DLBCL diagnosed today

Hi  and welcome to this little corner of the community but always sorry to see folks finding us. I am Mike Thehighlander and I help out around our blood cancer groups. I was first diagnosed way back in 1999!with an incurable but treatable type of skin Non Hodgkin’s Lymphoma.... it’s all very complicated, there are actually over 60 different types and subtypes of Lymphoma. Most are treated in the same basic way but the treatments themselves are tailored to each persons presentation.

The CT scan will give a clearer picture as to where the NHL is presenting and help give your condition a stage. It is VERY important for you to understand this one thing from the outset. If we were talking on say the Kidney, Lung, Liver..... groups I would be saying the higher the stage number the poorer prognosis...... but when it comes to Lymphoma the stage number is a guide, not necessarily prognostic, as this information is used to identify the best treatment that would work best for you and for how long.

I was stage 4a and it did not make a lot of difference to the eventual outcomes - so be encouraged.

DLBCL is very treatable and many people have come through the group, walked the treatment journey and have went on to live full and happy lives.

Your mind is in a whirlwind at the moment but once all the info is in and you have a clear plan the battle between the ears can then be controlled.

Consultants tend to get on with the basic facts, it’s the Specialist Cancer Nurse (SCN) are the ones you have to connect in with as they are your point of contact.

Hearing the word cancer is a massive shock...... but once you get to know more about NHL and understand that unlike solid tumour cancers like Breast, Kidney...... this is very treatable then you can move this forward and look back and Rene er it as a bad dream.

I suggest that you start a note book with all the questions and thoughts that are buzzing round your head, especially the ones that come at silly o’clock.... put them on paper and park them, you wont get any answers at silly o’clock

The note book is the place you keep notes during appointments like what treatment you are going to have, how often..... it’s also the place you have your questions you are going to ask and the answers you get.

The front page should have all your medical teams names and contact details..... you get the idea?

Do also check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service.

Unlike my type of NHL (hit my name to see my story) that is incurable your type is very treatable with the initial aim of treatment to put you in long term remission and as many will say as time goes on the word cure is used.

Lyn you will have lots of questions so put them up and we will try and help you navigate this journey ((hugs))

Hi Lyn, sorry to meet you this way (if you know what I mean!) I’m pretty much in the same position as yourself. I’ve had the diagnosis. Had a pet scan on Tuesday and go back to the haematologist next Wednesday for staging and treatment plan. I’ve been told it’ll be R-CHOP chemo. It was such a shock for me as I was never expecting to receive a diagnosis as mine was picked up from the tissue pathology following an op to remove my ovaries. I’d be lying if I didn’t say I was terrified. I’m more angry as I’ve got life to get on with, if that makes sense. Anyway, I’m happy to offer any support. There’s a few lovely people I’ve connected with on this site who have also been recently diagnosed, it does make you feel a little less alone. Take care, Sarah 

Thankyou Mike for an encouraging and informative reply. I've got a load of booklets to read from hospital and support groups but really can't look at the moment. I cant stop thinking about it so I've decided today is a shopping day, only food, but just want to do normal stuff.

Thank you Sarah for your reply. It's such a help to connect with those going through the same thing. I hope we can support each other in a positive way.

Trying to keep some normality is a good plan..... the more that this unpacks and the more people you talk with will help you understand that although you have received a cancer diagnosis, like me, you may reflect back that it was ‘fortunate’ that your brush with cancer was Lymphoma and not many of the solid tumour cancers

Have a great day ((hugs))

Only positivity from me Lyn, it’s all very doable according to others and very treatable. I’ve had some really dark days and I’ve still not told my elderly father as he will be worried sick and I don’t want him to become unwell, but I’ve shared the news with my closest friends and I’ve got a lovely boyfriend who has been a rock. I’ve decided to grab the bull by the horns and get ready for the ride. I know it’s not for everyone but I’ve been and had my eyebrows done (semi-permanent tattoo) and going to look at wigs next week. I’m doing this as I want to look like myself as much as possible even if I feel rubbish inside. I suppose we all have our own way of coping! Sending positive vibes your way. Hoping we can offer support along the way. Also….big thanks to Mike who is always there, you’re an angel Mike, thank you x

Hi Lyn

I don't think many expect the diagnosis. It will take a while to get things sorted in your head and I found that as hard as dealing with the treatment to begin with. After the first couple of cycles I just found it all very tedious and tiring particularly the middle week between treatment's. All doable once you know what to expect and have been through it a couple of times. It's the early stages where you are now which are the hardest in most respects and it should get easier as you progress.

Thank you for your reply. You are right, its fearing the unknown. I have an appointment for the ct scan on tuesday. My anxiety will be through the roof after that as I think that's when they can tell me how bad this thing is.

Hi Lyn, Sorry to meet you like this too.

I'm pretty new here too. I got a definitive diagnosis a week last Friday and I've got a CT scan on Wednesday for grading before a meeting and treatment plan on 2nd. The exhaustion has been the worst for me, but Mike (the highlander) gave me the best advice - trust the doctors to do their stuff and focus on what you can do by choosing your attitude and staying positive (thanks Mike!) I've been focusing on that for the last month while my initial diagnosis was ratified by the Christie up here in Manchester following my dermatologists initial diagnosis and it has helped me enormously in my first tentative steps on this strange and most unexpected journey.

How are you feeling now the news has had time to settle in?

I'm with sassy Sarah, if we can support each other, go with the feelings, whatever they are and stay positive and forward looking then we can all get through this and come out of it stronger.

Happy to chat anytime. Sending big hugs & best wishes,  

Gail x

Hi Gail. Thankyou so much for replying.  It's been almost a week since I got the news and it seems like the longest week of my life. Still a little shocked but determined to go forward with whatever happens next. I have my CT scan today so my stomach is slightly knotted because that's the one that tells me how bad things are. My team meeting is next Monday to discuss treatment. I decided that this week I would get organised before my chemo starts. There are a few things that I have neglected like dealing with a broken tooth which is mostly because of access to a dentist through covid. Actually,  who am I kidding, it doesn't hurt so I  doubt if I would have bothered. Compared to what I'm facing having my tooth done suddenly holds no fear. I'm also trying to get a hair appointment, not easy as they are all so busy. My hair is shoulder length and I normally just shove it in a quick pony tail bun type arrangement every day. I want a short cut, just so the eventual loss isn't so depressing. Before my scan I'm off to Specsavers for an eye test and new glasses.  That was due anyway. So a busy week. It's been hard to stop myself from crying about this, but what's the point. I hate the feeling of reality that hits you every so often, especially when you've been able to forget about it for a while. I'm sure you get what I'm trying to describe. Anyway, this community is brilliant and I'm so so grateful that we have a place to support each other. I too am sorry that we have to meet in these circumstances. I'm happy to chat anytime. We can do this. Best wishes

Lyn x