Totally devastated

[Rosebine2]

I went to a private ENT for balance problems and they gave me an MRI scan. they have just called and told me that there are lesions on my brain. I thought this was a rare thing with OC, they were talking about me being referred to Neurology at Kings in London. I live alone and have no relati ves. only my dog who Im worried sick about now..I know there is no good outcome from this. I don t know what to do

[Bistoboy]

so sorryto hear this .I had an MRI on Tuesday at the Christie on Tuesday and am waiting for the results .Same symtoms and having trouble walking . It is very frightening . i have had wonderful support from one of the ladies on here . I hope you soon get an appointment from your neurologist.

[Rosebine2 in reply to Bistoboy]

Have messaged you, hopefully yours is labrynthitis o r similar ear problem.

[Bistoboy in reply to Rosebine2]

cant seem to pick up messesges . it isnt my ears , my gp gave me a thorough examination , my oncologist ordered an urgent scan.so will just have to try to keep sane till i get the results .

[Lizz49]

I’m so sorry to read this, it must have been a huge shock for you. I understand it’s rare for this to happen in OC, but know from ladies with breast cancer whose journeys I follow, that in many cases this can be treated with radiotherapy.

You say you went private to the ENT have you rang your oncology team to update them? Think once you can see your oncologist they can give you support and will have an idea of the usual treatment options in these cases.

I’d also recommend ringing the Ovacome helpline to talk this through with them as they will also be able to support you.

Sending hugs and hope to you,

Liz Xx 💖

[Newbery3]

I agree with the other ladies. Radiotherapy may sort this hopefully and you need you gp to get in touch with a social worker as they can help organise the dog to have boarding if needed, also the WRVS at the hospital will help with transport if you need that too X

[Rosebine2]

Ive been on the phone most of the day trying to get organised. Ive got a CT scan booked at Oncology for Tuesday, then I will have a wait - we know about those dont we - to find out what the pan is if there is one. Im just totally shellshocked. My GP is mostly uncontactable which is why I went private, and the way things are with the NHS doesnt fill me with confidence. Still trying to organise the dog.

.

[Lyndy2 in reply to Rosebine2]

Hi Rosebine 2

Check with your local Macmillan or cancer support as many have ways of supporting pet owners who are going in for treatment.

Hope you get a plan in place soon, I think it will help you cope with all this, especially knowing that your dog can be cared for.

Like others, I think radiotherapy is probably the way forward xx

[Sandramo in reply to Rosebine2]

although I don’t live anywhere near you ? I’m in Yorkshire if you need your mate looking after for longer than a few days I’m happy to come and get him / her . Had dogs all my life but not got one since I lost my last one at 18 . Fingers crossed they can sort you and you won’t need to worry about this aspect at least . Good luck xx

[Alfiepop in reply to Rosebine2]

Hello Rosebine2

Sorry it’s not a direct link but hope this helps with getting care for your dog if you are away from home.

cinnamon.org.uk/cinnamon-tr...

[Alibee2 in reply to Alfiepop]

When mum (my dog sitter) passed in Feb last year I contacted the Cinnamon Trust locally for help (I’m in Moray) with looking after my dogs when I go to the hospital (over 4 hours drive there & back & ambulance transport on a treatment day - usually makes it 7+hours) they told me they can only arrange help to folks on state pension (I’m 61 😢) tho I’m not sure if this is just the local group rule tho. Fortunately I found a local housebound lady who had lost her own dog not long before.

[Lovedogs41]

Sorry to hear this,such a shock for you.

I’m sure there will be a plan for treatment for you,there are several different types of radiotherapy available.Are you being treated at one of the big cancer hospitals? Second opinions regarding treatment options might be worth while x

[Educating-Rita]

so sorry to hear this, wishing you well

[Morini]

So sorry to hear this. Cinnamon Trust may be able to support you to be able to look after your dog if you need it. Thinking of you xx

[Rankij11]

I understand whilst brain mets are rare in OC , more people are surviving longer with treatments , enabling this to occur more frequently than it did

Jennifer

[27-359]

What a shock! I am so sorry you have had this news, but how fortunate that you opted for private treatment, or things could have been quietly progressing and getting worse.It's an entirely shitty disease that never gives up looking for ways to side line us, but wait and see what the treatment options are. Hopefully you discovered it early.

