Richter anxiety

[miskin86]

Hello. I was diagnosed in December '24 with SLL. I am 38 and I was doing great until yesterday. I knew that there was a possibility of an RT in the future but I always thought it was regular DLBCL and it was pretty treatable/curable.

Yesterday I read an article and found out that an RT to DLBCL is not the same as a regular one and it is generally refractory/terminal for most patients.

Coincidentally, I just found a large lump just under my sternum (which originally made me look up details and symptoms of an RT). I have an appointment for next week but I am having anxiety attacks thinking that I am young and the probability of having an RT is high within my lifetime.

How do you cope with this idea?

[Jm954 Administrator]

Hi miskin86 and welcome to CLL Support.

Yes Richter's is something that we all worry about but thankfully it happens to only approx 2-10% of all CLL/SLL patients during the course of their illness, so it's a pretty unusual occurrence. Various markers can make Richter's more likely but not an inevitability and Richter's is curable, although relapse is common.

Jackie

[Poodle2]

Echoing what Jackie has said...it is a worry to all of us...certain markers carry more risks of RT...do you know your markers? I'm almost certain that your lump is "just" your CLL. It is very common to start finding an increasing number of lumps once diagnosed. If worried, get it checked. Some doctors like a precautionary approach and get any lymph nodes, which start getting bigger, checked. In general, lumps (lymph nodes) should be checked only if they start growing rapidly. With RT, there are usually quite a lot of symptoms which make you feel quite unwell. If your lymph node is not getting bigger and you feel well in general, you should try not to worry too much. If you have a specialist nurse, give her a call. She will be able to establish if you need to be seen or if you are fine.

I was diagnosed at 39. It was a nightmare to begin with but it gets easier before it gets hard again and easier...it comes in waves but you will learn to live with it. You are still in a shock. It's a very traumatic thing to go through. Reach out to your GP if you are struggling mentally, there are therapists, psychologists and medication which can help. You don't have to be strong all the time, it is OK to be vulnerable and ask for help. ❤️

[miskin86 in reply to Poodle2]

Thanks. They do not check any markers in my country until treatment since many markers could potentially change except IGHV. I asked two different hospitals and got the same response. I knew there was not any lump in that region because I had my CT, US and PET just 3 months ago and all of them were negative in my chest. My only lumps are on axillaries, and they are definitely the same, maybe a little smaller. I hope that the lump is just my sternum (xiphoid process) and it is just me panicking. It is rock hard and symmetrical.

[Poodle2 in reply to miskin86]

Ok, I understand, that is quite common in some countries. Yes, you are right, markers can change...lymph nodes can wax and wane. I had a quickly growing lymph node about 5 months post diagnosis. My doctor didn't feel alarmed but wanted an ultrasound biopsy to check what was going on. It was just my CLL. During my three years on w&w my nodes continued to grow and pop up in all sorts of places. They got bigger when I had infections as well. If you feel worried, contact your medical team. I always called my specialist nurse. If they feel it needs checking, they will do that.

[SEB0607]

Not sure if you are close to treatment yet, but my consultant told me last week that there are early indications that having O&V treatment reduces your chance of RT, let’s hope that as time passes this is proved out.

[LeoPa]

Anxiety is normal. Especially if there is good reason for it. Accepting this fact is the first step towards calming down. You're not alone. A quarter of the population is on some kind of anti depressant and have anxiety these days. And many of them don't have cancer. Pray if you are religious. That could help.

[BigDee]

Hello miskin86

Whereas Richter's Transformation sounds like it just comes out of the blue, there are symptoms preceding RT. I have been checked out for RT. I have very aggressive CLL with ALC doubling every 2.5 months. I also have had massive bulky internal lymph nodes, 16cm x 18cm x 22cm. Another sign is elevated LDH. My LDH is in a good place. I am also unmutated with 13q deletion and ATM deletion. Even with the symptoms my PET scans cleared me. Blessings

[miskin86 in reply to BigDee]

Thank you. As I have SLL I don't know if it progresses over time or not. The only marker is size of lymph nodes and mine are really small compared to yours. RT possibility is making me nervous but the details you provided just relieved me.

[BigfootT in reply to miskin86]

Miskin86, I have SLL and went through a RT scare just a few months ago. Nodes were enlarging at a noticeable pace over about a months time. The oncologist felt it was still too slow for RT, but ordered a PET. That showed a moderately high SUV of 6.4 in the largest mesenteric node. They then ordered a core biopsy of that node and it showed SLL.

My understanding (and just a patient here) is DLBCL RT tends to happen quickly (in a matter of days) with a significant growth in a node or group of nodes. It's often asymmetrical and the PET SUV is usually greater than 10. My specialist also said most RT patients feel very ill, but again I'm just a patient like you who shares your fear.

All the best, Bigfoot

[PaulaRichmond]

I prayed for peace of mind for you and healing. This is a real mind game at times with the worrying. Hang in there.

[miskin86 in reply to PaulaRichmond]

Thank you for your prayers!