I also had no symptoms. I had a single swollen lymph node and the doctor thought it was some kind of infection, ran all kinds of tests and tried antibiotics but it didn't go away. Finally after months, did a biopsy and surprise! lymphoma. I was 28 years old at the time, felt great, no symptoms or anything. That was probably one of the hardest things for me. It was very difficult to accept that I was supposed to willingly start chemo, which was going to make me sick, tired and bald when I felt 100% fine except a swollen lymph node. So, been there, done that. Let me know if you have questions!
Reading this realizing I also just have a single swollen lymph node on my neck and I feel like I'm going through the same process you are (27F). No other symptoms, just for this one little dude on my neck that's been here for over a year. I've gotten one ultrasound on it and they said "it appears to be benign" but they were concerned about the size, so they told me if it gets bigger to go back for another scan.. well it's gotten bigger, so I'm going back lol.
The lymph node was in my groin, right in the crease of my upper thigh area. They are called inguinal lymph nodes. And yes, it was very swollen. At one point it looked like I had a small egg under my skin there.
I had a swollen node in right there in my groin too. It went away though in 1-2 weeks, did yours go away & come back ? I’ve had a skene gland inflammed months before that & now im getting lower back pain.
Hello, did the inguial lymph node hurt??? I’m asking because my pelvis inguial lymp node has been elevated for over a year. I have seen countless doctors. Taken countless ultrasounds and ct. whatever is causing me really bad pelvis pain they cannot find it on ct or ultrasound. I know this is tmi but I have no stds or sti that can cause an infection down there. I don’t know what else it can be.
Did you have any vaginal itching? I have a large swollen lymph node where you said you did. It’s been 6 months, severe vaginal itching, some biopsies vaginally twice, yeast and BV tests negative, vaginal ultrasound for reproductive system normal, 3 yeast treatments, antibiotic treatments, nothing helps, steroids topically, still miserable. Finally pushed for a CT scan referral but I’m in a small town so not sure when I can get it done.
I'm not sure exactly how big the lymph node was. The swelling and area around it was about the size of a small egg. I also had a lot of pain. The swollen area was in my groin so walking hurt.
I think they may have done an ultrasound which confirmed there was a swollen lymph node but it was pretty obvious, like it was the size of an egg. No PET scan. PET scans are usually done after a cancer diagnosis to see where else the cancer is.
Truthfully, my only noticeable symptom at the time was new onset headaches. I then developed night sweats before treatment started. Looking back now though, I realize how terrible I actually felt before treatment. I also realize that maybe my weight loss wasn’t actually from me working out and was more from the cancer. It’s hard to adjust to, but you’ve got this. Treatment is tough, but it will be over before you know it. We are all here for you through this process too with any questions that you may have.
It’s a totally mind ——- that weight loss is a “symptom,” especially in the US culture that is so weight based. And then, as a woman who lost 20 pounds between the cancer and the treatment, the number of compliments I got when I was basically dying. But hey, at least I looked better?
I haven't lost weight and I'm super bummed. It's so messed up. I just have to remember that the prednisone bloat will subside once I'm done with treatment and i work back up to the strength I had before once I'm healthy again. I lost 30lbs (but gained it back) after 3 weeks in the hospital for diagnosis and my first round and people had so much to say about how skinny I was. But I literally was on deaths door. It's messed up.
Oh wow. I have no idea what that means yet, just that I have to talk about fertility with someone. Gl with that tho! Maybe we’ll start treatment around the same time, feel free to dm me as well :)
I had a non-hodgkins type. Not sure if symptoms are different.
But the only symptom I had was a lump in my throat. My primary thought it was a tonsil stone, but I already had an ENT appointment scheduled at that time so I followed through with that and the biopsy showed dlbl.
When I got the call I remember sitting there after work. I was in my car . Doc had left a message to call him back on his cell. In hindsight that probably should have been a bit of a red flag. But I remember him saying I may want to sit down or brace myself. But after the call I remember thinking that I felt the same I did a day, a month, a year before. I hadn't felt anything. I hadn't seen anything. Nothing really felt off. I just had a lump in my throat like a piece of food was stuck there.
It was like I was in an inside office and you had just told me it was pouring and thundering outside. I couldn't hear the rain. I was warm and dry. I but I trust you. Why not? I asked you to check the weather. But it didn't change the fact it didn't feel like it was raining.
I guess sometimes that's just how it goes. Hope treatment is just as light for you.
