Lauren2
I was diagnosed a year ago with follicular lymphoma. I have five children ranging for 14 years to 26. My mother passed away from pancreatic cancer when I was 22. I remember the day like it was yesterday when she shared with me that she had cancer and that it was terminal. 30 years to the day she passed away, I found myself visiting g an oncologist for the first time at the same age as my mother was when she passed. Life can be crazy…. It took over three months for my diagnosis and my kids knew something was up. I knew I had to tell them but I wanted to protect them as well from many of the same things you are worried about as well I’m sure. I finally drummed up enough courage and had a family meeting with everyone at the same time. I shared what I knew and what was coming up in the future. I explained that there is so much I don’t know as well. I’m not going to lie, it was tough and there were a lot of tears, but this is something that affects our entire family. They need my support as much as I need theirs. We are all different and our family dynamics are different, but I’m sure the love you have for your children is not. Do what you think is right for your family. I would be remiss if I didn’t say my wife has been my rock through this entire ordeal. As it relates to coworkers I didn’t want to be “that person” that everyone looked at and felt sorry for and ran away from in fear. I found that the way people interact with you after finding out is directly related to how you react to it yourself. Be positive and be honest and know that you don’t have to share this with anyone if you don’t want too..
I also wanted to share that you shouldn’t get hong up on those publicized average survival rates. Many of the rates are based on data that is 15-30 years old. Even some of the newer studies are using old data. In the last five years there have been so many new treatments for NHL along with new research everyday. I think your oncologist will share this with you at your upcoming appointment. This site has some great resources. Also, make a list of all your questions for your oncologist. I mean all. I spent over 1.5 hours asking questions at my first visit. My doc was very patient and I never felt rushed.
I’m not sure any of this helps but it is one person’s perspective. I will be praying for peace for you and your family as you await your appointment. Doug

Lauren... your almost the age of my oldest daughter.
She lives in our basement apartment with my only grands, a girl 16, and twin boys 14. I too worried who and what to say. My husband went into denial (whole different story setting, lol), my Mom I told last because she's 85 and 5 states away and 12 hours of driving. Dad and both brothers are gone from cancer (smokers). 2 daughters are estranged and I choose not to contact them due to I didn't want pity ... I want sincere love and didn't want to doubt their motives. But the grands. The reasons besides my furbabies that keep me moving, and allow my sense of humor to overflow, lol. They have lived with me 95% of their lives. I was the one to do egg hunts, Santa visits, even Build a Bear when working, lol. I thought HOW could I make this easy since I don't have a choice?
So when I told them, I made sure to tell them my cancer wasn't heritatary! Then I asked them what they thought about IF I were to have a treatment that caused me to loose my hair... would they join in on my planned head shaving party? I had spoken to my hairdresser/friend and asked if she would come to my house for this prior. I wanted the Grands to do the shaving (wacking) but for her to keep them from cutting me!
My granddaughter excitedly said "I'M FIRST!" LOL Your getting the old man buzz! Grinning like crazy!
I said this is what I want, to make this as fun/humor-filled as possible! And if my skin can handle it, I want to have a Henna party shortly after to cover my grands handy work over Kojac crown! All three liked the idea. Even hubby wants to wack my hair! I planned to video it so I have the memories of joyfulness.
There's also the impact I have recently found I didn't expect so with this... my personal opinion is to wait until the New Year if your health allows.
My Mom. .bless her heart, tells folks. And the ones that know me, CALL ME! They either tell me she can't handle it. Or after getting Christmas cards and just calling her to catch up... they cal me upset with shock about the leukemia and lymphoma. .they just can't believe it, I'm such a good person and they Love me.
I know they mean well, and yes I love them. But it's pity I hear and they don't usually call me... I don't know how to handle it...YET. I am only months into this new life of "C" too. I suggest considering a therapist who deals with cancer to help with these new life style challenges. It won't enlighten you over night as situations don't all come at once. Be Blessed and know you are NOT ALONE! We are with you!!

Our situation was a little different n/c we were diagnosed while in the hospital so we couldn't really tell you anyone anything for while. Plus we have one family gossip that tells everything so most people knew as soon as we knew but had lots of questions.

My mom was diagnosed and most of her relatives here are older so it was important to let them know that treatment is our there. My mom's nephew got colon cancer the month before so adult family conversations were easy. As the daughter I was responsible for reaching out to her friends and keeping them updated. I stuck to being honest about what you do and don't know. No guessing no matter how hard they push.

Re: children and fragile adults
We told them the basics and used a wait and see approach. I have a 14 yr old cousin who is my mom's best buddy. We didn't give her much detail until she was ready. You'll know when they are ready. With young people be sure to let them know they can ask anything and talk about anything. Ask them how they feel about what they've learned.

Lauren, I would say, you will know when the time is right. It was important for me to take the time to adjust and come to terms (calm my panic) about my diagnosis before I told too many people. Like someone else said, right now you are the most important person to consider. Reducing your stress is the best medicine!!

It is an added stress to have to deal with other peoples fear and weird attitudes, reactions, and advice about cancer. It's not your job to take care of them and their reactions. Except of course if they are your children. And then as always it is your job to love them. Getting them to a good cancer support group is helpful for them to be able to share their concerns with an outside (trained) listener.

I find it annoying to listen to people telling me what they think I should do. I just say, "Amazing how everyone wants to tell me what to do! It's hard to keep up with it all! " Or they want to tell me their cancer stories, The most amazing ones go something like this, "My ________had that and died in 3 months!!" Geeze! At first I felt hurt and wished they would give me the attention and comfort I needed. Another lesson in "not taking stuff personally. "

Once I came to terms myself it became easier to stay calm when someone takes my hand and looks deep into my eyes and asks how I am doing. And often if I answer truthfully they look away and change the subject so I have come up with standard answers depending on each person: "Thank you for asking and I'm doing well under the circumstances. How are you?" or " I feel like shit, what's new and exciting in your life?" Be prepared to learn more deeply that a lot of people are basically caught up in their own reality and maybe you are not that important in their world.

For those truly close people in my life I try to imagine how I would feel if someone I loved deeply didn't share their diagnosis and struggles with me. (hurt, untrusted.) ANd it got to the point where I felt uncomfortable not telling the truth. So I knew then it was time.

I wish you all the best. Now that I have gotten used to it, I let the subject come up naturally and feel comfortable sharing. I am relieved to feel free to tell the truth and know I will cope with the reactions.
Hugs and love to you and yours, Becky

Lauren2,
Hi! It is difficult telling people at first. I didn't want to tell anyone except my older children in the beginning. My husband wanted to tell everyone. The positive thing when you tell others is you can reach out for support. I feel since your children are younger I'm sure you'll tell them gently. However, I would not tell them of the prognosis. It will only worry them more. Plus, non of us know when God will take us home with Him anyway. There are so many new treatments and trials that in 10 yes things could be so different. I now am glad everyone knows. Plus, it helps me to talk about my DLBCL and try and help others with their journeys. Good luck on your decision. Kelly