View Full Version : I have lymphoma - ask me anything
Hi! I used these forums a few years ago while I was getting panic attacks and they really helped me. I remembered that there were a lot of people would post about having swollen glands and would panic about having lymphoma. Well, I was diagnosed with Hodgkin's Lymphoma in March of this year and on Monday will have my last chemotherapy! I have been through what you guys are scared about and look! I am still here!
I would love to give back to the community that once helped me, so please ask me anything about my experience and I will be happy to answer.
One thing - a big thing: I am not a doctor and cannot diagnose you or give you any reassurance about your health, you need a doctor to do that. If you are seriously worried about your swollen glands go and get them checked by a clinical practitioner - advocate for your health. I am only here to answer questions about my experience as a cancer patient.
How did you were diagnosed? What were your symptoms and how large were your swollen lymph nodes?
It took about 8 months for me to get diagnosed. The lymph nodes were the last symptom to appear. The first symptoms were fatigue that wasn't solved by sleep, painful joints, recurrent rashes, intermittent flu symptoms that didn't ever turn into the flu and then night sweats that completely drenched me and the bed. The lymph nodes were in my collar bone and on the side of my neck and shrank/grew - the one that was removed for biopsy was about the size of a jelly bean. I had other swollen nodes around my body but the lymphoma was only in my neck, chest and a tiny spot above my liver.
Basically I went to the doctor 3 or 4 times before I was sent for a CT scan, then the scan led to a biopsy and PET scan and full diagnosis.
No questions - hope your recovery goes well❤️
Glad you found your cancer and that you seem to be doing well!!
The one thing I've learned in my incessant googling about cancer is that it's a wonder it's ever found. Seems like every cancer story involves months of seeing doctors who don't investigate problems properly at the first pass, unless it's insanely obvious. Maybe I shouldn't say that on a HA site, but damn! I have a mass in my toe, and it has a lot of concerning characteristics. THe first doctor misdiagnosed it without using the proper screenings or even knowing what the proper screenings were. I know this because the second doc was a little more informed. He did recommend me for MRI, which is proper protocol from what I've read, but didn't order contrast so the MRI gave incomplete information. Now I am left with a "guess" about my diagnosis, which thankfully was not cancer, and lots of "it's probably this, call me if it gets worse." So, I get to walk around the earth assuming my toe is fine but not knowing anything really, when it would have been easy as hell just to order contrast and get more complete information! GAH!
I guess I'm mostly at acceptance with it, but it still bothers me that there is so little motivation to rule out cancer when objective symptoms (like a lump) suggest it. I do see the other side, too, that our medical system overtests and does invasive procedures to far too many people to find even on instance of cancer. It's complicated, but I just want to know what the hell is in my toe!!!!!
Sorry to hijack-- I just needed to rant, I guess :blush:
Thanks for the well wishes!
I know what you are saying about diagnosis, it does take a while. My diagnosis took a while because Hodgkin's is pretty rare and as I am 41 I am a little on the old side for it - it's more common in young people and men. My doctor simply wasn't looking for it - she imagined it was an autoimmune disease or something else.
When they told me I had cancer I was terrified - it's our worst fear, isn't it? But to be totally honest, it hasn't been as bad as I thought. Chemo is pretty tough and for me it's been once every 2 weeks for nearly 6 months, but it's completely do-able. Life goes on and you just get on with it. It's cured my anxiety, I no longer worry and fight against the fears because I've had the worst one come true - and I'm still here. No amount of healthy living and worrying would have saved me, I was just unlucky to get cancer. Once I'm better I'm going to spend less time worrying and more time living!!
Thanks for the well wishes!
I know what you are saying about diagnosis, it does take a while. My diagnosis took a while because Hodgkin's is pretty rare and as I am 41 I am a little on the old side for it - it's more common in young people and men. My doctor simply wasn't looking for it - she imagined it was an autoimmune disease or something else.
When they told me I had cancer I was terrified - it's our worst fear, isn't it? But to be totally honest, it hasn't been as bad as I thought. Chemo is pretty tough and for me it's been once every 2 weeks for nearly 6 months, but it's completely do-able. Life goes on and you just get on with it. It's cured my anxiety, I no longer worry and fight against the fears because I've had the worst one come true - and I'm still here. No amount of healthy living and worrying would have saved me, I was just unlucky to get cancer. Once I'm better I'm going to spend less time worrying and more time living!!.
This is a lovely paragraph, after worrying about cancer for about 3 years now I can't imagine what I would be like to be diagnosed but when I read the strength of you and some others on the forum it really makes me think how silly I am for worrying! ❤️ I really hope your recovery goes well and you stay on this forum, you will be helping a lot of people by offering your advice on a cancer that so many people fear on here(including myself) :roflmao:
Thanks for the well wishes!
I know what you are saying about diagnosis, it does take a while. My diagnosis took a while because Hodgkin's is pretty rare and as I am 41 I am a little on the old side for it - it's more common in young people and men. My doctor simply wasn't looking for it - she imagined it was an autoimmune disease or something else.
