hubby waiting for a diagnosis? Incidentally found Multiple enlarged lymph nodes in abdomen
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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.
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Another small update: i ha w just learned that my husband’s blood was last year checked for a long list of (follicular) lymphoma related pathalogical mutations last year. Luckily he doesn’t have a mutation, so it’s good news.
His bloodwork is also normal, and according to his hematologist “no need for therapy” yet. He’ll have a whole body CT scan in november. We’re still waiting for the last flow cytometry results.
so W&W as usual…
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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.
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Dear midn8t,
i’m sorry you had to go all throught this at a such young age. Losing your parents and your best friend while fighting cancer must be really though:/ I don’t know much about your type of lymphoma but i’ve heard that it’a rather difficult one, so it’s really great that you’re cured of it!
Kind Regards,
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So my husband had another appointment wirh his hematologist yesterday. They did another ultrasound on his abdomen but weren’t able to see anything clearly-maybe too much gas in belly etc. Actually the last time the doctor had wanted send him to a full body CT scan but my husband didn’t want to. The flow cytometry results from September are the same as the old ones. They took his blood again ( we don’t know the results yet), but the hematologist suggested this time that he get a PET scan in a couple of months. According to what my husband says he didn’t really insist, but he gave him the option.
My husband is convinced that the doctor has suggested the scan for research purposes.
It’s clear that he doesn’t need any therapy yet and he’s doing well, but i’m starting to wonder whether he’s doing the right thing? Since the beginning of this story the doctors suggested a biopsy, a whole body CT and now a PET scan. I think he should get at least a CT to see if there are other nodes. What do you think?
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in my non-professional opinion - Yes he should have a CT and if warranted by the results a biopsy. If he does not trust his doctor then he should consider getting a different doc or at least a second opinion. Its always best to know what you are up against. It may be nothing. Good luck.
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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.
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Dear ShadyGuy,
Thanks for your answer. My husband does trust his doctor but he doesn’t want to think of himself as a person with the c word. That’s why he’s trying to avoid further tests. He’s still going to his appointments so he’s definitely not in complete denial, but he doesn’t want to think too much about it…
Actually we did get two second opinions. One was a hematology professor, he seemed rather relaxed at first but then called us to say he would consider a biopsy. I consulted (my husband didn’t want to come) another specialist in my home country-he was convinced my husband had monoclonal b-lymphocytosis and told me not to worry.
His own hematologist (whom he meets every 3-6 months) is a member of a renowned university hospital in the city live in. Apparently during one of the board meetings (they call it “tumor conference”) they were discussing about my husband’s case among many others and some members thought it would be a good idea to do a PET scan to find out more about his situation…
I convinced him to get a CT scan next January/February. Hopefully it won’t show anything alarming alarming and he won’t need further tests - at least for another 6 months or so.
I hope you’re doing well and that 2023 was a good and healthy year for you!
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Whitepony - he is certainly lucky you are in his life. I hope all goes well. Just remember, you do not know he has lymphoma. There are other much more serious forms of cancer (for example pancreatic) and a variety of non cancerous conditions which cause similar symptoms. Everyone is a little different but if it were me I would want to know what is going on. We will all be hoping for the best and that it is a simple non cancerous condition. Best of luck. You are taking good care of him!
Thanks for your well wishes. I am ok but will know more in late December. All my best to you and your husband.
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Hello everyone and a little update from my husband:
he had a CT scan last friday and today we got the results. So far everthing seems ok. In fact, mesenteric lymph nodes have gotten even smaller (1,3 to 1 cm). There are also a couple of swollen nodes near kidneys (we already knew about that too, but we weren’t given a size before this last scan), but the biggest of them is rather modest with 1,3 cm.
