Hodgkin Lymphoma - The road to diagnosis: Symptoms, GP, Referral, Biopsy & PET scan. Lymphoma WTF?!
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- čas přidán 16. 04. 2021
- I’m Scott Dale, 28 from Port Talbot, South Wales & I’ve just been diagnosed with Stage 3 Hodgkin Lymphoma. This is more or less the beginning of a diary that I’m creating to document my progress through the cancer process. “My Cancer Journey” if you like.
This video outlines my symptoms & the route from my first GP appointment through to my hospital referral, ultrasound biopsy, PET scan & eventually my diagnosis.
#hodgkinslymphoma #lymphoma #cancer #bloodcancer #cancerdiagnosis #lymphomadiagnosis #petscan #biopsy #stage3cancer #lymphomawtf
We have a nearly identical diagnosis phase! Painful lumps in my neck, spread down my left side within days. Neck ultrasound biopsy, chest xray and ct scan all showed something suspicious. No other symptoms, was told 95% sure no cancer. Had surgical neck biopsy which confirmed stage 3 Hodgkin’s lymphoma. So shocked!! I was diagnosed August 2020. Finished chemo February 26 this year. It’s a hard journey, but I was declared cancer free March 12! Prayers for you as you go through this!
Sorry again that you had to go through that. That is a long hard wait for anyone. Stay strong
Hi mate I have been through your journey last year at the beginning of covid 19. I was seen by a great GP and he helped push me through the process and I was also diagnosed quickly with stage 4B t cell lymphoma. Finished chemo in June 2020 and have been in remission for 1 year this month.
Hey Nigel! Thanks for the message! Glad to hear you’re doing well now too and in remission! I have my pet scan results on Thursday after 2 months of chemo to see how it’s going! Wish me luck haha!
Good luck with your treatment young man.
Thank you for educating us on how we should processed and pushing on the medical field 🙏❤️
No worries at all - glad it could help ♥️
Thanks for posting this, it's really helpful/educational for those who are diagnosed. Before I was diagnosed with stage IV Hodgkin's Lymphoma I had random symptoms that i didnt associate with cancer:
1.-tired alot, but i was a nurse working the night shift.
2.-sweating at night and during a work shift, but I always run hot so i didn't think much of it.
3.-itchy legs, but i just thought some lotion would help.
4.-and last but not least, chronic non-productive cough that I attributed to my seasonal allergies. And when I went to my GP because I felt it was happening for too long, they just brushed it off as post nasal drip.
This process went on for at least a year if not more. I was only sent for US, Biopsy and all that after i noticed a marble sized lymph node on my neck.
My ABVD actually didn't get rid of the lymphoma and I had to go through some more chemo to prep my body before having a bone marrow transplant. I was able to be my own donor due to my bone marrow being unaffected. I was diagnosed at 25, Had my Bone Marrow transplant at 26 and I just turned 30 this past January and have been in remission ever since :)
Did you ever get Pet Scan Ct FDG?
@@KennyGuyte yes, multiple. Before and after chemo/transplant
@@JesusCM16 My Pet Scan CT FDG didn’t find anything but a suspicious node in my right side had it Ultrasound and it was normal. Can I rest my mind and trust this? I know you’re not a trained Doctor; however, you’re experienced and I value your opinion .
Hope you are well!! I asked for an ultrasound because I have the exact same pains and thought it was my thyroid possibly. Been going on for 2 months now and thyroid is perfectly fine.
I have "multiple round and ovoid lymphnodes " all throughout my neck. The sonogram report says "relatively benign looking" ...whatever that means. Bottom of report says I need more tests though. Interesting story!
Hi,thanks for sharing your story.I found a lump a few months ago,just above the collar bone it doesn't hurt,but it aches around it now I'm now waiting for an ultrasound,im just constantly exhausted and itchy.
Hello
New subscriber.
Ive been having almost exact same symptoms since June this year it started. I thought it was just a scratchy throat. But it has not gone away and the swelling and few lumps have gotten bigger. I have just got health insurance long story but here in the US the cost is ghastly and i honestly could've afford a trip to the emergency clinic. So now i have my first appointment Jan 03 and i feel split. Glad im finally getting it checked out but anxiety because i just have a gut feeling. With the family history.
Any advice on advocating, or the extreme exhaustion?
Glad you are doing well im going to go through your journal videos today. Thank you for sharing.
Happy holidays 😊
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Thank you for sharing your story. I had an ultrasound last month for swollen left subclavicular lymph nodes. The doctor said they looked ok and booked a follow up in 3 months because of my insistence. Now I have 3 more swollen nodes in my neck. After hearing your story, I will message my doctor tomorrow. I feel like I shouldn’t wait for follow up until July. My swollen lymph nodes always tend to be swollen less for my doctor appointments too…haha.