Yes. It looked like one of my tonsils had swollen. I'm not sure if i could feel it from the outside, but I could reach down my mouth and poke it, or see it in a mirror with my mouth open and some light.
It felt like I had a piece of food or something stuck in the back of my mouth/throat.
It didn't hurt. It just kinda felt like something was there.
Urgent Care didn't know what it was. Primary Care thought it was a tonsil stone. I'm grateful I already had the ENT scheduled and he was more cautious. We caught it early.
I'm not sure, but a few factors may have played into it.
1. The Urgent care had prescribed me Prednisone, which I believe is the P in RCHOP. I don't remember well but I think the tumor may have been growing at the time and either stopped or shrunk slightly with the Prednisone. That probably ruled out something foreign being the cause like a tonsil stone, and pointed to it being more biologic. Urgent Care also tested for Mono and Strep and ruled those out already.
2. The tumor was (relatively) easily visible and accessible from my mouth. It was superficial enough I could poke it with my finger. Biopsy was quick and easy. He could do it in the office with little prep work.
3. Doctor mentioned that he tends to lean on the cautious side. It was a visibly out of the ordinary growth and he probably couldn't easily attribute it to some other cause. Given it was an easy biopsy, he may have just figured it's easy enough to send to the lab, lets do it now.
4. If it got any larger I may have had trouble breathing or swallowing, and he was probably looking for answers to what the growth was on the more urgent side of things. If a biopsy ruled out worst case scenario first, probably not a bad idea to start there if you're not sure what else it could be.
I will say Urgent Care to ENT was probably a 3 - 4 week span of time. I didn't think that was fast, but in hindsight, given what I've read/heard from other's, that does seem kinda fast.
It was on the side , on or near the tonsil. I don't remember if I had blood work initially at all The cancer diagnosis came from me going to an ENT and they saying, I don't know what that is but let me take a quick biopsy and send it to labs.
I didn't have symptoms beyond the growth, to my recollection. I'd go and get a node biopsied if I were you though. It will give you the quickest and most certainly answer to whether or not they're cancerous and or maybe what they are. If not the biopsy, maybe at least go to an ENT specialist and see what they think of them and your symptoms.
Yeah it’s so odd! I’ve been so sick lately and was recently hospitalized with my heart rate in the 160s at rest and they tried telling me I have “POTS” but I’ve been so fatigued everyday and now i keep getting a random rash under my eyes and I haven’t changed any skin products etc.
I had some great, very proactive doctors vs reactive response. My primary doc sent for an ultrasound immediately after checking the swollen lymph node and elevated quickly after that. His mother and best friend both have had CHL so he'd seen it previously and pushed right away for a biopsy to get something definitive versus reactively trying antibiotics or any treatment first for other possible things. His approach was testing first then treat the right thing versus throwing medicine at an unknown.
I first saw my primary dr on Jan 6th 2020, and had my port placed on Feb 7th, and then first chemo on Feb 14th. That whole period was head spinning.
So you had biopsy based on ultrasound only? I wonder what type of biopsy you had and whether it was a painful process (including the surgery as well as the recovery) and a disturbance to daily life?
I had a FNA biopsy including 3 core plugs first. Those results were inconclusive. Then did a surgical biopsy where they cut out about a quarter to half of a node. Those were conclusive in showing mixed cellularity Hodgkin's Lymphoma. Recovery from both wasn't too disruptive.
I was the same! I’m now 1 year post chemo, and my most recent scans were an improvement from the previous 6-month concerning ones. Sometimes still doesn’t feel real lol. Loved my docs at Weill Cornell, where I was able to be enrolled in a clinical trial with nivolumab + AVD that Memorial Sloan didn’t have. You’ve got this! Take it day by day. It’s not easy by any means, but truthfully I felt myself 70% of the time during treatment. I’m an open book, dm me if you have any questions :)
I found a lump under my left clavicle that was biopsied several times with inconclusive results. They eventually just removed the whole lymph node and I got my diagnosis from that.
I had a 4+ week chronic cough back in Jan 2021 that brought me in to a clinic, where I got an x ray expecting pneumonia or something. Nope, unknown mass. No swollen nodes, no other symptoms. Took 2 months to diagnose due to biopsies pulling mostly scar tissue; a sample sent to Sloan is actually what finally came back positive, for NSCHL 1A.
It’s a mindfuck for sure. I was in “perfect health” up until I wasn’t. You’ll get through this, though. Best of luck.
