Lymphoma 1st heamotolagy appointment ?

Hi , I will try and keep it short . 

Ive had an ultra sound on my throat I’ve had a gland up for 2-3 years no pain only a few times . They also did the camera up my nose into my throat and did a biopsy . 2 weeks later I got the call Tuesday saying it is a lymphoma that’s all I know apart from they saw another enlarged node further into my throat one is 3cm . 

When he rung he said I will need a scan to see it’s spread further and see heamotolagy to see about treatment I’ve got heamotolagy on the 11th . Will they do the scan or is that a different appointment the way he said it was I would have the scan first ? All this is happening in Cornwall I’m sure it must work different with different doctors and areas . 

Thanks 

  • Hi There - I am sorry to hear what you are going through.  I know exactly how you are feeling.  I had a lump appear on my neck.  Fast forwad a few weeks after two scans/biopsy and a camera up my nose and into my throat - (after the latter I ws told it was a blocked salivary gland) I had a phone call this morning from my consultant saying they found cancer in two lymph nodes on my neck, as well as the blocked salivary gland.  Was the word cancer mentioned to you at all - or did they use the word lymphoma without mentioning cancer?  The word lymphoma was not mentioned to me at all - although it was hard to take in everything that was said as I was in such shock.  Like you - I now have a series of scans awaiting.  Please keep in touch and let me know how you get on, and I will do likewise - as it looks as if we have a similar journey ahead ️️. 

  • Hi since I posted the post man has been and I have a scan on the 8th . 

    Sorry you are going through this as well !! 

    When the doctor that I saw in ent rang with the results he said that they had found lymphoma I said that’s a type of cancer and he said yes but he wasn’t a specialist and didn’t want to say to much apart from I will need some type of chemo  but I need to wait for the scan and heamotolagy to explain it all as they were still testing my biopsy sample . 

    Definatly like you in shock I don’t think it will sink in properly until we have these appointments . 

    Definatly keep in touch ! Are your apps soon ? 

     

  • Dear Cazza1 - Thank you for taking the time to reply and to answer my question re lymphoma.  I only had the phone call this morning - so still reeling from the shock.  The Doctor said I would get a letter at the beginning of the week with regards to the next scan and also that they are going to look at my biopsy sample - again.  He also mentioned chemo - but until they know if the cancer is contained within the lymph nodes themselves or whether they are showing up in the lymph nodes due to the cancer being elsewhere - they don't know any more.  As you can imagine - I am so scared.  Can you tell me - did you have any other symptoms apart from the lump?  I have none at all as I keep well - the lump wasn't even sore.  Thank you again for your reply.  I will most definitley keep in touch x

  • Hi, I am sorry you have posted in this site. I had NHL last year, I had most of the B symptoms and was stage 3 after they discovered that with the ct scan. I had chemo but this was decided with the multi disciplinary team that your haemologist will attend. This will take place after all your tests have been done. They have to discuss the best treatment. I was in remission for only 6 weeks when it came back but this time as I have no B symptoms and feel well atm they have decided to put me on watch and wait. No treatment for now apart from bloods getting done every three months at the hospital. Try not to worry yet as lymphoma is a blood cancer and different from other cancers, some people are on watch and wait for years. I know how you both feel as I’ve been through it twice now, difficult as it is, I’m adjusting my life round this and hope I don’t need treatment for a while yet. Best wishes to you both and please let us know the outcome which will be another few weeks unfortunately. Scans and tests take so long and very difficult as the wait will worry  you sick. After my ct scan they wanted to do a bone marrow biopsy and yet another biopsy to check if it was indolent or aggressive. I was actually 3 months waiting from my first GP appointment. Hopefully you will be quicker than me.

  • Dear Scones - thank you so much for taking the time to reply to me.  What you have written here has given me some comfort - thank you.  I will dip into your reply from time to time when I am feeling low as I am right now.  How do you sleep 'not knowing'?  How you do eat 'not knowing'?  I haven't eaten anything since the Doctor phoned yesterday morning.  I know I have to eat - but feel unable too.  I never slept at all during the night.  Does it get better - all this waiting and wondering?  Thank you again for taking the time to reply - so much appreciated. x

  • Hi, I wish I could take the worry away from you and I also wish doctors could understand the worry we face. They are used to treating us but this is all new for us. I cried every night, didn’t sleep well, wakened up in the morning to face the worry again, waiting for a call or a letter. It’s never ending. I couldn’t eat and lost so much weight. When I eventually got the appointment and saw the consultant, she was on call that day and had to answer her phone three times, she kept giving me a bit of news then took a call, by the third call I broke down as the news she was giving me was getting worse. This was the worst time of my life. Being positive though. I was more than ready for chemo, so glad that the wait was finally over and I did start to feel better then. The second time round I was so worried and the wait again was more worrying, thinking what are they going to do now if it only lasted 6 weeks in remission. When I finally got told it was back, I cudnt take it in. I read a lot about watch and wait and honestly didn’t think I would cope with that decision. Really they are just waiting till I got sick again. I’m on holiday just now and feel great, enjoying life to the full. If I get tired I take a nap, don’t push myself too much and hope this feeling lasts for a while. The treatment I coped well with but not ready for the second lot of treatment yet. Just scared in case it only lasts 6 weeks. I don’t have any night sweats even tho the temp is 45 degrees, not losing weight in fact I’ve gained weight, no itchy skin or breathing problems so I’m feeling happy.  Take care and I wish you well

  • Dear Scones - I really appreciate you taking the time to reply.  Reading your post described almost exactly how I am feeling - thank you for understanding. I am trying to picture the scenario in the Consultant's room for you that day.  How awful.  I am in limbo at the moment - not knowing what kind of cancer I have.  The waiting ... oh, the waiting.   So pleased you coped well with your chemo 'first time round'.  It is good to hear you are on holiday and feeling happy at this moment of time.  Thank you again for your reply.