Low grade Lymphoma

FormerMember
FormerMember
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Hi everyone I'm very new to this and today plucked up the courage to join after speaking to Macmillan. Back in April I got diagnosed with low grade Lymphoma. This came as a complete shock as I had a scan for what they thought was kidney stones! They found a large mass that I gave had, apparently for 2 years. Due to the current climate I've only managed to see my consultant once and since then it's been calls only. I'm reaching out to fellow sufferers as I'm feeling very confused and alone right now. Apparently after 5 to 10 years it can change into high grade? I'm currently on watch and wait. Unfortunately I feel that I'm being a nuisance when I try and ask my consultant any questions. Now I've got a lump in my groin and getting really stressed. I'm reaching out to anyone who has gone or is going through similar to share their experience. Thanks everyone  

  • Hi Kathy57,

    It's not unknown for lymphomas to be surprisingly slow developing.  I reckon mine had been around for more than 5 years before it made itself noticed.  That's really sluggish!  But I'm now officially disease free after chemo and hope to stay that way.

    You sound like you have a line of communication to your team, even though it's remote.  I'd let them know any changes you observe as soon as you notice them.  They will want to stay in touch - it's the 'watching' part of watch and wait.  They might want to check things out or do tests to inform you.

    I don't know much about changes to high grade types of lymphoma, but I know it can happen, but not to everyone or every type of disease.   We all live with this background level of uncertainty, but in the pandemic, I guess it's something many people have to cope with.  

    Best wishes,

    Cecren

  • Hi and welcome, although I had a different type of NHL I do get where you are coming from.

    My skin NHL was classed as Low Grade and was on Watch and Wait for 14 years although I had 14 years of skin treatments as though it was very bad Psoriasis notably only seeing my co sultans every 6 months or so....... but it all kicked off in mid 2013 and become very aggressive - long story but hit my Community name to see it.

    You must not think that you are being nuisance and make sure you keep an open conversation with your team more so during these challenging times.

    Have you the contact details for a Specialist Consultant Nurse?...... as these are the best go betweens to check in with.

    I am 5 years on from my last treatments and no longer have appointments but if I have a question about an issue I don’t understand I email her and she will get back to me.

    Telephone consultations are here to stay unfortunately so it’s important to find the best contact route to get your questions answered, if you can do this your stress levels will go down dramatically. If your team think that they need to see you they will but it’s all about logging your symptoms so that you can see progression where it happens.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember in reply to Cecren

    Hi Cecren

    Thank you so much for taking the time to reply. Its really appreciated.

    I'm going to ask for another specialist nurse because, unfortunately, the one I have hasn't been helpful at all. 

    I've finally managed to get an actual appointment on Friday regarding the pain in my groin.

    Its so good to hear from other people that have been through similar cancers. I'll keep you updated! 

    Thank you

    Kathy 

  • FormerMember
    FormerMember in reply to Thehighlander

    Hi Mike

    I've read your journey and its incredible. You've been through so much and you taking the time to reply to me is really appreciated. 

    I have received a letter with a specialist nurse contact name on it but I have to be honest, when I finally got a call back after a week, she wasn't very helpful or friendly. I guess she could have been having a bad day which I understand. I've actually managed to get an appointment to have an examination on Friday so I'll keep you updated. 

    In the meantime keep yourself safe and speak soon

    Thank you again

    Kathy 

  • Hi Kathy57

    Have not been on site for a while so have not seen your post until now. I too have low grade lymphoma (Follicular). I was diagnosed just as we went into the first lockdown in March. I was so scared. I couldn’t eat or sleep, I was in a right state. I was unable to attend hospital to meet my consultant as they felt it was too risky with covid around. My initial consultation was done over the telephone as were  the follow up appointments. It was a very difficult time as I was unable to go for scans etc. I felt exactly the same as you, confused  and very alone. I was also and still am on watch and wait. My initial enlarged lymph node was in my nasopharyngeal area but they were unable to tell me if there were anymore until I was able to have a scan. I spent months worrying. The consultant had told me that the scan would probably show a few more lumps and bumps around the body. Eventually in August I was able to have a scan which showed that I had another lump in the groin (although it’s not noticeable to me). They did a biopsy on that lump to ensure it was still low grade. It was thankfully. I’m struggling with the uncertainty of it all especially as life has more or less been on hold due to covid and shielding. I feel the same as you about asking questions. I feel like I’m being a nuisance because I’m the sort of person that needs to know everything. Common sense tells me that they must surely understand though. I did get to meet my consultant in November and he was very nice. I hope that since writing your post, you’ve had some answers to your concerns about the lump in your groin. Please let me know how you have got in.

    Stay safe and best wishes 

    Teresa x

  • Just  a rant  my team  has cancelled  my 10th immune treatment  yet I ne very had any problems during 1st lock down  errrr stay safe everyone 

  • It’s very frustrating , an unwanted side effect of this COVID mess, let’s look for things to get some normality soon...... what ever normal will be now Smirk

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge