Newly Diagnosed Follicular Lymphoma Stage 3A

Hi Everyone, I'm 41 and have just been diagnosed with Follicular Lymphoma Stage 3A (Thursday). I have had a PET scan which shows various areas where the lymphoma cells are collecting although I am told it is not in my organs yet. As you know, the bone marrow is still a mystery and will remain one until they feel I need treatment. I decided to 'rip the plaster off' and tell everyone so it has been an emotional weekend. I kind of wish I hadn't because some of the reactions have been extreme. There are some people that hear Cancer but don't hear the rest of what you are saying..... I am trying to convince myself and everyone around me that it is not a catastrophe! I am not sure my family is buying it..... any suggestions on how to try and keep those around me sane? I am so worried about them, especially my mum whose partner is having his testicle removed this week due to his relapse confirmation last week. He previously had cancer of the throat which was very aggressive and his treatment 4 years ago was harrowing and I am sure my mum thinks mine will be the same..... (and it is really hard to get any info out of him so we don't know the details of his relapse, only the dates for appointments etc.) Am I being naive in saying mine is going to be much easier to handle when the time comes or is it going to be really awful? My head is swimming and I don't have another appointment until 28/02. My consultant sounded as though he didn't expect much to change in these 2 weeks so I'm not expecting to come off the watch and wait but my family is pinning everything on this date because they can't handle the watch and wait theory..... any comments would be really appreciated at what is turning out to be a very lonely  time.....

  • Hi Jellyflower

    I was in pretty much the same boat as you with the diesese in my stomach and spreading to my chest and my organs were not affected I started treatment on the 27th December 2018 and it's gone really well with it now in remission and I have moved onto maintenace treatment (having the 3rd treatment on Thursday)

    The Chemo I had 6 sessions of R-CHOP wasnt easy but nowhere near as bad as I was expecting I was never on watch and wait as my Lymphoma was agresive

    Have a read of my thread in "Starting treatment on the 28th December 2018" lots of good advice in there from many members there

    As for your friends and family concerns it's expected but get them to read up on here about FL it will help them understand it's not as bad as it could be as is definatly treatable

    One thing I will will say is put your complete faith in your consultant, Doctors and nurses and do as they say, one thing that is really important and I firmly believe really helps is drinking plenty when the treament starts to flush out the bad things

    Good luck hope all goes well for you keep us updated

  • Hi  and welcome to this corner of the Community but always sorry to see folks find this safe place. I was holding off until one of the FL folks to came along and great that  has picked up on your post.

    Although I had another one of the other 80 types of Non Hodgkins Lymphoma and I do totally understand the journey - you can see our stories by hitting our Community names and putting some information in your profile can help a lot Click here to see how to add details as this helps everyone to see a little about you and support you better.

    I was basically on Watch and Wait for 14 years.!!... but my skin Lymphoma was a strange slow burn beast........... watch and wait is in your best interests...... your team want to keep an eye on your lymphoma and save treatments for when they are needed them. There is lots of evidence that people do just as well in the short/long term if they are actively monitored and have other treatments kept until they are really needed.

    This LINK is a good place for info on FL, have a look through it......... and even a good place to get your family to have a look to try and get them to understand the difference between a blood cancer and a solid tumour cancer.

    With cancer in the family, especially a throat cancer, 2 + 2 will be put together...... but this is just not the case and it does not make 4.

    Your family will not understand that basically you can not cut out a blood cancer. I would have had to be skinned as my body was covered with tumours........ but using some very clever, targeted treatments breaks down the build up of cancer cells in your body and basically melts them away. 

    The main thing I advise is to get the battle between your ears under control - clear information helps and join the Community was a good step.

    Could I also recommend that you prepare for your next appointment with your team. I would always recommend you get an old fashioned 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. I would also recommend that you then go have a cup of coffee/tea straight after the appointment and unpack what had been said so that a clear understanding is made and with this you can plan to move forward.

    Always around to listen and answer questions ((hugs))

  • Thank you so much for getting back to me so quickly... I work in a dry cleaners, my mum works there too and I start my shift at 12, I didn't dream that I would have had a reply before then so thank you.... she just called and said she hasn't told anyone at work because she didn't know what to say... I don't know either.... being that I am not showing symptoms at the moment and am on watch and wait, should I be thinking about looking for another job? The sheer volume of clothes that come through the factory is huge and all the clothes are obviously dirty..... How susceptible to infection am I now? Would I only need to worry about working here if I start treatment?

    I can't Thank you enough for being here for me x

  • Thank you for your reply, when I start treatment I will be re-reading I can assure you! Fingers crossed that won't be for a very long time xx

  • Without treatment starting you should be OK to continue work but when treatment starts it lowers your imune system so you will need to avoid infections from any source

    I am having trouble getting my imune sytem back up to speed so avoid any chance of infection ie anyone with colds flu etc I caught an infection just the once and the consulant stopped my treatment and put me on a strong antibiotics that cleared it up I'm back on track now

    No need to tell anyone if you don't want to but when your treatment starts then maybe then it's hard to hide when you lose your hair (it does grow back after treatment and mine was a lot stronger after)

    Good luck keep us updated

  • Thanks BedrockFred, in looking for the silver linings that is one positive I am clinging too!! My hair is so fine and flyaway and I have been told it should be better after chemo!! Always looking for the light eh!?

