Not sure if I belong here

Options
azredhead
azredhead Member Posts: 2

hi, all. I'm not sure if I belong here, but I am wanting advice on a second opinion. Imaging done for kidney stones 2 years ago revealed a very small 8mm indeterminate lesion. kidney stones and related issues were addressed and I did not follow up on the lesion until recently, as my husband was diagnosed with and eventually died from a very rare cancer. So, I had recent CT, no contrast, followed my an MRI with contrast. This found the lesion unchanged in size, and the initial report again called it indeterminate. I asked for a second reading, which stated it could be renal cell carcinoma or oncocytoma but stated since it was unchanged, just watch and reimage. the actual report is quoted below. 

My question: the reading I have done so far suggests that size is not an indicator of benign vs malignant, and I am worried about the wait and see approach after my recent loss. I also worry about leaving my teens without a parent.  Has anyone here had a similar experience with a lesion/mass?

 

report:The tiny 8 mm exophytic lesion seen off the medial aspect of the lower pole left kidney shows enhancement similar to renal cortex on arterial phase, and becomes lower signal relative to adjacent enhanced cortex on delayed imaging. The size of the lesion however is quite similar to the examination from Medical Center dated 2014. It should also be noted that on an MRI of the lumbosacral spine dated 2005 the lesion is not identified, even though this area of the kidney was probably covered on that MR.

The enhancement pattern on MR suggests a solid lesion, perhaps a small renal cell carcinoma or oncocytoma. The lack of interval growth in two years, while comforting does not ensure benignity. I would agree with a six month follow-up MRI scan, which will likely not show significant interval change. At that point, yearly MRI scans should be performed considering patient''s familial history. 

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Options
    Sorry about your recent loss

    azredhead.

    Right now you have a little btty something or other that could, but probably won't turn into something bad down the road. It  isn't growing. If it is growing it is growing very slowly. Tumors under 4cm rarely spread. I have not really seen tumors from this and other boards removed before the are 1.5 cm or growing. It sounds from the report that it is too small to diagnose and getting your kidney or part of your kidey out over something so small and uncertain is a little too aggressive.The last sentance of the report sounds reasonable as even if the thing starts to grow they usually grow very slowly. Others may chime in with different experiences or thoughts. Hopefully you will not need to join our club, but if you do we will show you the  ropes.

     

     

    Icemantoo

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Options
    Additional thoughts

    azredhead.

    What type of Doctor are you seeing? If it is not a Urologist with Kidney Cancer experience (usually a Urologist trained in Laproscopic surgery) I would seek a second opinion with that type of specialist. Not sure this will change anything I wrote above, but you do want someone in your corner who knows what he is talking about and to cofirm that "watch and wait" is the way to go for now.

     

     

    Icemantoo

  • dhs1963
    dhs1963 Member Posts: 513
    edited July 2016 #4
    Options
    at 8mm, it is small

    It is not dangerous at that size, in two years it did not grow.  It is probably not cancerous, but even if it is, it is not growing, so not a threat.  Reimaging every year is the approapriate treatment, imho.

  • Bay Area Guy
    Bay Area Guy Member Posts: 618 Member
    Options
    Agree with Iceman

    When my imaging was originally done, I was diagnosed with a 15mm lesion that, at the time, was sad to be consistent with renal cell carcinoma.  I was referred to a urologist at Stanford, who said I should monitor it until it "revealed itself".  He did not want to reduce my kidney function by removing all or a part of my kidney if it wasn't necessary.  Fast forward from December, 2103 to April, 2016.  Imaging done then determined that the lesion had grown from 15 mm to 20 mm, so my urologist determined at that time that it was appropriate to treat by means of a robotic assisted laparoscopic partial nephrectomy, whic I had done on June 22.

    Back in 2013, I asked if waiting put me at any additional risk of the lesion growing out of control or spreading to other parts of my body.  The urologist told me that renal cell carcinoma is typically very, very slow growing and that monitoring such a small lesion as mine was the preferred method of treatment.

  • hardo718
    hardo718 Member Posts: 853 Member
    Options
    Welcome azredhead

    First of all, very sorry for your loss. 

    That being said, I can totally understand your anxiety with the findings on your kidney.  I would also agree with Icemantoo.  If you do seek a second opinion, make sure it's with a urologic/oncologist.  If it were me walking in your shoes, I'd get a second opinion, if nothing else for peace of mind.  But that's just how I am.  As a matter of fact, I did get a second opinion, as a lot of us around here did.

    Best wishes to you & yours.  I'll keep you in my prayers.  Keep us updated.

    Donna~

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Options
    A second additional thought

    Azredhead,

    One of  your original concerns is that something really bad may happen as a result of watch and wait and whatever it is  does in fact grow and turn malignant (so far the consensous here is no or not likely). The worst thing likely to happen is they will take all or part of your kidney out and even at 2 or 3 cm (that is a lot of growing) the full recovery rate from the surgery alone is close to 100%. And by full recovery I mean no spreading. All or nearly all of us on this board have less than 2 kidneys. One of mine was removed 14 years ago. You will be fine in any event.

     

     

    Icemantoo

  • jason.2835
    jason.2835 Member Posts: 337 Member
    edited July 2016 #8
    Options
    Wait.

    azreadhead,

    I almost never say this to anyone, but you have time.  If it has stayed at 8mm for 2 years it is "probably" one of two things; a benign tumor (oncocytoma) or an extremely slow growing and nonaggressive form of RCC.  Either way, you have time.  Most tumors that are less than 3 cm have an over 98% chance of not returning.  I would say that most surgeons would actually prefer to wait a little bit because the tumor is most likely very hard to see at this point.  I just find it hard to believe that it wouldn't have grown AT ALL in 2 years if it were cancer.  Just my non-doctor opinion.

    - Jay

  • azredhead
    azredhead Member Posts: 2
    Options
    Thank you

    i appreciate all of you taking the time to ease my concerns. I am seeing a urologist who identifies kidney cancer as one of his specialties. I thought I might be spinning myself up over something that truly is a watch and wait scenario. I wish you all continued success with your fights and will update you if the situation changes. 

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    Options
    Keep us posted...

    Hi, AZRedhead --

    So sorry to hear of your loss.  It's tough being a caregiver. I'm glad you are able to take the time to look after yourself and your own health concerns now. 

    Given the road you've traveled with your husband, of course this might-be-this-might-be-that report would start punching your buttons.  Not to mention the let's-wait part.  You've gotten great info from the folks here. 

    As for the "might be spinning myself up," it's easy to do.  When it's time to go for your next scan, do feel free to reconnect with us even BEFORE you go (that's the worst part, because right before  it just adds to the "what if"). I have a nice red spatula (AKA pancake turner) reserved for those times when I need to scrape myself down off the ceiling.  Fortunately, since taking part in this forum, I haven't had to use it so much Smile

    All the best,

    Jerzy