Lymphoma doc at Mayo Rochester

Hello,
Regarding Mayo Rochester, I was there June 19th, 2019 and was given my SMZL diagnosis. ( I have had other cancer diagnosis and surgeries there as well)

You can look a the Mayo Hematology list of Doctors on their website and there are a number of B-cell lymphoma as their interest or specialty. My experience with Mayo is that they are very specialized and use a team approach and consultation within their specialties. Since 2019, I have seen a couple different Hematologists and nurse practitioners and have been comfortable with all of them. So based on your diagnosis, I expect you would be routed to the appropriate doctor (s).
It is my opinion that depending on your timeline, diagnosis, test results, they may want to see more or newer testing to confirm your diagnosis and or treatment path.

In my opinion, you have made the best possible choice to seek care at Mayo. It's not only the doctors, their entire system of scheduling, testing, treatment, communication, and compassion has amazed me.

The Mayo facilities are huge, but there is much information and instructions available on line. Once you arrive there are many help desks or volunteers and are very helpful.

Do you have a long way to travel?
Well I hope all goes well. Let us know if you have other questions.

Thank you for your positive comments. I’m dealing with SMZL also and feeling hopeful about getting some fresh eyes on my situation.
It’s a 7 hour drive, but I’m fortunate to have a family member living near Rochester.
Has anyone been treated for SMZL recently at Mayo and able to share a doc recommendation?

@monicalu2626, to learn more about Mayo Clinic, what to do there, hotel recommendations, what to expect, and much more, you may wish to review the discussion in the Visiting Mayo Clinic support group here: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

Mayo Clinic uses a team approach. Once you have your initial appointment, testing and assessment, additional appointments if necessary will be arranged. Your hematologist/oncologist will be your main provider and will quarterback any additional needs. @loribmt may have more insight to share.

Here are a few discussions that may help as you prepare for your appointment:
- Your Tips on How to Get Off to the Best Start with a New Specialist
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
- First Visit to Mayo Clinic: How do appointments work? What to expect?
https://connect.mayoclinic.org/discussion/new-internal-med-patient/
- Mayo Clinic Patient Portal: How do I find it? Do you use it?
https://connect.mayoclinic.org/discussion/mayo-portal/
Monica, when do you go to Mayo Clinic?

Hi @monicalu2626 I’m a ‘frequent flyer’ with the hematology department at Mayo-Rochester and I don’t hesitate to say that they’re 2nd to none!

As @stanleykent mentioned in his reply, you’ll be directed to a specialist most suited to your request for a 2nd opinion with the information that you’ve provided. There are a number of doctors who specialize in non-Hodgkin’s lymphomas so I think you can feel pretty comfortable with whomever you’re paired.
Have you submitted your request for a 2nd opinion yet?
If not here is a link to get you started. http://mayocl.in/1mtmR63

Will your current doctor be referring you?

Hi,
I’ll be seeing Dr. Gita Thanarajasingam.
Have you met her?

Hi @monicalu2626. I’ve not had Dr Thanarajasingam personally as my doctor but I know of her! Brilliant doctor with lymphoma as focus specialty.
Here’s her bio… https://www.mayoclinic.org/biographies/thanarajasingam-gita-m-d/bio-20339180

I know you’ll find you’re in excellent hands! Let me know how your appointment goes…

When is your appointment? Do you have any questions or concerns? Is your patient portal set up and ready to go?

Thank you, I’m all set.

Hi @loribmt , my name is Mike and I am from Australia, I am 68 and was diagnosed with lympho plasmacytic lymphoma(waldenstrom) 3yrs ago, I have moderate condition, am being monitored by haematologist, no treatment yet. My problem is finding information about my condition as I seem to encounter a lot of shoulder shrugging when I ask questions about my condition and was wondering if you could point me in the right direction for some information. Thank you Michael

@breathernow Hi Michael and welcome to Connect. Shoulder shrugging sure isn’t much of an answer when you have medical questions! I’m sorry you’re not finding much help with your Waldenstrom macroglobulinemia (WM) diagnosis. (Also known as LPL or lymphoplasmacytic lymphoma, Waldenstrom’s is one form of this disease)

To help get you started with a little information about WM, here are several links to educational articles for you.

These from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/waldenstrom-macroglobulinemia/symptoms-causes/syc-2035996breathernow

Mayo Clinic Proceedings: https://www.mayoclinicproceedings.org/article/S0025-6196(19)30090-4/fulltext

Another helpful article on lymphoplasmacystic lymphoma is from Healthline.com https://www.healthline.com/health/lymphoplasmacytic-lymphoma

As you read through these articles you’ll find that WM is often a slowly developing form of lymphoma so many patients may go years without treatment. When the time comes there are different treatment options your hematologist may consider such as biological or targeted therapies, chemotherapy or in some cases a stem cell transplant.

You may wish to connect with other members living with Waldenstrom’s in these discussions:
- Waldenstrom macroglobulinemia Recently diagnosed https://connect.mayoclinic.org/discussion/waldenstrom-macroglobulinemia-recently-diagnosed
~~~~

- Waldenstrom macroglobulinemia: What to expect during watch & wait? https://connect.mayoclinic.org/discussion/waldenstrom

These are just two of the many discussions with members who have WM. More discussions can be found by typing in Waldenstrom macroglobulinemia in the search bar at the top of the page. Feel free to just into any conversation! If you want to tag a specific member, just make sure to type @ in front of their @name. The member will get a notification.

Hopefully this is enough to get you started in finding out a little more about your diagnosis. Being in the active surveillance period, I know it can feel like you’re waiting for the other shoe to drop. But it doesn’t mean you put a hold on life. Keep enjoying each day to the fullest. If the time comes when your WM status changes, there are options to help you carry on.
How often do you have follow-up appointments? Does your doctor take routine blood work?

Follow up appointments with haematologist 12monthly, blood tests same, am happy with all the testing that has been carried out at Brisbane hospital cancer ward, just felt alone and not sure of what was happening, thank you for filling in the dots! . Mike