Hi,
Just wanted to reach out into the ether 
After a 4 week wait, I found out yesterday that the lump in my breast is not breast cancer but NHL. I have to wait for another referral now so am a little in limbo. I have been told that referrals can be 2 weeks and that the next step will be more tests, so trying to prepare for that but it’s a bit of a head burner. I’m a single parent and self employed - I have a fantastic support network which I’m so grateful for, but not knowing what’s coming is daunting to say the least.
It’s good to be able to post here even without a more clear diagnosis. I know there’s not much I can do until I know next steps - but patience has never been my strong point…
Any tips on handling the waiting game gratefully received!
Hi Mindfulmum 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 NHL Stage 4a so I appreciate the challenges of this journey well.
Your story is not that unusual in that someone goes on a diagnosis path that is looking for say Breast Cancer…. and it turns out to be a type of lymphoma.
Most GPs find it hard to ‘get’ Lymphoma as it does not show well initially….. in all my 23 years I have never had a blood test that said Lymphoma….. even although Lymphoma is a cancer of the blood.
Yes you will now go on a different path as the Diagnosis of Lymphoma is slightly different as well as what Staging means in Lymphoma.
I will say at the start that if you had been diagnosed with Stage 4 breast cancer….. your prognosis would have been poor…..in Lymphoma it’s different world as staging is used to identify where your presentation area is, what the best treatment is and for how long…… I was stage 4a in late 2013 and I am still here living a great life….. so the ‘waiting game’ is hard but I hope that this simple paragraph will encourage you.
The reason that Lymphoma takes just a little longer to diagnose is that there are over 60 types and sub-types of Lymphoma - yes it’s very confusing.
Lymphoms is the 5 most common cancer in the UK but many people just don’t know much about it as it does not get the headlines.
Unlike most other cancers surgery won’t remove a Lymphoma, although surgery can be used if there is risk to life if a growth area is near an important organ. Lymphoma is a cancer of the blood…. where can we cells gather (have a party) and form a mass….. but unlike other cancer this is not a solid tumour….. it’s a soft-ish mass so this has to be broken down so you do need to get your head round that you may well have done strong Chemotherapy Treatment.
To help you ‘talk’ with your Consultant - most likely a Haematologist this link will help you prepare Questions to ask your medical team about Lymphoma.
The Bold link above are taken for the Lymphoma Action Website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos.
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 Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
Being diagnosed with cancer can be scary so talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing supporting all the family.
I have given you lots of good information and you will have lots of questions so do get back to us and we will help as best as we can,
The main thing to remember is that on the whole Lymphoma is very treatable, yes some treatments are full on but do-able.
((hugs))
Thank you so much Mike. It really does help and I will investigate the information you have given me. I appreciate you coming back to me so quickly
Take your time and look through the info.
Get yourself a note book (I have a few going back my main years) and start listing questions, thoughts, emotions, practical questions…… some of these can be put up on here and we will try and help…… but some will be for when you eventually get to see a consultant.
((hugs))
