Just Diagnosed with Follicular non Hodgkin lymphoma

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Hi Everyone 

After months of tests, Cts and biopsies I was diagnosed yesterday.

im 44 with two children and feeling extremely anxious as before yesterday I had never heard of it.

I have a pet scan on Wednesday to grade it.

I feel well and no lumps, the only reason I went to the doctors initially was due to night sweats thinking it’s early menopause.  

I have no choice but to be positive just wondering about other peoples experiences 


Rachel

  • Hi  and welcome to the Community but sorry you have been diagnosed with FL.

    I am Mike  and I help out around our Lymphoma groups.

    FL is about the 4th most diagnosed type of Non Hodgkin’s Lymphoma. It’s very treatable but at the moment it’s incurable.....but think living with a longer term chronic illness.

    Grade numbers used in Lymphomas are not seen as a prognosis unlike in solid tumour cancers like breast, lung... cancers where the higher the unmarried the worst the prognosis. In Lymphoma it’s used to identify where the FL is presenting, they type of treatment and for how long.

    I was diagnosed way back in 1999 with another type of rare incurable NHL, I was stage 4a I have had lots of treatment over the years but I am living a great life.

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

    Always around to talk more.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Rachel, sorry to see you have been diagnosed with lymphoma, it is a scary time and we have all been there, trying to process what's happening and what does it all mean. The is a lot to take in and remember the are no stupid questions so always ask them of your medical team as they understand. 

    Often a diagnosis does come out of the blue and the symptoms we experience can be played down to be being caused by other things.

    Lymphoma is normally very treatable and if it is follicular lymphoma (FNHL) you have then that's seen as indolent and people can be placed on watch and wait and its only treated when it flares up, see it as a chronic disease if it is fnhl, if you can. 

    we are here to help and support as and when you need it.

    John 

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • Thank you John. 
    it’s definitely comforting to know others are in the same boat.

    My crying is over and now I have my happy face on. 
    I guess I will know more after I see the consultant to see what the next step is.

  • Hello , Rachel,

    I was diagnosed with Follicular Lymphoma in March, having had a phone appointment with my GP about swollen ankles, which escalated into a conversation about other symptoms. Long story short: failed endoscopy; CT/PET scans; biopsy on enlarged lymph node; FL diagnosis 3 weeks later.

    It's been a whirlwind of thoughts, feelings, blood tests and more scans for a blocked kidney. Like you, I was extremely anxious about the future, but I had heard of it before (a friend's brother had it in the 80s) so knew a little about it.

    I have had two PET scans, the first was for possible gastric cancers due to my symptoms and the second to find out why my kidney is blocked. I haven't been told what grade it is or what stage I'm at, not once, and I have no confidence in the haematology team looking after me; I hope you have a better experience with them than I have so far.

    The night sweats I too put down to the menopause (I'm 61!) but was told unless they're drenching the bed, then not to worry. The lymph nodes are enlarged all over my body but I only have two lumps I can feel; they're on the back of my head. Again I was told, don't worry, unless they're 4-5cm we won't treat and I was placed on watch & wait for the foreseeable, unless my symptoms change. Drastic weight loss, drenching night sweats, lumps growing... I'll be seen quarterly in clinic (so far only phone appointments which don't help).

    So it's a waiting game and you feel totally lost, it's so surreal, you know there's cancer inside you, but you don't feel ill or look it. Friends are in a few camps, supportive or dismissive (I've found anyway), offering help or shying away, and finally ignoring things!

    Sorry my post isn't all positive! I would say though, try to find a local to you cancer support charity. I found that Yorkshire Cancer Care have been amazing; some Facebook groups are okay, but others are frightening with posts about treatment and relapses and lots of acronyms for things you have no clue what they mean!

    Take care

    Jayne

    The way I see it, is if you want rainbows, you gotta put up with the rain!  -  Dolly PartonUmbrellaSun with face

  • It’s certainly a mix of emotions, I don’t understand the watch and wait, because surely waiting is a bad thing?

    I have a million questions to ask the consultant. 
    Sorry that your experience so far hasn’t been great.

    how do you feel in yourself? 

  • Apart from some skin treatments I was on Watch and Wait I prefer the term Active Monitoring for 14 years before the big gun treatments were required.

    When watch and wait is suggested for you, it means it is in your best interests to keep an eye on your lymphoma and to save other treatments for when they are needed.

    There is lots of evidence that people do just as well in the long term if they are actively monitored and have other treatments kept until they are really needed.

    Check this link

    lymphoma-action.org.uk/.../LYM0233WatchWaitBk2018ed1.pdf

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hiya Hallconnie

    Sorry to hear your recent diagnosis, I was diagnosed in Oct (im 37) and currently on watch and wait, its a scary experience that takes a while to get your head round, sometimes it gets overwhelming an I struggle to comprehend that I have it and I basically have to just continue with life as before with the additional monitoring.

    I have a cluster of about 5 lumps on my neck, the largest being ping pong ball ish size. Occasional mild night sweats, thats it really. 

    Make a list of all your questions and take them with you, I found this so helpful, I'm lucky I have a really good consultant who spent time going through these with me. 

    Best of wishes 

    Jen x 

  • Thank you so much for the information 

  • Hello again Rachel,

    Yes it's definitely a mix of emotions, you go from why me? to okay I can do this, back to is this happening and what next? It's all so scary and at such an uncertain time too. I think things would feel a lot better if we weren't in the middle of a pandemic and appointments were normal instead of over the phone. If you're anything like me, you feel better talking to someone you can see in front of you!

    Watch and wait, especially with something like this, just seems so ridiculous doesn't it? We have cancer, we want to get rid of it! The way the specialist explained it to me is this; if they treat it too early, it is more likely to return sooner than much later. My lymph nodes were 1-2 cm in size on my first scan, he said that they need to be 4-5cm before any treatment can begin. But since then that specialist has left and my appointment on Monday is with a new one, he may have different ways of dealing with it, who knows? It's all been farcical so far. Plus it's a slow moving cancer, known as indolent, so they can be a little blasé with decisions; but, they do tell you to ring the support team if anything changes or you have any problems in between appointments.

    For my initial appointment I wrote down questions as I thought of them and managed to ask most of them in the phone call. It also helps to get someone to record the appointment on their phone (or you!) because you do forget a lot of what was said during it. My daughter recorded mine and I've used it to look back at, as well as passing it onto family and friends to better explain things.

    Me? I was angry at how I've been shoved to one side, then upset at the way things have been handled (I've had to chase up everything so far) and now resigned to going with the flow. Health-wise I'm more tired than I was a month ago, my lumps are definitely bigger, but that's it. Taking each day as it comes.

    The way I see it, is if you want rainbows, you gotta put up with the rain!  -  Dolly PartonUmbrellaSun with face