Non Hodgkin's Lymphoma- Watch & Wait Approach

Posted by Jackie, Volunteer Mentor @travelgirl, Jun 15, 2018

I would like to meet others who were diagnosed with a lymphoma and are on watch and wait treatment.

I have been on a watch and wait lymphoma watch now for 2 1/2 years. I currently get blood work done every 6 months and a CT Scan once a year.
Has or is anyone else having the cancer monitored like this? Are there people who lived their whole life without ever getting treated for lymphoma?
Would love if we could share our progress on here.
Jackie

Liked by beckyjohnson

@vanveer21

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.

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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!!!!!!!!!

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@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

Liked by mrsalvingraves3

REPLY
@vanveer21

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.

Jump to this post

@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

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@travelgirl

@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

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Jackie, thanks. But I don’t understand at all the frequency of these CT scans. Each time you are exposing your body to carcinogenic radiation. The protocol at my hospital is no more scans—only after chemo therapy, when and if that takes place. Nodes can wax and wane without it meaning anything. Only if there are symptoms/ aggressive spread or organ involvement is that a cause for concern and intervention. Who is ordering all of these scans? I would get a second opinion about that. Good luck to you.

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@susanlim Well I was told in order to stage my Lymphoma I needed to be scanned every 3 months in the beginning.

Plus I also was diagnosed with Cecum cancer so I have Colo rectal surgery watching the area around my stomach. Since I actually had what they call Cecum cancer a rare colon cancer. They are making sure, I guess it was really a stage 1 cancer?

Now my Follicular Lymphoma was located around my aorta. That is the location of the swollen lymph nodes. Maybe because of the location??? They then after the first year felt I was stable to move me out to 6 months did that for a year. Then I was moved to 1 year scans.

Well my last set of scans I believe he said 1 lymph node grew again. They had been steadily shrinking in size. This was last September , when the one grew. Hematology put me back to a six month scan. Just to make sure nothing else is going on?

To be honest when you have as much I do getting monitored. I am down to asking the DR's this at the end of each visit.

Do I need to let the coroner know to be expecting my body soon? And I dying anytime soon?

I am also a Glaucoma suspect. That Doc starts rambling with stuff, I have no clue what he is saying. I just ask him, is it time I order the seeing eye dog yet?

Plus they watch me for a suspicious spot on one breast..

Plus they monitor me for Barrett's esophagus.

Between everything these Dr's are watching I am numb to all of it. They will make you nuts with worry. I just figure I am at that age where Dr's start to torture you?

I have friends my age seeing heart Drs, popping pills, another on diabetes medicine, another is taking pills for lupus, I can keep going with everyone's illness.

I personally do not want Chemo and Radiation. It is my understanding from what I been told by several Dr's only is that needed when it lymphoma proposes a problem. I several friends too with various lymphoma one lady is a stage 4 with crazy blood work. Se feels fine all the time even after of 4 years of bad blood work. No symptoms other than that. She also has an enlarged spleen. They are still watching her. Dr's said there is no need for Chemo at this point.

So honestly I do not understand the treatment. How they choose certain people to give chemo, and radiation too? Or why Dr's all scan people differently?
I figure the longer I have to wait, the better there is a chance, to finding a cure.

Jackie

REPLY
@travelgirl

@susanlim Well I was told in order to stage my Lymphoma I needed to be scanned every 3 months in the beginning.

Plus I also was diagnosed with Cecum cancer so I have Colo rectal surgery watching the area around my stomach. Since I actually had what they call Cecum cancer a rare colon cancer. They are making sure, I guess it was really a stage 1 cancer?

Now my Follicular Lymphoma was located around my aorta. That is the location of the swollen lymph nodes. Maybe because of the location??? They then after the first year felt I was stable to move me out to 6 months did that for a year. Then I was moved to 1 year scans.

Well my last set of scans I believe he said 1 lymph node grew again. They had been steadily shrinking in size. This was last September , when the one grew. Hematology put me back to a six month scan. Just to make sure nothing else is going on?

To be honest when you have as much I do getting monitored. I am down to asking the DR's this at the end of each visit.

Do I need to let the coroner know to be expecting my body soon? And I dying anytime soon?

I am also a Glaucoma suspect. That Doc starts rambling with stuff, I have no clue what he is saying. I just ask him, is it time I order the seeing eye dog yet?

Plus they watch me for a suspicious spot on one breast..

Plus they monitor me for Barrett's esophagus.

Between everything these Dr's are watching I am numb to all of it. They will make you nuts with worry. I just figure I am at that age where Dr's start to torture you?

