Non Hodgkin's Lymphoma- Watch & Wait Approach

@vanveer21 Here is a link that Mayo Clinic put out there about Dealing with anxiety.. Maybe something in here will help you as well?
https://www.mayoclinic.org/diseases-conditions/non-hodgkins-lymphoma/in-depth/dealing-with-anxiety-after-non-hodgkins-lymphoma/art-20426124

@vanveer21 I want to welcome you to connect. I completely understand how you feel. I work in the travel industry, and when I was first diagnosed I was beyond panicked. I was actually a close state of constant hysteria. Especially never being sick before, and I run a travel company. I get the hard to plan ahead and worrying stuff. Please DO NOT do that.

It is now 3 yrs and 7 weeks since I was diagnosed, with a stage 3 Follicular Lymphoma.
Every ache and pain I do blame on Lymphoma. I won't lie. I could get a paper cut and the thought crosses my mind is it lymphoma? seriously it plays with your mind. If it was serious you would be grounded. Just remember that...

There are no aches, and pains that it causes that I know or have felt. At least not at this stage of the game.
When they first diagnosed me, I had several enlarged lymph nodes. They were found on a fluke, after catching H-Pylori traveling in a third world country. The Doc ordered, a colonoscopy and endoscope. They found a precancerous polyp in my colon. It turned out to be a stage 1 cancer.
Which then prompted the CT scan .

That Ct scan found the FL . So talk about having a heart attack. 2 primary cancers in a 2 week time frame.

It takes years and years for this type of Lymphoma to create any problems. 1 out of every 3 people with FL will ever require treatments. BTW I was 53 when I was diagnosed.

3 months after my first CT scan I had another Ct scan, and they repeated that every 3 months for the first year.
With every Ct scan the lymph nodes shrunk. Then I went every 6 months of Ct scans. Then to once a year. I am back to a 6 month scan next month. One stupid node grew a minor amount so hematology wants to scan me again. I have perfect blood work.

You would not be able to tell I have lymphoma by my blood work.

You want to be on a watch and wait approach. That is best approach. Chemo or radiation does not offer a cure. It only offers us some relief of symptoms. If you have no symptoms of night sweats, high temps or weight lost. Then don't worry. It typically attacks our pancreas first. But it will take years to do that.

How did they find your FL? Did they give you a stage?

So you know I have a client who was diagnosed with FL at 19 yrs old he is 59 yrs old. They gave him Chemo and Radiation each time his lymph nodes swell. Today he is 59, and now has Leukemia from all those treatments.

Hang in there. Try not to let it stress you out. I know its easier said than done. I promise you will be fine. When I stopped worrying about it after I made myself nuts for months, my life got back to normal. Sadly all the stressing did was put 15 pounds on me.

If you need anything I am here, and so are many others you can chat with.

Hope to hear from you soon?
Jackie

Welcome to our world... Wait and watch, sometimes referred to wait and worry, is something you will get used to. Just gonna take some time to digest your diagnosis and going to those dark places every time you feel an ache or pain...But over time with good scans and blood you will get used to your new world. Was diagnosed almost 2 years ago and am just getting past that initial "kick in the stomach" feeling and overall anxiety that follows diagnosis. Stay active. Eat healthy and enjoy your good health...All of us would agree, it could be a heck of a lot worse...Stay strong!!!!!!!!!

Was just diagnosed with fl about 6 weeks ago, 57 yrs old, airline pilot. Watch and wait. Luckily the faa medical staff was understanding of my asymptomatic status and gave me a special issuance medical certificate that requires reinstatement every 6 months with blood counts and scans. At least my life is not completely turned upside down yet. As soon as I require treatment I will be done flying unless I ground myself before then, since I will not take on my responsibilitie to my passengers and employer when I feel unfit. The only problem with the “wait and watch” , being a fairly active 57 year old, is to determine whether the normal aches and pains of everyday life are lymphoma related or not. Also, has anybody ever had a second opinion with a different outcome? Just wondering! Thanks for any input.

This is awesome! I am going to share this with others. For those of us on 'Watch & Wait", I believe God (or whatever higher power that guides you) has given me this 'wait time' to help and encourage others through their cancer diagnosis and treatments. Everyone handles treatments differently....both mentally and physically. Since my last infusion in the summer of 2016, I have been making plans to go places and to work on renovations about which my husband and I have only been thinking. No more procrastinating. For me, having lymphoma forced me to consider my real purpose of my earthly life. Stay strong and help others to stay strong!

Great shirt and nice photo. My friend sent me a poem when I was in chemo with a roaring tiger (my nickname)

Fate whispers to the warrior,
"You can not withstand the storm."
The warrior whispers back,
"I am the storm."

Hang in there. gp

Thank you for responding.
@stephaniet I love your shirt. That is great.. stay strong and keep a positive mind. You can get through this.
I understand the anxiety. I go through that too, like every up coming CT Scan..
@njnana if we can keep our minds strong we can bet this. I have read about people and met people living a very long time with this disease. We just need focus on life and let the disease rule us
@ginpene god bless the treatment worked. Now just try and keep a strong positive mind. That's what I try and keep doing. Although I will admit when I get my blood work and ct scans I tend to get anxious.
We are all going to live a long time cause we are all warriors.
🙂
Jackie

Thanks to everybody for checking in. After surgery and chemo in 2017 for stage 1 Non Hodgkins Lymphoma found on a fluke, my doc in January 2019 says I am cured and just need yearly checkups with PET scan, unless I have symptoms. So I feel pretty good, but worry about recurrences no matter what he says. I hope all of you do well. You all sound so much more challenged and braver than I feel that I have been. Hang in there, Warriors. gp

This is absolutely awesome! We all need to be warriors to remain strong!

@travelgirl funny to be called a Lymphoma Warrior...my sister just sent me this shirt, along with WonderWoman socks...shirt says “WARRIOR”!