Pending testing to confirm type of lymphoma

Posted by sherda @sherda, Dec 7, 2022

After numerous blood tests, PET Scan, Lymph-node & bone marrow biopsies, I’m still waiting for a final diagnosis from monoclonal B cell lymphoproliferative disorder. The PET scan suggested a stem cell transplant. Neither biopsies results provided information other than the processed used. My video appointment isn’t until the end of next week. Has anyone else experienced this lack of providing information on test results? Any direct questions I should ask my hematologist other than the obvious ? Are there any
Concerns or considerations I should be aware of before meeting with my doctor?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Hi @sherda, Welcome to Mayo Clinic Connect. We have a large group conversation in our forum with other members who have gotten information ahead of their doctor’s appointment to discuss a diagnosis and treatment plan. Sometimes it can be a godsend and other times, such as yours, it just serves to build anxiety until you can talk with your doctor.

Here’s a link to that discussion if you want to commiserate with other members. Sometimes it helps to know you’re not alone in the anxiety of waiting.
The Patient Portal: Help or Hinderance. https://connect.mayoclinic.org/discussion/the-patient-portal-help-or-hindrance/

I am sorry that you’re having to wait for such a critical diagnosis. Having a blood disorder is scary but I hope that I can bring you some reassurance. I had a very aggressive form of leukemia and it also required a bone marrow transplant. I am now coming up on 3.5 years post transplant and feeling fabulous.
From what you’re saying about the tests is that your doctor is trying to narrow down the type of lymphoma that you may have and that will dictate the treatment.

The PET scan is useful in determining the involvement of the disease in the bone marrow. The bone marrow is the central blood manufacturing site in our bodies and when that becomes diseased or malfunctions our immune system is compromised. Depending on the diagnosis, sometimes an option would be replace the defective bone marrow with a bone marrow transplant/stem cell transplant. Thereby giving the patient an entirely fresh start. Like a reboot!
It’s an arduous journey but one well worth taking if that is a practical option.

Things to talk with your doctor. Honestly I would let my doctor do the talking first and jot down things as he/she speaks. It’s hard to ask relevant questions when you don’t yet know the full diagnosis or the potential courses of treatment. Don’t hesitate to ask questions of your doctor during the video chat after each point.
If you can have someone with you that can be helpful too, so that you’ll be able to listen and they keep notes of what the doctor says. My husband was most helpful when it came to being my ‘sidekick’ at all my appointments.

But some basic questions you might ask:
Will I need more tests?
What are my treatment options?
What are the potential side effects of each treatment?
How will treatment affect my daily life? Can I continue working?
How long will treatment last?
Is there one treatment you feel is best for me?
If you had a friend or loved one in my situation, what advice would you give that person?

You’re not alone in this journey. Let me know what you find out next week, ok?

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@loribmt

Hi @sherda, Welcome to Mayo Clinic Connect. We have a large group conversation in our forum with other members who have gotten information ahead of their doctor’s appointment to discuss a diagnosis and treatment plan. Sometimes it can be a godsend and other times, such as yours, it just serves to build anxiety until you can talk with your doctor.

Here’s a link to that discussion if you want to commiserate with other members. Sometimes it helps to know you’re not alone in the anxiety of waiting.
The Patient Portal: Help or Hinderance. https://connect.mayoclinic.org/discussion/the-patient-portal-help-or-hindrance/

I am sorry that you’re having to wait for such a critical diagnosis. Having a blood disorder is scary but I hope that I can bring you some reassurance. I had a very aggressive form of leukemia and it also required a bone marrow transplant. I am now coming up on 3.5 years post transplant and feeling fabulous.
From what you’re saying about the tests is that your doctor is trying to narrow down the type of lymphoma that you may have and that will dictate the treatment.

The PET scan is useful in determining the involvement of the disease in the bone marrow. The bone marrow is the central blood manufacturing site in our bodies and when that becomes diseased or malfunctions our immune system is compromised. Depending on the diagnosis, sometimes an option would be replace the defective bone marrow with a bone marrow transplant/stem cell transplant. Thereby giving the patient an entirely fresh start. Like a reboot!
It’s an arduous journey but one well worth taking if that is a practical option.

Things to talk with your doctor. Honestly I would let my doctor do the talking first and jot down things as he/she speaks. It’s hard to ask relevant questions when you don’t yet know the full diagnosis or the potential courses of treatment. Don’t hesitate to ask questions of your doctor during the video chat after each point.
If you can have someone with you that can be helpful too, so that you’ll be able to listen and they keep notes of what the doctor says. My husband was most helpful when it came to being my ‘sidekick’ at all my appointments.