I have friends my age seeing heart Drs, popping pills, another on diabetes medicine, another is taking pills for lupus, I can keep going with everyone's illness.

I personally do not want Chemo and Radiation. It is my understanding from what I been told by several Dr's only is that needed when it lymphoma proposes a problem. I several friends too with various lymphoma one lady is a stage 4 with crazy blood work. Se feels fine all the time even after of 4 years of bad blood work. No symptoms other than that. She also has an enlarged spleen. They are still watching her. Dr's said there is no need for Chemo at this point.

So honestly I do not understand the treatment. How they choose certain people to give chemo, and radiation too? Or why Dr's all scan people differently?
I figure the longer I have to wait, the better there is a chance, to finding a cure.

Jackie

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It must be the location. Good luck with all of this!

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@susanlim I feel find just tired some days. But i run myself ragged with activities. I am on various boards, and chair person to a couple of groups. I run my own business. Escort groups and travel around the world. I give travel talks and tend to forget how old I am. LOL..
Besides being tired some days I feel fine.
So I am not worried. If you saw my blood work it has been fine. It is possible one day it will come back all screwed up. Then I will deal with it. And probably stop doing not a thing.
Till then Nothing is going to stop me.
We can't dwell on our illnesses or they will kill us.
It good to understand what is happening or could happen. But by no means will I let these diseases or potential diseases rule my life. The ones the Dr's watch and the possible ones that could come up in the future.
I am the kind of person I won't lie, that if I sit and read about prostate cancer, I will start thinking I have it, and I don't even have a prostate. LOL..
I was so happy to find Mayo clinic connect to be honest years ago. It actually helped me, to stop reading everything on line.
I just focus on this site, and I hope to help everyone, not panic like I did 3 years. When I had the double cancer diagnosis.
Cause nothing scares the hell of you more, than being told you have double trouble.
I just let my Dr's worry about it, and I focus on my life not my diseases.
I find it keeps my stress level down.
Now if I could just loose the 15 pounds I gained stressing the first year about what would happen next I would be 100% my old self? 🙂

You have a great day..
Jackie

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@travelgirl

@susanlim I feel find just tired some days. But i run myself ragged with activities. I am on various boards, and chair person to a couple of groups. I run my own business. Escort groups and travel around the world. I give travel talks and tend to forget how old I am. LOL..
Besides being tired some days I feel fine.
So I am not worried. If you saw my blood work it has been fine. It is possible one day it will come back all screwed up. Then I will deal with it. And probably stop doing not a thing.
Till then Nothing is going to stop me.
We can't dwell on our illnesses or they will kill us.
It good to understand what is happening or could happen. But by no means will I let these diseases or potential diseases rule my life. The ones the Dr's watch and the possible ones that could come up in the future.
I am the kind of person I won't lie, that if I sit and read about prostate cancer, I will start thinking I have it, and I don't even have a prostate. LOL..
I was so happy to find Mayo clinic connect to be honest years ago. It actually helped me, to stop reading everything on line.
I just focus on this site, and I hope to help everyone, not panic like I did 3 years. When I had the double cancer diagnosis.
Cause nothing scares the hell of you more, than being told you have double trouble.
I just let my Dr's worry about it, and I focus on my life not my diseases.
I find it keeps my stress level down.
Now if I could just loose the 15 pounds I gained stressing the first year about what would happen next I would be 100% my old self? 🙂

You have a great day..
Jackie

Jump to this post

That is so important. To forget about it as much as possible between tests. One thing you write that makes me wonder was that “1 in 3 FL patients will never need treatment.” Is that so? I am 56, diagnosed with FL only last August, on watch and wait. I was given the impression that all of us with FL will need treatment sooner or later —except those who die of something else, including old age, first.

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@susanlim We are the same age. I was 53 when I was diagnosed. The head of Hematology at Mayo Clinic told me that the day they diagnosed me. He said try not to worry. And it was 1 person out of every 3 people will require treatment. So that means 2 of us will not have an issue ever.. It can transform and if I understood correctly those are the folks who need treatment.

My lymph nodes were on the small to approaching what they consider medium in size. We are all different even though we have the same issue.
I know a man who is Dr he had the lymph nodes swell in his groin. It was follicular Lymphoma he was 47 yrs old at the time. He had them radiate the area. He is now 59 and has had no problems.

I read and been told by many people that Vitamin C and turmeric are good to take if you have lymphoma. I take it on and off. I am not always consistent. But so far so good. I go back the middle of March for my tests. Will let you know what they say?

