Mastized to brain

[Cebacob]

Hi - I was diagnosed with Ovarian cancer in 2018 - this is my 3rd reoccurrence.... it is now in my liver, lungs, and now brain ... anyone else fighting this tough situation????

[OvacomeSupport Partner My Ovacome Team]

Hello Cebacob

Thank you for your post, I'm sure the forum members will respond to you soon with their kind words. I just wanted to add that if there is any information or support you need, please do get in touch with us either via the forum, email [e-mail] or call [phone]am-5pm UK time.

I can see you are in Canada, I have found this Canadian site for ovarian cancer which may be helpful: ovariancanada.org/Living-wi...

I hope this is helpful.

Best wishes

Anna

Ovacome Support

[Realistic in reply to OvacomeSupport]

I am new to this site, and find the warmth help and advice invaluable. It helps to know what to do next really. Find these telephone consultations frustrating that you feel the clocks ticking . Especially when you have advanced late stage OC cancer l try to stay positive but sometimes l have so may questions to ask and feel at times very frustrated l stay positive but sometimes find it really hard to paint a face on to everyone

[OvacomeSupport Partner My Ovacome Team in reply to Realistic]

Hello Realistic

Please do get in touch with us if it would help to talk anything through. We can help you plan for consultations and we are here to support you at any time including when you are feeling less positive.

Best wishes

Anna

Ovacome Support

[Realistic in reply to OvacomeSupport]

Thank you so much, they have told me that l have a lymph node that they are watching they did this with me 2 years ago and last year took it out and it was cancerous and har spread. I would really like to know why they dont take this out. At the moment l feel we are all being neglected with this covid situation l could be wrong but nothing ever gets done this situation with telephone consultations gets me nowhere but feeling frustrated.

Id love some advice please, I'm not prepared to ever give up.

[OvacomeSupport Partner My Ovacome Team in reply to Realistic]

Hello Realistic

I'm sorry you're having a worrying time regarding the lymph node. You can always ask your team to go through with you again why they are suggesting watch and wait for now. All treatment decisions are made on an individual basis so they can talk you through why they would not operate at present.

You can also ask for a second opinion if you would like a specialist review of your medical history including imaging of the node, to see if another team would suggest a different approach.

There is information on asking for a second opinion on this post here: healthunlocked.com/ovacome/...

I hope this is useful. Please do get in touch if there is anything we can help with.

Best wishes

Anna

[Mptelesca in reply to Realistic]

I feel the same way, Realistic. When I had my Virtual visit with my Onc, I felt so far away. he was wearing his mask and so was the nurse beside him. I couldn't see their smiles so I felt like I was talking to a wall. They are truly a caring and passionate team,but, I got nothing out of the virtual visit. Next month I am going in person.

I think little by little, we will get back to the human touch and feelings. Even shopping in the grocery store has become pretty robotic and impersonal.

Please keep us posted and I will do the same. I know we will get through this. Virtual hugs to you. XOX

Marisa

[Realistic in reply to Mptelesca]

Thank Marisa, it’s good to know lm not on my own l just get a phone calls and get asked how l am , but really that’s useless with me l never really feel ill except after an operation and that’s the anaesthetic.Find it so frustrating but l will keep positive and hope even though we’re on lockdown yet again for another 6 months Please NHS don’t put us on the back burner again see us check us we’ve all come through so much, but need to be seen and looked at

Please get back to our proper consultations. Virtual hugs to you all out there take care & stay safe xxx

[Mptelesca in reply to Realistic]

You are a strong woman. I never really got that sickly after chemo. Just felt beaten up for a couple of days. Now, on the Parp....I'm still not feeling horrible, but, I tell people I'm feeling great even when I really don't. I work through it as , I'm sure, you do as well. This is why sometimes our onc team is satisfied with just seeing us for a few minutes since they assume all is well.

Hang in there. Stay strong, lady!!!

XOX

Marisa

[Cebacob in reply to Mptelesca]

Thank you ... I try but it’s such a scary battle knowing it’s now in my brain ... waiting to hear from the radiation oncologist to see if they are willing to do anything... that’s our prayer now that they are at least willing to try things for me ...

[Realistic in reply to Cebacob]

I’m going to church on Saturday with my daughter in law and l will say a pray for you all, don’t get me wrong lm not religious but l do believe. And if it makes you feel better then do it and it has been awhile . Please take care and try to stay positive l know it nots always easy, but put your makeup on and do your best each day, we can do it can’t we. Love & hugs SheilaF

[Mptelesca in reply to Cebacob]

I will keep you in my prayers. I know this is scary. Just know that you are surrounded by loving and supportive ladies here. Please keep posting with updates if you can. Sending hugs and positive energy.

