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Follicular Lymphoma: looking to connect with others
Blood Cancers & Disorders | Last Active: Apr 22 12:26pm | Replies (26)Comment receiving replies
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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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.