I may have low grade lymphoma or it could be from inflammation

I am in the process of being diagnosed with some type of lymphoma. I late February, I chanced on a lump in my armpit. I’ve been through my HMO’s protocols enough to know to look it up and read their recommendations: Wait a week and recheck, could be an infection. A week later, not in my armpit, but closer to the base of my breast. (I’ve since been told they don’t move; I have multiple enflamed lymph nodes.)

At this point, thinking my doctor would want more information, I attempted to get a mammogram but was told, because of the lump, I needed to see a gynecologist. Next day, I met a wonderful one who put me at easy from the jump with: ‘You thought you could avoid us.’ She then explained why the protocol. She then set me up for not only the mammogram but ultrasound which I had a few days later. During ultrasound, I was asked if I had been diagnosed with leukemia or lymphoma. I thought that strange, but went home and read about both. Meanwhile, the biopsy that same person did came back two days ago and my primary has been very supportive and got me setup with the Oncology dept. which called me yesterday. I now have a slew of appointments in the coming weeks, including CT scans of just about my whole body.

I say all this because I have been keeping all of it from my wife who has lupus and is busy taking care of her elderly parents one state over. She left the day before my mammogram and will return the day before I meet with the oncologist. I have been telling some of it to others but I have missed my wife’s presence and don’t want to dump all this on her when she walks through the door. She will want to problem solve but I know she will be exhausted from taking care of her parents and usually has a lupus flare after their visits. So, thanks, even if there’s no response, it was good to write this and lets me know I need to start journaling about this.

I was stressing about what type of lymphoma, but got written report that shows they are not sure, but leaning towards CLL.

Hi Norma, I’m not sure where we derailed, because I’m in total agreement with you on leaving the need for testing up to our oncologists.
If this is in reference to me asking another member if they had a bone marrow biopsy when they were diagnosed with CLL, that was simply a question. It wasn’t an implication that their doctor was remiss or that I felt she needed one. This was specific to their case and I didn’t mean for you to think that I was saying you or anyone else needed a bone marrow biopsy unnecessarily. But bmb’s do have specific applications that can be helpful when there are symptoms of possible progression of a disease. It’s wonderful that your cancer is stable and nothing more is needed except routine monitoring.

Welcome, @minglu. Wow, when it rains, it pours. I’m so sorry this is all happening while your wife is out of town. And she has her own health issues along with taking care of her parents. Time for a deep breath and slow exhale…

I’m glad that you’ve joined Connect where you’ll find a strong support system. So many of us here have had some form of cancer or been caregivers for loved ones. When you know the specific type of lymphoma I’ll be able to connect you with fellow members who have the same diagnosis.

The positive take-away, very often CLL and many lymphomas are slow to develop and some don’t require treatment for some time. Most are treatable and have positive outcomes.

It can’t be easy keeping this news from your wife. I’m sure you’ve had a million conversations in your head about how to tell her that you may have lymphoma or CLL. She’s had her own health concerns with the lupus. It sounds to me like you two have already been through so much together and this will be one more little bump in the road of your combined life journey. So try not to be too hesitant to tell her. She’ll need to know at some point and delaying won’t change the outcome. I’m fond of the ‘rip off the bandaid’ method. The sooner we face something head on, the faster we get resolution.

You’ll learn more when you meet with your oncologist. Will you please let me know what you find out?

Thanks, Lori, for the hug, comments and future support. Yes, it has been difficult at times, not to clue in my wife but this is best told in person rather than over the phone. So, Thursday afternoon or evening will have to be the soonest. At least some of her other family members are doing better and being able to give her some solid information about what I have learned so far will help her focus. Best of all, she’ll get the option of being able to accompany me to the oncologist appointment and ask all the questions she is good at asking and I never think to ask.

