Just been diagnosed with Lymphoma, how should I feel?

Slightly odd question, yes, but I got his diagnosis this week and have begun telling family and friends who have all been very upset, which makes sense but... I feel fine, for now it feels no worse than my Lupus symptoms, my real question is how is it going to feel? should I be scared? How long is treatment likely to take? I understand I still have a lot to know about my diagnosis but I just wondered if anyone would be willing to share their experiences of their journey.

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  • Twentythree - you are in my thoughts and prayers!

    Two years ago because of the size of my glands and swelling of my jaw they thought that i may have had this. Thankfully after they completed an ultra sound they confirmed it was not. I was so anxious and worried going through the process, but was determined to ensure that i had the full answers to my many questions and was fully aware of any treatments and what it entailed. The success rate of treating lymphoma they assured me was very high and i took comfort from this.

    How were you diagnosed, raised glands like myself?

    Lulabelle x

  • Hi twenty three

    You are very brave & a good example to us all, in your difficult circumstances. It sounds like you are being very practical, & focusing on what you need to do to get through this. I suppose when you've put up with all that lupus can throw at you, in a way it's 'good' experience for dealing with something like this.

    I hope you can find someone to help you learn what to expect. Maybe the nurses at your clinic could help you in this way?

    Very best wishes, stay strong. X

  • Hi Twentythree,

    In 2001 I was diagnosed with Non-Hodgkins Lymphoma. I also have lupus which was diagnosed in 1993 but which, I think, goes back to the mid 70s. Anyway, as far as the NHL goes it wasn't as bad an experience as I had feared. Again, I had it for some time before I was diagnosed and it turned out I had 4 tumours. One in my neck (from which they did the first biopsy), one in my chest area, one over my spleen and one over my bile duct (liver) which was causing me to turn a very unflattering colour orange. I was admitted to hospital where I began chemotherapy. Now, apparently there are several types of chemo - and which one you get depends on your particular condition. The one I got was called CHOP and it involved hair loss, nausea and everything you expect from chemo. However, it also had an unexpected side effect in that my lupus symptoms almost disappeared. It makes sense when you think of it. Chemo suppresses the immune system and because lupus is an overactive immune system the chemo actually made the lupus bearable! I can't say that it was easy but I'm a very practical person and I tend to treat everything with a "just get on with it attitude". Before my hair came out I got my daughter to shave my head (I think I got a No. 2) and so the actual hair loss didn't come as much of a shock. I joked about the savings I would be making on shampoo and conditioner and instead of wearing the awful wig I got from the NHS I wore a baseball cap which my sister had made especially for me. On the from of it was embroidered: "Well, it's better than a wig". Towards the end of my chemo when the lymphoma had been eliminated I had a stem cell harvest which is effectively the removal of stem cells from your blood. The stem cells are then frozen. Because these stem cells are healthy they will be used if I ever have a relapse. I don't fully understand the technology - but apparently this will give me a much better chance. I would say the worst thing about it has been that subsequent to me getting the all clear from the cancer it was discovered that I had auto-immune hepatitis. In effect this is the lupus/immune system attacking the liver. It is well controlled by the use of azathioprine though. I did ask my consultant if there was any connection to the lymphoma and he said he just didn't know. However, he thinks that because I had a tumour in that area my liver could just be a 'weak spot' which the lupus then proceeded to attack. However, I am getting along not too badly now. Of course I have bad days just like everyone else - but I look around and know that there are a whole load of people worse off than me. I am convinced that the medical advances they have made in the treatment of cancer are immense. You can only take things one day at a time and face that day with as much fight as you can summon up. I'm sorry for going on for so long - but I wanted to share this with you in the hope that you will not be so afraid as you might otherwise have been. There is a whole lot that can be done for you - and I'm sure your doctors will be doing their very best. If you want to ask me any more please feel free (send me a pm if you like). I'll be thinking of you and hoping for the very best for you!

    All the best

    Norma

  • Hello

    How should you feel? We can give you examples of how others feel , or we can suggest how we might feel. But how 'should you' feel?? There isn't a manual for that one.

    You might feel numb, or angry, or frustrated, or cheated, -or all of the above.

    And as you say you are already ill, -so why should it make a difference at the moment?

    Processing something as big as this take time, so dont be surprised if you feel different from one hour to the next.

    The path to beating this thing is a personal one and as such your treatment and how long or hard or painful will be different to the next person in the waiting room.

    When I first met Stewart he seemed moody and unsociable, I was looking at a car for his sister with view to restoring it. We agreed that Steward would do the trim, mechanicals and electrics.

    So working together we got chatting. Turns out he had non hodgkins, and went into denial when he took ill, he continued working as a sparks in London, and had collapsed on the platform at kings cross one morning, He was so bad that the next evening while in an oxygen tent they called in a priest to do the last rites....

    A few years later, mass -free he was working as a life guard and really looked the part. The only sign of his battle is the patch of missing beard on his throat.

    20 years later, he is just Stewart.

    There are a million stories of cancer, and though they each have similarity they are each unique.

    Good luck to you, Accept what you cannot change and fight the battles you can win.

  • i have just had a phone call from the neuclear medicine dept last night) to call asap regarding a pep scan. had some bad results i suppose for my lymphocytes..i am very unhappy of course as this scan is looking for cancer. i have just been diagnoded with lupus around a year a go and now have to face this. there are different types of llymphoma so will have to wait and see.

    after reading my notes last week from my rheumatologist that i am not that ill did not amuse me oh well!

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