Has anyone had experience of PCBCL?
This is a very rare type of lymphoma and the ultimate in watch and wait.
A tough type to diagnose as many clinitions have never encountered it.
There are three subtypes:
Follicular - head neck & trunk (my type)
Marginal zone - arms
Its mainly harmless and something you just live with but it does take some scary diagnostic time to establish. After two traumatic years of worry I am signed off to self monitor for its return. It tends to be a slow grower but incurable - sounds freeky but its not really. You just watch for bumps and in my case knock it back with antibiotics - Doxycycline twice daily for 3wks, 3wks off and then repeat. The results were amazingly quick.
Hi Karen, thanks for telling us about your diagnosis and treatment. I have Chronic Lymphocytic Leukaemia and I am also on watch and wait. I have found there are so many different conditions people on the site have but it is the thoughts and feelings we have in common and that has really helped me. However if you would like to speak to the Freephone Bloodwise Support Line (just check if it is freephone if you are in Ireland) on 0808 2080 888 they are open Mon-Fri 10am-4pm. There are also some posts on this site about watch and wait. Take care.
Thank you Erica but I’m fine now. After two years of research I realise that it’s ni bother at all. Just wanted to post in case anyone else has recently been diagnosed & are hunting for information. Please message for private information.
All the best
How is everything going with you so far regarding PCBCL?
All is fine with me. I am currently signed off clinic visits until I grow another bump. Probably in the next 2 to 7yrs it will appear again but until then I just do my best to forget about it. Resigned myself to the fact I have a type of lymphoma that no one is interested in, it will not kill me but may appear from time to time. If it comes back I shal cut to the chase and just get another six week course of Doxyclicline like last time and be done with it. So I can cut out all the fuss wittling worrying and waiting that this type of cancer creates in so many people. Bit of a Cinderella type really. Seeing that stress appears to be its trigger I am focusing on keeping that very low in my life from now on.
Hi Karen, it’s the watching and waiting thing, I still get a yukky feeling in my stomach before and during any medical appointments 14 years post diagnosis. And as for stress, I definitely do not deal with it as well now, it is what physically, practically and emotionally stresses me. Any tips please.
Well, all I can really say is that knowledge was the key to me taking hold of the issue. We have all been conditioned from birth to fear the ‘Big C’ word and in some cases that is still justified but in many it should not be, now.
I can be easily panicked as I am also dyslexic but I have learned to slow things down to my pace, in order to manage better and to take time to understand things fully by asking questions - lots of them. My poor CNS must have thought I was going crackers at the start but eventually I was teaching her things about my type of lymphoma.
I think the main problem with lymphoma is there are sooo many different types but the medical profession only have one protocol system which has to be fast until they know what they are dealing with. This panicks everyone. Then when they diagnose an indolent one the whole system relaxes, apart from the patient because they don’t understand why. Many jump to the conclusion they are dropped because there is nothing more to be done and stress out completely. I have always been a Why? person. So I found out everything I could by researching myself. Once I understood about my Primary Cutaneous Follicular Lymphoma and what may cause it - stress possibly playing a big part. I focused on that, I felt more in control of my own destiny. Felt I needed to shake off the ‘patient’ label and start being normal again. Stress alone can exhaust anyone and that appears to be mostly the case with me. So I learned to pace myself better, not do quite so much, not push myself so hard, not feel guilty when I cant keep up with others or need to rest sooner. Just gave myself permission to take better care of myself - eat, sleep & exercise properly and relax more often in what ever way makes me happy. Gradually the panic subsides. Which is quite possible once you read for yourself that your type of lymphoma may be a pain but it won’t really do you big damage and the more you can stay away from any kind of treatment the better it is. I know enough to call my heamotology clinic if and when I need some help. Until then I leave them to deal with what I call the serious cases who need their time far more than I do. Help will be there if I grow more bumps but for now I can push it all to the back of my mind and get in with life. No doubt there will be some panic when a new bump is detected but it will be far more manageable and controlable because I know all about it.
Another thing I have done was to reach out and find lymphoma friends. They are really the only people who understand where you are coming from. Prop you up when you are having a tough day and support you if you have to go to clinic or for treatment.
Create a club - online or locally meeting up for a coffee once a month to have a lymphoma grizzle or a lymphoma free zone whatever suits you. Be proud of yourself for what ever you manage to achieve, we are special, not everyone gets a challenge like this to handle but by standing together we can cope quite well. Be creative - find what helps you.
My journey started in October 2016, I found my own cure via research & scanned clear in April 2017 and cross fingers nothing has come back yet. I know it will at some point but we will cross that bridge when we come to it.
Good luck with the fight back.
Wow, Karen, thanks so much for taking all the thought into your comprehensive response. What personal insight, thanks so much for making so much sense, I have learnt a lot from you and in times of me doing too much or being stressed I will think of you.