But some basic questions you might ask:
Will I need more tests?
What are my treatment options?
What are the potential side effects of each treatment?
How will treatment affect my daily life? Can I continue working?
How long will treatment last?
Is there one treatment you feel is best for me?
If you had a friend or loved one in my situation, what advice would you give that person?

You’re not alone in this journey. Let me know what you find out next week, ok?

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Thank you. I appreciate the connection and the information.
I’m a note taker by nature, so yes that has been helpful.

I sound anxious, but I think I’m more confused than anything. I was told over 20 years that I had lupus and my kidneys were shutting down. There were so many tests and at almost a year later my diagnosis was systemic Lupus. There was a huge regimen of meds. Including chemo, heavy doses of prednisone, etc. at f see one point after 4-5 years, I had enough and took myself off all meds, against medical advice. Now, some 20+ years later, I’m told I might not have had Lupus. I just feel like this is a 2.0 process. I understand that’s normal for what’s currently happening, but every thing is at a slow pace. I’m grateful for the care I’m receiving.
I know blessed in many way and my family had been extremely supportive. I think I feel under prepared. That is out of my comfort zone.
So again, Thank for the connection. I will keep you updated.

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@sherda

Thank you. I appreciate the connection and the information.
I’m a note taker by nature, so yes that has been helpful.

I sound anxious, but I think I’m more confused than anything. I was told over 20 years that I had lupus and my kidneys were shutting down. There were so many tests and at almost a year later my diagnosis was systemic Lupus. There was a huge regimen of meds. Including chemo, heavy doses of prednisone, etc. at f see one point after 4-5 years, I had enough and took myself off all meds, against medical advice. Now, some 20+ years later, I’m told I might not have had Lupus. I just feel like this is a 2.0 process. I understand that’s normal for what’s currently happening, but every thing is at a slow pace. I’m grateful for the care I’m receiving.
I know blessed in many way and my family had been extremely supportive. I think I feel under prepared. That is out of my comfort zone.
So again, Thank for the connection. I will keep you updated.

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It’s understandable that you’re feeling a little confused after learning about the conflicting information with your previous Lupus and kidney diagnosis. That’s a long time to be treated for something that may not have been the case.

I’m glad you’re feeling more confident about the care you’re receiving now with this new chapter about to start. It’s ok to feel underprepared because this is completely new for you. I was in the same situation almost 4 years ago when my AML journey began. It clipped me off at the knees because I was so healthy and seldom sick a day in my life. Then within a 3 week period I went from feeling on top of the world to being literally hours from crossing over that rainbow bridge! I’ve learned so much from my trek through blood cancer and a bone marrow transplant and I feel it’s important to help others along their journey.

Thought I’d share with you a little Spotlight article about a young woman I’ve been mentoring through her bone marrow transplant. We shared our story to show the value of mentoring in bringing hope to others facing a similar experience.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
When you find out your diagnosis, because of the nature of our forum, there will most likely be others here who are going through the same life adventure. I’ll get you connected with them. I want you to know you’re not alone and anything I can help you with, I’m right here with you through your reboot 2.0. 🙃
Let me know how your appt goes next week!

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I definitely will. Again, I appreciate your willingness to share and mentor. It goes along way in the healing process.
Have a great week!

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@sherda

Thank you. I appreciate the connection and the information.
I’m a note taker by nature, so yes that has been helpful.

I sound anxious, but I think I’m more confused than anything. I was told over 20 years that I had lupus and my kidneys were shutting down. There were so many tests and at almost a year later my diagnosis was systemic Lupus. There was a huge regimen of meds. Including chemo, heavy doses of prednisone, etc. at f see one point after 4-5 years, I had enough and took myself off all meds, against medical advice. Now, some 20+ years later, I’m told I might not have had Lupus. I just feel like this is a 2.0 process. I understand that’s normal for what’s currently happening, but every thing is at a slow pace. I’m grateful for the care I’m receiving.
I know blessed in many way and my family had been extremely supportive. I think I feel under prepared. That is out of my comfort zone.
So again, Thank for the connection. I will keep you updated.

Jump to this post

@sherda, I'd like to also invite @gingerw into this discussion. Her current medical conditions mirror yours to some extent. Like you, she lives with lupus, has just started dialysis and is in treatment for a blood cancer – multiple myeloma. Dare I say, you both also share a trait of being organized information seekers and note takers.

