Follicular Lymphoma: looking to connect with others

Hi everyone,
Looking for people who can relate. I was diagnosed with follicular lymphoma last week and am trying to learn about the disease and unpack all the emotional baggage that comes with it.
I'm an American living abroad, and I'm hoping it's all right for me to participate here, as I have no information on support groups where I live, nor do I speak the language well (Swedish).

I posted a couple of days ago but got 0 responses, so giving it another try.

Hi back at you, I’m in the United States. I have MGUS, a non specific condition that can progress into a number of different cancers, Follicular Lymphoma being one of them. My condition is precancerous as my blood and body determines what cancer I’ll finally get. At present, the direction I’m headed for is a Non Hodgkin’s Lymphoma. My bloodwork shows my B Cells are already involved and mutating, while my lymphocytes are below normal, my neutrophils are above normal. Platelets are nearly below normal while my White cell count is headed upwards. I’ve be diagnosed with Kappa light chain IgM immuglobulin with a level of M Spike at 48.89. I know I’m still in the process of getting NHL with my lymph nodes above and below midline already involved, including the Lymphatic drainage system blocking up.

Since you’ve been diagnosed with NHL, you might be able to clue me in on what I have to look for as my body progresses. I know it must be scary for you, being far from home, dangerously sick, with little resources to rely on. So you can talk to me if you want and we can comfort each other. @becky1024

Thank you, Becky, for your response. I'm so sorry you may also soon be traveling this path. I'll compare your test results to mine later. The first noticeable symptom for me was a pea sized lump in my groin, which has grown to about the size of a golf ball over the course of a little over 2 months. The first time my regular doctor checked it, she didn't think it was cancer, but requested an ultrasound just to be sure. Well, surprise, here I am carrying not one but two tumors (the other is in my neck).
What scares me most isn't going through this in Sweden or even that it could get the better of me, but that I have a young son who will be witness to it all.

I understand your concern for you son and the trauma of seeing your body failing you. I was just 7yo when my daddy was killed in a coal mining accident. It was such a traumatizing experience to me at that age, I mourn him yet today, 72 years later. In 9 more days (August 20th) at 11:45am, he left me forever and it won’t be to much longer before I join my family again.

You description was very scary to me because it’s happening to me exactly as you described your symptoms. It’s only been about 2 months since my lymph nodes started acting up. Like with yours, certain ones are bothersome. The left one under the jaw and neck, makes it feel like I have a sore throat but its not inside my throat. Both armpits make me feel uncomfortable when my arms are down but eases up when I put them up in the air. The right groin one is scaring me, it was the first one to act up besides the one under the left jaw.

I researched enough to know I’m headed for trouble. What makes this so messed up is the fact this all this is progressing directly from my Kappa light chain IgM MGUS rather than from the bone marrow or lymph nodes. With so many rare things wrong with me, that’s terrifying because it means I could be developing a very rare form of Waldenstrom Macroglobulemia which is an extremely rare form of NHL. If it’s true, I’ll be 1 of 3.5 people in the United States that have this form of NHL. It’s incurable, aggressive, does not go into remission and very lethal, over 80% die from it. That’s why I purchased my burial plan 10 days ago and picked out my headstone.

How old is your son? Try not to focus on the negative aspect with your condition. Stress is a friend to cancer. Try to do more things with your son, teach him things you may not be around to when he’s old enough. I once gave this advice to a man who’s son was taken away from him with no visitation. I told him and now you, plan for the occasions that you won’t be there to see them with him. A birthday, Christmas, graduation, whatever occasion you deem important between a parent and a child. Mark the occasion on a card and put a message to him from the future you. Then store them all in a place were he can’t discover and leave the whereabouts with your legal will. Hope this makes you feel just a little happier knowing you’ll be with your son in spirit if not in person.

That prognosis sounds really scary, so I can understand your actions. At the moment I am in the lowest risk group, but I'm neither taking that for granted nor trusting that things will stay that way. My son is a two and a half year old bundle of energy, and the poor little guy understands at some level that his mama is sick. He started asking if I was ok even before my diagnosis. We're making it a point to get out and do some of the fun stuff with him that we couldn't do up until now because of covid restrictions before my husband starts his new job. I'm making sure photos are taken, of course. The card idea is a better variation of an idea I had. Thank you for that. Exhausted momma signing off for now...

Yes it is a scary thought to where my body is headed. My problem is to many major health problems happening at the same time and all potentially lethal. I try to keep focusing on the positive things in my life, but like today, my heart is acting up. Yesterday, the symptoms of the baddies feasting on my body had me crying as I looked in the mirror after showering. All I have left to my breasts is the mammal glands, I’m down to an A cup from a C cup, they ate all the fat that Mother Nature placed in them. So today I went out and bought new things.

I take no pain medication because how will you know if something’s getting worse if the drugs masks over the pain. So I developed a way to ease my pain but there’s to much of it now. The baddies must be in my rib cage, it’s really hurting right now and my lymph nodes are on the rampage too. In Walmart today, I was trying to brighten my day by singing my favorite Christmas song, Jingle Bells. The other week, I was dancing down a aisle when Bruno Mars was singing Uptown Funk. Another thing I do is to go out in the parking lot at Walmart when it’s raining and start singing “I’m Singing in the Rain!”