Jenny

[NewtonEmma1900]

I agree with a previous comment, contact the Cinnamon Trust, I have not not to use them yet but have heard good things. I too live alone with my precious dog, she was uppermost in my mind when I was diagnosed and I was more stressed about her than me and my family. Since the I have a couple lined up to have her when needed. I also have a dog walk for when I am working who will pick up extra days. Sending hugs. 🦮🦮

[govanhill]

I was diagnosed with oc in 2007. Have had surgery and rounds of chemo for recurrence s. Like you I was having balance problems In 2019.After mri I had multiple brain mets. Surgery wasn't possible. I was started on Rucaparib the parp inhibitor . In June 2021 I had radiotherapy to one met which shrunk. I have now been told the recent mri shows the mets are bigger but the Rucaparib worked for approximately 3 years xxMorag

[Rosebine2 in reply to govanhill]

I have been on Niraparib for about 18 months seemed to be working, obviously it wasnt as this was going on secretly.

[Sazzaroon]

I am so sorry to hear this news. This disease appears so cruel and unpredictable Have a look at the Cinnamon Trust for your dog. cinnamon.org.uk/cinnamon-tr... They foster dogs if owners have stays in hospital etc. Might be something that would helpI wish you all the good wishes in the world

Sarah

[Jannibags]

🙏❤

[Rosebine2]

Hello all,just had confirmation that Ihave two large mets at least. Been taken off my parp as it obviously didnt work, CA125 had been stable up to a couple of months ago when it went up a couple of points, so that is not a reliable indicator. Waiting to hear from Onc consultant but Clinical Nurse said they are looking at me possibly going to the Marsden, Of course, I have no one to travel with me even if the trains were running . Being sent round in circles on the phone.

[candyapplegrey in reply to Rosebine2]

I tried to get referred to RM and they wouldn't take me. They seem to have better treatment options than my hospital. Hope you can get switched. xx

[delia2]

I can’t offer any practical help but wanted to send virtual hugs and say I can imagine how scary this is. I would be worried about my pup too. It sounds like you’ve gotten some good suggestions here. It’s a lot of logistics but hopefully you’ll get the treatment you need in London. Xx

[thejoannabell]

My heart goes out to you in this horribly difficult and uncertain time. I’m in the US, but I am here wishing that there was something that I could do to help relieve your worry and stress. ♥️

[Ruebacelle]

Stay calm. There are always bumps in the road. See a good specialist OC and brain..there will be Chemo options for sure. Find someone to help w the dog if you need it. Stay strong and positive. I have seen a post on this site of a case where it went to lungs and brain and she wS greatly helped by the protocol they put her on Big hugs from paris

[Leniko]

I’m So sorry. Try not to panic. You may need your medical center to refer you for therapy to help you cope. Try to stay positive, many new drugs and techniques are available in 2023. Praying for you, Rosebine 2! 🙏❤️

[Reksio77]

I'm so sorry for you. As i live in Switzerland, I can't help, but I'm sending all my love and hope to you. 🐶🐕‍🦺

[MOOKIE-FOX1234]

What a terrible worry for you to have to shoulder alone . I am also , in the US so can't offer any practical help . It was so very kind of Sandramo to offer to come and get your dog , that should give you some peace of mind .Sending you all the very best of wishes for some answers and treatment options .

Hugs from Gillian, Mookie Fox 🦊

[Cristinpaige]

there’s a woman on another group o belong too and same thing! She is fine now and thriving.

[Rosebine2]

Posters mentioning Cinnamon Trust I am in contact with them. Only trouble is they are a 6 hour Drive away !

[Sherrym]

Please stay calm. My youngest son in the USA developed dizziness & neuropathy-has now been diagnosed with MS triggered by Covid (tho viruses in general cd do this he is told)

Wait to see exactly what these lesions are… admittedly MS is hardly a bag of laughs, & I wish it were me instead of him frankly. However, maybe they cd scan yr back too just in case?