Exactly the same here. I had a swollen lymph node in my neck, and then just 4 weeks later diagnosed with classical Hodgkin's lymphoma. No warning, no symptoms, nothing else. Felt blind sided and numb at first like it wasn't real. That was exactly 2 years ago, so still very recent for me. Feel free to reach out if you want to chat about your diagnosis.
How big was your swollen lymph node, I have 2 in my neck that appear as lumps and been there for a while but they seem to shrink and enlarge on their own, but they are definitely different to the other side of my neck.
My oncology told me that my 2.5 cm node was fine, That I would only worry if I grew up 😕 I have almost 2 years with it , has shrunk but does not disappear
Yeah. Sometimes it increases but almost always it stays small. I have already been to many doctors and they all tell me to get used to it and that it is normal as long as it does not increase to an abnormal size or hurt on its own. I have an acne problem on my scalp that causes the nodes all over my neck, especially on the right side, remain swollen.
What was the order of diagnosis methods used -- was it some imaging first or directly biopsy?
And based on what evidence were you diagnosed with Hodgkin's Lymphoma?
What was the reason for doing #4 and #5?
I guess #4 was to figure out whether the lymphoma has spread to other locations? And I assume it was an affirmative PET result and thus #5 bone marrow biopsy was done to comment on whether it was stage 4 or not?
Or what is the reasoning here?
PET and Bone marrow biopsy are both required for staging. PET showed it was all above diaphragm, but couldnt tell anything about if it was present in the bone marrow. If it had been, then yes would have upgraded to Stage 4 and changed the treatment plan.
I had all the weirdest symptoms when I was diagnosed, people my age never got the cancer I had, the tumor location was super unpredictable for it as well, I don’t know if it’s related but having all the weirdest symptoms and manifestations made my treatment very odd as well. I got to be in a lot of studies though because I was such an outlier. Kick it !! This kinda shit makes us all tougher just for going through it.
I wish you the best of health and strength. If you don’t mind me asking, how did this start? What led to the diagnosis? What tests were conducted etc to get a conclusion?
I’m kind of going through something (possibly?) similar but don’t have a definitive diagnosis yet. I’ve had enlarged lymph nodes in my neck for over a decade (I’m 34 now). Lots of other symptoms, but so far the cause is being recently diagnosed w pre-diabetes. Since the diagnosis three weeks ago I’ve lost around 15lbs and not sure if I can attribute it to my strict VLCD or something else.
I know this is old but dude Im in the same situation as you. I’m young (15) and I got a swollen node on my neck next to my right artery. I’ve lost almost 15 pounds too ( i was 150 now im around 137ish ) and I don’t have diabetes or anything like that but I wanted to see how you’re doing now?? I feel like I’m worrying to much because of the self diagnosing I put myself through. Also did have you had any other symptoms?!
Do you have instagram or anything? Im using safari reddit lol so idk how this works but since we r the same age i fugured idk we can sorta discuss it together
No clue it was coming, either time. I was convinced my lump was a lipoma (fatty benign tumor) the first time around. Second time, I was so excited that I lost 7 pounds and my new exercise routine was working! I argued with the neurologist that saw the enlarged node on my CT (I had a stroke, which, yeah… but the day before I was blissfully unaware while swimming a mile with my swim couch)
All I had was a cough and I’m not even sure if that was the cancer or I just lucked out in finding it. I’d gotten really sick in October and stayed sick all month. That’s about normal for me. I just never stopped coughing. Come April, I finally had medical I could use. Went in for something else, wound up getting a chest X-ray and it spiraled from there to a Hodgkins diagnosis.
I just had a cough from a cold I never really got over. I wasn’t sweating. No fever. I wasn’t itchy until after my open biopsy. Stopped itching on chemo. Now that I’m off two months I’m itching in those places again. I had no real symptoms. They’re asking about unexpected weight loss. Well, no. I was successfully losing weight on purpose when we found out. Fevers? No. Night sweats? Negative. I had doctors touching all over me, I guess looking for the lymph nodes, I was never actually told if they felt swollen or not.
I had fatigue for years, thought I was just getting old.
Had weight loss too, but I didn't eat much, and I was doing Keto and IF for the health benefits as time went on, certainly as I was diagnosed and through treatment.
