should I do more testing?

I will answer the bone marrow test. First let me say I had MDS, and I was told the bone marrow is the truth teller about our blood. The only way to get that truth is to get a sample of the bone marrow and the bone. You can look it up. I will say i have had 4. Yesterday was my 4th. You lay flat on your tummy with your head on a pillow. They expose a spot on your hip. Your pants and undies are slid down a to get access to that spot, iliac crest on your hip. You are numbed with lidocaine first. I will say it has a weird feel. Not painful like a sharp pain, but they do have a different needle to extract each product, and it is a sensation or a pressure that lasts briefly, but for me was manageable. They will ask you throughout if you are ok. Tell the truth always. They may have solutions, like more numbing.
I had 2 friends say they were in the room as this was done on their loved ones. Let's say it is harder to watch then to get it. At the COH in Duarte and as I expect at other hospitals like mine, these teams do these all day. It takes less than 10 minutes to prep you and get it ready. 30 minutes from walk in till you leave.
I said yes to it, because it gave me answers to the blood numbers i was having. Three times I have had the same Physician's Assistant. She remembers me each time. She is calming.

I had to get a bone marrow biopsy to stage my Hodgkin’s Lymphoma. I’m not a very religious person but this wonderful, calming nurse asked if we could pray together and it helped so much as I was just finding out I had cancer and was terrified.Like katgob said, I put my head on a pillow lowered my pants, I was standing up, and they began the numbing portion. When they started to go deep to get into the bone it was very uncomfortable and felt like someone was pounding with a hammer not painful just pressure. Definitely worth getting answers.

I have had 5 bone marrow biopsies and while they are not comfortable, they are not terribly painful either. I have had them with and without sedation and I prefer sedation since you don’t remember it as much. Not all places offer sedation and to me it is worth doing even without sedation because it does gives answers. So to answer your question, it’s not that horrible and I think it was worth it every time. Good luck.

I had a baseline BMB 8 years ago and found it quite interesting. I am a woodworker and I used to be an exploration geologist, so experienced with drilling through wood and rock of different densities. There was no BMB pain, just pressure and drilling differences from the fat, muscle, and bone penetrated. It felt quite earthy. My numbers have been ramping up, so I expect I'll have another in the next year or two.

I have had one back in January 2022, but the extraction was not from my hip, but the lower back. Physicians Assistant did not numb it enough, and I told her this. I felt another shot of something during the procedure. I will have a new one if the specialist orders it, but not ever again by the Mayo Physician Assistant who performed the first procedure. This is in my patient notes. Best success to those needing this test.

If your doctor believes it's in your best interest to have a bone marrow, and you trust your doctor, then I would have it done. I had a bone marrow exam. 1 hour before I took a Xanax..I hardly felt a thing..I'm glad I had the exam since it left nothing to the imagination..You need to trust your doctor if not then get a second opinion. you should have a partnership with your doctor if you don't feel like you do then it's time for a change.

Thank you

Thank You

Thank You

@veronica1955
Greetings! I’m going to offer some different reasoning. Each of us has to make our own informed decisions about our healthcare. So you may very well take another path, and that’s okay too.
I was diagnosed with MGUS three years ago. At the time I discussed getting a BMB with my doctor. As a prelude to my diagnosis, I had already had extensive blood work, scans of my whole body and urinalysis.
I asked if it was my hem/onc doc’s opinion, given this information, that I needed to start any treatment. He said “no.”
I asked if my “numbers” increased, at what point they would reach a level that he would start to consider treatment. He said that they would be substantially higher.
I asked if he was concerned that my blood disorder was more complex than MGUS and he said, “no.”
So we agreed that the BMB could wait. My numbers rose a bit but my last bloodwork yielded almost identical results to the first blood draws when I was diagnosed three years ago.
It is worth a discussion with your hem/onc physician. I am perfectly comfortable that I made the right decision and I do follow up with my doctor at the prescribed intervals to make sure that things aren’t getting “wanky.”
They tell me, these medical people, that my threshold for pain is pretty high, but if I were going to get a bone marrow biopsy, I can assure you that I would ask for sedation. I am in awe of my fellow patients and Mayo connect members who do it without sedation and some even talk about doing it without any numbing but no. I am not that brave.
I am an advocate for cooperating with doctors, but I’m also an advocate for asking lots of questions. There is no invasive medical procedure that is without risk. You need to ask all the questions and have a firm understanding of why a procedure is necessary before you agree to it. If there’s a good reason, by all means, make yourself as comfortable as possible, through your negotiation with your Physician, but do what you need to do.
Will you let me know what you decide?