newbie question - lumps

Hi again David_P and well done navigating across to this corner of the Community.

Over my 24 years journey, especially in the first 16 years I had lumps and bumps come and go.

When you are diagnosed with a blood cancer like Hodgkin's Lymphoma your Lymphatic-System becomes more active and as your condition progresses these lumps will come....... but your immune system will have a go at fighting this so some lumps will go down.

Some people live with this for years as they are put on what is called Active Monitoring (Watch and Wait)  but with HL treatment tends to start sooner then later.

Have you had a good at contacting the Hematology clinic to see how your referral is progressing?

Thanks again Mike,

I haven't tried to contact Haematology as yet, I was told they'd contact me 'sometime this week' so I'm giving them the benefit of the doubt.  I shall certainly be calling them Monday if I don't hear anything.

It is important to keep the system honest as I have had first hand experience of stuff falling through the NHS cracks.

I was under Dermatology for 14 years (My Lymphoma is a rare skin Lymphoma) then when it become aggressive in Sep 2013 I was referred to Oncology for radiotherapy, this happened very quickly but once my radiotherapy was completed the lymph nodes on the left of my neck started to grow very quickly so Oncology urgently  referred me to Heamatology…… I was told 2 weeks, I heard nothing, tried calling the clinic but could not get an answer. I was in a bad way but happened to  have an appointment with my great GP who used back roads to be able to talk to a consultant…… I was told to be at the Heamatology clinic first thing the next day…..   when I arrived at the clinic the consultants words were “you have decided to turn up - the letter was sent 10 days ago”…… and I had been put down as a no show so they did not try and get hold of me again.

There were some very strong words said but treatment started….. eventually it turned out that the hospital central mail system had been down so some letters were never sent out.

So the process for new patients at the Heamatology unit is for a letter to be sent out but the Specialist Cancer Nurse (SCN) in the unit phones to confirm that an appointment has been made and a letter is on its way and gives details of how to get in contact if the letter does not appear or circumstances change drastically.

Hi, I was diagnosed with stage 4 HL in 2019 . I did have one visible lump on my neck for ages before I was diagnosed but it went as soon as I started treatment and never came back .

my advice is keep speaking to haematology as things definitely slip through the net . Anything you aren’t sure about speak to your nurse as they are there to help you and nothing you say will sound daft either . 
Hope the treatment goes well , just keep positive and reach out to anyone you need to .

best wishes 

lisa 

Hi Lisa and Mike,

I've taken your advice and called the hospital as I still haven't heard anything.

After a good few phones calls - wasting my time, and then going back to a contact at the hospital who'd helped me before, I have managed to get the name of the Doctor that I am to see.  I'm told I've been fast tracked and should get an appointment within the next two weeks.

Back to the waiting game

Well done, and at least you now have a new timeframe……. now it’s all about perseverance. These clinics always have cancellations so nothing wrong with calling them mid next week and asking but also request that if a cancellation comes up can you get it.

You may also want to start looking though this link Questions to ask your medical team about Lymphoma and get a note book started with the top questions you want answers for.