I agree, this isn’t a conversation to have over the phone and can sure appreciate the time frame between your wife’s arrival home and the appointment the next morning. Tight squeeze to find time to be subtle! Having her go along to the appointment will be good, not only for you, for moral support, but also for her to get everything first hand. Plus, at least in my case, having my partner along gave that all important 2nd set of ears. Like you said, she’ll ask questions you didn’t think to ask…I can totally relate to that! 😁 Having a little notepad along for jotting down key points can be helpful and if you have your own questions, the notepad serves as a reference to keep the conversation on track.
It will feel like a long week until Thursday (and Friday)…
In the meantime, distraction is an important tool to refocusing negative thoughts. It’s not easy when you’ve been living in a period of uncertainty for the past month between discovery, diagnosis and not being able to share with your wife. It weighs heavily on the mind. It’s important to focus on the future, occupy idle time with meaningful, relaxing activities that you enjoy. It really can help calm the inner turmoil.

I’m missing one of my best relaxing activities, archery (which helped me notice the lump, by the by) but I still have walking. Thanks to Mayo, I also have this site. It is more than I expected.

Thinking of you and hoping everything went well with updating your wife about your health. I know you were really concerned with sharing the news and the impact it would have on her.
Wishing only good news with the oncologist appointment today. Was your wife able to go along with you?

My wife chose the “ rip off the bandage” approach and we had a good talk. She’s still processing how much I kept from her. We went to the appointment together and she was a great help before, during and after.

The oncologist is positive that I have CLL/SLL and I need to do another blood test to ascertain speed with which it will develop. For now, she’s going with slow growth, so no treatment.

Meanwhile, she is referring me back to my primary for follow up on the nodule found on my lung and luminosity (I think) of pelvic and spine.

Given all this information, do you have group recommendation(s) for me? Thanks in advance.

Hi @minglu. I had a feeling your wife might be the ‘rip off the bandaid’ type of person with the way you described how she’s more likely to be the problem solver. I’m the same way with wanting to just get things over with or have a plan and move forward.
CLL/SLL are forms of non Hodgkin’s lymphoma and generally take their sweet time in developing and often treatment can be delayed. It is possible to have both at the same time. CLL and SLL are virtually the same disease. They are defined by where the cancer cells are located. When the majority of the cancer cells are in the bloodstream and the bone marrow, the disease is referred to as CLL, although the lymph nodes and spleen are often involved. When the cancer cells are more localized in the lymph nodes, the disease is called SLL.

Here’s more of that explanation in this conversation with @tatayababa
Diagnosed with asymptomatic CLL 6 years ago: Starting to have symptoms
https://connect.mayoclinic.org/comment/815368/
There’s no shortage of discussions in the forum with CLL or SLL members. I did a quick scan but didn’t quite know which conversations to flag for you. So I chose a few that I thought might be helpful. These were replies I’d written a while ago but they’re still relevant for your situation.
Here are 4 of the posts:
~Non Hodgkin's Lymphoma- Watch & Wait Approach
https://connect.mayoclinic.org/comment/1042622/
~~
From another discussion: Just discovered I have leukemia:
https://connect.mayoclinic.org/comment/1043133/
~~
There are several discussions with @joeeduffy whose husband was diagnosed with CLL a few years go.
https://connect.mayoclinic.org/comment/1007740/
~~
Can CLL Change to SLL with @traillens47
https://connect.mayoclinic.org/comment/1123809/
Also, many more can be found by typing in CLL or SLL or CLL/SLL in the search bar above.
Here are my 2 searches.
For SLL:
https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=SLL#discussion-listview
For CLL: https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=CLL#discussion-listview

I’ve given you a lot of reading material to get you started. Please feel free to jump into any conversation that sparks your interest. It can be helpful to tag someone with their full @name, including the @ sign. Or simply reply as you’ve been doing in the window that opens up when you click the blue reply button in the comment you’re reading.

Would your wife be interested in Lupus/autoimmune groups? They can be found with the similar search.

One post gave me perspective on CLL and I hope the poster pops up again in response to this. I promise I will bookmark her response if she does.

I recall her relating that she has had CLL for something like 30 years. Several times during that time period, her white blood count got too high for which she had treatment. After treatment, she continued on with her life. I can easily live with biannual blood draws.