hubby waiting for a diagnosis? Incidentally found Multiple enlarged lymph nodes in abdomen
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hello again PBL and thanks for your answer,
my husband is feeling great- he works full time (from home) , cares for our kids, walks or rides his bike everywhere, cooks for us…he doesn’t feel sick at all.
he isn’t really sure what the doc had told him but he mentioned “abnormal results” from these flow cytometry tests. Of course i’m hoping for the best but it does sound like he keeps mentioning an infection just to make him not worry. He also said that they have to look at to the histology, which, i guess, means a biopsy…
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Dear Shady Guy,
i’m not a doctor but you’re definetely right about CT scans being the scanning methode of choice when it comes to lymphoma. I think he’s going to have anither CT (or even a PER scan) at some point but they’re doing this MRI just to follow the nodes really closely (almost every 6 weeks!) On the other hand, it seems that he will have the biopsy sooner than expected, since the doc was mentioning that “they have to look at the histological data”
My husband has just turned 41 years old so he’s quite young and if he does have lymphoma it probably means he’s going to have these scans all his life…
I have read a lot about FL and it seems that there are reasons to be optimistic, a new drug/treatment is coming every year, but as hard as a cancer diagnosis may be at any age, i do think it makes a difference when the person is quite young. Many years and decades will probably translate into a much better prognosis for someone in their 60/70s vs someone as young as my husband…
The most important thing for us is to see our kids grow. They are really young (1,5 and 4,5) and I hope we will have lots of great time to spend together as a family no matter what the diagnosis is…
May I ask you how old you were when you were diagnosed?
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The average age of diagnosis for follicular is 64 but younger people do get it. If it is lymphoma at all you will not know for sure what type until a biopsy is done. Scans are just screening tests that say something is there. Histology tells you what it is. Even with follicular there are some 20 subtypes. It is very important to carefully type lymphoma so that treatments can be optimized. That can only be done with a biopsy. Most docs will also want a bone marrow biopsy if the excision biopsy is positive.
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Dear ShadyGuy,
thank you for asking. In fact, i’ve waited a bit before answering your question because I thought we would know more by then, but we still don’t know much.
Following the flow cytometry test with abnormal results, MRI was rescheduled. According to the radiologist it showed “ the sandwich sign” in the mesentery which was typical of the NHL lymphoma.
Then another radiologist -who happens to be a lymphoma specialist as well- compared the CT from 2,5 months ago and the latest MRI. She was convinced that it doensn’t look like lymphoma, rather panniculitis ( but i’ve -of course- googled it and panniculitis does mostly happen along lymphoma!), and that both scans look exactly the same, so there’s no growth of the lymph nodes…Then at the hematologist they took his blood again,this time to look for something called “immuntypology/immunphenotypology “. The hematologist told us that he would contact us in case of an abnormal result, but it was more than 2,5 weeks ago and he still didn’t call…
I was also at the doctor’s office with my husband and was relieved to hear from him that even it’s a (low grade) lyphoma case, my husband could go on live an almost normal life, and that he knows people living 40-50 yeara following their diagnosis!
He told my husband to come back in 5-6 months time for the tests and control scans, it seems now that they won’t biopsy him, at elast for now. I told the doctor that it’s a really weird feeling not knowing, he agreed but he still didn’t want to take the risk of an agressive biopsy.
Husband is doing really well, he doesn’t have any symptoms or complaints. It’s been now more than 4 months since the forsr MRI.
I guess we’re getting used to the idea that everything’s OK even if it isn’t..
I hope you’re doing well and thank you again for asking!
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It sounds like “watch and wait” is in order. The difference of opinion between the two radiologists does not surprise me at all. Multiple opinions which differ are all too common. Also (in my opinion) avoiding the deep chest biopsy is a very wise move. If it were me I would just be getting bi annual checkups and get on with raising those two beautiful children! Best of luck.
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An update: So we got the phone call from the doctor (hematologist) today. The results of the immunphenotypology scan are in and we don’t know the details yet but it definetely confused us.
