Lymphoma

Hi Pjpumpkin,

Thanks for getting in touch at what sounds like a difficult time. My name is Ursula and I’m one of the cancer information nurse specialists here at Macmillan cancer support.

I see from your profile you have joined a couple of our forums; I do hope you are finding them supportive.

I am very sorry to read that you have had  a diagnosis of Lymphoma. We recognise that this can be a particularly difficult time of uncertainty whilst you await biopsy and scan results, before next steps can be discussed.

As you have experienced, following a diagnosis people often need more tests and scans to find out more about the cancer (in your case a biopsy and a CT scan). When all your results are available, what usually happens is that these will be discussed by the multidisciplinary team (MDT). The MDT will meet to discuss the results of these tests and plan your treatment. They will consider things including:

• the type and stage of the lymphoma
• its grade (if you have non-Hodgkin lymphoma)
• the symptoms you have
• which parts of your body are affected
• your general health
• your preferences.

After the MDT meeting, you usually meet your cancer doctor and specialist nurse to talk over your treatment options.

There are waiting time targets for the diagnosis and treatment of cancer in the different UK nations. You can read about these in more detail here. The aim for all healthcare systems within the UK is to make sure that you have a diagnosis and start treatment as soon as possible. Although there are targets, it’s not possible to say for sure how long it will take in your situation.

Have you spoken to anyone at the hospital to try and get a better understanding of what is going on? If not, then it may be an idea to do so, as they are best placed to advise on when you are likely to have your consultation. You could contact the secretaries, or the clinical nurse specialists in the Haematology department. If you do not have their number, the hospital switchboard should be able to put you through.

There may also be a PALS team at the hospital who you could speak with if you are worried about the length of time you have been waiting to see a specialist.

I am sorry that you feeling anxious and finding this waiting a torture. Although we cannot speed up the process, please know there is other support available.

Whilst you wait it may be helpful to plan for your consultation by thinking of questions to ask your healthcare team about lymphoma.

You may also find it helpful to chat in more detail with one of our nurses, by giving our support line a call. We often find we can explain our answers in a bit more detail over the phone, giving you the opportunity to ask more questions if needed. Also, Lymphoma Action have different avenues of support available which may be worth exploring if you haven’t already done so.

I do hope you find this information helpful, but please do not hesitate to get back in touch with us if you need any further support. 

Take care, 

Ursula

Cancer Information Nurse Specialist 

 You can speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.  

Ref: UH/KE