My Ovacome
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Spread of ovarian cancer to the Brain

Morning lovely ladies. I posted not too long about my mum. She was diagnosed with stage 3c ovarian cancer back in 2014. She had 3 chemo sections to shrink the tumor and then a debulking surgery. The consultant got all the cancer and the biopsy that followed was confirmed as dead cells. She remained diseased free for a year but she started having bowel issues and the Go referred her to Gastro doctor when he did a CT Colonoscopy and found disease in the liver and lungs. He referred her back to her oncology team who suggested more chemo. Meanwhile her ca125 remains up to now at 3. The oncologist was baffled because she said my mum's pattern of spread is unusual for ovarian cancer. She mentioned testing her tumour for mutation but said it will cost £700 so she didn't do it. The stared her on chemo. Mid cycle chemo, she had a ct scan which suggested shrinkage of all tumour. They suggested she continues and finish the remaining 3 sections. After the last section, she complained of headaches and we thought it was side effects. She went to see her oncologist and at the waiting room started vomiting. She was admitted and scan done which showed a spot on the brain. I have read and read and every article suggest ovarian cancer never spreads to the brain. I am just wondering if they got the site of the primary cancer wrong in the first place. Could it have started from somewhere else and spread to the ovaries? The doctors are as confused as us. Thank you all for taking the time to read my lengthy message.

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Hi lovely,

Doctors only know statistics for other patients not what each individual person's body can do. It is always possible for anything to get from A to B, at the same time it's also possible it started elsewhere I would question with the oncologist team xxx

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Thank you so much for your quick response. I will ask more questions and hopefully will get some answers. Wish you all the best

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Hi Cilla

I'm so sorry that your mum is going through this and having such a rough time. Some time ago I had similar symptoms to your mum albeit the main issue (aside from headaches) was dizziness and loss of balance and I had to have both an MRI and CT scan within minutes of each other (in fact they wheeled me on a trolley from one scanner to the next) as my Consultant suspected my OC had spread to my brain. In my case it turned out not to be but I was told that yes OC can spread to the brain although I believe it's rare. I wish your mum well, sending you both hugs. Kathy xxx

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Thank you so much. I read its extremely rare. We are just baffled at the rate everything is spreading. She is also BRCA negative. Thank you and wish you all the best with everything

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Hi Kathy

sorry to but in on this post but I too am experiencing dizziness I am currently on Avastin and the doctors have said it could be fatigue can I ask if you was on Avastin at the time you experienced the dizzy spells?

Thanks

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Hi Alison. No It was several years after completing Avastin, when I was on cisplatin for my first recurrence (I had had a bad reaction to Carbo so changed to cisplatin). I get dizzy now fairly often but that's due to my blood pressure dropping which has been caused by the Olaparib. xxx Kathy

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Hi Cilla, you have so many questions & not many answers which must be very stressful for you all.

Can they removed the cancer from your mum's head? Or will it be more chemo? Can they not take a little sample to see if its oc?

Like you have already said where has it started from the ovaries or some where else. If the doctors can work this out it would help you a lot.

The fact mum has a low ca 125 makes it very puzzling. I don't know why that's so low. Just more question that need to be answers.

I hope this can be sorted out soon please keep us up dated take care Cindyxx

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Thank you for your reply. Yeah the low ca125 is very baffling. We are waiting for them to run more test and see what they come up with. Best regards.

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Hi Cilla ... I wonder how high your mum's CA125 was at diagnosis? 20% of women have a normal reading at diagnosis but can have doubling of the figures within that. So, for example, a person can be 15 at diagnosis then 7 afterwards. A move back to 15 in the future would probably be significant if it's a trend.

I think your mum has probably been diagnosed correctly. Lab staff look for patterns under the microscope which is how Ovarian is confirmed.

It's not unknown for Ovarian to move to the brain but it's very rare. It's worth saying, I think that chemo reaches every cell no matter where it is. The other thing is that a confirmation of spread can only be guessed at. The mark may not be Ovarian at all but a benign lesion.

This must be very hard for you all.

Sending hugs

Sue xx

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Thanks Sue. Her ca125 at diagnosis was 195. It has stayed at 3 after surgery and chemo. Even with the spread, it has never gone up.

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Sorry to hear about your mum. I have just been checked out by the doctors because I was having dizzy spells, I asked about it spreading to the brain and I was also told that it is very unlikely as OC doesn't spread to the brain.

sorry I cant be of any real help, sending you best wishes xx

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Thank you. I read its extremely rare for it to go to the brain. So its still quite weird. Thank you and all the best

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Hi

What a difficult time for you all and as others have said it is so hard when there are so many unanswered questions .

I am in Avastin and had to miss a cycle as had headaches and some floaters in my right eye . Was checked out incase a bleed due to Avastin but also for spread to brain so although rare it is something they look out for . Turned out to not be connected and I have small lesions on brain connected to my migraines and apparently common in migraine sufferers and seen many years ago on an old scan before OC and told not to worry about .

Sending love and best wishes to your mum and hope you soon get some answers and a plan . Love Kim x

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Thank you Kim. They confirmed a spot on the brain but I don't know how they can be sure is cancer without biopsy. They are giving her steroid to reduce swelling and do radiotherapy on Monday. Thanks. Kind regard

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Hi cilla. There is a company that will check your blood for circulating tumor cells that shoukd have the same dna as the original tumor. In australia this company is called genostics. I think there is pne in germany called maintrac. It does cost but don't think it is as expensive as £700. I haven't done this yet myself but am seriuosly considering this as my ca125 is going back up after 2nd line treatment. They can also check what treatment would be the most successful. Have a look online

Marijke

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Thank you Marijke. The have now done a biopsy if the liver and will wait for the result. But the plan is to do radiation to the head or surgery. Still need this be decided

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Are you in the Uk? Why do YOU have to pay the £700? Confused

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Hi. They wanted to test the tumour for mutation because of the pattern of spread. As she was tested negative for genetic mutation. But that test was not available on the NHS. Kind regards

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I have read of a study that has suggested that ovarian cancer can spread to the brain like many cancers. The only reason that it is rare is because most ovarian cancer survivors don't live as long as some other cancer survivors. With the new treatments that are prolonging ovarian cancer patients it has given more chances of finding cancer reaching the brain. As many of the other ladies have said it is very rare. Unfortunately we seem to be damned what ever way we go. The study was available on line if I could have found it I would have posted it. I am sorry for your mother. I seem to be following a similar path as it has reached my lungs as well. Sharon

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I read something similar. But that happens more with long term survivors. She was diagnosed in 2014, so not that long. Her one seems to be moving at a speed. Wish you well. Regards

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Hi. I was diagnosed July 2015. Perforated bowel. Needed stoma no other surgery had chemo which worked well followed by 12 evastin treatments finished Oct 2016. Scans all clear. Feb 2017 had small stroke due to brain mets. I was told it was very unusual so had 6 treatments of carboplat. I have never felt unwell then or now. Awaining results of MRI / and ct scans which I will get tomorrow. Hopefully good news. Have always been positive but really scared I have wondered if initial diagnosis was correct. But oncologist assures me it was. I never has headaches. Just felt very tired. Don, t know if this helps stay positive wish you well xx

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Thank you. So sorry. Its such a rollercoaster isn't it? When you feel its getting better, then something else turns up. Hope you get good news on your scans. Wish you all the best

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