I have lymphoma - ask me anything

[Euskadi]

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.

[NGD99]

How did you were diagnosed? What were your symptoms and how large were your swollen lymph nodes?

[Euskadi]

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.

[becca98]

No questions - hope your recovery goes well❤️

[NervUs]

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

[Euskadi]

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!!

[becca98]

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)

[NervUs]

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!!!!!

[Euskadi]

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]

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!