The doctor has mentionned some “mutations” (I think about three?), and is now reluctant to say “it’s rather a follicular lymphoma”. He still doensn’t rule it out- of course we don’t have a biopsy- but he also says “it could be anything” , though very probably not a large cell, agressive nhl. (We knew about this anyway!) I asked him if it could be mantle zone lymphoma, and he reacted a bit surprised, then saying “it dkens’t correspond to the clinical features” and that “if it isn’t follocular, than rather marginal zone lymphoma”.
to be honest, we were quite shocked. My husband was hoping for the best anyway, and hearing it’s getting more and more real has made him sad. I was getting used to the idea that living long and healthy with follicular lymphoma is definetely possible and was encluraged that new treatments are on the way, and now hearing that it could be “anything” destabilised me. It’s been absolutely an emotional rollercoaster!
I’m still hoping that it’s follicular, marginal zone is really rare and there’s much less research going on with it.
We will go to the doctor’s office to collect the results but husband won’t be seeing the doc til next march. And the doctor is still against biopsy…
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Don’t be too worried yet. But Po is right - get another opinion. My recommendation would be to NOT share lab results (other than the MRIs) with the new oncologist so as not to bias his/her opinion. I do think I would want the new onc to have a radiologist he/she knows look at the MRIs. Po is very knowledgeable and could probably research and find you a good oncologist in your area if you could share your general location. You could PM him if you do not want to give your location here. If your husband has lymphoma he will eventually develop palpable nodes which can be safely biopsied. He seems stable so don’t jump to conclusions. You guys have a good future.
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Hello, I hope that everyone reading this is doing OK! I’m back again with a little update from my husband,
first of all, there has been a misunderstanding about the result of the second flow cytometry: the hematologist didn’t actually really mentioned “mutations” but he was talking about 3 different b-cell subpopulations”… [hubby and i have somehow misheard him!]
at the beginning of the new year, we saw two different lymphoma specialists from 2 different countries:
the first one just saw the lab work and the results of mris/ct. he wasn’t convinced that it was follicular lyphoma yet, instead he mentionned the possibilty of some condition called “monoclonal b-lymphocytosis” (MBL) , a precancerous condition that has a yearly transformation rate of about 1%.
we were of course super relieved to hear this.
Then he had another appointment with a lymphoma specialist in Germany, he also thought that MBL was quite plausible but didn’t rule out an existing lymphoma.
But after showing thE MRI and CT to another radiologist, he called my husband again that evening to tell him that “indeed, it does look suspicious”…
So my husband had another MRI done this week, we got the results on friday and the lymph nodes are still there, but their size is constant, still 12 mm, same size as the first MRI from 8 months ago. We were also relieved to learn that they didn’t grow any further, although that wasn’t a full body scan so we don’t really know about other nodes, but he doesn’t have any palpable nodes yet.
Unfortunately we didn’t really have time to enjoy the good news (although hearing that there are no more enlarged nodes would be the real good news!), because he has a positive rapid test since yesterday. He has fever and feels super tired. He started paxlovid today so I hope he soon will be ok without lasting effects. Did anybody here got covid? And take paxlovid? What were your experiences?
I must also add that these last three months were quite full of illnesses. My husband had an influenza a infection last december (4-5 days of fever, didn’t take any medications) and also a tonsilitis a month ago ( had to take antibiotics… I think he has had tonsilitis about 4-5 times in the last 10 years!)
Now i really hope that covid won’t make his [possible] lymphoma worse…
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All good news! But I hope you are aware no definitive diagnosis can be done without a biopsy. Hang in there. You are in what is referred to as “watch and wait” which is a valid course of action. I admire your persistence. As far as Paxlovid, I know nothing from personal experience as despite my irresponsible behavior, weakened immune system and known exposure I have never had covid. I did take the first 4 shots (Pfizer) but shunned 5&6. I only wear a mask when required for entry. This approach has worked for me but is probably not right for everyone. To each his/her own. I enjoy exchanges with you. All my best to you and your family!
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Hello whitepony,
I'm writing to ask if your husband has finally gotten a diagnosis and to reply to a couple of your questions.
Just prior to being diagnosed, I contracted Covid and was given Paxlovid. Although my immune system is weak I had a mild case and I responded well to the medications and felt better in less than a week. I have also tested positive recently for Lyme Disease. I think it's a recurrence as I've had Lyme several times, most recently last September. I don't know yet whether I've responded to the antibiotic. The problem is that the symptoms are also early symptoms of the Large B cell Lymphoma I've been diagnosed with, i.e. fevers and fatigue. I am going to have the doctor test for Lyme in my next blood tests, which seem constant to me.
