Refusing a bone marrow biopsy

Has anyone been diagnosed with ITP, but skipped a bone marrow aspiration/biopsy?

Last fall, my 16 year old son had a baseline CBC test prior to beginning a course of Isotretenoin (Accutane) for acne. His platelet count was the only abnormal finding. I think it was in the 80s…

We took him to a hematologist who ran blood tests at his office and said, “Well, clinically, he doesn’t have leukemia”. He also said ITP is usually chronic in anyone who is beyond puberty.

Since my son had to have monthly blood work to continue the acne medicine, we kept an eye on his counts regularly. They have ranged from one in the upper 20s to the 160s, but they normally rest in the 70-80 range. Yesterday, at a check-up with his pediatrician, his platelets were at 51, which is a bit lower than usual, but the doctor wasn’t too concerned.

I agree with the advice I've seen several times on this board: Treat when there are symptoms, not because of a “low” count. My son has no discernible symptoms: no bruising/petechiae, no bleeding gums, nothing. I know a bone marrow test is not “treatment”, but my husband and I aren’t wild about subjecting our boy to this test without a solid reason. The only reason the Hematologist will offer is that he just wants to know more about what is causing the low platelet count.

So, this is my very long-winded way of asking whether any of you who have ITP (or whose children have ITP) have said no to the bone marrow biopsy. (I’m doubting myself a bit right now…)

According to protocol, a bone marrow biopsy does not seem necessary in this case. Protocol states that it should be performed on ITP patients for those over 60, prior to splenectomy, and for those who do not respond to treatment. If there are any doubts that he does have ITP, then it should also be performed. That would include anyone with other abnormal labs (white or red cell counts) or those who have symptoms such as fevers, weight loss or enlarged lymph nodes.

Some people do it for peace of mind, but I can tell you that I have never seen a bone marrow biopsy show 'what is causing the low platelet count'. It is usually caused by antibodies and a bone marrow biopsy has nothing to do with that and will not show it.

Chronic does not always mean 'for life'. It simply means that the person has had ITP longer than a year. It sometimes resolves on its own. Hopefully your son will never have to treat.

Thank you, Sandi.

The protocol information is very reassuring.

Yesterday, the pediatrician, who had referred us to the hematologist, raised his eyebrows when I told him we had decided not to do the biopsy, but instead to wait and watch. He thought the biopsy was a good idea because he understood the hematologist's view of "wanting to know the cause". It's interesting that you haven't heard of the biopsy providing that particular bit of information...

I started worrying(!) last night because now I don't remember all of the details of our conversation with the Hematologist. I gathered from his comment that my son didn't have leukemia, at least not "clinically", that he didn't see anything ominous about the blood test results. All of the other counts (red, white, hemoglobin) have consistently been within normal ranges.

I was just wondering whether my husband and I should rethink our position. It's been almost a year, though, and the fact that we had opted to skip that test was making me nervous.

Thank you again for your quick response... I feel better.

Unless your son has something other than ITP, the BMB won't show a cause for low platelets. Many doctors think that the BMB will show whether or not platelet production is inhibited, but that is not the case. It will not show that based on the information I have from the top ITP specialists involved with the PDSA. Everyone with ITP ends up with a normal BMB result. I can only remember 4 or 5 times since 1998 that it turned out to be something other than ITP.

As a parent, I can understand why you would feel like you need to do everything that you can for your son. If you are unsure, err on the side of caution. I had one done (didn't know any better then) and it wasn't all that bad. It might seem worse for a 16 year old boy though. By then, I'd had two babies with no medication so a BMB didn't seem so bad after that. It took 20 minutes in the doctor's office. The worst part was the actual extraction, but it was over in 3 seconds. I didn't even have time to say 'ouch'. My rear was sore for a few days but I still went to work and did my normal things.