2 weeks for BMB results now Pathology is adding several weeks more

bonnieshaffer,

Did you have a bone marrow biopsy? I had mine 100-day one last Thursday. I expect it to be in another week. As for more tests, I would think they may be doing them for clarity. Doing more is not necessarily bad, but it depends on if you have your diagnosis yet? Mine at 100 days is seeing my donors' cells and how my body has adapted. I had A+, my donor has 0+.
Let us know.

Hi there - waiting is always so hard. Do not assume bad news - I keep trying to tell myself to only react to facts I have and try to put the waiting results out of my mind. I’d also suggest letting your doctor that ordered the tests know of the delay and that you are worrying it means bad news. That doctor might be able to reassure you that it’s just standard. But whatever that dr says, try to just deal with facts you have and not worry about pending test (easier said than done I know). Good luck!

Yes I had a Bone Marrow Biopsy (my third) on July 10th, just as I was heading out of town for vacation. I have MDS/MPN overlap with Ringed Sideroblasts and ET. I was diagnosed at the end of 2020.

My Doctor was concerned about my Hemoglobin dropping to 8.5 from its normal 10 so insisted I get the Biopsy ASAP.

So more than two weeks later I've heard nothing. I made some calls and got someone to call Pathology at the hospital to find out when the tests would be ready. He said it would be several more weeks.

I just wonder why no one let me know the waiting period would be much longer. Usually I get blood tests every 2 to 3 weeks as my cancer seems to be progressing.

Since the rushed BMB it has been radio silence from my Dr. who I really really like.

I just wonder if Dr.s have any idea how hard waiting is. I'm getting past it and am not going to worry about it anymore. It's just frustrating.

Thank you so much for the excellent advice. I did message my Dr. yesterday and let her know I was assuming bad news. Haven't heard back. I get too into my head about these things - but my Dr. is very good and if the reports she does have were very bad she'd have me in there in no time.

I'm usually really good about these things - waiting, etc. - but this time it is quite difficult. Dealing with this for 4 years is starting to wear on me.

I know there are others who are handling much more than I am and I appreciate this forum to speak with people who are experiencing the same issues as I am.

@bonnieshaffer Waiting is difficult, isn't it? Makes us wonder if the doctor or a member of their family has ever gone through this, right?!

While the waiting is something you'd rather not do, perhaps turning it around and looking at it that being thankful they are being thorough, will ease your worry. Can you try this line of thinking?
Ginger

Bonnieshaffer.
So, you have not had a bone marrow transplant? If not, more testing is likely normal to check all aspects for your bone marrow for change. This may keep showing that you are stable.
I did get two results from mine, saying no blasts..blah blah blah from July 18th. One formy hospital and one from the lab in Washington. Onetime I read the report and saw the word unremarkable. I said good to myself, no problem. Unknown to be at that time, further down it showed the makings of MDS. What?? This i found out when i met my doctor in person. I learned I cannot read the reports accurately.
This time, I note the report on the transplants result of the donor vs my cells remaining has not come back. That test takes longer.

Thinking of you as you continue waiting.
I hope that the extra testing simply indicates good, attentive, thorough care! That is definitely better than a physician overlooking something that could be monitored and prove to be informative and helpful.
Knowledge is power.
I am sorry that the frustrations are mounting for you as you mark a fourth year dealing with this cancer. It’s true that the sense of medical trauma can increase as time marches on and we continue to battle disease and spend much energy, time, and resources simply managing our care-appointments, scheduling, testing, lab work, prescriptions, insurance, billing, et cetera.
The illness may be exhausting, medication side effects can be debilitating, and the general fatigue can wear a person down.
The weight of all of it can be heavy.
So, something like an extra long wait for results feels like one more thing that is simply “too much.”
It’s not an easy place to be.
I hope you were able to enjoy your vacation and find some refreshment in that change of pace and scenery.
Do you have access to a good therapist? Is it helpful to talk through things?
I hope you have the support you need and feel that you are cared for well.

Blessings to all of you working to maintain the best health possible or trying to regain that which has been taken by disease.
Take good care of yourselves!

Yes you are right!

@juniperjgin Thank you so much! Yes it's true that the extra long wait time is simply too much. I have a few worrying signs, including level 2 Myelofibrosis and very high LDH all of a sudden. My white blood cells are now going straight up (they were always normal - my only normal blood count). I took Hydroxyurea for a year due to sky high platelets (over 1 million), but had to stop as it was lowering my Hemoglobin. My MDS is at odds with my MPN (ET) so it is tricky to treat. Treating one makes the other worse like a seesaw.

I did have a great time on vacation (Portland and the Oregon coast) and got to see my son and his darling fiancé. That and getting together with friends makes the time go by.

I've tried many therapists and have never found the right fit. I rely on my dear friend Jane, who I've known since Junior High as my therapist. She knows me so well - and actually has a degree in Psychology - that I can talk to her about anything.

Thanks so much for your kindness. I'll report back in when I know something!

Bonnie, maybe I am in the minority in understanding your very valid concerns. Getting an BMB on an urgent basis is enough to cause concerns. Not getting results in the time frame you are accustomed to only adds to that. Not being kept informed does not help. Getting results of an MRI took almost a month for me but that was because of a backlog, which I could easily understand (too few radiologists to read the scans). Being told that the pathologist wants to do more tests is another matter. You are justified in having and expressing your worries. Being brushed off is not acceptable in my opinion. (I would be telling those who do where to go if I were in your position.) Hopefully, you can keep your worries in check so that they do not add to the problem. And most importantly, that the delay results in positive results.