I remember when my daughter was that age. I think girls are so pretty at that age between 2 and 4. I also raised my grandson from a baby till he was 12yo. Never had a lick of trouble with either one, till she turned 10 but my grandson is in the military and doing great. She’s a nurse now and finally settled down. You and your husband just have the one child? Well, guess I talked to much again but I love to share my knowledge from almost 80 years on this planet. Take care, just take life one day at a time. @becky1024

Hi @caracello22, I’d like to add my welcome along with Becky’s and bring a few more people into the discussion. You’ll notice that I moved both your discussions about Follicular Lymphoma into one discussion and would like to invite @bogie60 @travelgirl and others with follicular lymphoma experience to join the conversation.

You mentioned that you and your husband would like to have another child. Please mention this to your cancer care team. There may be ovary/egg preserving options for you.

If you need some tips for navigating the Swedish health care system as an American abroad, @astaingegerdm may be able to offer some assistance, although she’s been in the US for decades now.

I’d also like to introduce you to @jessica0 who knows first-hand what it is like to deal with a cancer diagnosis while raising toddlers. She was diagnosed with Hodgkin’s lymphoma while her children were very young.

Caracello, do you know what the treatment plan is for you?

Hi Colleen,
Thank you very much! The way this is handled in Sweden really is very different. I think most Americans would walk away from their first appointment having been told "You've got stage __ follicular lymphoma." Here they don't talk about it in terms of stages. I walked away from my first appointment with the knowledge that I have a 2cm tumor in my groin (knew about that before) and a 10mm one in the lymph nodes somewhere in my right neck/shoulder area (didn't know about that one). I was expecting to be told either that it was incurable and I had roughly __ amount of time to live or that it would be treated with chemotherapy. My treatment plan is watch and wait at the moment, with blood tests every 3 months and a CT scan once a year. I have several concerns and a myriad of questions. Here's one: My doctor didn't mention it, but I saw in my CT scan report that I've got a 4cm benign mass of some kind (the report said cyst? Lymphangioma?) in front of my psoas. I'm wondering if it's wise to do something about that, and if so, what? It also mentions something in my adrenal gland.

I did mention to the doctor that we had been trying for another baby. He didn't say anything about the options you mentioned, but that is perhaps because we were trying naturally. I say 'were' because in light of this diagnosis and the fact that I have no idea whether a pregnancy would put my life further at risk or whether it's wise to give birth again knowing my life span may be fairly short (to say nothing of whether this disease would affect the baby), I decided to put trying to conceive on hold. Are you talking about harvesting eggs? What can be done to preserve my ovaries? Providing of course I'm able to carry at all- I am 44 after all.

While I wouldn't wish this disease on anyone, I hope those you have mentioned (and perhaps others) would not mind talking with me and sharing their strategies for coping with it. @jessica0 I would be very interested in talking to you about what it's like raising children while coping with cancer and how you or others help them deal with their emotions around the subject.
Thank you, and thanks to any and all who are willing to share or educate me about this new path.

Caracello, thank you for the detailed reply. I hope Jessica will join us too.
By the way, I'm a professional horn player and played in many opera pits in Germany a couple of decades ago. I loved living in Europe.

Yes, I was referring to options like harvesting eggs and ovary preservation. These are things to make your oncologist aware of when and if treatment is required. It sounds like you're thinking otherwise at the moment, but it never hurts to mention family planning to your care team. They may presume this is not of interest to you since their focus is on your health.

Watch & wait is a common approach to follicular lymphoma as you can see from this related discussion:
- Non Hodgkin's Lymphoma- Watch & Wait Approach https://connect.mayoclinic.org/discussion/non-hodgkins-lymphoma-watch-wait-approach/

Some people find it un-nerving as the name implies "doing nothing". I prefer the treatment approach to be called active surveillance since it is an active treatment of watching and taking action if and when necessary. Sometimes that isn't necessary.

@lisaok, who has teenage kids may wish to join this conversation too.

Here are several discussions about dealing with emotions and cancer in the meantime:
- Cancermania https://connect.mayoclinic.org/discussion/cancermania/
- Stress Management for Cancer: Free online course from Mayo https://connect.mayoclinic.org/discussion/stress-management-for-cancer-free-online-course-from-mayo/
- Cancer: Nothing about this is normal. https://connect.mayoclinic.org/discussion/nothing-about-this-is-normal/

How are things going today?

Hello @caracello22,
I have been receiving immunotherapy for the last five years going on six & been doing much better year to year. I was diagnosed three weeks after I had my beautiful daughter & my wonderful son was only one at the time. There were lots of bumps along the way but my children were what kept me distracted and driven. My goal was to get back to caring for them like I always saw & dreamed about. When they were little they just didn’t understand that mommy had cancer & it was a normal thing to have their grandparents around who helped us tremendously. Now my daughter turns 6 next month & my son is seven so we now have had a lot more conversations about mommy’s cancer. Actually the first conversation started very organically because my son said that their fun run fundraiser at school was started because a student there had cancer. I told him that mommy knew her and her family because we had to do our cancer treatments together sometimes. He then stoped and said “wait, you have cancer”? He was of course shocked & my daughter & him had lots of questions. They now can see cancer differently though because our family has fully transitioned back to normal while I am still taking my immunotherapy. What they would expect from a mom I am able to do now independently. I enjoy taking back my motherhood duties that I fought so hard to have back. Evan though the days are long I still enjoy dealing with the everyday problems much more than any cancer related issues. When I have to deal with the cancer issues I have a wonderful family support system behind me and my doctor and nurses know me very well.
My best advice is to ask for the help with raising your family. My in laws went above & beyond their grandparent duties and our whole family was able to rebound off of it. My kids now have an extremely close bond with their grandparents too since they were so helpful through it all. I hope what I shared somehow helps you with your situation.