July 2012 I developed bone mets (biopsy still showed them to be chromphobe).  One year ago I developed mets in my liver and in various lymph nodes.  These were extremely aggressive and likely would reveal a sarcomatoid component if biopsied today.

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