That's amazing to find your primary after so long! Having a diagnosis and a treatment plan - albeit a tough one - must feel like great progress. All the best with your treatment and recovery:)

Hello

I've just finished 25 radiotherapy over 5 weeks and then Brachytherapy as an in patient for 5 days for primary Bartholin Gland Cancer .. it was supposed to be radical chemoradiation but they had to stop Cisplatin after 3 of 5 once a week alongside the radiotherapy.

Mine was missed too - they were trying deal with bleeding post menopause and abnormal cervical smears. They pretty  much ignored the growing lump for over a year and I strongly suspect that details are now missing from my NHS app and medical recrods because my trust and GP missed it so it became advanced stage. BGC is truly exceptionally rare - I think there's only been 300 women with it over 2 centuries, so late diagnosis is common. Any suspicious cysts should always be referred to a centre of excellence in gyne in post menopausal women.

There isn't one agreed treatment plan as there are two few women affected to do clinical trials. It would seem that 8 percent (like me) aren't able to have surgery but the radiotherapy alone before brachy seems to have reduced my tumour(s) by 50 percent. I won't have new PET CT and MRI till May to know if it's been successful.

I'm glad you've got a diagnosis. I've done a lot of reading so if there is anything I can do to help let me know

Best wishes

Thank you so much for your response - I have my oncologist chasing up my original biopsy from last year.  just starting to get burn from radiotherapy but my I'm told it will get much worse.  I have done 15 Radio tomorrow - so half way and I have 2 more cisplatin. Which hospital are you with ? Please keep me updated on how you are getting on.  Many thanks, Dawn

Hi. I made the mistake of not reporting symptoms/side effects and they really kicked in by the third week. I eventually got bounced to my 3rd trust after so many mistakes were made so I've sent you a connection request to keep personal details private.

However, whatever system they use to get help (weirdly this wasn't really the Cancer Specialist nurses where I am now but a separate acute oncology unit). But when I figured this out the oncology registrars and nurses were very help with reducing pain and making me more comfortable. Also tell the radiotherapy staff when you have your treatment of any burns/pain/open skin so they know when they move you about for position.

Get every gel that can help for internal and external soothing and application such as Intstillagel Flamazene/Flamet and ActivHeal Hydrogel plus oral meds such as OraMorph. The very helpful Anaethetist for the procedure for brachy rods when I said that morphine wasn't helping much - a bit but not a lot - said it wasn't really designed for this. Sure use it but you need other meds and IMPORTANTLY keep the pain under control, don't let meds drop keep topped up. 

I'm glad you've had a good experience with your hospital. I feel a bit like an unwelcome parcel or mushroom as in kept in the dark etc. 

HUGE best wishes and feel free to ignore or accept the connection/send messages or reply for more help x

Hi - I have accepted friend request - I think ..... Dawn

Hi

Got everything and replied x

Don't hesitate to find me as needed.

From now on at your stage I needed the external gels and one that is both plus oramorph and other oral painkillers.

Keep the pain under control don't let the meds dip. That's the anaesthetist warning! Tell the drs nurses and radiotherapy immediately with any issues including broken skin and going to the loo. 

I bought men's cotton boxers 2 sizes too big when I needed to wear underwear but literally just wore maxi dresses with no knickers for weeks at home - as nurse advised- and still do! Best wishes 

Find me anytime 

thank you - got a lot of vaginal swelling and skin soreness (I  do have a degree of lymphoedema from my previous groin lymph node resection) - using the flaminal hydro at the moment and taking codeine - what other gels have you tried ?  Dawn

Hi - I wish I'd got the Flamigel MUCH sooner. There's a syringe with Instillagel in it that's part anaesthetic and disinfectant that was very helpful to poo for a while as you can put internally but it started to sting with broken sting so ask about it. I found Activheal Hydrogel from the hospital and specialist nurses very helpful but since discharge. I'm struggling to get it from local pharmacies