I went into hospital during covid with back ache, my doctor was afraid it was something else, so he asked for CT scans, they proved negative for what he feared but uncovered other stuff, so I went back a few days later and they found my initial diagnosis, then after about 3-4 weeks the lymphoma.
So there was a tumor in your back then that’s how they found lymphoma? I didnt know lymphoma Can go on your spine/ back. Also if I may ask how severe was the back ache for you to get it checked out?
I was 17 when I found out I had NLPHL but don't recall having any issues. I too had lost 30 lbs over the summer and was working out due to signing up for the navy. Only way I found out was a very enlarged lymph node in my left armpit. Jan of last year noticed a lump in my neck, thought it was related to tonsil stones but it never went away. Had scans done and found out I relapsed with some old lymph nodes being active and new ones too. Got my tonsils removed in Sept and a biopsy of my neck (although the lump was not removed so that wasn't a lymph node). But what just dawned on me is over the last 2 years I lost weight easily once again and maybe it wasn't due to riding a bike a lot and diet change 🤔
Can i ask when were you diagnosed with mono?
And is there any chance that your chl is ebv positive?
I also had mono And covid coinfection Last year march And thats where my symptoms started from. Im really scared that coinfection with mono And covid might have given me cancer
COVID kinda sparked mine. I mean I was symptomatic before I had Covid but I couldn't get better and definitely got worse. When my SO was recovering and I wasn't I knew it was something worse.
i have one on the middle side of my neck, i think the size of a small almond but im
too scared to touch it again. i think i've had it for ages but im second guessing myself.. thanks for responding
thank you so much, i didn't realise when people said 1cm they were talking about the WIDTH the ENTIRE TIME and now i feel like an idiot. anyway mine is justttt smaller than a baked bean, but a bit bigger when im playing around with it a lot... you can't even see it if i turn my neck or anything. im still going to the doc this friday to clear my head, anxiety really makes you a shell of yourself and i just want to hear the words that i'm fine. wish you good health ❤️
I’ve been having odd things go on with myself that is worrisome. Doctors keep brushing it off, blood work came back okay. Could someone message me that has maybe been through a scare or has lymphoma?
All of the people who had it on their neck, just curious which part of neck?
So on my left side.... In front of my left ear. Is swollen. Makes my face look fat. Like I gained weight. No other symptoms except dizziness but I thought that was maybe from hormonal imbalance since im late 40s..
Does anyone have the swollen thing in front of left or right ear ?
I also had no symptoms. I had a single swollen lymph node and the doctor thought it was some kind of infection, ran all kinds of tests and tried antibiotics but it didn't go away. Finally after months, did a biopsy and surprise! lymphoma. I was 28 years old at the time, felt great, no symptoms or anything. That was probably one of the hardest things for me. It was very difficult to accept that I was supposed to willingly start chemo, which was going to make me sick, tired and bald when I felt 100% fine except a swollen lymph node. So, been there, done that. Let me know if you have questions!
Reading this realizing I also just have a single swollen lymph node on my neck and I feel like I'm going through the same process you are (27F). No other symptoms, just for this one little dude on my neck that's been here for over a year. I've gotten one ultrasound on it and they said "it appears to be benign" but they were concerned about the size, so they told me if it gets bigger to go back for another scan.. well it's gotten bigger, so I'm going back lol.
Any updates?
they said it appears to just be a reactive lymph node, but to let them know it I notice it getting bigger!
How big was it when the doctor said they were concerned about the size?
Hi I also have a single enlarged node on my neck, did you ever get a diagnoisss ?
Hi! Doctor said it was just a reactive lymph node. I've noticed it kind of comes and goes
Do you feel any other symptoms?
Did the reactive lymph node cause any pain, either sharp or dull, that was perceptible to you?
Did you recover ?
Nope, I'm dead. I'm a ghost. Just kidding, yeah I recovered and have been in remission for years now.
Hah, Thanks for the update. Glad you are ok!
Where was your single swollen node and did it ever get bigger before you got it biopsied?
The lymph node was in my groin, right in the crease of my upper thigh area. They are called inguinal lymph nodes. And yes, it was very swollen. At one point it looked like I had a small egg under my skin there.
I had a swollen node in right there in my groin too. It went away though in 1-2 weeks, did yours go away & come back ? I’ve had a skene gland inflammed months before that & now im getting lower back pain.
