Hi. I'm awaiting the outcome of a biopsy I had on a lump above my collarbone. I've be experiencing symptoms on and off for a while, which I put down to perimenopause. I'm worried about the extent of the cancer, I have lower back ache, and pains in my left shoulder. My lung capacity seems good and my bloods are good. I guess I'm afraid of the diagnosis and what lies ahead. I'm having a CT scan on next week. Sorry for the rambling, I'm hoping for the best but keep thinking about the worst. Thank for the support.
Hi Konstance and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. I was diagnosed way back in 1999 with a rare, incurable type of Skin Non Hodgkin's Lymphoma Stage 4a so I, like many in these groups understand the challenges of this journey well.
The Diagnosis of Lymphoma has to be very accurate and does take time as there are over 60 types and sub-types of Lymphoma. The most important thing to get is 'if' this is Lymphoma, on the whole this is very treatable as there are many lines of Treatment available.
The Biopsy will confirm if you have Lymphoma and what type it is. The CT scan will identify where it is presenting in your body and gives your presentation a Staging.
Unlike solid tumor cancers like Lung, Breast, Kidney....etc where a high stage number is a poor prognosis, in Lymphoma it is not - it is only a tool to identify where the Lymphoma is and as to the type and amount of treatment you need.
In late 2013 I was stage 4a, with 70% of my skin covered with tumours and activity in my Bone Marrow........ but this made no real difference to my treatment plan and here I am over 8 years on doing great.
Always around to help more, to chat and answer questions as best as I can ((hugs))
Each diagnosis journey can be ever so different based on the time it takes for all the information to be collected then often to be put before the hospital weekly Multidisciplinary Team (MDT) meeting as often it’s not one consultant who makes the decisions as any other existing medical conditions, age etc are all looked at before a plan is put in place.
Even people with the exact same type of Lymohoma may not have the same treatment and even some types of low grade Lymphomas are often not treated and you are put on Active Monitoring (Watch and Wait) until it’s time to treat……. I talk with folks who have not required treatment and are 10 years in to their journey ……. This is Lymphoma for you.
You will see from my profile (hit my community name) that it took a good year, 6 biopsies and a few CT scans to eventually find proof of my type even although my consultant was 99% sure what I had.
All the links I have given you are from the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups 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 dedicated Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
Always around to answer questions.
Good to hear this are progressing but yes waiting is hard and our brains can play with our stress levels.
As for CNS Lymphoma you just talk this through with the experts as they know exactly what thy are doing and looking for.
