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Hodkins Lymphoma @ 36 :(

guxyc12
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Hello.

Looking for some advice.

I felt a lump on the left side of my neck above my collarbone. Spoke to my GP (family doctor) who advised to wait for 4 weeks. 4 weeks went and neither shrunk nor increased in size. Eventually ended up with an ultrasound then an ultrasound with a fine needle biopsy which eventually led to the diagnosis of classical Hodkins (nodular sclerosis).

I did have a CT scan of my chest, neck, abdomen which was all clear (other than the lump)

The questions I had were:

1. Presumable this is stage 1. Would it entail surgical removal of the lymph nodes or radiotherapy? There are 3 lymph node all around 1-2cm large

2. How reliable is CT scans for picking up spread? I'm aware at some point I will have a PET scan to confirm this

3. Do you always have chemo. I have 0 symptoms. Normal bloods, LDH

4. With the worsening waiting times on the NHS is it worth going private. Was planning on buying a house so wouldn't mind going private if costs were reasonable.  Does anyone know the current costs for this in london? As its stage 1 I think it is 2-4 cycles. 

Thanks

  • Hello and thank you for your post.

    I am sorry to hear about your situation but hopefully you will know more soon.

    It is important that the doctors do all the staging investigations before they confirm the stage of your Hodgkin's. Once they have done all the different tests your case will be discussed in a formal meeting called an MDT (Multi Disciplinary Team) Meeting where they will review all your different tests including the PET CT to then say what stage your cancer is. It is only when they have looked at all the results will they be able to make an informed decision. 

    They usually need a combination of different scans to confirm a diagnosis and there are guidelines that are used in diagnosing Hodgkins. 

    Have a look at the tests they may use to help diagnose your cancer here.

    I can't say how they would decide to treat your cancer as this is something that would also be discussed at the MDT meeting. We do have some information about how treatment decisions are reached which you can see here.

    I can understand that it is unsettling reading about the delays in the NHS and what impact it will have on you. I would discuss this all with your haematologist. I'm sure that they will want to get on and treat you as quickly as possible but do talk to them about your concerns. I am not sure what the costs would be but if you do decide to go privately at this stage you may find that you have further delays if they decide to do more tests. 

    If you haven't been given a haematology nurse you will probably be allocated one after the MDT meeting. They are usually a great source of support and are great at navigating you through the next few weeks.

    You may also find it helpful to look at the information on Lymphoma Action website here

    You have posted in 'ask the nurses ' but if you post in another section you may find that you get more replies.

    Try and take one day at a time and try not to think too far ahead.

    If you feel that it would be helpful to discuss any of this with one of the nurses on the helpline then do get back to us or give us a ring.

    We are here Monday to Friday 9am to 5pm Freephone 0808 800 4040.

    All the very best,

    Catherine

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