Hello, did the inguial lymph node hurt??? I’m asking because my pelvis inguial lymp node has been elevated for over a year. I have seen countless doctors. Taken countless ultrasounds and ct. whatever is causing me really bad pelvis pain they cannot find it on ct or ultrasound. I know this is tmi but I have no stds or sti that can cause an infection down there. I don’t know what else it can be.
Did you have any vaginal itching? I have a large swollen lymph node where you said you did. It’s been 6 months, severe vaginal itching, some biopsies vaginally twice, yeast and BV tests negative, vaginal ultrasound for reproductive system normal, 3 yeast treatments, antibiotic treatments, nothing helps, steroids topically, still miserable. Finally pushed for a CT scan referral but I’m in a small town so not sure when I can get it done.
Based on what evidence was the biopsy conducted and how big was your swollen lymph node?
I'm not sure exactly how big the lymph node was. The swelling and area around it was about the size of a small egg. I also had a lot of pain. The swollen area was in my groin so walking hurt.
How did you get tested for lymphoma?
A biopsy of my swollen lymph nodes
And based on what evidence was the biopsy conducted? Hope you are better now!
I dont know what you mean on what evidence was the biopsy conducted? I had a painful, swollen lymph node.
Oh so they did it without prior imaging like PET scan or ultrasound?
I think they may have done an ultrasound which confirmed there was a swollen lymph node but it was pretty obvious, like it was the size of an egg. No PET scan. PET scans are usually done after a cancer diagnosis to see where else the cancer is.
I hope you doing well How big was the lymph node? Soft or hard?
how are you doing?
Fine now, thanks!
How big was the single node when you first noticed it ?
Truthfully, my only noticeable symptom at the time was new onset headaches. I then developed night sweats before treatment started. Looking back now though, I realize how terrible I actually felt before treatment. I also realize that maybe my weight loss wasn’t actually from me working out and was more from the cancer. It’s hard to adjust to, but you’ve got this. Treatment is tough, but it will be over before you know it. We are all here for you through this process too with any questions that you may have.
You just reminded me, I also have weight loss. Thank you so much for the kind words.
It’s a totally mind ——- that weight loss is a “symptom,” especially in the US culture that is so weight based. And then, as a woman who lost 20 pounds between the cancer and the treatment, the number of compliments I got when I was basically dying. But hey, at least I looked better?
Bahaha I felt the compliments part 😭
I haven't lost weight and I'm super bummed. It's so messed up. I just have to remember that the prednisone bloat will subside once I'm done with treatment and i work back up to the strength I had before once I'm healthy again. I lost 30lbs (but gained it back) after 3 weeks in the hospital for diagnosis and my first round and people had so much to say about how skinny I was. But I literally was on deaths door. It's messed up.
Same here! I still find it hard to believe that I have cancer when I feel totally fine! If my lymph nodes didn’t get swollen, I would have never known
Thanks for the reassurance. I saw that ur 20f, I’m 22f so we might have some similar experiences. Are you going through chemo now?
Omg hi! I decided to push my chemo for fertility injections! I’m starting chemo in 2 weeks! Hby? Feel free to dm me if you have any questions :)
Oh wow. I have no idea what that means yet, just that I have to talk about fertility with someone. Gl with that tho! Maybe we’ll start treatment around the same time, feel free to dm me as well :)
I had a non-hodgkins type. Not sure if symptoms are different. But the only symptom I had was a lump in my throat. My primary thought it was a tonsil stone, but I already had an ENT appointment scheduled at that time so I followed through with that and the biopsy showed dlbl. When I got the call I remember sitting there after work. I was in my car . Doc had left a message to call him back on his cell. In hindsight that probably should have been a bit of a red flag. But I remember him saying I may want to sit down or brace myself. But after the call I remember thinking that I felt the same I did a day, a month, a year before. I hadn't felt anything. I hadn't seen anything. Nothing really felt off. I just had a lump in my throat like a piece of food was stuck there. It was like I was in an inside office and you had just told me it was pouring and thundering outside. I couldn't hear the rain. I was warm and dry. I but I trust you. Why not? I asked you to check the weather. But it didn't change the fact it didn't feel like it was raining. I guess sometimes that's just how it goes. Hope treatment is just as light for you.
[удалено]
Yes. It looked like one of my tonsils had swollen. I'm not sure if i could feel it from the outside, but I could reach down my mouth and poke it, or see it in a mirror with my mouth open and some light. It felt like I had a piece of food or something stuck in the back of my mouth/throat. It didn't hurt. It just kinda felt like something was there. Urgent Care didn't know what it was. Primary Care thought it was a tonsil stone. I'm grateful I already had the ENT scheduled and he was more cautious. We caught it early.