Most important, I had a biopsy of the lymph nodes in my abdomen. The surgeon is among the few who is well-versed in robot assisted micro-surgery, so the biopsy was much less invasive and had fewer and milder side effects than if I had been sliced open. Not that there were no side effects, but it was bearable. I had mild anesthesia and went home an hour after the procedure. If you can find a surgeon who is qualified to do micro-surgery, I recommend it highly. He made five small round holes across my waistline that healed on their own in a couple of weeks with minor pain and discomfort. He was able to take and entire enlarged lymph node out through one of the holes in order to do an extensive cross section biopsy. My cancer is very fast growing, but the good news about that is that it's totally curable. You may have been told that the indolent, or slow growing, non-Hodgkin's Lymphoma can't be cured, but it can be put into remission. My younger brother has indolent lymphoma that required chemo, but he has been in remission now for 23 years and he feels totally healthy.
Good luck to you and your husband. Maybe he has the watch and wait kind of indolent lymphoma, which may be very good news indeed, but I would want a definitive diagnosis one way or the other.
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Dear HarryHook,
I am sorry to hear about your diagnosis. I have seen your profile and it seems that you’re going to start treatment very soon. I hope the best for you and like you’ve said, you have very good chances of being cured which is great news.
I am also a but surprised by the fact that your complaints have been dismissed by the doctors for 2 years. Nightsweats and fever are the tell-tale signs of lymphoma so i don’t understand why they had to wait so long.
to answer your question, my husband still doensn’t have a definite diagnosis. The last appointment with his hematologist was 1,5 months ago and he told us it was possible to do a biopsy but didn’t insist about it. The fact that the nodes stayed the same size for 8 months is definitely a good sign, but i think he still doesn’t feel ready for a diagnosis… And we’ve been told by 3 different doctors that he wouldn’t have been treated right away (radiotherapy is unfortunately not an option because the nodes in the abdomen are pretty deep), so it would’t change anything…
So yes we’re in the watch and wait game, which sometimes can be pretty hard on the psychological level (especially for me, luckily my husband doesn’t think much about the “situation”!) and it’s very encouraging to hear positive stories just like that of your brother!
I wish you lots of strength for the chemo and keep us updated!
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Hi whitepony,
Any updates? How is your husband (and you) faring?
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Dear ReginaMarie,
thank you for asking. My husband is (luckily) still ok. For me it’s always harder to cope with the situation. In fact, I’m a bit worried that he completely stopped being covid-cautious, but it’s his own decision…
His next appointment is scheduled for early september. He’ll have a ct and blood tests. We hope his nodes stay the same size, although i’ still hopeful they’ll get smaller. (With indolent lymphomas it’s possible)
how are you doing? I think i saw you first time in this thread, so i’m going to check older posts:)
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Hi! I'm new here in this thread. I was here a few years ago seeking support as a caregiver and now it's my turn. I left a new post in the thread if you'd like to check it out. Thank you for asking. :)
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Hello again,
i hope you’re all doing well. Here’s a little update from us:
Today was my husband’s 6 month check up. He had his bood drawn and an ultrasound lf his abdomen. Unfortunately at least one lymph node was larger than in the last MRI (End of February 2023), a 5 mm growth from 12 mm to 17 mm. He’s probably going to have a CT, too.
We were really hopeful that the nodes would stay the same size for a least a couple of years. Of course, we don’t know when they started to grow. Is it the last two weeks, or is it since last March? We know too much and too little at the same time…
Husband feels OK. No fatigue, weight loss, night sweats etc.
We ordered turkey tail supplements. We’re not against conventional therapy, it’s just a small hope to gain more time…
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Hello whitepony,
A 5mm increase in size over a six-month period on a lymph node that was initially marginally enlarged in someone who is asymptomatic doesn't seem to be something to worry too much about. It may not even be cancer-related at all. Your husband's hematologist will probably be able to reassure you.
Do let us know when you've seen him/her.
Kind regards,
PBL
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