Non Hodgkin's Lymphoma- Watch & Wait Approach
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.
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I have heard of the wait & watch medical plan for indolent lymphoma. From what I gather it is because the side affects of treatment (radiation & chemo) are worse than the symptoms which could go on for decades. The applied theory is benefit V symptoms = health risk. You are not alone.
@beckyjohnson Thank you for answering.
Everyone I know with lymphoma has had treatments. I had no symptons it was actually found on a fluke. I was getting a CT scan for another reason and a few lymph nodes near my aorta were swollen. I let the DR biopsy them and the found the wording a few follicular lymphoma cells in the lymph nodes.
Since that time the Lymph nodes have gone down in size. I have had 7 CT scans and each and every CT scan since the lymph nodes have gone down in size. Which leads me to believe that some Lymphomas lay dormant.
Are there other people where the lymphoma has remained dormant their whole life?
Or is the watch and wait a newer way to asses the disease? Cause I am thinking this disease would be considered a chonic condition instead of a cancer?
I was also having routine testing, an endoscopy because of chronic nausea and weight loss, when a node was found. The biopsy was unremarkable, but the Md insisted to the insurance company that I needed a Pet scan. It showed an egg shaped mass in the small intestine. It was removed with resection of part of the small intestine, and the biopsy showed both indolent follicular and large diffuse lymphoma. So I had surgery. They said I had Stage 1 NHL and recommended chemo, which I did. Now they say I am cured. But I think that if it had only been follicular that they might have suggested the watch and wait. I know it is scary not to have them throw everything they've got at it, but I also hear lots of folks do the more conservative approach. As long as the nodes are shrinking, I would probably watch and wait, too. I hope you contine to do well. gp
I'd like to bring @vonbaron36 into this discussion, who I believe is also on "watch and wait" for non-Hodgkin's lymphoma.
@travelgirl Now I'm curious as to the term chronic because it makes sense being that one's lymph system may be benignly affected for a very long time. I will get back to this after some in depth research.
https://search.medscape.com/search/?q=Chronic%20lymphadenopathy This site has several peer reviewed articles about lymphoproliferative disorders (chronic lymphoma?) considered benign on cases that eventually became malignant
Three and 1/2 years ago I had a large tumor on my neck and a small one by my groin, both cancerous.I had radiation on both. A pet scan showed no cancer. There was nothing to do but watch and wait to see if and where it would occur again. I knew my follicular lymphoma was incurable at the time. I did not want to just wait until it came back, and with no other options I decided to research other options on my own. I decided to try curcumin. Over three years later and two PET scans and a CT scan last month found no cancer. I know that it can go into remission on its own, but it makes me feel better doing something that might be helpful. Next PET scan next March.
@beckyjohnson I read in a publication called "The Pathologist" that there was a possibly a chance that follicular lymphoma could be reconsidered as a chronic disease instead of a cancer, cause it tends to go into remission or dormat for years.
My family Dr said he has a patient that is has been 20 yrs and no sign of the disease progessing since he was diagnosed.
In the magazine 'The Pathologist" they published a story Called "The Many Faces of Follicular Lymphoma" written by German Ott. I think you have to sign up with that magazine to read it. That is where I saw the thought of making this a chronic disease.
@vonbaron36 That is great news.. God Bless.
I have heard others tell me that too. A friend of mine had radiation 7 yrs ago for follicular lymphoma and there is no evidence of the disease today. His enlarged gland was in his groin too..
People have said Vitamin C and Tumeric/Curcumin helped. I was taking alot of vitamins after I was first diagnosed. But they made me so nauseous. I stopped taking them all. My blood word has been good and knock on wood so have the CT scans. I go back in September for my next CT scan.
@travelgirl When I was researching HTLV (required test for blood & organ donors) I learned that early detection has gone down while acute diagnosis has gone up. Is it likely the chronicness of the disease tripled with rising insurer expenses & insurance policy limitations contribute to this reversed trend?