My 12 yrs old have an odd lump under her arm. It looks like little balls inside the lump and greenish color. Ultrasound/ Blood work came out normal. It's 3weeks now and still there. It does fluctuate in size thru out the day. Her Ped referred her to see a ped. surgeon on my requested. Appt. June 12. I hope they do a biopsy. I just have a bad feeling about it.
Thank you so much for your video! I have been watching many stories of lymphoma diagnosis and symptoms. I have been experiencing many of the "lymphoma symptoms", yet my dr is convinced I am depressed and should be going on antidepressants. Which is insanely frustrating and insulting. I have lost 40lbs in the past 7 months, I have swollen lymph nodes in my neck, armpit and groin. I experience nausea every morning- usually waking me up- pain in my shoulder, hip/groin and low back, itchy skin, sweats and extreme fatigue regardless of how much I sleep... I also have no appetite. I have seen my dr probably monthly for 7 months due to symptoms. I ended up in Emerg 4 weeks ago and the dr was concerned about my swollen nodes. Problem is, just like you, whenever I go to my dr they aren't as swollen (although still swollen) but they are going up and down. Got a full blood count done and to rule out any infections like mono ect. Came back completely clear. When I went back to my dr she told me I had a perfect blood count and my lymph nodes did not feel like how a cancerous lymph node feels, that they are moveable and cancerous nodes are always fixed. Due to my going to the emergency they had booked me in to see an internal medicine dr for a consult. She has sent off for a urgent CT scan... this was 2 weeks ago and I am still awaiting the call for the scan.
I just recently found out that my mothers father passed from blood cancer a couple years ago. I have more nodes popping up on my neck. I feel like I am going crazy. I find myself doing the same and checking my nodes constantly thinking they will just disappear and I will prove my dr right and be fine.
I do have a question, when you say your nodes felt "rubbery" what exactly does this feel like? My longest nodes seem to be quite hard- although not fixed. But the new ones start off very soft and become harder over the course. But the rubbery feeling is what I am struggling to understand.
I hope all is going well with you and your journey.
Hi Ashlee! Wow it seems you’ve had a difficult time with it all. I still stand by the opinion that the process before diagnosis is by far the worst part of the whole process. The unknown and the lack of answers is just awful and nobody can understand how it feels unless they’ve been in a similar situation.
When I say rubbery, I mean that they aren’t solid like a rock but also aren’t squishy so you can kinda move them and feel them pressing down slightly but with some resistance. Almost like an in between of all of the examples that they give you on the websites etc. so incredibly frustrating.
I hope you’re doing okay.
Scott
Only one of mine was fixed.
Did you ever figure out any answers? Reading your story is so frustrating! Hope you are well!
I hope you are ok.
We need answers, are you okay now? I hope so.
At the age of 16, I started experiencing some unsavory symptoms, including flushing , fever, swollen glands in my neck and armpit, headaches and severe exhaustion regardless of the amount of sleep I got etc. my gp said that my symptoms were “normal for kids my age” and that was that. When I tried to get a second opinion they said I was experiencing symptoms from the prescription drug accutane even though I had stopped taking it months before. I except the fact that I’m a hormonal teenager and that I just need to give my body a chance to even out. Fast forward to this January, I’m sick as a dog. My entire neck and throat was rock solid and it hurt to speak, breathe, or move at all. I had a low grade fever and a lot of drainage. Went to urgent care, got tested for Covid, negative- got tested for strep, negative. They wanted to send a culture to make *sure* sure I didn’t have strep and in the mean time they gave me a hefty dosage week-long round of antibiotic. Finished the antibiotic and still felt like shit. Swollen glands all over, green, chunky phlegm, headaches, my exhaustion worsened, and my entire body started to itch. My mom started to get super worried so I went back to urgent care and they were almost positive I had mono. Finger prick, negative. The nurse practitioner still thought I had mono so she took my blood and sent it off to be tested for mono antibodies and told me to take it easy until I felt better, and told me to expect a call from her in a couple days. Next day comes and I get a call at work, antibody test was negative. I will never forget the tone in her voice over the phone, telling me that I needed to get in to see my gp immediately and get further testing. For context, my gp is/was a pediatrician, and even though I’m 18, I’m still allowed to see a pediatric doctor until I’m 19 because of insurance. I called them and they said they couldn’t see me because I was too old. In reality, I think they knew that my insurance would run out on my 19th birthday and didn’t want to deal w me. So I had to call 7 different doctors offices to try and find a doctor and the earliest I was able to get in with someone was April 1st. I’m feeling worse by the hour, my throat and chest are tight, and I feel like I can’t get a breathe in. Im not able to eat anything without it immediately making me feel like I’m going to vomit. My mom is so worried and she doesn’t want me to wait till April but I don’t really have another option unless I go to the ER, and god knows they’re absolutely useless in situations like these. I don’t know why I’m typing this comment or leaving it, but I felt the need to speak my truth, because I’m suffering.
