part solid kidney lesion found. advice needed

Bay Area Guy said:

The last US reading is a

The last US reading is a little higher, but differences in who is reading it and the technician performing it can both lead to changes in those readings.  Also, I noticed that she had different kinds of scans (US, MRI and CT).  The different modalities also can result in differente readings.  With the low iron reading, at a minimum, it sounds like she's anemic, a pretty common condition for older women.  The GFR is low, but that needs to be compared to previous readings, if they happen to be available.  If it's a sudden drop from a formerly healthy level, that would lead in one direction.  If it's more chronic, that leads in anotehr direction.

A few observations for you and your mom.

1.  It might be good to switch from a urologist to a urologic oncologist.  The added expertise in cancers makes a lot of difference.  If you're near a major teaching university hospital, see if she can get a referral there.  I was referred to Stanford University and I think it made a world of difference in my treatment.

2.  In terms of pre-emptive treatment, I am thinking that one of the reasons they want to take an active surveillance stance is her GFR already being a little on the low side.  My urologic oncologist told me he didn't want to lower my kidney function by taking a chunk of it out if he didn't need to, and I was sitting at a very healthy GFR at the time.  So having a lower than optimal GFR is probably playing into that recommendation as well.  There are non-surgical ways to treat the suspected cancer through ablation.  It's a lot less invasive and, I've read, much easier to recover from.  The negative is that it has a slightly lower success rate than surgery (which is still the gold standard).  But, back to the low iron reading, she may not be a great candidate for surgery with that iron level.

3.  This is a case where the internet is NOT your friend.  When I was diagnosed in 2013, I did as you did, and went to the internet to get as much information as possible.....and came away absolutely terrified.  But after I actually talked to the Stanford doc, I calmed down a lot and found out how important it is to look at WHEN the information was posted.  Some of it was five, ten, up to fifteen years old.  Advancements in the treatment of all cancers, kidney cancer definitely included, have made survival rates much higher.  Your mom's lesion at 11mm or so is a little smaller than mine was at 15mm when first discovered and at 17mm when it was removed 2-1/2 years later (yes, I was on active surveillance as well).  Surgery in cases such has ours has a 99+% success rate.  Ablation has success rates in the mid-90's if I recall correctly.  So try to resist the urge to check Dr. Google.  The folks here on this site are a whole lot more up to date on things in this world (and make me look like the rank amateur I am).

4.  I think you need an approach that identifies if there's an underlying cause for the low iron and low B12 levels while still monitoring the mass.   It looks like she's on a six month schedule for scans, which seems pretty standard for active surveillance.  It also means that any growth issues will be identified before it "gets away from them".

Those are my thoughts.  I'm sure you'll get some from other folks.  Best wishes for your mom and don't be shy about asking any questions.  As I said, there are some people here that have an incredible amount of knowledge on this subject and every one of the folks here is compassionate and caring.

First I should say that I’m very happy to hear that you’re doing well and are one of the many success stories.

To answer some of your specific questions:

1)Her low GFR (59) is new having been (70), (65) and (74), 6, 18, and 22 months ago respectively.

2) She is seeing one of the top urologic oncology surgeons at Mass General in Boston. However, after the initial visit we were told we could only see his PA for follow-ups. Thinking about finding another Doctor who is a little less precious, but perhaps this is standard for the field.

3) The low GFR and anemia are new so didn’t play into the active surveillance decision. I think the anemia and B12 status is probably due to her eating a vegetarian diet for the last few years. But perhaps RCC has played a role too.

thanks for the input and encouragement:) . She does have a PCP working on her anemia but his solution of iron pills for over a year hasnt improved the situation. Unfortunately the PA she saw the other day didnt have any better advice than continue with the iron. I think seeing a hematologist may be a good idea or perhaps another urologist.