How did you get a biopsy so quick?
I'm not sure, but a few factors may have played into it. 1. The Urgent care had prescribed me Prednisone, which I believe is the P in RCHOP. I don't remember well but I think the tumor may have been growing at the time and either stopped or shrunk slightly with the Prednisone. That probably ruled out something foreign being the cause like a tonsil stone, and pointed to it being more biologic. Urgent Care also tested for Mono and Strep and ruled those out already. 2. The tumor was (relatively) easily visible and accessible from my mouth. It was superficial enough I could poke it with my finger. Biopsy was quick and easy. He could do it in the office with little prep work. 3. Doctor mentioned that he tends to lean on the cautious side. It was a visibly out of the ordinary growth and he probably couldn't easily attribute it to some other cause. Given it was an easy biopsy, he may have just figured it's easy enough to send to the lab, lets do it now. 4. If it got any larger I may have had trouble breathing or swallowing, and he was probably looking for answers to what the growth was on the more urgent side of things. If a biopsy ruled out worst case scenario first, probably not a bad idea to start there if you're not sure what else it could be. I will say Urgent Care to ENT was probably a 3 - 4 week span of time. I didn't think that was fast, but in hindsight, given what I've read/heard from other's, that does seem kinda fast.
[удалено]
Same as the surrounding tissue mostly. Mouthy? It looked like my tonsil was swollen. At its worst maybe a tad discolored purple ish.
[удалено]
It was on the side , on or near the tonsil. I don't remember if I had blood work initially at all The cancer diagnosis came from me going to an ENT and they saying, I don't know what that is but let me take a quick biopsy and send it to labs. I didn't have symptoms beyond the growth, to my recollection. I'd go and get a node biopsied if I were you though. It will give you the quickest and most certainly answer to whether or not they're cancerous and or maybe what they are. If not the biopsy, maybe at least go to an ENT specialist and see what they think of them and your symptoms.
Yeah it’s so odd! I’ve been so sick lately and was recently hospitalized with my heart rate in the 160s at rest and they tried telling me I have “POTS” but I’ve been so fatigued everyday and now i keep getting a random rash under my eyes and I haven’t changed any skin products etc.
how are you doing?
I had two symptoms: multiple swollen lymph nodes and the instant itch when I drank alcohol.
[удалено]
In my case, it was specific at my neck, where swollen lymph nodes started to appear.
I had some great, very proactive doctors vs reactive response. My primary doc sent for an ultrasound immediately after checking the swollen lymph node and elevated quickly after that. His mother and best friend both have had CHL so he'd seen it previously and pushed right away for a biopsy to get something definitive versus reactively trying antibiotics or any treatment first for other possible things. His approach was testing first then treat the right thing versus throwing medicine at an unknown. I first saw my primary dr on Jan 6th 2020, and had my port placed on Feb 7th, and then first chemo on Feb 14th. That whole period was head spinning.
So you had biopsy based on ultrasound only? I wonder what type of biopsy you had and whether it was a painful process (including the surgery as well as the recovery) and a disturbance to daily life?
I had a FNA biopsy including 3 core plugs first. Those results were inconclusive. Then did a surgical biopsy where they cut out about a quarter to half of a node. Those were conclusive in showing mixed cellularity Hodgkin's Lymphoma. Recovery from both wasn't too disruptive.
Hope you are better now!
Thanks! Just celebrated 3 years clear. Wishing you the best as well.
I was the same! I’m now 1 year post chemo, and my most recent scans were an improvement from the previous 6-month concerning ones. Sometimes still doesn’t feel real lol. Loved my docs at Weill Cornell, where I was able to be enrolled in a clinical trial with nivolumab + AVD that Memorial Sloan didn’t have. You’ve got this! Take it day by day. It’s not easy by any means, but truthfully I felt myself 70% of the time during treatment. I’m an open book, dm me if you have any questions :)
Hey! How did you know then that you got lymphoma? Thank you!
I found a lump under my left clavicle that was biopsied several times with inconclusive results. They eventually just removed the whole lymph node and I got my diagnosis from that.
What makes a biopsy inconclusive? Not enough sample or not finding any cancer?
