Follicular lymphoma patient. New doctor wants to do bone marrow test

I'm a little confused as to what was taken with a needle. No biopsy was done then how did they diagnose you? I got my diagnosis from a biopsy of the lymph node and then later they did the lovely long needle in the hip to test bone marrow and yes it came back that cancer was in the bone. It was 6 years before I had to have chemo as it is a prolonged growing cancer. It has been almost 12 years since the last chemo but see my oncologist 2 x a year and have a CT scan. Diagnosed with osteoporosis a few years back but keeping it at bay with a healthy treatment. We do the best we can with what we are dealt. I pray you have many more years and get the treatment that is right for you. You are in charge of yourself, remember that.

Pffft. I have a concert to prepare for, a child to take care of, and am 1 month into a 6 month trial at a new job. I barely have time to think. When my husband brought our son home from daycare today, I was resting. He came to give me hugs and cuddle time, them he brought toy after toy to the bed so we could play together.

Emotions run very high when we get a diagnosis involving the word Cancer and I’m so sorry you had a meltdown yesterday. I’d like to think of that as a pressure relief valve opening. Sometimes purging those tears is cathartic and helps to clear the head. You’ve been carrying the weight of this anxiety for a while and it builds up…letting it go is important.

If it’s any help at all, Follicular lymphoma tends to grow slowly. Many people with this type of cancer live for a long time with a high quality of life. Symptoms are often mild or nonexistent when it’s diagnosed. So it’s important to not let thoughts of ‘what if’ defeat you before you even begin this journey.
I do indeed remember my diagnosis and what helped me get through the worst days is just what you mentioned…one breath, one moment, 1 minute at a time. Our thoughts can have tremendous power over our bodies…use them for good!

Waiting for results of the biopsy is stressful time. It can take a week or more for all the results to be ready for review. So I hope that you’ll find some positive activities to keep yourself uplifted and distracted.

Here’s a challenge: When a negative thought pops into your mind, quickly think of 3 positive things to replace it! Train yourself to flip the script! It works!

You did great yesterday. Now go have fun with your little boy. ☺️

Well, I needed a second shot of anesthetic, and when it came time for them to take the bone sample, I stayed still as promised but absolutely lost it an started sobbing uncontrollably. Do you remember what it felt like when you first found out you had cancer? I do, and this feels the same as it did before I found out which kind I have. It's like I'm going through that all over again (and yes, I realize that in this crowd I'm one of the 'lucky' ones, at least for now). Well, one breath at a time, one step at a time... I only hope I get back to feeling like my usual self quickly.

Good morning @caracello22. It doesn’t do you any good at this point to think about what your former doctor should or shouldn’t have done. It is in the past and there are no do-overs. I’ve learned over my lifetime that ‘shoulda-coulda or what if’ has no merit and it only serves as a stressor. ☺️

So now, it’s a fresh beginning for you with a new doctor who is starting with her own baseline of tests and information. Don’t read too much into this! Your doctor is doing the right thing to not take your previous diagnosis as gospel. From what you’re saying it sounds vague anyway. I think she’s getting the idea that not much was done in the past and she’s trying to rectify that. She’s being comprehensive in testing for herself so she can start with a clean slate of information. I had the same thing when I went to Mayo Clinic. They did their own testing on me instead of relying on other data that might not be up to their standards.

If I can encourage you at all, I’d like you to look at this in a different perspective. Not “what if everything goes wrong”…change that to “what if everything goes right?!” I know, it’s mind games but they work! I’ve had 13 of these biopsies over the past few years and hundreds of blood tests, scans, MRIs, etc. so I understand about Scanxiety. But each time my pre-conceived notions were far worse than reality.

Now to the testing. You have nothing to fear about what it will do short term to your body. This bone marrow biopsy isn’t a highly invasive surgery whereby there is no cutting, sutures or long term recovery from this.