    Glad to hear you're back on track - You Got This x

  • Hi and another welcome, one bit of advice I did not see is, when talking to people about FNHL, some refer to it as a chronic disease which only needs treating when it flares up. To explain people live with this and many can go years without treatment, which is at odds with what people generally know and understand, so if you want to play it down explain, you will be like a diabetic, who is monitored and when things go wrong then the doctors intervene or something similar, it may just make some people more comfortable as many will think what's the prognosis and how long, which is not the case. But as you are finding telling people you have cancer but it may not be treated yet is something they don't get.

    You will get lots of advice and support from the group when you need it.

    John 

  • When my hair grew back it came back curley before it was straight as a die, it's now getting straight again but it does seem to begrowing faster

    Good luck when your treatment starts and go enjoy yourself whilst your waiting for, it could be a lot worse FL is very treatable and controled put your faith in your team at hospital they will sort out the correct treatment for you, be positive do as they say drink plenty thats the best advice I can give

    Scarry when your first diagnosed even more so for your friends and family but be assured it's not as bad as it first seems

  • HI Jellyflower,

    So sorry for your diagnosis. Unfortunately this initial period just after diagnosis is the most terrifying and tortuous and I have complete empathy with you as I too was stage 3a and feared the worst, as did my family. Fast forward to now and last month I completed my treatment and am in complete remission, expecting to live a long life - you can read my story if you click my profile.

    Follicular NHL, as John R said can be likened to a chronic disease, we will probably die with it not from it and is one of the most treatable cancers. You are completely right in thinking it's not a catastrophe. 

    Take heart from this and show your family some of the information in the links Highlander gave to you.....it will give them plenty of hope.

    I know it will be a long 10 days for you and it's tough, but hopefully after that there will be a positive way forward.

    Stay strong.

    Best Wishes

    Tina 

  • Hi Guys,
    I am hoping a bit of experience will help me get my head around this....
    Early in the Lockdown, I feel a new lump on the right side of my neck, I called the hospital and was told not to worry about it.
    15th Jun 2020, I feel another lump growing in my arm, I have a blood test on 16th June and go to the hospital on 18th June, she confirms that the lumps are lymphoma and says they will come up "overtime" and that my blood is "normal" so not to worry
    Fast forward to today. 24th Jun 2020. I have found a new lump in my neck, about the same size as the other one on the other side.... (approx 1.5cm)
    I am struggling with being repeatedly told its slow-growing yet lumps are appearing so quickly all over the place! My confidence is at rock bottom because each time I speak to the hospital I come away full of information (which I share with my family), more often than not the information turns out to be false OR it doesn't apply to me. I KNOW she said I will feel more over time but that was only last Thursday so how can this all be happening so quickly? NONE of the new lumps I have discovered in the past week were on the PET scan and so are completely new..... I feel bad complaining because I am sure this is a snails pace compared to others who are battling with this nightmare,  I just didn't have any other outlet for my thoughts..........
    So anyway, this is where I am at today. Scared. Lonely and confused.
  • Please try not to worry although easier said than done. I have now been on watch and wait For two years as although I have lumps I don’t have any symptoms and the lumps are small. These lumps go up and down. The official term is watch and wait. At times my neck looks twice it’s size! At the moment the Enlarged nodes have been noN existent for a year. Getting your head around the fact that you are t having treatment is hard but you do get used to it. I don’t forget Completely that I have lymphoma but I do manage to get on With life and only really think about it when I am near to seeing the consultant

  • Hi again , yes, it is a hard concept getting your head round having cancer, being told that it’s slow growing and at this time nothing needs to be done!!!...... but it’s a blood cancer and on the whole a totally different approach to any other types of solid tumour cancers.

    I had a different type of Skin NHL. So where you have lumps and bumps I had surface tumours that were like open bloody sores. I basically looked like I had the worst Psoriasis ever with 75% body coverage at times.

    But I lived and worked with this for over 14 years not reciving anything more than 100s of light treatments and a few other meds and creams.

    I was told that “once it became aggressive the treatment would need to be even more aggressive to deal with it”

    I am now 4 3/4 years post the last aggressive treatment and doing great.

    Its all about understanding that you have a chronic illness that at some point it may have to be treated more aggressively.

    Back in 1999 when I was diagnosed my consultant said “Mike this is incurable but treatable but you will never see remission” but did actually achieve remission back in September 2016...... this was a shock to my team.

    Back in 1999 I also had two friends who were diagnosed with MS and Parkinson’s......... I am clear with No Evident Disease (NED)...... but my friends have just got progressively worse over the years with no light at the end of the tunnel, no get out clause.

    Its about putting some order in your head space, looking at the positives!!!! and yes, these are to be foundand and not focusing solely on the negatives.

    FL is very treatable but treatment needs to be kept until it’s needed and can have the maximum impact when used.

    Highlander ((hugs)) coming your way x