Hi there i have just received a diagnosis of Diffuse Large cell Lymphoma. 5 tuMours discovered in A&E. Cranial surgery to do biopsy (as biposy was considred risky). Result 19th September. Interest to speak to people being tretaed at the Hammersmith hospital, and generally people with simlar condition (ie Lymphoma)
2 Likes
Hi @Isi I am glad that you have found us, I have another blood cancer, but there is a lot of information on the Blood Cancer UK website and if you would like to talk to someone the Blood Cancer UK support line details are above.
You must still be in shock from your diagnosis and I certainly remember my diagnosis very vividly and that was 17 yrs ago.
Have you got support from family and friends?
I found it difficult to explain to others what I did not understand myself.
I hope you will find our forum supportive and please keep posting as I look forward to hearing more about you.
I hope others will be of more help to you.
A warm welcome to you @Isi I’m really glad you found us. What a hugely difficult time this must be for you - how are you coping at the moment?
There are many people on here with experiences of lymphoma who I’m sure will share their experiences, but in the meantime I just wanted to let you know that we have this booklet you can download or order for free, for anyone newly diagnosed with blood cancer. We also have this booklet on high-grade NHL including DLBCL.
As Erica said above, our support line is here for you on 0808 2080 888.
1 Like
Hi @Isi. Way back in November 2020 I was sorting out the MOT on the van when I got a phone call from my (then) GP with the result of the X-ray from the previous day - his prognosis was I had “Lung Cancer - Stage Four” and that I needed to discuss the future (short) with my wife. In the space of 5 minutes he ruined my life!! He then added I would be sent for a CT scan to ascertain how far it had spread. In the 2 weeks following my CT scan I was sent for biopsy’s, blood tests, echocardiogram, and a PET scan and all the while wondering how many months I had left to live. On the 4th December I was to see a consultant who was going to - I assumed give me the bad news, but instead told me I had Diffuse Large B-cell Lymphoma and that it was treatable with the prospect of complete cure in 6 to 12 months dependant on further scans to check on how the treatment was going. Even then it didn’t sink in what I was told since previously being given a wrong diagnosis by the GP.
Treatment would be with R-CHOP - 6 sessions of chemotherapy every 3 weeks and then followed by a CT scan to see how treatment had gone. It was also decided that I would have 2 extra session of chemotherapy with Methotrexate which required a stay in hospital of a week.
Following the CT scan it was noted that there were still traces of DLBCL which could be treated by Radiotherapy (15 consecutive days) in July and then 3 months after radiotherapy another PET scan. On 3rd November I was given the good news - treatment has been successful. Now I just go for bi-monthly check-up’s for them to check my blood and check there are no lumps appearing - fingers crossed none are found.
The moral here is despite the seemingly bleak outlook there is hope that you can be cured and make a full recovery to lead a normal life as you had before your diagnosis. Present day life is hard enough dealing with the consequences of Covid and then to come to terms with your diagnosis and it’s implications for life and being classed as clinically vulnerable which just adds a new dimension to life.
Going forward - be positive. You will probably ask yourself the question what did I do in life that was wrong - I did. I wanted to hide away and not talk about it but going to chemotherapy made me realise that I’m not alone. This forum also highlights that you are not alone. Remember there is life the other side of chemotherapy and for this reason you need to be positive about life presently. It’s a tough journey but a worthwhile one and one which you will look back on as something you had to do. Again be positive and look forward to what you hope to do once all your treatment is complete.
1 Like
Oh @Venus as I was reading your post I got that sinking feeling in my stomach as you described your initial call from your GP. and I cannot imagine the talk you had with your wife.
I also had a shock diagnosis and I came straight home and wrote my will and funeral music, that was in 2003.
It is really difficult to stay positive sometimes, and that is natural, but a day (an hour sometimes) at a time was my way.
Look after yourselves @Venus and @Isi