When they told me I had cancer I was terrified - it's our worst fear, isn't it? But to be totally honest, it hasn't been as bad as I thought. Chemo is pretty tough and for me it's been once every 2 weeks for nearly 6 months, but it's completely do-able. Life goes on and you just get on with it. It's cured my anxiety, I no longer worry and fight against the fears because I've had the worst one come true - and I'm still here. No amount of healthy living and worrying would have saved me, I was just unlucky to get cancer. Once I'm better I'm going to spend less time worrying and more time living!!
That is amazing and wonderful that actually getting the cancer removed your anxiety and you are at peace with it!!!
Since my nature is to go out of my way to find things to worry about, I have thought long and hard about what getting cancer would be like, and I see such an outsized role for anxiety in a ME with cancer (just like it in a ME without cancer) and, in my mental rusings on living with cancer, I have worried about letting the fact that "I have cancer" and all the fear that implies would gobble up entirely my ability to enjoy anything about life, relationships, etc, just as I have let hypochondria do at times. That you came to zen is absolutely AWESOME, and I am so happy for you!!! I hope your treatment ends soon and you start to feel better and live it up like nobody else!!!!!
Hi worriedsick! Thanks for the kind words, I'm glad that sharing my experience is helping others.
I'm no different to anyone else, I am pretty squeamish and have always hated the doctor/dentist and suffered from anxiety. It's amazing what you can get through when you are facing it - don't ever underestimate your inner strength. They say fear is False Expectations Appearing Real - it's true. My thoughts of what cancer would be like was worse than the reality I've faced.
And I'm sticking around - I'm happy to help anyone with questions. Remember that there are lots of cancers and chemos - I can only speak for mine.
---------- Post added at 16:19 ---------- Previous post was at 16:15 ----------
Hey Nervus! When you have cancer you realise tjat you actually want to be more than defined by your cancer and you fight for your identity. It's like, hey - I'm not just a sick person!! I've learned so much about myself and others from this experience - best worst thing that ever happened to me! Thanks for the well wishes!
ServerError
09-09-17, 17:27
I have a question for you:
Are you from/do you live in the Basque Country? I visited a couple of years ago and liked it so much I wish I could live there!
Hi ServerError! Yes, San Sebastian! It's a beautiful part of the world isn't it? I hooe you come back!
Hi ServerError! Yes, San Sebastian! It's a beautiful part of the world isn't it? I hooe you come back!
I visited St Sebastian when I was staying in Pamplona. It's very beautiful!
ServerError
09-09-17, 17:36
San Sebastián is one of the most beautiful places I've ever been. I'd go back in a heartbeat!
Velociraptor
11-09-17, 06:16
Thanks for making this post.
I have questions for you - how often did you have those drenching night sweats?
Also how bad was the fatigue?
I hope you are feeling much better these days!
Stephenie.welch
11-09-17, 12:33
They saw lymph nodes in your chest? Was it an x ray ?
Stephenie.welch
12-09-17, 02:11
also, jelly bean size doesnt even seem that enlarged.. were any of your lymph nodes larger?
Hi Velociraptor! The night sweats came in the last month or so before diagnosis and were pretty much every night and even when I napped. They are like nothing I've experienced before or since - and I get hot and sweaty because of the chemo. They are drenching, as if you have literally stepped out of the shower and require a change of nightwear and bed sheets. The fatigue was crippling - I was very active before I got cancer and went to being exhausted after light housework, I was signed off sick from work a month before chemo started and probably won't return until Jan. I had my last chemo yesterday so it's still early days, but thanks for your best wishes, hopefully I'll be feeling stronger soon!
Hi Stephenie! You say my lymph node didn't seem enlarged - what were you expecting?! Cancer doesn't necessarily mean massively enlarged nodes everywhere. There were a scattering of nodes in my neck - lucky for me as it meant easy access for biopsy - and the largest mass was, as for most nodular sclerosing cases, in the mediastinum. I think it was 5cm by 6cm by 7 cm. As I said previously in the thread, I had a CT scan with contrast that showed enlarged nodes all over my body but it was the biopsy and later PET that showed the lymphoma was only concentrated in the left side of my neck, chest and a spot above my liver. Official staging was 3b.
---------- Post added at 10:08 ---------- Previous post was at 09:48 ----------
I was hesistant to post the link to my instagram but if anyone is interested in seeing my sat getting chemo, my scars and even the famous jellybean lymph node in all it's glory, send me a DM.
I started getting the night sweats and fatigue about 2 months before I was diagnosed (Stage IVa) and went in for surgery and treatment. The other similarity is that the scans/xrays showed the enlarged nodes. You had a rather large one in your chest area, I had two over 5cm in my neck. It looked like I had the mumps!
I always say: Cancer is an uncontrolled growth of abnormal cells. It doesn't come and go nor does it stop once it starts.
