Patient Stories

Anne’s 7 year story: Salivary Gland Cancer

Anne Hanscomb bravely tells us her patient story from discovering she has salivary gland cancer to treatment and remission over a 7 year period.

Small lump below her ear is Anne´s first symptom

In February 2017, I found a small lump ( maybe the size off a pea) just below my right ear whilst washing my face. I thought it was a spot or blind spot at first.

Life was a little strange at that time, I had recently taken a new role as operations director, my mother in law had died the previous week, so I was juggling a new job, supporting my family and planning a funeral. The lump didn’t go away so then I wondered if it was my wisdom teeth playing up – they sometimes grumble!

On 1st March, the lump had grown and a friend even noticed it….I said it was a swollen gland from being rundown, but it did make me think that I should see someone about it. On 6th March I went to the GP, who basically said he didn’t think it was anything serious but would arrange some blood tests. The results came back a few days later with nothing significant showing up, but I asked for a referral to an Ear Nose and Throat (ENT) clinic at the hospital. I was told the waiting list was 6-9 months and it was not going away so decided to opt to go privately. I never knew you had to find your own specialist to go privately and spent 2 days searching google to find one I liked the sound of. Having no support from anyone to help me choose who I should see was very scary!

Salivary gland symptoms, diagnosis, treatment, side effects and recovery. — Anne Hanscomb describes her 7 year journey with Salivary Gland cancer

Faulty diagnosis despite ultrasound and a Fine Needle Aspiration (FNA)

My appointment with Mr Sim at The Bath Clinic was 13th March, where he thoroughly examined the lump (now the size of 2 peas) and concluded I needed an ultrasound and a Fine Needle Aspiration (FNA). This was completed on 15th March as I was going away on holiday the following day. I had to travel to Cheltenham for the procedure and a follow up appointment was made for 3rd April when I returned.

My holiday was very different as the small pea had now changed to a large marble and my head was whizzing with the stress of not knowing what it was.

On the 3rd April I was told no cancer had been found – wow what an incredible feeling! However my consultant was concerned about the increase in size and subsequently we agreed that I should have surgery on 11th May. I had pre-admission appointments on 26th April and 8th May. I remember thinking this “felt a little over the top when there was no cancer”, but I guess they needed to justify the cost so “just go with it”!

Precautionary surgery – was it over the top?

11th May was surgery day and the lump was the size of a golf ball! I was now very concerned about how much it had grown in such a short time and I was so grateful that I was able to get this sorted out and in a position to go privately. I attended The Bath Clinic and stayed overnight after the surgery. On 12th May I looked in the mirror and burst into tears as the scar was massive. It looked worse with blood, stitches, iodine, etc, but I remember thinking “I only have the scar to worry about not the scar and cancer so pull yourself together”!

On 17th May I received a letter with a follow up appointment for 19th June, at 6 weeks post surgery. I was feeling very rough and asked the consultant´s secretary for an earlier appointment which was then scheduled for 25th May.

My neck was stiffening and feeling very tight (similar to sunburn when the skin feels tight and damaged). Also, the numbness in my neck was getting worse when I thought it should be improving each day.

Post surgery results and consultation on next steps

On 25 May I attended The Bath Clinic with my written list of questions; when can I fly? What sunscreen should I use on the scar? Should I avoid the sun for 6-12 months etc?

That list was never asked! My consultant sat me down and informed me that I had cancer. Stage 1 salivary gland cancer.

I couldn’t understand how the FNA had been clear so was that a mistake? He explained it like this – probably not medically correct, but appropriate for a layman´s understanding in a distressed state – “the FNA is like sticking a needle in a banana you may or may not hit a black bit”! That description has stayed with me for years and has helped me understand why the FNA was clear, when I actually had stage 1 salivary gland cancer.

Diagram showing the positions of all the salivary glands which could be affected by head and neck cancers — Diagram showing the position and size of the 3 main salivary glands.

After surgery they did a full biopsy where they sliced the lump thinly like a cucumber and looked at each slice.

From this biopsy I was told that I would be referred back to the NHS and contacted by the Oxford head and neck cancer unit within 2 weeks. It felt like I’d been sent home to die! Totally unrealistic I know but it’s how I felt.

Referral to the NHS Cancer Unit in Oxford

My sister is a nurse and she told me to not Google search but to only look at certain websites; NHS, Oracle Head and Neck Cancer, Macmillan, Cancer Research, etc. I LEARNT SO MUCH THAT WEEKEND – cancer stages, treatments and a lot about my own resilience or lack of it.

8th June was my first appointment with the Oxford head and neck cancer unit. Here I met my new oncology consultant who is amazing at his job, but I think his matter of fact approach was too harsh for me at that time. Luckily, the head and neck nurse who was present was able to explain things better. The reality of the position I was in really hit home when I was given a 3 month sick note for my employer!

My oncology consultant was frustrated that I had gone privately and that only an ultrasound done had been done pre surgery. He arranged more scans (MRI and PET-CT) and discussed radiotherapy and possibly more surgery. “I was just thinking how good my scar was improving and WHAM here we go again”!

Oxford arranged another scan which found a separate 6mm lump next to the site where the original lump was removed from. Over the next 6 weeks I had 2 further scans and 2 further FNAs although I must admit I had totally lost my confidence in the procedure of getting a correct diagnosis from them. In August I was told they thought the margins were acceptable on the lump that was removed and therefore I would not have more treatment and would continue to be closely monitored every 6 months.

Reflections, remission and monitoring over 7 years later

it’s now over 7 years since I found the original pea sized lump and I still am monitored every 6 months. I feel very lucky have not to have had to go through radiotherapy or chemotherapy treatment. However, I am also aware that it’s probably due to the fact that as the FNA was clear I was operated on by a cosmetic surgeon, not a cancer specialist, who used margins of error sufficient for no further invasive procedures to be needed.

Let’s all take action to prioritize our health and raise awareness for early detection.

If you´re worried about changes in your voice, neck or mouth please refer to our simple “home check” guide.

See also other patient stories to hear about other people diagnosed with Head and Neck Cancers.