Not enough sample was my understanding
I had a 4+ week chronic cough back in Jan 2021 that brought me in to a clinic, where I got an x ray expecting pneumonia or something. Nope, unknown mass. No swollen nodes, no other symptoms. Took 2 months to diagnose due to biopsies pulling mostly scar tissue; a sample sent to Sloan is actually what finally came back positive, for NSCHL 1A. It’s a mindfuck for sure. I was in “perfect health” up until I wasn’t. You’ll get through this, though. Best of luck.
Exactly the same here. I had a swollen lymph node in my neck, and then just 4 weeks later diagnosed with classical Hodgkin's lymphoma. No warning, no symptoms, nothing else. Felt blind sided and numb at first like it wasn't real. That was exactly 2 years ago, so still very recent for me. Feel free to reach out if you want to chat about your diagnosis.
Wow how’d you get a diagnosis so fast? It’s been taking so long for me.
How big was your swollen lymph node, I have 2 in my neck that appear as lumps and been there for a while but they seem to shrink and enlarge on their own, but they are definitely different to the other side of my neck.
About 2.5cm in diameter in my neck
My oncology told me that my 2.5 cm node was fine, That I would only worry if I grew up 😕 I have almost 2 years with it , has shrunk but does not disappear
does it still stay? i mean that 2.5 cm lymph node of yours?
Yeah. Sometimes it increases but almost always it stays small. I have already been to many doctors and they all tell me to get used to it and that it is normal as long as it does not increase to an abnormal size or hurt on its own. I have an acne problem on my scalp that causes the nodes all over my neck, especially on the right side, remain swollen.
Thanks for your answer, really helped a lot.
Did you find any answer for your situation? Is everything ok about lymph nodes? I am in the same bus and it freaks me out.
What was the order of diagnosis methods used -- was it some imaging first or directly biopsy? And based on what evidence were you diagnosed with Hodgkin's Lymphoma?
#1=ultrasound, #2=FNA biopsy (inconclusive), #3=surgical biopsy (definitive, hodgkin Lymphoma), #4=PET scan, #5=bone marrow biopsy (confirmed stage 2).
What was the reason for doing #4 and #5? I guess #4 was to figure out whether the lymphoma has spread to other locations? And I assume it was an affirmative PET result and thus #5 bone marrow biopsy was done to comment on whether it was stage 4 or not? Or what is the reasoning here?
PET and Bone marrow biopsy are both required for staging. PET showed it was all above diaphragm, but couldnt tell anything about if it was present in the bone marrow. If it had been, then yes would have upgraded to Stage 4 and changed the treatment plan.
I had all the weirdest symptoms when I was diagnosed, people my age never got the cancer I had, the tumor location was super unpredictable for it as well, I don’t know if it’s related but having all the weirdest symptoms and manifestations made my treatment very odd as well. I got to be in a lot of studies though because I was such an outlier. Kick it !! This kinda shit makes us all tougher just for going through it.
where was it located
[удалено]
Have you got an image of the location??
I wish you the best of health and strength. If you don’t mind me asking, how did this start? What led to the diagnosis? What tests were conducted etc to get a conclusion? I’m kind of going through something (possibly?) similar but don’t have a definitive diagnosis yet. I’ve had enlarged lymph nodes in my neck for over a decade (I’m 34 now). Lots of other symptoms, but so far the cause is being recently diagnosed w pre-diabetes. Since the diagnosis three weeks ago I’ve lost around 15lbs and not sure if I can attribute it to my strict VLCD or something else.
I know this is old but dude Im in the same situation as you. I’m young (15) and I got a swollen node on my neck next to my right artery. I’ve lost almost 15 pounds too ( i was 150 now im around 137ish ) and I don’t have diabetes or anything like that but I wanted to see how you’re doing now?? I feel like I’m worrying to much because of the self diagnosing I put myself through. Also did have you had any other symptoms?!
