Cyst growing on what's left of the acoustic neuroma

[StrugglingSpouse]

Has anyone had a cyst growing? My husband was diagnosed with an acoustic neuroma 8 years ago, he had surgery 6 years ago, life has been living hell since. I didn't dream it would affect us so much long term. In the last year we've been trying to pick the pieces of our life up again yet 2 months ago the surgeon diagnosed a cyst growing on the remains of the tumor which may necessitate another 13hr surgery. We have an appointment next Tuesday to hear how the surgeon wants to proceed.

All very challenging and very isolating

The isolation is one of the hardest parts of going through all this

Looking for support and to hear experiences so I feel less isolated.

Thanks so much!

[Colejoe1]

Did he have. any new symptoms to indicate a cysts ?

Hope it all goes well . Such a worry.

[StrugglingSpouse in reply to Colejoe1]

Yes it affected his balance which is why we knew to check it out

[SunFairy]

Hi StrugglingSpouse

Sorry that your husband has now developed a Cyst on the tumour that was left behind.

I was diagnosed with an AN in 2013. Had STRS in 2014 and then in 2022 on my annual MRI it was discovered that my AN had developed a Cyst. My consultant decided to have a 6 monthly MRI to keep a check on it as cysts continue to grow, but they may be slow growing. Unfortunately mine was growing quite fast and my only option was to have surgery to remove both Cyst and tumour. I have been told that more often after surgery the remaining sliver of tumour tends to stay stable and hopefully no further cysts. I am now 14 months post surgery and my 6 month MRI showed no further cysts of tumour growth so fingers crossed.

I knew things were not right when I had the 2022 MRI because my balance was getting increasingly worse along with my hearing.

Apparently cysts do not respond to radiotherapy and surgery is the only option.

It is very overwhelming but your husband will get looked after. I find if I stay positive I feel less stressed. I know it's not easy and you can feel very isolated. There is a support group on Facebook that is very helpful, if you haven't yet seen it, look it up, its the British Acoustic Neuroma Support Group, very friendly and supportive to both the AN sufferer as well as their spouse or family member.

I send you both good wishes, and take care of yourselves. All the best.

SunFairy 🌸 🌼

[Alison_L in reply to SunFairy]

My cyst is shrinking after radiotherapy.

[StrugglingSpouse]

Thank you very much. It is very isolating and I didn't even realise it. Living with illness is very different to other struggles. Life is never the same again and daily functioning is a bit dysfunctional. It was very validating and helpful reading your story. Thank you for sharing. And for your kind positive words.

This will be my husband's second surgery. They will try to remove more of the tumor together with the cyst. It's a bit worrying though if there will still be some tumour left - what's to stop it growing another cyst in the future?

My husband has had surgery as a boy and then two surgeries 7 years ago. This will be another one. It's a lot for one person. Illness is so hard

[Alison_L]

Hi SS. My AN was 1cm when it was discovered, but it then developed a cyst (my lodger had a lodger), which added 0.7cm to the whole package in 7 months. I had a bang to the head which may have caused it. I had Fractionated Stereotactic Radiotherapy in Jan/Feb 2023, and since then, 2 MRIs have shown the whole lot, particularly the cyst, is shrinking. The neurosurgeon at a different hospital had wanted to operate, but referred me to a cancer hospital when I refused. So glad I did!

[StrugglingSpouse in reply to Alison_L]

Thank you so much for sharing!I will ask about radiotherapy etc at our appointment on Tuesday. My husband's already had 3 surgeries in his life, 2 were 7 years ago, he doesn't need a repeat surgery if we can help it

[Alison_L in reply to StrugglingSpouse]

Do specifically mention FSRT. Others are saying you can’t have radiotherapy on a cyst because of the risk of swelling, but my neuro-oncologist explained that there was less chance of swelling with the Fractionated treatment - 25 small daily doses over 5 weeks xx

[StrugglingSpouse in reply to Alison_L]

Thank you very much!

Can I ask who your neuro-oncologist is?

[Alison_L in reply to StrugglingSpouse]

Nicola Rosenfelder at the Royal Marsden Hospital. I was referred there from St George's Hospital, who wanted to do Translab surgery, which I refused.

[StrugglingSpouse in reply to Alison_L]

Thank you so much for your helpful information! So kind of you! I'm taking it all with me to tomorrow's appointment! Xxx

[Alison_L in reply to StrugglingSpouse]

Obviously, it may not be possible for your husband as he's already had surgery, but always worth asking. Good luck xx

[StrugglingSpouse in reply to Alison_L]

He had surgery 7 years ago for his AN but may be due for another one now for the cyst that's growing on the residue of the AN. We're trying very hard to prevent surgery if possible

[StrugglingSpouse in reply to Alison_L]

Nicola Rosenfelder at Royal Marsden is under NHS, correct?

[Alison_L in reply to StrugglingSpouse]

Yes, part of the neuro-oncology team at Chelsea. How did the meeting go?

[StrugglingSpouse in reply to Alison_L]

Thank you! Inconclusive at the moment as we're looking into the FSRT first. The surgeon did say we should operate but we're going to look into Nicola first and see from there as we're really trying hard to avoid surgery.

Thank you for your sharing. Truly grateful.

Can you tell me more about her expertise and experience? How can I find that out? How new is this FSRT treatment idea?

Thank you