Cell b lymphoma

Hi Nadz and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and to hear about your Non Hodgkin's Lymphoma diagnosis. I am Mike and I help out around our various Lymphoma groups.

I can understand you concerns, getting a cancer diagnosis is most likely everyone's worst nightmare. But once you get to know more about the nature of Lymphoma and how it's treated you will start to see things much more clearly.

I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of T-Cell Low-grade non-Hodgkin lymphoma (NHL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Do you know the EXACT name of the type you have?.... as there are a number of B-Cell NHLs and each can be rather different........ I say this as there are 60 types and sub-types of Lymphoma

You use the word 'spread'....... if we were talking about others cancers like Lung, Kidney, Colon....... the word 'spread' would be a significant indication of how bad things are......... in Lymphoma it is totally different.

Lymphoma is a cancer of the Lymphatic-System..... so your Lymphoma (the same Lymphoma cells) can turn up anywhere in the body so there is no secondary cancer in Lymphoma - wherever the Lymphoma it is the same thing........ this is the same for a blood cancers.

I have a very rare skin NHL (7 in a million) and at one point my skin was 70% covered with tumours, I also had Lymphoma cells in my neck Lymph-Nodes and Bone Marrow.......... But I am now 8 years out from my last treatment and living a great life.

How are you feeling generally as in your physical health?...... if you are still getting on with normal life stuff....... I would recommend that you don't telling your children but wait until you have all the information including a treatment plan and take it from their.

Getting clear information is important so have a look at this link Questions to ask your medical team about Lymphoma as it highlights the main questions you should be looking to ask and get answers for.

Always around to help more or just to chat.

Thank you so much for your reply, this all started in March when I developed two large masses on my tongue i was 27 weeks pregnant at the time… to cut a long story short it has been mis diagnosed and 7 months later after a biopsy was taken only 2 weeks ago I was told that in the masses the pathology found b cell lymphoma and that I would now be referred to an haematologist to arrange further tests. That is all I know as the consultant I saw was a maxifocal consultant and it wasn’t “his field” I feel massively let down, upset that it’s taken 7 months to diagnose. I just don’t know what to expect thank u for replying 

Take a breath and another…… you are doing great especially with a little one in the house Boy or Girl?….. we only do girls in our family we have 2 girls (they were in there mid teens when I was diagnosed) and they now have 4 girls between them

You journey to diagnosis is actually not that unusual.

Lymphoma can be very hard to identify and often mimic ms other types of conditions…… only a biopsy and scans do get a clear picture…… but medical professionals can be blindsided at times be the signs….. for example nothing clear would show up in a blood test that would point to Lymphoma and this is with it being a blood cancer!!!.

It took a full 2 years with my great GP then a further year, 6 biopsies and a few CT scans with my consultant until I was officially diagnosed….. and that was with him being 99% sure as to the type I had - this is Lymphoma!!!!

What to expect?…… Heamatology will get a clear diagnosis - as I said there are a few types of B-Cell but that fact that this has been going on for this amount of time it suggests that this is a slow growing - low grade NHL.

If it was a fast growing - high grade NHL you will have had to had treatment a long time back.

Once they have the exact type and your stage…..  

Staging in Lymphoma is rather different and unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies 1) Where the Lymphoma is presenting in the body (it can be anywhere) 2) What is the best treatment approach and best treatment type for your presentation and 3) How long your treatment needs to be.

When you have time have a look through the links I have given you as there is some great accurate information all taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

Please, please, please don’t do random Google  searches….. it’s not that helpful and not good for the space between your ears.

Lymphoma Action run regular Support Platforms both for patients..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.….

And as always this group is here to answer questions and give you support ((hugs))

….. right back to painting the lounge

Hi 

My diagnosis was last week 

low grade b cell non hodkins lymphoma grade 4. 

an absolute bolt out of the blue. I’m 55. The grading is really troubling me. I have been told it’s watchful waiting 

any information or support appreciated 

Hi Donna69 I just put up a reply to your own post that you put up.

Hi highlander sorry for the late reply, I have been undergoing radiotherapy to my mouth, my diagnosis is stage 3 extra nodal marginal zone lymphoma, unfortunately a recent pet scan has shown some progression and 10 kg weight loss so the next steps for me are looking like R-CVP hope you are well

Hi Donna, hope you don’t mind me messaging you, I was recently diagnosed with stage 3 extra nodal marginal zone lymphoma. I’m 35 years old with a nearly one year old baby, I have completed radiotherapy but a recent PET scan and 10 kg weight loss shows the lymphoma is still very active and means more treatment is to come chemo unfortunately, I completely understand what ur going through, the “watch and wait” approach didn’t make sense to me either. I hope ur ok xx

Yes I am well Nadz ….. it’s not unusual to need a few approach to do the job….., R-CVP is very effective

Hi Nadz

i really appreciate you reaching out to me. Oh my goodness a little one year old baby.  How very tough on you. It is a completely new learning experience understanding all the language with lymphoma. I really wish I could get my terminology nailed down. I have a sister who is a cancer survivor and went through a lot of chemotherapy. Her attitude was very inspiring. I haven’t told anyone yet about my diagnosis. I have two sons. One 15 and one 26. Happily married. Only my husband knows. I was only diagnosed on Friday past. Is it a little boy or a girl you have.