8 replies to this topic

[Taylor]

I have a very good onc for a non-CML specialist.  He always knows what tests to do and when, what he should be monitoring, etc.  I had an appointment yesterday and he wants me to have a CT scan done to make sure my spleen wasn't damaged and everything is in order after diagnosis (I was pretty enlarged when I was diagnosed, but no pain).  Anyway, it's been a bit over a year since dx and I haven't had any problems.  I recall the spleen shrinking pretty quickly once leukopheresis began.  Has anyone else been requested to get a CT scan later like this?  Just curious.  Thanks!

[Marnie]

Nope. . .my onc always did a physical check of the spleen.  My new onc doesn't check at all. 

[hannibellemo]

I would want to ask your doc why he thinks the spleen may be damaged? My spleen actually infarced before dx and my oncologists, both local and at Mayo, were perfectly satisfied when my spleen became non-palbable.

Seems like an unnecessary test to me.

Pat

[Lizzybee]

I had to have an upper abdominal ultrasound because I was having pain in that region, so they checked my spleen while they were there.  But otherwise, I wouldn't have an ultrasound or CT scan to check my spleen.  Mine was pretty large when I diagnosed, but it was normal size by 3 months of treatment.

[Susan61]

Hi Taylor:  Personally I would refuse the CT Scan.  We do not need all this radiation.  They are finding all these MRI's and CT Scans are causing more trouble than necessary.  If you spleen shrunk after treatment like many others, then why would you go through something to look for damage.

I have seen many Oncologists in all my years of having CML, some really good specialists when they were thinking of doing a BMT on me.  Not one ever suggested a CT Scan.

The biggest thing you just said is that he is not A CML Specialist to begin with.  He could be a excellent Oncologist, but that does not mean he is up on everything with CML. 

You have every right to refuse testing that you do not want.

Susan

[Trey]

What would the doc do if he saw anything?  Cut the spleen out?  The spleen is a resilient organ and can take the abuse.  Just not necessary to get any extra radiation. 

[Tedsey]

This sounds fishy to me.  I had a very enlarged spleen.  My onc just palps it at my well visits.  Like Trey said, what would he do if he saw anything?  When I saw CT, the first thing I thought was radiation.  We CMLer sure don't need more of that.  I love it when I think along the same lines as Trey (means I must have learned something).  The onc palpating your spleen at your well visits should be more than enough.  Makes me wonder if he is looking for a way to make more $$$$ requesting an unnecessary procedure.  Hope not!

Teds

[pamsouth]

Tedsey I am with you.  I always say do your home work, get your facts, educated.  Anytime those red flags go up it is time to start asking the question and thinking about it.  It is hard to undo some things, that we might regret later.

PamSouth