Most here on the node wagon self examine themselves and if they find a node, poke and prod until they're freakin' bruised! :lac: And... a "pea" or "jelly bean" sized node is not considered enlarged.
Positive thoughts
I had two over 5cm in my neck. It looked like I had the mumps!
Positive thoughts
Could you see them from the outside?
Were they painful or tender?
Since we're sharing :-)
Could you see them from the outside?
Were they painful or tender?
Since we're sharing :-)
Yes, it was obvious they were enlarged looking at me. It really did look like I had the mumps on the left side of my neck by the time I went in for treatment ("uncontrolled growth"). Not painful or tender. Hard as rock and immovable. I didn't really feel pain as much as just a very uncomfortable pressure inside as the tumors were wrapped around the muscles, nerves and
blood vessels in my neck.
Euskadi affirms what I've been saying here for years. Tests will show something out of the ordinary. If they think for a moment something is amiss, they'll pursue it.
Positive thoughts
Euskadi affirms what I've been saying here for years. Tests will show something out of the ordinary. If they think for a moment something is amiss, they'll pursue it.
Hi Fishmanpa! Good to meet a fellow survivor and to hear you are also doing well!
I love this quote - everything concerning your lymph nodes is subject to testing by a specialist!! I felt that they were enlarged and so did my GP but neither of us could confirm they were malignant, that's why she took into account my other symptoms and sent me for a CT. When I went back to see her after the hospital had given me my Hodgkin's diagnosis she was very surprised - it's such a rare cancer that she never expected it.
I hope this shows that you shouldn't try to self diagnose or jump to the worst conclusion over an enlarged node. I've read people's reassurances "it would have to be the size of a golf ball" "it should/shouldn't move" etc - please just go and get it checked!! Trust in the experts!! And look at me and Fishmanpa - we are proof that even if the worst happens, there's lots of hope.
Stop poking and worrying.
Hi Euskadi - I'm new here and a breast cancer survivor - almost 9 years according to the docs but I count it from when I got it out of me (my surgery) so I'm calling it 10 years! I found it interesting that you called it our worst fear. My experience was that it's not really painful (except from other people I've seen it becomes more painful towards the end). I'm honestly much more afraid of burning or torture. I know they are actually less likely than cancer, but I was surprised and relieved to find that the treatment caused me much more discomfort and lingering issues than the actual cancer. You said you just finished chemo? I finished over 8 1/2 years ago and still have problems from it. Chemobrain, fatigue, etc. Any thoughts?
Hi Allurelle! Congratulations on your survivorship! When I say "worst fear" when speaking of cancer I suppose I am referring to the fact that most people associate cancer with the pain of treatment and possibility of death. When I was growing up I always heard it called "the big C", even the word scared people.
One thing I've learned is that there isn't one cancer, there isn't one chemo and there isn't one universal experience - which is why I stress that I can only speak for my experience. A blood cancer like Hodgkin's is very different in presentation and treatment to a solid tumour cancer like the one you dealt with.
I was very, very ill when I was diagnosed and with each chemo session I began to feel better. I've had 12 infusions of ABVD chemo through a picc line and the only problems I encountered were blood clots, which were quickly and easily managed, and some gastric issues, again very easily solved. It's maybe too soon to judge any lasting effects but at the moment I'm feeling pretty good and optimistic. Sorry to hear you've been left with fatigue and chemo brain.
In any case, I would hope that our stories would give people hope. These things are not necessarily insurmountable.
I'm sorry for your diagnosis but how amazing to offer your experience thank you!! 2 years ago I discovered an extremely mobile node about my rt collarbone extremely mobile and non tender, ultrasound showed it a little over 1 cm, I was suppose to go back and didn't. Now 2 years later I'm doing back. I still have the one above my collarbone but feels smaller, I have one at the base of my rt neck, and after a huge health anxiety attack after the death of my gma I finally found one above my left collar bone. All are pea size and very mobile and soft. I just left the surgeon. I'm having an ultrasound scheduled. At one point he made me feel ok then he made me nervous and while I was walking out I heard him through the door recording in his voice recorder about a possible fna and Ct scan and now I'm even more terrified. No symptoms ... just fear. I want to have more kids and my life is finally going awesome after two years of hell and now this. Any input would be great thank you so much
2 years ago...
Cancer is an uncontrolled growth of abnormal cells. It doesn't come and go nor does it stop once it starts.
Think about this. Two years... Two more years of poking and prodding etc. In two years, you wouldn't be with us or be extremely ill if something sinister was going on. If he sends you for tests, it's just CYA (cover your arse) medicine.
Positive thoughts
Thanks... I just keep trying to remember that. But I feel like they keep popping up and the left collarbone one really sent me out of control.. staying to remain positive... appreciate the grounded response thank you
---------- Post added at 15:56 ---------- Previous post was at 12:07 ----------
.. just had my appt today and ultrasound already called to schedule it, usually they take a week to even call. Even more nervous now!! I hope everything is ok
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