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.

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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?

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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.

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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.

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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.

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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.

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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?

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