hubby waiting for a diagnosis? Incidentally found Multiple enlarged lymph nodes in abdomen

Whitepony -- I have been in a similar situation with incremental growth (less than 10mm) in one or more nodes between scans. I learned the hard way not to spend too much time worrying about it. I worried about it quite a bit, and it drove my doctor and wife nuts.

What complicated matters for me beyond the incremental growth between scans was that I have had atypical symptoms throughout my five years of on-again, off-again treatment and observation. The symptoms ultimately were/are related to the lymphoma, but it took years to really determine that and it all caused a lot of unnecessary anxiety from me. But, to cut myself some slack, if you are in watchful waiting mode, and you also have symptoms that you know are being caused by the lymphoma, it makes the waiting part infinitely more difficult.

The thing is, I was never in any real danger, and I believe that I'm not in any imminent danger now. You can have incremental growth with this lymphoma, and even some "hotter" than usual FDG activity picked up by a PET scan, and still be perfectly OK not to intervene for years. That is my situation now. It took me a lot of work and ultimately the threat of my marriage breaking down for me to accept that I would be OK for now, and there was no point worrying about all the future worst case scenarios I was conjuring up in my head.

I'm not saying it's easy, but if you can commit to trusting your doctor when they say the incremental growth is not a concern for now, then take it at face value and focus on other, better things in your life. It's unfortunately something that almost all of us have to deal with in living with this dumb disease. But it sounds like your husband is pretty Zen about it all so far, which is great. Best of luck to both of you.

I read your post hear little and I skimmed through few - I did not have same cancer as your husband, but I got T cell Acute Limblastic leukemia when I was about 34 33 back in around 2012 so and I did not get official cured till about 3 years ago in the 2020 to 2022 time range.

Hopefully your husbands experience is not like mine, but I found issues with work and jobs then I did with the cancer treatments. I suppose out of all of it hardest part for me myself when came to treatments was being told I would never be able to have kids.

that kind of sucked because I was just in my prime and starting to take things more seriously and was at height of my education and career in way making okay monie and was just got a place of my own here on farm and then got that tossed at me, cancer cost me ability to have kids, costed me my job, and my education I guess cuz I have 70k$ degree that seems to be worth less and girl I was just bought a ring for and gave to her left me week after learning I had cancer both my parents died during that time period and my best friend, so I was pretty lonely towards end of my treatment.

anyways I seen that you said your husband was 40 and that was only 7 years older than when I went through my stuff, so it just caught my eye I guess.

thing that usually gets me buy is thinking that there always someone who is getting buy who has it worse than myself and there surviving.

hope things going okay for your husband and yourself.

to Whitepony

just take things one day at time and make most out of it and experience have, I think the part that hardest is after being cured, work it may be easier with more modern treatments perhaps, when did mine there was no stem cell transplant stuff, so I had to use treatment that came out in the 60s where they just hit you with as much chemo as possible of all types, and as stated was not till 2019 when they had trail testing for stem cell and I entered into that program that I got stem cell transplant and cured, other whys the cancer was showing signs of remerging.

the other things that are nice about Obama era health care and post is health care insurance, when I started my treatment there was no obama so if you lost your job you got kicked off your health care and you had to go on cobra, I was on cobra for quit while till obama changed everything, cobra ran me close to 900 months.

I was lucky that my parents' family where upper middle family and older where already well past retirement age, but it was really hard on them mentally specially my father, my mother died during my treatment stuff and my dad end up mentally breaking down bit with alzheimer's so towards end I had to take care of myself plus him, eve thought we live only 30 mins form a major hospital in Sothern WI there was no services meals and wheels does not even come out here so I could not get any one to help me watch my father anyways. by time covid came around and took my friend and my dad I had already had the stem cell transplant and was about 2 years out from my last treatment.

I think today's world, is bit diff for people who going thought treatments of any sort, I am sure it's not pleasant, but I think the experience is much better along with the treatments.

the hardest part been after fact for example jobs at least for me, trying to find company that give me shot at doing what I have my degree and around 15 years of experience technology field been impossible to break back into, so I am just sitting on very costly degree that no one will accept and years of experience that no one seems to care about.

anyways like I said I would think that things be fine for you and your husband but can never be sure.

for myself from start to finish, I never worried about myself, I worried more about my parents during that time period, I am sure same might be true for your husband, he probably worry's more about the people who cares about than himself.

Whitepony, I’m relatively new here and just came across this conversation. In response to your very first, long ago question, I was diagnosed under circumstances similar to your husband (an “incidentaloma”). In my case, it was a single, slightly enlarged aortocaval lymph node shining brightly on a PET/CT scan that prompted the recommendation of a biopsy. Because of the location of the node, however, the interventional radiologists at the medical center where I was being seen did not believe they could biopsy it without open surgery, and they recommended a re-scan in 3 months. I instead sent my imaging and labs to a major cancer center hospital for a second opinion. They were able to do a CT-guided needle biopsy (FNA and core) that indicated follicular lymphoma, low grade. They could not run all the other tests they ordinarily could with an excisional biopsy, but there was enough for a definitive diagnosis. Bone marrow biopsy was next (negative). I started treatment last week, and of course, with this diagnosis at this stage, all is going very well.

I hope your husband continues to progress slowly, if at all, feel well, and at some point is able to get a diagnosis. It sounds like you both have adjusted very well to the watchful waiting. In my case, the second opinion (moreso the ability to get the biopsy) was helpful in putting my mind at rest that I knew what I had and what could be done. And the ability to stop waiting and DO something about it was a relief. I understand that’s not always possible with FL, and not everybody approaches these things the same way. And at some point in the future I may encounter the challenge of watchful waiting. Until then, like all of us here, onward….

Glad to hear everyone is doing well. Whitepony I seriously don’t think your husband will receive treatment without a diagnosis. What makes you think he has lymphoma? The symptoms could be common to many different conditions, most of which are benign. Lymphoma is a blood disease and can occur anywhere blood flows and not just in lymph nodes . Mine was stage 4 when diagnosed and largely extra nodal including in my bone marrow. Even with 2 relapses I have never had a palpable node. I had one lump on my clavical but it was removed during shoulder rotator cusp surgery and found to be benign. I think it likely that was a false negative. I sincerely hope everything goes well for you. I am not sure where you live in Europe but based on my extensive travel/work there I know medical care varies widely between the various EU countries. If indeed he is diagnosed with Lymphoma you may want to go to MD Anderson or Duke for a second opinion before having him treated.Best wishes! Thanks for checking in. We all benefit from these exchanges! I know I do. Fighting this thing for 12 years has taught me the importance of being your own advocate! Trust but verify! Be skeptical.