Radiotherapy at Guys hospital anyone? I need to make a decision!

[flappers]

So it is decision time. My 1.5cm AN has grown in a relatively short time to 2.2cm, pressing on the brain stem and I have been given the option of surgery at Kings or radiotherapy at Guys hospital. The MDT is leaning 'marginally' towards radiotherapy being the better option but there is a 3 to 6 month wait list. Anyone here had radiotherapy using LINAC at Guys? How was it, and how were the after affects? I know I have to make up my own mind but any opinions here on which I should choose?! I think I am going to go for radiotherapy but scared about the swelling after.

[Skipton]

Hi, I had Radiosurgery on my 2 cm. AN on Tuesday 15th March 2022. At Christie’s Salford Royal. Everything went to plan, my main symptom is fatigue, I have a nap in the afternoon, my Doctor said it will take 4 - 6 weeks to feel back to normal. There have been no physical signs. Just received my appointment letter today to see my doctor on 8/9/22. To discuss the future. Keep safe. Mike

[flappers in reply to Skipton]

Thanks Mike, I hope you continue to have no physical signs. I know these can occur a while down the line but good to know so far so good for you! Lin

[flappers in reply to Skipton]

Hi Mike, wondered how you are doing a month on? Lin

[Skipton in reply to flappers]

Hi, I am fine, but still feel lethargic, and also feeling fatigued. On holiday at the moment. Have to be careful with my balance. But I think I am getting better each week. Thanks

[sadie2009]

I had a 1.5 and offered srs at the Royal hallamshire but decided to wait. Wish I hadn't, by the time I got to the cut off of 3cm for srs my hearing plummeted. Id already lost hearing on my other side due to conventional surg in 1999.. the srs procedure itself is really nothing, I was given steroids to combat any swelling altho the scan showed a slight increase 6 months after treatment but it did the trick and stopped it in its tracks and now its necrotic. I was given avastin alongside. Heres my before and after, white alive, grey dead. Good luck.

Xray

[flappers in reply to sadie2009]

Thank you so much for taking the time to share your information Sadie. That’s so good to know that SRS has been successful and not too gruesome for you.

[SJa2020]

Dear Lin, I prayed for you on the day & thought would give you a few days before checking up & you obviously have the info. Look it’s always best to know & have Drs know the next step. I’ll let the others with experience/ knowledge guide you. From me a huge hug. Don’t worry it will go well. You’ve come all this way right ? And as I said it’s found, Drs know what to do & you can take a decision weighing all the points & Drs best advice. When do you have your next appt? Will pray for you. Take care & all the v. Best Sarah J

[flappers in reply to SJa2020]

Thank you so much for your lovely message Sarah J. How are you managing at the moment? X Lin

[SJa2020]

You are welcome & will pray for you. You & a few others really helped me when I was at one of my worst points & this website really helps in that way. This is where the subject experts are - living the life with all!

Just take Drs best advice & from all here - am sure will be fine. Let me/us know dates will do specific prayers for you then. TC

Me - I’m fine. So the so called AN was actually Covid spiking my dormant MS. And after many months, i now get monthly infusions of a DMD medicine that has really helped. Still get niggly ear aches at times but fine. Also still a bit dizzy & have a bit wonky walk but fine.

You take care. Keep us/me posted - huge hug.

[shouie]

Hi Flappers. It's been a little while..

I had SRS back in February 21 on my 1.85cm AN. Which is absolutely fine, easy, painless and quick procedure and fortunately I didn't suffer any side effects.

So I had the long 1 year wait before my MRI scan after this procedure.. unfortunately my AN has increased in size slightly; an increase of about 2mm... but this can sometimes be the case after SRS as the AN becomes inflamed.

As mine is growing fairly slowly, I now have to wait another year for my next MRI to see if this is still growing or not (fingers crossed).

Anyway the SRS is a easy process but as you say it's up to you to which treatment you decide to go for.

Unfortunately both routes have a lot of pros and cons, which I know you are aware of.

Stay strong Sister.

Shouie x

[flappers in reply to shouie]

Hey Shouie....I have finally been given my date for first follow up scan,18 months after SRS as that is Kings hospitals guidance (due, as you found, to the swelling that still could be present up to a couple of years) . I wondered how you were doing and if you have had your 2nd scan earlier this year and what it showed? Lin x

[flappers]

Hey Shouie, good to hear from you. Thankyou so much for your reassuring message. So glad to know the treatment has been pretty straightforward for you so far. Where did you have your SRS? Lin x

[6625]

I've had surgery and radiotherapy in the last 6 years ,hope all goes well for you

[flappers in reply to 6625]

Gosh, having both is a lot to manage! Did you have surgery first and then radiotherapy to treat the remnant? Or was radiotherapy unsuccessful and then you had to have surgery? Which was the more straightforward to recover from? And how are you doing now?

[6625 in reply to flappers]

Hi I had surgery first which was really scary I was in theatre for 10 hours ,operation left me with nerve damage down fight side of face and constant dry eye,I still have good days n bad days but I'm just plodding on n taking each day as it comes

[flappers in reply to 6625]

It is such a tricky journey, and we can only take it all as it comes, I hope you soon have more good days than bad. 💐💐💐💐💐

[6625 in reply to flappers]

Thank you ,hope all goes well for you

[shouie]

Hi Lin.I had my SRS treatment at Derriford Hospital, Plymouth, Devon.

