Newly diagnosed yesterday with Lymphoma. Don’t know what type or anything else yet but have had full ct scan, bloods and biopsy. Being transferred from ent to haemotology for first consultation on 12th which is two weeks away. Is this normal time - it feels like a long time! After initial consultation will the treatment start quickly??? Have enquired about going private and that wouldn’t help to get it sooner apparently.
In the meantime, I’m not hungry and feel anxious. Give me your tips about what to eat and how to get through this time.
Hi Doris77 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 from yours I do appreciate the challenges of this journey rather well.
The waiting time is rather normal and if you are seen within 2 weeks great……most people can have a longer wait…… but when it comes to Lymphoma a little delay is not going to make much difference to outcomes.
As for not eating and feeling anxious….. this is stress….. Lymphoma is very treatable with great results….. so take a breath and another and eat normally….. more so if you end up going into treatment quickly as food is fuel….. and your body needs fuel.
Will treatment start quickly?…… it depends on they type of Lymphoma and how it is progressing…… some types of Lymphoma does not need immediate treatment so you may be put on Active Monitoring (Watch and Wait) until your Lumphoma is in the best position for treatment to be effective….. but some types can be treated immediately.
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 will be safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
At this moment you are best staying on this thread as there are significant differences between some of the Lymphomas especially between HL and NHL…… and you may end up getting conflicting information and get confused.
As you get ready for your appointment you may find these links helpful…..
Top tips for getting the best from your appointments
Questions to ask your medical team about Lymphoma
……. and ensure you have someone with you as an extra set of ears can help a lot.
As an encouragement - I was diagnosed with my rare type of NHL in 1999, over my 24+ years I have treatment in and off but I continued to work in a demanding teaching job until I retired, seen both my girls graduate and set up successful business, I walked both girls in to get married and eventually give us 4 beautiful granddaughters…… I turned 68 last Nov and I am living a great life.
Always around to answer your questions.
When it comes to work it will depend on the actual treatment…… as I said some folks don’t go straight into full on treatment…… It took 14 years before I had any chemo and I was retired by then.
I have talked with teachers who have managed to keep teaching on a reduced timetable…… I was on a full timetable……. but depending on full-on treatments others just can’t work so are off for the duration of their treatment.
The bottom line is at the moment your immune system is now fighting on two fronts…… its main battle is now trying to control your Lymphoma….. but this unfortunately opens the back door for you to catch bugs and infections so be mindful of this.
Even although I was teaching over my first 12 years ‘living’ with my type of Lymphoma I often had infections.
Until you have the meeting with your Haematologist you are blind at the moment but these are the questions that need to be put in your notebook of questions that you help need answers for……. I was under Dermatology for my first 14 years…… my Lymphoma was on and in my skin so once I meet my Haematologist he sent me for more tests including another biopsy…… this unfortunately may take more time but it’s an important part of getting this correct as one treatment does not fit all types of lymphoma.
You may want to take some time and work through the Lymphoma Action website and get to understand the condition.
Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) so lots of treatments are available but most people have never heard of it.
The difference between Lymphoma and other cancers can be seen in Staging - in Lymphoma staging 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
3) How long your treatment needs to be.
No question is little - all questions are welcome.
