After finding a lump in my neck on the 4th of April and having an ultrasound and biopsy on the 2nd of May, I found out yesterday (9th) I have lymphoma. I don't know what stage or type yet. I'm having a CT scan tomorrow morning and another biopsy sometime within the next week or so.
My mum has stage 4 incurable breast and lung cancer so I've been looking after her since she was diagnosed late last May. Not even a year later, I have cancer too.
I'd just moved in with my boyfriend and adopted a dog. I'm 22.
I don't think it feels real yet but telling my dad was devastating.
I'm not even sure how to start processing this.
Hi fleetwood13 and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your Lymphoma diagnosis.
I am Mike and I help out around our Lymphoma groups. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well.
There are over 60 types and sub-types of Lymphoma so we can’t have a group for every type but these are our main Lymphoma groups below.
General Non Hodgkin's Lymphoma
These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
As there are significant differences between a lot of the Lymphomas it’s best you wait until you have a clear diagnosis before you join a group as you will just get confused but stick to this discussion thread and I will try and answer your questions and give you support.
But once you have a clear diagnosis do join the group for your type by clicking on the “Bold Link” for then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
I wm so sorry to hear about your mum and when it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges.
Lymphoma is the 5th most common cancer in the UK but one of the most treatable. Everything is going to be very confusing at the moment but once you have a clear diagnosis the noise between your ears will calm down.
Keep chatting with me and I will do my best to support you ((hugs))
Hi again fleetwood13 the scan and biopsy will give your team all the information they need to give you an accurate diagnosis.
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.
With some types of slow growing Low-grade non-Hodgkin lymphomas you may be put on what is called Active Monitoring (I prefer the term Active Monitoring to Watch and Wait as it’s more accurate as to what is happening) for over 14 years before I had any full on treatments (but my type of low grade NHL was ‘on’ my skin so was treated as though I had Psoriasis).
You may want to have a look at this link Questions to ask your medical team about Lymphoma as it will help you ask the right questions once you meet up with a consultant - clear accurate information helps turn the noise down between the ears.
((hugs))
Hi WelcometoMCL and a warm welcome to you.
The Lymphoma journey is a funny old thing and especially when you have cancer and nothing much is being done.
Do join and introduce yourself to the Mantel Cell Lymphoma group although it can be on the slow side due to the rarity of MCL.
Also keep an eye on the General Non Hodgkin's Lymphoma group as there is lots of general posts in there.
Always around to chat.