[Alibee2]

So sorry to hear your news. Re your dog … it might be worth asking in local Facebook groups/Facebook dog groups that cover your area if anyone could help … you could then meet anyone who came forward and both you & your dog see if they are a good match… this is what happened with me when mum (my dog sitter) passed just after we moved to a new area. local communities often come good in my experience! I wish you only good things xx

[Nicky100]

I’m so sorry to read this and so completely feel for you. Where t do i you live? I’m happy to help support you if you need help. I understand the added stress of worrying about pets. With the internet now, there are so many more options for help with animals..you could try borrowmydoggy.com/ or a local Facebook group. Reach out to neighbours- maybe they can help. Hopefully you’ll get through this and find a solution. I’m sending so much love. xxx Nicky

[Doglover1410]

so sorry to hear this. Am also available to help out with doggo if you are anywhere near me. Please message if I can xx

[Euphori]

Hugs from Dorset

[candyapplegrey]

Oh Rosebine. Sorry to hear this. I had just watched an episode of Classic Casualty and a woman discovered her OC had spread to her brain (and lots of other places). I know it's only a drama but I was worried as have been having strange shooting pains in one part of my head.

I'd like to ask the Ovacome experts here whether brain scans are regularly done for OC patients.

Also getting agonising pain in my legs at night.

Good luck. Are you in London or elsewhere?

CAG xx

[Rosebine2 in reply to candyapplegrey]

Im in Kent.I had no idea till i went private for ENT consult as I had a balance problem and we thought it was inner ear infection. and they did a scanOnly had chest and thorax CT scans with Oncology

[Rosebine2 in reply to Rosebine2]

Well things going downhill. GP useless, thankfully managed to speak to oncologist who is tweaking my steroids upwards until I get t o his face to face, thats if I can get there.

Talking about having to go to London for radio ,not really possible for me if its even worth it.Anyone had radio for brain mets ?

[Rosebine2 in reply to Rosebine2]

sorry posted too early. Brain not working. consult isnt till 3rd Fb. Chemists not got myprescr. having to order in supplies !

[candyapplegrey in reply to Rosebine2]

I'm in Kent but close to London (Sidcup) and going to Guys at London Bridge. They seem to be completely reactive rather than proactive and said they would not even scan me annually while telling me my cancer was 80% likely to recur. I ended up finding the first recurrence myself.

I'm praying for you. Hugs. Anything I can do, let me know. I mean it. xx

[OvacomeSupport Partner My Ovacome Team in reply to candyapplegrey]

Hi there candyapplegrey

Thank you for your reply. We’re really sorry we missed this comment and to hear that you have been experiencing strange shooting pains in one part of your head - as well as agonising pain in your legs at night. Head and leg pain can be caused by a variety of reasons so it’s really important to speak with your GP or member of your clinical team about these changes. They should be able to offer you individualised advice considering your medical history – and suggest any appropriate investigations to identify the cause of the pain. If there’s anything we can do to help plan or prepare for any future appointments, please don’t hesitate to let us know.

Clinical decisions regarding imaging are made on an individual basis and depend on range of different factors, however brain scans are not a routine part of the diagnostic, treatment or follow-up recommendations for ovarian cancer.

I hope the cause of your pain can be identified soon so you can access any appropriate treatment. We’re here to support you so please do get in touch if there’s anything you would like to talk through or any further information we can provide. You can send us a message here on the forum, email us via [e-mail] or call our friendly support line on 0800 008 7054. All our support services are available Monday – Friday, 10am – 5pm.

Best wishes

Annie – Ovacome support

[candyapplegrey in reply to OvacomeSupport]

Thanks so much. I called Macmillan in the end and their advice was similar. I had a CT scan today and will see onco next week I think.

[Pianoplayer731021]

So sorry to see that your cancer has spread. Sending my best wishes to your team to treat this. My heart goes out to you, Donna hugs

[Dollie22]

I’m so sad to read this Rosebine. Would stereotactic radiotherapy be an option?

D