Non Hodgkin's Lymphoma- Watch & Wait Approach

@sograteful I just wanted to check in and see how your Dr's appointment went on 4/1?
Hope it was all good news?
Jackie

Thank you so much Jackie. It's so informative to hear the actual diagnosing procedure from a veteran.
I also imagined that there would have to be more than swollen glands. I weigh little anyway - 98lbs at 5.3in. I did lose a little more in the fall. Now I am back to normal.
I really would have not rushed to "investigate" at all, but I see this doc anyway, every 6 months, so I am bracing myself for April 1st. He seemed concerned in September.

I wish you a lifetime more of symptom free, great health.

I will keep you posted on what the doctor decides.

Thank you again..
Bridget

@sograteful Swollen glands does not always mean lymphoma. The three major symptoms when it is active is drenching night sweats, weight loss without trying and a fever that will not go away.
In order to find out why my lymph nodes swollen? They have to biopsy the fluid inside of the swollen lymph node. Then they will do a Pet Scan and if the lymph nodes light up on that scan. The biopsy confirms the type of lymphoma. Which is what they did to me.
Then every 3 months for the first year they want blood work and CT Scans. So they can watch what the glads are doing. Mine shrunk with each scan.
Then they move you out to every 6 months. blood work and Ct scans. If it all looks stable. You get moved to 1 yrs. scans and every 6 months blood work.
After 3 years if everything is stable you visit the Hematology Dr. once a year.
I am guessing will go on, till we are 110 years old?
Cause with some lymphomas you can live that long. 🙂

I wish you the best..
Jackie

I have an appointment with my endocrinologist on the 1st April. 5 months ago, he noticed that I had swollen glands in my neck. I see him every 6 months as I have hypothyroidism. I had a bout with tonsillitis last summer, and they have been swollen since then.
Long story short, he said he didn't like the feel of my glands, particularly on the left hand side, saying it was more than 2cms. He insisted that the tonsillitis was long over with, and my glands should have returned to normal. He wanted to do an ultrasound and maybe a biopsy. I was leaving for Europe in October, so I postponed.
I feel fine, no night sweats etc, and my blood work was okay in Sept. My glands currently are still swollen. I know he will whisk me in for an ultrasound at my next visit.
I have been reading your informative and enlightening forum. Thank you for sharing your experiences with us all. I really appreciate all the information and advice you offer in such a warm hearted way.

@dianebrumbach I see you are new here on connect. I would like to welcome you to the community.
If you don't mind me asking, How was your lymphoma found? Did they by any chance, mention which type? There are about 65 different lymphomas.
Many are super slow growing. You could live an entire lifetime and never need a treatment.
@njnana is correct staging is just a number.

Don't be alarmed by stage once you know. It depends on location and if organs are involved. So many types of cancer cells are very treatable for a quality life. Years ago Stage 4 did not have a positive outcome, but today thanks to research and more treatment options, it is a number that helps doctors determine best treatmentfor you. Wishing you the best results!

I too was just diagnosed. Scary. I go for scans Friday to determine stage

Thank you. A hopeful story. 7 months since my diagnosis.

@pammyzammy Welcome to connect and Thank you very much for sharing your story. It brings much hope to those who been diagnosed with NHL. I have been on a watch and wait approach for a little over 3 yrs now.

I just had my followup check up and since it has been over 3 yrs now, I been told that I only need blood work and Ct scans once a yr . I have had perfect blood work the entire time. The lymph nodes near my aorta are enlarged and are considered on the smaller side. I do not have night sweats, weight loss or unexplained fevers. If it wasn't for a CT scan you would never know I have signs of this disease.

I had colon cancer which is how they found the NHL. The cancer marker for colon cancer show no evidence of disease. So they are fairly certain that is was all removed.

The first 3 years after diagnosis is a tell tale sign if these diseases will become troublesome according to my hematology Doctor. So far so good for me too. He feels that my Follicular Lymphoma will not require treatment for years to come. He can't rule out I wont need a treatment at some point. But as of now not to worry having NHL.

I hope both our stories inspire others with NHL.

Again thank you for your post.
Jackie

Hello, I have Mantle Cell Lymphoma, just heard a mention of indolent MCL. I did not know it existed. Another example of who you talk to and what info comes out of the conversation. I have been happy with my Dr. and I feel he is doing his best but it seems to be a learning process for both patient and
Dr. I now have a new dilemma. I am relocating to Arizona from the east coast and need to find insurance and Dr.(Kaiser Permanente is not in Az.) Need
some advice but not sure where to look for it. Dr. is primary and whatever is needed for insurance. I was diagnosed 2 years ago and after treatment I am
in remission. Thank you