Diagnosed with nhl on the 29 th july scared

Good morning  and welcome to our corner of the Online Community but so sorry to see you finding us.

I can understand your confusion and concern. A cancer diagnosis brings lots of questions as you are living with a whirlwind going on in your head...... but you have found a safe place where we will help you through this as we have all been on the journey.

I am Mike Thehighlander and I help out on our NHL Forum. You will see from my profile that I was diagnosed with my rare type of NHL in 1999 but I am still here to talk with you today  - so be encouraged. Blood cancers like NHL are very treatable with very good, long lasting results, so take a breath.

A blood cancer like NHL can not normally be diagnosed just with a blood test, sounds odd as it’s a blood cancer.

The only way to get a clear diagnosis is through a CT or PET scan and also by having a biopsy taken of one of the growth areas.

This can take time to be done and to get the results, so you are looking at a number of weeks. Once all this information is put together your consultants will then know what one of the 80 types of Lymphoma you have. They will meet and decide what is the very best treatment plan is for you. The waiting is hard but it has to be done and in the big picture it will make no real difference to how your  NHL is developing. 

NHL is normally treated with Chemotherapy, please don’t panic about this, chemo has come a long way over these many years so the stories about ‘how bad it is’ is just not the case. You may have to have radiotherapy or even some of the new targeted therapies that have been developed.

You are going to get information given to you thick and fast so could I recommend you get yourself prepared and get a note book.

The note book is the place where you record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out.

A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some question’ You go through each question one by one, making sure you write down all the answers you get. If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'

The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot.

I would ALWAYS recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear.

The note book should have questions like:

What type of condition has been diagnosed? - exact name and grade etc.

What are the proposed treatments Chemo, Radiotherapy......?

What are the names of the Chemo Regime?

How many treatments/cycles of Chemo and how long will each cycle last?

Does this require inpatient time (over night) in hospital

How many sessions of Radiotherapy and how long will all the treatments take?

Please come back to us with more information like have you had any symptoms, have you any lumps and bumps, what made you get checked out and what were you told.

Blood Cancer is nothing like solid tumour cancers like breast cancers. So if you are given a stage number that gives your team information to get the right treatment in place. Once the treatment starts it breaks down any growth areas, often quickly.

Keep posting as talking on the forum does help ((hugs))

A little information about NHL

Lymphoma is the fifth most common type of cancer in the UK. There are over 80 types of Lymphoma with the two main sub-types being Hodgkin Lymphoma and Non-Hodgkin Lymphoma and are often treated in very different ways.

Lymphoma is what is called a ‘blood cancer’. It can occur across the age ranges including children but it is on the whole, very treatable with people living for many years after being diagnosed.

But the diagnosis of Lymphoma can be long and drawn out as Lymphoma can be very hard to identify. Some of the treatments used can be full on and on the whole Lymphoma can not be ‘cut out’

Lymphoma can start growing in any parts of the body. The cancer cells can travel around the body. This means that Lymphoma can spread from where it first started. It can spread through the lymphatic system from lymph nodes in one part of the body to lymph nodes elsewhere. Lymphoma cells can also travel in the bloodstream to organs such as the bone marrow, liver, lungs and skin. 

The cells may then keep dividing to form a new area of Lymphoma growth.

Hi and sorry to see you joining us, Mike has given you lots of information so will try not to repeat, yes the waiting to find to what's next is hard, but the is little you can do at this stage so try just to focus on your next appointment date and dismiss as many of the what if's and buts as they will change nothing. Be prepared for the next appointment and go with your list of questions, the is a good example of what to ask in the resources section on this site. 

First the are B cell and T cell lymphoma then the is indolent (slow growing) and aggressive then you have the differing sub types, some need treatment and for the indolent types often patients go on watch and wait which sounds odd for cancer. Blood cancers are different to solid tumour ones and most respond well to treatment and new treatments are coming along all the time, your treatment if its needed will be gold standard and staff will be well versed in giving it. Some treatments are harder than others and we can advise on that nearer the time when you tell us more - the type and proposed treatment.

We all respond to this differently and mine was a simple approach, I could not change it so focused my energy on doing what I could to make sure I beat, I parked all the emotions up as I knew they could have a negative effect o my mental health so just never asked the questions like why me. If you can get to this point or have a similar approach that works for you it may make this experience more tolerable and not as exhausting as it can be. We do understand though that that type of approach does not work for everyone and so long as your strategy works for you that's what is important and we are here to help, support and share our experiences.

if you click on names you can read peoples stories where they have a profile, it may possibly help you to get your head around this 

John 

Thankyou so much , i had an enlarged lymph node in my small bowel , it was taken out my consultant was sure it was going to be fine, but he said never say never. 2weeks later it came back as non hodgkins lymphoma , he said i would have to have chemo im in limbo now x

Thankyou so much x

Hi again, if you read my profile you will see I had dlbc in my small intestine - multiple sites and a large mass in my abdomen and that was 10 years ago, lymphoma in the bowel/digestive tract is not unusual and normally responds well, has the consultant said what type it is as they must know if they know its NHL. 

If it turns out to be similar to mine then the treatment is likely to be rchop, but lets not get ahead at this stage and once you know the type do tell us.

John 

No he just told me non hodgkins lymphoma i was so shocked and to be honest so was he . Wow reading you're story had just made me feel a lot better x thanku  

Hello KittenKat02

I can see you've had quite a shock and the waiting for the diagnosis is really almost the hardest part, but as others have said its really important to identify exactly what you have as that determines your treatment.

Again, its already been said, but most non hodgkin lymphomas are very treatable, but unfortunately, there is a period of waiting until the medical team have all the information before that can happen.  The waiting won't affect the outcome at all.

Once you know what you are dealing with, Its almost a relief, you can get your head around it and you can get on with getting rid of it.

Best of luck with your journey.

Tina

Thankyou Tina, i went to bed quite happy last night  , coming on this site has gave me a boost , i do suffer from anxiety and depression  as it is, i was just starting to go down , but reading on here has givenme a kick up the ass ️

Waiting for a diagnosis is a tough time but keep reaching out for support. I don't have anything else to add to the excellent advice above, but I would echo what was said about having someone else with you & writing things down when you met with consultants etc as it can be overwhelming taking everything in. Try and take some time out over the next few days if you can and look after yourself and your mental health  - distraction and keeping busy might be helpful. And remember that you have people here who can provide support and advice. 

Thankyou im feeling more positive since i came on here, had cough for 5 days now, of course panic mode is on again