And as I said really quick and painless procedure.

And I had no problems with swelling or any side effects, I was given steriods for any swelling but I only took these for about a week as I felt OK.

This was my experience and I appreciate that it can be different for different people.

But in my case all was fine x

Shouie x

[flappers in reply to shouie]

It’s so interesting that we were at exactly the same place with size of AN a couple of years ago but you were offered radiotherapy and had treatment in Feb 21, mine was scanned again then but advised w and w, and it grew another 7 to 10 mm. There is a 3 to 6 month wait list for radiotherapy at Guys now so it’ll be even bigger then. Hindsight is a marvellous thing but wish I’d have had treatment a year ago. Hey Ho! Hope your sore neck is improved and you’re still getting regular massages to help if not.

[shouie]

I think that I was super lucky to be treated fairly quickly, amongst covid and all that fun...Try and push for any earlier slots if you decide to go for the SRS..

As you'll only need about an hour to be fitted for a mask (which sounds scary but is fine).

And my treatment itself was only about 30 mins.

Mask fitting and treatment were on different days x

[shouie]

The mask, in case you were wondering.

They mould this by putting like layers of wet sheets across your face and build them up..

[flappers in reply to shouie]

Stylish. I think I shall bring mine home and spray it silver😎

[Martin-mtig in reply to shouie]

I had that. When I was put in place for the first round, they asked if I wanted Music. The hit play on a CD something opera came on. They bolted the door shout, and "Time to Say Goodbye" started playing...

A fellow patient in the waiting area told me: "Well...at least you didn't get Robbie Williams "I hope I die before I get old" ...

I find a laugh helps with these things...

[6625 in reply to shouie]

Oh yes there it is the mask,had my treatment 3bout 3 months ago

[Martin-mtig]

I had Cyberknife at Harley Street. That said, my socnuslktant was one of the heads at Guys. I've been over there loads of times, and a friends with a benign cancer was treated there as well. They are an absolute class act imho.

From what I've learned, radio over invasive hands down. For some bizarre reason, some seem to want to jump right into open theatre these days - I cnnot tell if it's just a cheaper option or what. I am close firends with a specialist on this in the USA with Johns Hopkins who also helped oversee my case. The advice is surgery as a last resort: you will lose hearing to some extent and there can be other side effects.

If you want to be sure, and are abel to, look up HCA Cyberknife clinic online, and for the cost of one consultants appointment, you should be able to get a second opinion...

Of course I am biased due to my experience, take this with a pinch of salt...

[flappers in reply to Martin-mtig]

Oh, ignore my asking about the size of yours...just remembered we had chatted before about neck pain etc, and you had a 6mm one... and were taking high grade CBD. I have been taking that for the last year, and sadly my tumour still doubled in size to 2.2, so I guess it didn't stop or slow down growth rate as I had hoped. Hey ho!

[flappers]

No pinch of salt needed, this is really helpful feedback and helps me affirm my decision. Although as for the music, if I have to listen to Robbie or 'easy listening' musical theatre type I could then regret my decision! Thanks for the heads up, I would rather listen to the noisy machines. When did you have your treatment and was it on a similar size or smaller AN (2.2cm)? Did it stop the bugger growing and did you have to take steroids some months later and have lots of side affects? I am hoping I will breeze through it all like I tend to do with life, but also want to be prepared for any nasty things, so it is bonus if I am okay!??

[Debra1963]

Hey there just wondering how you are doing? Xx

[flappers in reply to Debra1963]

Hi! I’m on the train right now going up to Guys for my first of 3 radiotherapy sessions, given today, tomorrow andMonday, so ask me again in a few weeks maybe!! I feel prepared as much as I can be. How are you doing? X

[Debra1963]

I hope that today went well for you and also the next couple of days. How long is each session for? I had my radiotherapy over 6 weeks and managed to work in the mornings and have my treatment in Addenbrookes (approx 2 hours away). I was pretty exhausted after but with a full week off work recovered pretty well. I hope the same goes for you. I am doing pretty well thankyou. My next scan is April next year. I have tinnitus which drives me nuts some days, hearing loss and balance issues but you know I count myself pretty lucky. Thinking of you. Take it easy xxx

[flappers in reply to Debra1963]

Hi Debra, all went well, each of the 3 sessions lasted about 20 mins, with some adjusting the bed and machines in that time. It was amazing the way it all moved around me, very futuristic! I feel completely fine… so far!

[SJa2020]

Hi Lin, how have you been? Hope all goes well? I’m going along have few more things popping up from time to time but all being dealt with as we do. TC Sarah J

[flappers in reply to SJa2020]

Hi SJ! Thank you for asking. I’m doing pretty well really, if I remember to listen to my body and rest when I get all discombobulated! No terrible after affects yet of the radiation 6 weeks on to note, had a few things to manage too but overall absolutely fine! X

[SJa2020]

Great to know. Thanks. Yay we just keep going! (Thank God) !