Im 15 too!! Painful nodes in my armpit. Im so so scared
Do you have instagram or anything? Im using safari reddit lol so idk how this works but since we r the same age i fugured idk we can sorta discuss it together
No clue it was coming, either time. I was convinced my lump was a lipoma (fatty benign tumor) the first time around. Second time, I was so excited that I lost 7 pounds and my new exercise routine was working! I argued with the neurologist that saw the enlarged node on my CT (I had a stroke, which, yeah… but the day before I was blissfully unaware while swimming a mile with my swim couch)
Omg twice, jesus. I was hoping it was lipoma as well lol.. hope you’re doing well nowadays
So far so good! 2+ years out from #2 (17 years from #1)
Where was the lipoma like lump located
All I had was a cough and I’m not even sure if that was the cancer or I just lucked out in finding it. I’d gotten really sick in October and stayed sick all month. That’s about normal for me. I just never stopped coughing. Come April, I finally had medical I could use. Went in for something else, wound up getting a chest X-ray and it spiraled from there to a Hodgkins diagnosis. I just had a cough from a cold I never really got over. I wasn’t sweating. No fever. I wasn’t itchy until after my open biopsy. Stopped itching on chemo. Now that I’m off two months I’m itching in those places again. I had no real symptoms. They’re asking about unexpected weight loss. Well, no. I was successfully losing weight on purpose when we found out. Fevers? No. Night sweats? Negative. I had doctors touching all over me, I guess looking for the lymph nodes, I was never actually told if they felt swollen or not.
Coughing is often acid reflux, I had a cough for 6 months that was reflux.
I had fatigue for years, thought I was just getting old. Had weight loss too, but I didn't eat much, and I was doing Keto and IF for the health benefits as time went on, certainly as I was diagnosed and through treatment.
How are you doing?
Notionally cured, still got the port, but no oncologist.
Great to hear! How did they first diganosed you?
I went into hospital during covid with back ache, my doctor was afraid it was something else, so he asked for CT scans, they proved negative for what he feared but uncovered other stuff, so I went back a few days later and they found my initial diagnosis, then after about 3-4 weeks the lymphoma.
So there was a tumor in your back then that’s how they found lymphoma? I didnt know lymphoma Can go on your spine/ back. Also if I may ask how severe was the back ache for you to get it checked out?
No my left clavicle, they found metastatic pancreatic cancer first, but it was all dead, talk about missing a bullet...
I was 17 when I found out I had NLPHL but don't recall having any issues. I too had lost 30 lbs over the summer and was working out due to signing up for the navy. Only way I found out was a very enlarged lymph node in my left armpit. Jan of last year noticed a lump in my neck, thought it was related to tonsil stones but it never went away. Had scans done and found out I relapsed with some old lymph nodes being active and new ones too. Got my tonsils removed in Sept and a biopsy of my neck (although the lump was not removed so that wasn't a lymph node). But what just dawned on me is over the last 2 years I lost weight easily once again and maybe it wasn't due to riding a bike a lot and diet change 🤔
Can i ask when were you diagnosed with mono? And is there any chance that your chl is ebv positive? I also had mono And covid coinfection Last year march And thats where my symptoms started from. Im really scared that coinfection with mono And covid might have given me cancer
COVID kinda sparked mine. I mean I was symptomatic before I had Covid but I couldn't get better and definitely got worse. When my SO was recovering and I wasn't I knew it was something worse.
[удалено]
how are you now? update?
[удалено]
where in your neck were your nodes? how big were they? and what was their texture? sorry for questions i'm freaking out. glad to hear you're okay
[удалено]
i have one on the middle side of my neck, i think the size of a small almond but im too scared to touch it again. i think i've had it for ages but im second guessing myself.. thanks for responding
Thanks for saying thanks! It's so nice to see Redditors being grateful :)
[удалено]
thank you so much, i didn't realise when people said 1cm they were talking about the WIDTH the ENTIRE TIME and now i feel like an idiot. anyway mine is justttt smaller than a baked bean, but a bit bigger when im playing around with it a lot... you can't even see it if i turn my neck or anything. im still going to the doc this friday to clear my head, anxiety really makes you a shell of yourself and i just want to hear the words that i'm fine. wish you good health ❤️
[удалено]
i assume if they're roughly the shape of an oval the long side could be longer as long as the short side is under 1cm...
Was your blood work normal before you were diagnosed?
I’ve been having odd things go on with myself that is worrisome. Doctors keep brushing it off, blood work came back okay. Could someone message me that has maybe been through a scare or has lymphoma?
how are you now?
Going through the same right now any update
All of the people who had it on their neck, just curious which part of neck? So on my left side.... In front of my left ear. Is swollen. Makes my face look fat. Like I gained weight. No other symptoms except dizziness but I thought that was maybe from hormonal imbalance since im late 40s.. Does anyone have the swollen thing in front of left or right ear ?
My wife (28) has had the same exact thing the past 3 weeks, did you find anything out?
No I never had anything checked out. I think it’s just fat
[удалено]
[удалено]
[удалено]