While it doesn’t sound pleasant the procedure is done with the insertion of an aspirating needle. It will take a little core sample from your marrow and also take a small sample of peripheral blood from the marrow. The test is relatively easy and instead of a sharp pain, it is like a pressure.

The area tested is on your back hip bone, just near one of the little dimples over your bum. The first day it is important to keep the compression bandaid on it just to make sure there is no bleeding. Much like putting a bandaid over where you’ve had blood drawn except this will be on for 24 hours. After that you can take a shower and life resumes.

Long term, it may be a relief to actually get a diagnosis so that there is a firm treatment plan. You’ve been foundering for years with no plan in place and left to wonder about your future. Your new doctor sounds like the type of person who will help you find some answers so that you can relax and start enjoying your life again without living in a world of uncertainty.

As for roughhousing with your son, probably not a good idea for mom to give horseyback rides for a day but you can sure play with him. This test won’t leave you fatigued or out of commission. I think I’ve only taking an Advil once or twice. The rest of the times there was no discomfort at all.

You’ll take this one day at a time and I think you’ll find a sense of relief to have a good doctor on your team. Let me know how it goes, ok?

Thank you for this detailed response. I'm also relieved, but a bit upset that my previous doctor seems to have not been thorough (something I suspected), and nervous about the new test, what it will do to my body in the short term and what it may turn up that could impact my life long term (assuming I have long term to think about). It turns out nothing in my file says definitively what I have (yes, I did read it, but much can get lost in translation when all documentation is in a language you don't speak fluently). I am nervous, but I don't think the doctor would order a test like this without good reason. You remember correctly; I do have a young son who is the light of my life and who has absolutely kept my spirits up through all of this. I don't know how I'm going to explain to him that while I'm not feeling ill, I'm probably not going to feel up to roughhousing with him for a couple of days. But, I'm sure I'll figure it out.

A bone marrow biopsy/and or aspiration is not terrible. It does involve the bone in your hip area and a couple needles. They numb it with lidocaine or another agent and the pain of the needle is not felt. The "pain" is a pressure. Odd really, as no other test I have done except the one tooth implant I had was like that. For me, it was the best way to see why my white cells and other components may be off. The marrow is the action center where our blood is created. I had my test OCT 2nd; the Dr. covers it with me the 27 of this month. The results were posted in my patient portal. I am not a Doctor, but from I can read, it is not looking bad.

Hello @caracello22, Honestly, from my perspective as leukemia patient and survivor, I’m relieved that you’ve changed hospitals and that your new doctor wants a bone marrow biopsy. She’s being very proactive and thorough in an effort to confirm your diagnosis to make sure you’re getting the best care and treatment for your disease.

The bone marrow biopsy supplies vital information to your doctor. In your case, you’ve been previously diagnosed with follicular lymphoma. Often lymphomas are confirmed with PET scans but for some types of lymphoma (for example, low-grade non-Hodgkin lymphomas such as follicular lymphoma), lymphoma in the bone marrow can be difficult to see on a PET/CT scan. So this is an important tool for your doctor to get a clear picture of the health of your bone marrow or the extent of your disease. She wants to make sure it’s not in your bone marrow.

I’ve had many of these done over the course of my treatment. I’m 4+years past my bout with an aggressive blood cancer. Your form of lymphoma is not aggressive. But it needs to be confirmed and staged so that you can get the treatment necessary for you to move on with your life and stop worrying. The biopsy is just part of a diagnosis process and sounds worse than it is. There is no need to be terrified of either the biopsy or your diagnosis.

If I remember correctly you have a wonderful young son and husband who love and need you. Your goal is to live a long, happy, healthy life and this is one step to get you the reassurance you need to help you achieve that goal.

I found a couple of informational articles for you. One is on follicular lymphoma. The other is on the value of bone marrow biopsies and aspiration in lymphoma testing.

It’s great that your blood work has remained stable. How have you been feeling lately?