We need to exercise, get plenty of rest, and eat healthy. LOTS of fruits and vegetables. Eliminate stress in our lives..
No more partying like a rock star not that I did. But no smoking at all or drinking heavily.. I think you can have a glass of wine or a few cocktails each month.
Unless you have the Barrett's like do. all that agitates my throat and stomach.

Jackie

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I am currently on watch and wait program. I was diagnosed April 3, 2017. This watch and wait approach is droving me crazy. I am nervous all the time…every time I have a new pain for a day or two I begin to wonder and panic a bit. Do you have a lot of pain? I sure do

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@travelgirl

@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

Jump to this post

Thank you so much for being so open and honest. Like I said I was diagnosed an 2017. I am stage 4 follicular lymphoma my lymph node was removed the virchow node in my neck was removed and it was found to be cancerous since that time I have another one in the exact same place that's swollen up real big and stays there swollen and they don't want to do anything to it or with it. I've been to Cancer Treatment Centers of America so I've got my second opinion and I guess watchful waiting is what I'm supposed to do. I do argue about the pain though I have been in almost constant pain since three or four months before I was diagnosed I do not know that it is from the lymphoma but I would assume that that's what's causing you very miserable here in Arkansas

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@susanlim

That is so important. To forget about it as much as possible between tests. One thing you write that makes me wonder was that “1 in 3 FL patients will never need treatment.” Is that so? I am 56, diagnosed with FL only last August, on watch and wait. I was given the impression that all of us with FL will need treatment sooner or later —except those who die of something else, including old age, first.

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That is what I was told as well I'm 58 years old diagnosed it 56

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What kinds of pain are you suffering travel girl and salving grace?

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My hematologist sent my results to the nearest lymphoma center and they concurred, watch and wait. I was worried about what seemed to be high suv scores on the pet scan but the proliferation index, Ki-56 I think, on the biopsy was extremely low—so a low grade or indolent diagnosis. I have my next blood work and physical exam ( no more Ct scans unless absolutely necessary—radiation exposure) in two weeks. If all is well I can wait six months for the next. I have a small palpable tumor on my neck (not visible)—I call it my “worry bead” but it seems not to grow. My diagnosis in August shook me badly, and while I still have difficult moments—above all when I worry about possibly not being there for my kids—I am getting used to it. I take curcuma and cbd oil (at bedtime for better sleep) and eat more kale and spinach—togive me the feeling I am doing something. A pity is that I have shoulder problems which seem to be a post operative complication of the neck biopsy. This is being worked out with physical therapy and Orthopedic treatment but is a real downer. I think apart from that I would feel very well and not know I had this.
For all of those newly diagnosed, you will feel better over time I am sure. The first months have to be gotten through.

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@susanlim @mrsalvingraves3 One thing I see we all have in common is Anxiety? This was brought on by being diagnosed with cancer. I think its a fear of the unknown? At least it is for. I also notice that is something I am not able to control. I been a control freak my whole life. So a cancer diagnosis is very difficult to handle. I can't control it's destiny. So that creates the anxiety.

When I was overly stressing, back when I was first diagnosed, I had pains that came from nowhere. Everything hurt on my body. I think I made it worse by reading so much online. The more I read, the more pain I felt. I had to start taking sleeping pills to get through the night. This way i wasn't up all night reading nonstop. I searched how does one die from lymphoma or colon cancer? I kept thinking back to my Grandpa's, and my Mom's deaths related to cancer. And I found myself doing nothing but focusing on dying. I had to change this. There were days I didn't get out of bed. Just read and cried all day. I would compose myself just enough to plan a client trip. Then when I finished that I went back my hysteria state.

It took a good year and half to stop freaking out. It has taken another year to get my confidence back. Going to the gym and working out helped. Taking long walks helped. I stopped focusing o,n my illnesses and started focusing on my life.

Do I have pain? I do every now and then. At times my I get chest pains, pains in my arms and headaches. Now are they related to lymphoma, I don't know the Dr says no. Lymphoma does not cause pain. Have I thought they just told me that so I don'y worry? Yes the thought has crossed my mind. I take a couple of Tylenol when it gets too bad.

We have sluggish working lymph nodes. I think at times they are going to hurt? I just start taking extra vitamin C, enchinacea, turmeric and a couple of Tylenol.
Drink lots of water, get a lot of rest, and a few days later I am usually feeling better.

I firmly believe anxiety plays a big part in the pain I am feeling. So my advice is try and exercise more walk a lot. Just try it and let me know if that helps?
Get out of the house and away from the computer.

Talk to you later,, It's time for me to get some exercise in and off to work..
Jackie…

Liked by mrsalvingraves3

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