[Tenacious66]

My OC has spread, but not to my brain. Please know my thoughts and prayers are being sent your way. Stay strong and we are all here to support you! ❤️

[Floss74]

Hello, we were in exactly your position in January this year. Here's a long post but I was desperate for any info at that time. My mum's first recurrence is in her brain, but there is no disease anywhere else. This is/was quite rare. However, the oncologist (and someone on here I think) has said they are starting to see it more - because treatments in general have improved and ladies are living longer with this sneaky disease. I always remember in the early days how many people mentioned treating OC as a chronic illness...

Our hospital is feeding into a study, possibly London with a consultant called Marion Hall, or similar, apologies I can't exactly remember. I took comfort that if they are seeing more and studying then they will pay attention and hopefully throw more at it!!

Anyway - treatment. My mum's mets were quite widespread. They want her on steroids a lot to keep the swelling from pressure down and she hates them in terms of how they make her feel and look. However I really see symptoms improve when she takes them - it's easier to see what is a mets side effect than a swelling side effect.

However, she also ended up with a compressed disk and fractures throughout all this - back pain more debilitating than the cancer tbh. Steroids can contribute to bone weakness so ask them to keep an eye on your bones; she takes vitamin D now.

We were offered radiation first - stereotactic was our hope, but the Mets were too big and in awkward places so she had whole brain radiation in March. It's tiring, but doable and the improvements are a slow burn. She lost her hair but it's growing back nice and fluffy now and she picked up from the fatigue.

The radiation gave us a 50% reduction but they are growing again. She has now been started back on chemo (carbo/caelyx) and we are hoping for Rucaparib at the end of the 6 sessions. This is preferred to Niraparib because of covid I believe - less exposure for tests maybe?

In herself she's more tired than I've seen for a while but with the appetite of a horse so I'm trying plenty of healthy Mediterranean eating with treats on demand. She managed a 1 hour walk last night and fresh air is a great medicine.

So, a rambling post but I hope it makes you feel that you're not alone and there are still options. Please let us know how you get on. I quote things from this forum at every single appointment we go to. It's been such a help.

Take care x

[Cebacob in reply to Floss74]

Thank you so much for taking the time to write back to me and give me some encouragement. My family and I have been reeling from this news as the doctors have been more on the negative side. We live in Canada - I think they tend to be that here. I want to keep fighting and trying things ... so this gives me some hope. Thank you for making me feel that I am not alone because Brain cancer sure makes you feel that way. Blessings to you!

[govanhill]

Hi

I have brain mets which are also wide spread. Was diagnosed in 2007

I have had several rounds of chemo for recurrences including 2 trials. I have been on Rucaparib since July 2019 with not a lot of side effects. I also take a small dose of Dexamethazone every day. I had a scan 4 weeks ago so am just waiting to hear results. Due to Covid having phone appointments with the Consultant

Keeping my fingers crossed

Moragx

[Cebacob in reply to govanhill]

Thank you so much for your encouragement .... it means so much to me that you would take time to encourage me with a little bit of hope. The doctors I find are always on the negative side. We live in Canada.

[Realistic in reply to Cebacob]

Love & Hugs its hard and this covid as made it even worse as far as getting treatments. Dont like these telephone consultations, just dont think they work. Keep positive xxx

[Realistic in reply to govanhill]

Good luck for great results, SheilaF

[govanhill in reply to Realistic]

Got my results on Monday from my Consultant. Abdominal calcification has gone brain mets have reduced and the pulmonary embolism I had has gone😃 To carry on with Rucaparib which was couriered out to me today

Moragx

[Realistic in reply to govanhill]

Fantastic all positive news that’s what we all need. Love & hugs sent your way xxSheilaF

[govanhill in reply to Realistic]

Thankyou x

[Stobie]

Sending you love and prayers xx

[Guds]

My thoughts r with you ... have faith there will be solution ... Luv n Hugs

[Lindaura]

This is terrible news! The liver is bad enough and now in your brain!

What is the plan?

As you know, my little family left no stone unturned researching the best experts to get a second opinion.

It’s not too expensive for a private consult and they definitely took me seriously.

Let me know your plans...

And how are you feeling?

Wishing you all the best,

Laura