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@colleenyoung

@sherda, I'd like to also invite @gingerw into this discussion. Her current medical conditions mirror yours to some extent. Like you, she lives with lupus, has just started dialysis and is in treatment for a blood cancer – multiple myeloma. Dare I say, you both also share a trait of being organized information seekers and note takers.

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I’m sorry she seems to be going through a lot. I hope she receives some positive outcomes. I am happy to be part of this conversation. How do we connect?

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@sherda

I’m sorry she seems to be going through a lot. I hope she receives some positive outcomes. I am happy to be part of this conversation. How do we connect?

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@sherda Thank you @colleenyoung for tagging me into this conversation!

I was diagnosed with Systemic Lupus in 1988, after months of progressive testing. Get the results, then decide the next factor to have testing done. At that time it was a long drawn out process. I have a fairly mild case, in that there was no chemotherapy done, although there are still the flares. In 1998 they thought it was affecting my kidneys, but now I wonder if it was the first showings of what was later determined to be a rare autoimmune kidney disorder. Medicine has come a long ways in diagnostic tools, definitely. But there are still so many unknowns and variables, it amazes me we get to conclusions at all, sometimes!

As @loribmt said, ask questions, keep blank paper with you to jot things down as they come to you [middle of the night is a favorite time for my mind to do that!]. If you are of a mind, start or keep a journal of your emotions and thoughts. Just getting things out will bring a lot of comfort. No need to review it later unless you want to. Knowledge is power, and knowing yourself is a step in the right direction to handling all this.
Ginger

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Nice to meet you, Ginger.
It seems we have a lot of parallels on this journey. I was diagnosed after about a year of reoccurring and constant issues back in December 2001. This seems to be the month, I guess. There was a lot of tests, transfusions, biopsies, surgeries and chemo, which added even more meds. I was diagnosed with Systemic Lupus and had a host of specialists for 6-7 years of treatment before I pulled myself off everything. It was too hard on my family and quite expensive. I believed I’ve been in remission for all these years, with minor flare ups here and there. My last phone visit, my doctor told me he believes I was misdiagnosed because my titters were low. My labs pointed to an indolent lymphoma. All the other recent labs have been in line with lymhoprolifierative disorder. I find out the specifics this Friday, this makes 21 years after my first round of chemotherapy. Seems a bit ironic.
I have notes from every appointment and a page of questions to ask. I also requested my old do notes, as my previous doctors retired with the Covid pandemic. My biggest concern is regardless of the diagnosis, will the treatment still allow me to watch my grandchildren during the week. They are 13 months, almost 3 years and I also have another on the way at the end of February. It’s been a very difficult year with a lot of loss. We are hoping for good news.
I pray you are in recovery mode with positive outcomes. I will keep you in my prayers.

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Hello & Happy Friday.
I just got off the call with my doctor and will start treatment soon for CLL -My final diagnosis. The recommendation was a daily pill of Venetovlax for a year and 6 infusions of Gazyva done monthly. I’ll have to complete regular labs to keep an eye on liver & kidney function, but this was good news. I feel I have answers and a plan. Now we wait to schedule and learn more from my “Teach” class, which starts the process.
Staying hopeful and ready to heal.

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@sherda

Hello & Happy Friday.
I just got off the call with my doctor and will start treatment soon for CLL -My final diagnosis. The recommendation was a daily pill of Venetovlax for a year and 6 infusions of Gazyva done monthly. I’ll have to complete regular labs to keep an eye on liver & kidney function, but this was good news. I feel I have answers and a plan. Now we wait to schedule and learn more from my “Teach” class, which starts the process.
Staying hopeful and ready to heal.

Jump to this post

@sherda, it is an odd sense of relief for finally have a diagnosis, isn't it? I'm tagging fellow CLL-ers like @sonia85 @kegraves @hababeck @4romeosierra @suez3 @deananbeck @tinagibson @alanahawaii @carl50 to support you in this unknown journey.

You may also be interested in reading and commenting in these related dicussions:
– Chronic lymphocytic leukemia (CLL): How do you manage side effects?
– CLL leukemia: Just diagnosed, what can be done? https://connect.mayoclinic.org/discussion/legs-and-cll/https://connect.mayoclinic.org/discussion/cll-leukemia/
– CLL – newly diagnosed https://connect.mayoclinic.org/discussion/cll-newly-diagnosed/

I, for one, will be interested in hearing more about what you learn in the "teach" class.

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