Keep pushing for answers.
If you go to the hospital then they have to run test on you and they will refer you to a Cancer Dr. It's not useless
Thanks for sharing this as I have been a bit unsure about a possible lymph node above my collar bone and havent seen much on them in that area. I have some in my right groin for the last two months but my blood work came back fine and so my Dr told me to not to worry for now unless they get bigger or new ones etc even though I was having night sweats, nodes painless and fixed and hard etc and other symptoms for 6 months! Well for the last few months I have noticed a hard fixed thing above right collarbone taking up a large area which sounds like yours. I never mentioned it to the Dr as I didnt know if its just muscle or a lymph node due to its hardness. It doesnt feel like a round ball like Id expect for a node. Also I can only feel it when standing and it is not visible to the eye but the general area looks inflamed. Do you think thats a lymoh node and should go get it checked? I am nervous like she thinks its anxiety or something. Also one on my underarm is started now. Was yours able to be felt in collarbone when standing or just sitting like mine if you dont mind me asking
I also didnt know if lymphoma nodes could go up and down a bit which is interesting because the ones in my groin are always there but somedays are not as big so good to know//1
Just saw your question and wondered how your doing now? I don’t have it but my best friend is going through all the tests right now with those symptoms and trying to find out as much as possible to support her. But I hope your ok and got it all checked out in the end bless you x
@@GodsGirl48 After many months of symptoms they ended up suddenly stopping including lymph node size diminished significantly. I hope it goes well for your friend. I
Hi! Hope all is well! Can you answer why in the first ultrasound they said they did not look cancerous but then in the biopsy ultrasound they said it looked suspicious? What was the difference in what they saw at each ultrasound? Thanks!
Hey 😃 I didn’t have two ultrasounds. The first ultrasound I had was the biopsy ultrasound. Before then, it was just bloods and examination. The x ray prompted them to move quickly though I think.
Was the lymph node that the dr was highly suspect about, above the collar bone a node that normally swells with cancer? I’ve seen another video where they said something about the node back in history being called the death node….I’m sorry for the questions
I have that sir
Mucha suerte amigo, que todo salga bien, cuando vas a iniciar tus quimioterapias????
Gracias 😊 Much appreciated. I start my chemotherapy on Tuesday
@@lymphomawtf9896 😍😍😍😍 you understand me, you speak spanish??? And thats nice amigo, good luck and nice videos, are very interesting
I’ve had a swollen lymph node on the right side of my neck without any reason. I’m not sick, or haven’t been sick in months. I have no idea how long it’s been there for. I just randomly rubbed my neck and noticed it. I have a doctors appointment on Tuesday, but I have this feeling that she will just brush it off as nothing. This is giving me severe anxiety because I know it’s not normal. How have you been doing so far since you finished your last chemo treatment? I hope all is well.
Update?
@@Uraharakisuke10 I went to my doctor, she felt it, said it felt normal but sent a referral to a radiologist. Haven’t heard from radiologist.
@@aciditywormhole9898 i have swollen glands from 2 years nd I'm alive lol I think it's because of stress nd all well i visited doc many times they just said unless they don't grow they are harmless. Don't worry i was depressed whole 2020 because of this but now I don't care about them
@@aciditywormhole9898 wait do you have any tattoo on your body
@@Uraharakisuke10 yes
Your PET SCAN CT FDG was when you got your diagnosis? I had PET SCAN CT FDG and according to my Oncologist it was normal with a suspicious finding under my right armpit. That was ultrasound by surgeon to be normal lymph node size he scheduled for Breast Ultrasound and the Radiologist determined it was normal and would not biopsy.
However, I still have weight loss and lymph issues.
Hey - sorry to hear you are going through it, especially without answers! My PET scan was after my biopsy and then two weeks later I was told my results, without much urgency haha. After that though, it was all very speedy
What a terrible experience - to have to be waiting for an real answer with an opinion that you have lymphoma .. how cruel. I hope that man was talked to about how unprofessional that commentary was. My son was referred to a pediatric oncologist because of his constant swollen lymph nodes and other symptoms. Just the thought of a possibility has put us all over. I sure wish you well.