What do these sciencey words mean?
November 17, 2016 6:12 AM   Subscribe

While I know you are not our doctor, we just discovered my mom has cancer. She had been sick for 7 weeks but they told her was osteoporosis.

After a second trip to the ER they found a large mass in her throat and near her aorta (the first trip they said it was Osteoporosis maybe just echoing what we told them her doctor thought it was). She had a biopsy 10 days ago and we got the results today. Now an hematologist will see us on Tuesday to tell us what the diagnosis means. It's hard to wait another week:
"Malignant lymphoma consistent with large B cell high-grade features".
We have no idea what this means or how serious it is.
How bad is this? What should I be doing, learning, etc. She lives in a house I own when she is not living in my own home. I am responsible for all $, etc. Will she likely be moving back into her home or will she be ill enough that I should be bringing her things to my house, etc.
posted by beccaj to Health & Fitness (8 answers total)
A lot is going to depend on the specific type of B-Cell lymphoma, but here is a good place to familiarize yourself with some of the basics before you speak with her doctor. http://www.cancer.org/cancer/non-hodgkinlymphoma/detailedguide/non-hodgkin-lymphoma-types-of-non-hodgkin-lymphoma (You can ignore the section on T-Cell Lymphoma unless the histology comes back different than what you have now).
posted by Apoch at 6:29 AM on November 17, 2016

I'm so sorry.

IANAD, just someone who had a dear friend pass away from Non-Hodgkin Lymphoma earlier this year: High-grade means aggressive. B cell is the type of cell affected: you can read about it here.

You're going to want to keep her at your place, I think. The chemo side effects can be debilitating. Be SURE to discuss her living will right now, ASAP, especially her wishes in case things get bad quickly and decisions need to be made. Friend did this and it ended up being a genuine relief for his family.

Do take care.
posted by fraula at 6:31 AM on November 17, 2016 [3 favorites]

Malignant lymphoma is cancer in the lymph system. Large B-cell lymphoma is the most common type. High grade means it is fast growing.

There are basically two kinds of lymphoma: Hogkin's and non-Hodgkin's. It sounds like your mother has fast growing Non-Hodgkins Lymphoma, possibly DLBCL.

I am not a healthcare practitioer, nor do I play one on the internet. I just have a dog with lymphoma, so I am familiar with many but not all of these words.
posted by DarlingBri at 6:39 AM on November 17, 2016 [2 favorites]

I want to start by saying that I was in your shoes two short years ago - what I thought was a routine medical procedure led to a scary diagnosis and what seemed like a very long wait to see a specialist. I want to urge you to wait to meet with the hematologist before making any concrete plans, because they will have a lot more information about your mother's health and will be able to walk you two through her treatment options and what the likely level of care she will need. For me, this wait up until the meeting with the doctor was the scariest time, because we had no idea what the future would hold. Take care of yourself!

Here is what the Lymphoma Research Foundation says about her diagnosis. It sounds like there will be a short period of more tests to figure out the extent of the disease (in medical terms, the "staging"), followed very quickly by treatment.

The most helpful thing you can do now is to get informed about her insurance situation and how they will pay for cancer care. If she is on private insurance, they may need pre-authorization for certain treatments - some doctors will take care of this automatically and some need to be reminded. If she is on Medicare, there are other rules.

When my husband went through his cancer treatment, the doctors were very insistent on talking about a living will and other advanced directives, so this may be a good time for you to start a conversation about these issues with your mom before you see your doctor. Nothing has to be decided right away, especially if she is still feeling ill or in pain, but it can be an ongoing process.
posted by muddgirl at 6:45 AM on November 17, 2016 [7 favorites]

The Leukemia and Lymphoma Society is a wonderful resource - they can provide you with tons of information and patient support. One of my best friends is the director of our state chapter and I can assure you they work tirelessly to support people in exactly your situation. They were very helpful to me when my father in law was diagnosed with leukemia as well.
posted by something something at 7:03 AM on November 17, 2016 [2 favorites]

I would advise that you take a few deep breaths and step back from the problem until you see the oncologist.
It is a tough diagnosis to deal with and much, much harder if you are relying on all of us well-meaning internet strangers who are ignorant of the details of your mother's situation. Hi-grade features could mean a very aggressive lymphoma, but sometimes that is a just pathological finding that does not really play out in the behavior of the disease. Most lymphomas are very treatable and many, many of them are curable. You really need a hematologist to tell you.

I'll keep you mom and you and your family in my thoughts and I send all good wishes.

Source: recently retired oncology nurse.
posted by SLC Mom at 10:54 AM on November 17, 2016 [4 favorites]

SLC Mom's advice is good. I know it's really hard to wait and it's reasonable to want answers now. I was recently diagnosed with a different blood cancer, and one thing my therapist said that was really important is that I really have no way of knowing what's going to happen in the future. Even your mom's oncologist won't really know - though you'll get a much more educated guess from him/her. My oncologist is surprised at how quickly I'm improving from the chemo.

I don't know about lymphoma, but a lot of chemo now is much easier than it used to be. I am finishing up my second round, and I'm still working full time, though I'm taking off the days I receive my treatment. I am more tired and am not going out in the evening as much, but I mostly feel better than I did just before I was diagnosed because I had very severe, life-threatening anemia, and my hemoglobin is close to normal now . I am managing taking care of all of my physical needs as well. Psychologically it's hard - my cancer is considered incurable - but physically, I have to say that so far it's not that bad.

You will have access to a lot of statistics, but they also don't tell you what will happen with your mom. Stephen Jay Gould, who was an evolutionary biologist, wrote an article on statistics that I found helpful. He was diagnosed with a cancer with a predicted eight-month survival and lived for another twenty years. You can see his article here.

You've gotten some good advice on research, and it's a good idea to educate yourself so that you'll have a better idea of what you want to ask the oncologist. The uncertainty that goes with cancer is very hard, but that's just part of the deal. I am sorry you and your mom are going through this, and I wish you the best.
posted by FencingGal at 7:18 AM on November 18, 2016 [1 favorite]

Thank you everyone.
posted by beccaj at 3:35 PM on November 27, 2016

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