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PMBCL - awareness of primary mass post treatment
2 Posts
two years ago, i was diagnosed with an advanced stage 4 pmbcl. The primary had 13 cm in diameter. I had 8 d.a. EPOCH-R and 3 high dose methotrexate treatments. Today, 15 months post treatment, I find myself struggling because of the discomfort and awareness of the primary in my chest... do any of you experience the same thing? Does it go away?

Thank you in advance for your valuable time 
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1933 Posts

Glad you found this site. Great to hear that you are this far out from active treatment.  I am 2years out from active treatment myself, and still find I get a lot of learning and sharing with others.  We are all but a village, aren't we?
You ask some good questions. At first glance, I did not find any posts from others with a similar problem, but there are some members like Jessa‍ ,  BarbaraG‍ , and Sand44‍ who have identified as receiving a diagnosis of PMBCL.  Some of these members have not been active recently, but perhaps check in once in awhile and may be able to get in touch with you.

Feel free to use the Search window at top of the main home page, or within a Discussion Forum to find discussions related to a particular topic or question you may have.

Also you can call the ever-so-helpful Cancer Information Helpline at 1-888-939-3333 as well.  They have access to credible information and resources, even for less common questions or situations. 

What has your doctor said about your concerns?  Perhaps what you can find out and share here would be helpful to others who are wondering the same thing, but haven't asked yet!

Wishing you many mornings of raising that "f*** cancer" mug!
1 Posts
Hi MC!

I was diagnosed with Stage 1 PMBCL in Jan 2019. My treatment was 6 rounds of R-CHOP followed by 4 weeks of daily radiation. It sounds like we are at about the same stage - 15-months post-treatment - yea us! :) 

I am so sorry to hear about your chest pain and the worry that accompanies it. I had chest pain last November/December (so about 4-5months post-treatment). Along with the tumour in the mediastinum, I also had one around my heart. The pain I felt was more noticeable when I lay down in bed, particularly when I laid on my left side. I was pretty worried so  I mentioned it at my Dec check-up with my Dr.  He had X-Rays done immediately followed by a CT Scan. Nothing showed up with either which was reassuring but frustrating as it did not resolve the issue. The pain did eventually subside over time and I have had good PET Scans and bloodwork at my quarterly appointments, so I try to stay positive.

In the last 6months, I had issues with nerve and joint pain (incl a frozen shoulder that is thankfully starting to thaw!). My family doctor mentioned to me that she had another patient who struggled with joint issues post-chemo and as no other more serious indicators have been found, I have to accept that my cancer treatment is still kicking my butt a bit. :)

It has been a frustrating journey. I actually felt so much better 2-3 months after treatment - I was cycling and hiking - then it all seemed to go sideways. I am getting better - far less pain and much more mobility - so I know I will get back to 'normal' or at least a new 'normal' that I can live with. :)

I hope your chest pain dissipates soon but I do encourage you to chat with your Dr. I did feel a lot better after having the tests - although it did not provide a definitive answer, it did confirm that it was not cancer returning.

3 Posts
hi, sorry I'm late to see this, I don't check into this site as much as I used to.

I had pmbcl in 2016. I did RCHOP and radiation. By February of 2017 I had my PET scan and was declared in full remission.
After my treatments I was left with scar tissue that created discomfort in my chest and would constantly have me thinking that’s it’s the cancer starting to grow back or that in never fully went away. But after each check up I was confirmed with the fact that I was indeed done with cancer, and as more time passes the farther behind it gets and the more believable it becomes.

Sometimes the overwhelming feeling that cancer was there clouds over the triumphant fact that it’s gone.

And that’s okay.

I found that first year after to be the hardest. To get back to the “normal” that people think you're supposed feel. But normal is no longer what you used to feel but what you now create. My best advice for finding normal is to take is slow and steady, if anything, steady. You know your body best and what you are able to endure. I think finding new routines and new patterns worked best for me and letting go of the thoughts of trying to be what I was before cancer, because the me after cancer is a much stronger person and I needed different routines to suit that.

I hoped this helped in some way or answered your question. feel free to reach out. I’m going to try to visit this community more.

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