There is apparently a new node in the thorax region (1,2 cm), so it made us worry a bit about the scale ( and the stage) of the (possible) disease but all in everything seems fine and we’re relieved. In 3 weeks he has a meeting with his hematologist and i’m going to post an update. I know there are lots of people in my husband’s situation (under watch and wait), so even it’s “no news” it’s probably still interesting i guess?
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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….
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Dear Its VeryCalm, thank you for reaching out. I’m sorry you’re going through this but it’s good to hear your treatment is going well.
I have checked your profile and saw that you went to the MD Anderson for a second opinion. We’re living in a European country so i think they would probably suggest you to do w&w here, especially if you’re early stage wothout symptoms. If the nodes are really close to the surface then it’a another story, they say radiotherapy is very effective for that kind of nodes but for my husband it wasn’t recommended since the nodes are located deep in the abdomen. Your nodes seem to be in a similar difficult location so i’m a bit surprised to learn you’re already receiving treatment. I’d be really happy if you could tell a bit more about your doctor’s opinion and your treatment plan.
I wish you a speedy recovery!
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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.
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White pony thank you for the good wishes. And sure, I’m happy to share more about how I arrived at this point. Since the PET/CT indicated only one affected lymph node, my FL is considered localized — suitable for and amenable to radiotherapy with “curative intent.” The location of it did not seem problematic to the treatment team. So I’m having radiation of the node and some margin of the area surrounding it. I had my 4th of 12 treatments today (total will be 24Gy). I will have a PET scan on Thursday and then start a brief series of Rituxan infusions on Friday. Initially, my treating oncologist recommended the radiotherapy. I was later contacted by the radiology oncologist about participating in a clinical trial for stage 1 FL patients that is comparing radiotherapy alone to radiotherapy plus Rituxan. When I learned of the trial, I asked my treating oncologist whether I could have Rituxan added to my treatment plan (I had been thinking of this for some time, but thought it would not be possible). After some conversation about pros and cons, risks and benefits, he agreed.
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Dear ShadyGuy, thanks for your answer. Hopefully everything went well at your last appointment. My husband does have an “Unspecified B-Cell Lymphoma” diagnosis in his patient acts. His doctor has told us he gave the diagnosis to facilitate his scans etc. On the other hand, he wouldn’t be able to get a life insurance with this record…It feels a bit weird. It’s the combination of the releated positive flow cytometries and lymph nodes who made the doctors suspect a case of lymphoma. Of course, because there’s no biopsy, they can’t say with certitude that it’s lymphoma. He has actually been offered a biopsy (but they didn’t insist and also mentioned the risks) and a PET/CT last September (maybe he’ll have a PET at his next scan), which he didn’t want to rush.
We’re living in the biggest city in Germany so we have easy access to the doctors, oncologists etc. I really trust the healthcare system here, and we don’t really have the financial means the travel to the US for treatment but in case he has a positive biopsy someday it could be an option to ask for a second opinion from MD Anderson online -i read that it was possible. Luckily a lot of new lyphoma drugs are also approved here (Mosunetuzumab/Lunsumio for example).
So we’ve been in a limbo since more than 1,5 years. Sometimes it’s hard, and sometimes we forget it. We will move to a new apartment in 3 months so it was relieving to see that he’s doing ok.
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Dear Itsverycalm, thank you for your detailed answer. For some people it’s much better to receive a treatment as soon as possible, probably at least for the mental wellbeing. Watch and wait can be really hard sometimes, especially when the acans are approaching. My husband’s case is still suspected (despite an official diagnosis in his acts!) but since he has swollen nodes on multiple locations he would be at least stage 2/3. We still hope his situation will stay stable for a longtime. One of first things we discussed with his hematologists was the possibility of a curative treatment if he had it, but he dismissed the idea saying it’s not an ideal location for radiation and could raise the risks of secondary cancers…So we didn’t rush the biopsy.
Radiotherapy +rituxan seems like a good combination to me (not so hard your body like a typical chemotherapy) You only have one positive node and you will be hopefully cured at the end of the treatment!
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