Need advice stage3b recurring ovarian cancer

[Trayd2]

Hi everyone I'm a little lost at the moment my mam is starting her 3rd cycle of treatment today for her ovarian cancer she had a total hysterectomy 2 and a half years ago where they found a tumour in her Fallopian tube that bust when they tried to remove it we had no idea it was even there she then under went 6months of carbo/taxol which really took a lot out of her hair loss, nueropathy which she still has anyway at the end of her treatment they gave her the all clear until 14 months later her ca125 started to rise and there was a barely visible tumour on her scan so on the 1st of Jan this year with a ca125 level of 365 she started gem carbo for 6 months but they had to reduce it as her bloods got so low but end the end of the 6 months her ca125 was 50 and no visible tumour so they said they would review in 3 months fast forward the 3 months to last Wednesday where I am devasated to say her bloods are back up ca125 of 254 and a tumour on the left side of her pelvis still barely visible though the doctor said he's all most certain if they opened her up there would be microscopic spread all in her omental tissue and that now all the can do is try give her quality of life with 3 months of Caelyx I asked how long does my mam have and he said hard to say maybe 12 months but everyone's different I asked could we go ahead and book a family holiday for my dads 60th in July next year and he said I wouldn't be booking anything for 10 months time the cancer is very active her bloods went up very quick no remission time I am so heartbroken my beautiful mother she's such a fighter she looks fantastic and feels fantastic walks twice a day and is so active up on ladders cleaning windows yesterday how can she be dying I'm an only child and just feel lost has anyone any experience with something similar do they get it wrong she's only 58 and I'm not ready to give up and either is she's she's starting caelyx today x

[Hidden]

hi Trayd2, I am sorry you have to join us here and that your Mum is unwell at the moment. It is great to see she has the spirit to fight this illness and long may it last. I am not sure where you are living but perhaps ye could get a second opinion. Would the Oncologist consider Radiotherapy, I had it for a small tumour and it worked. I have had a few recurrences but stable at the moment. So oncologists can be wrong. I think your next step is speak to your gp and see if he would give you a referral to another oncologist, it cant do any harm. If you are in UK you could ring the Ovacome Nurse or if in Ireland perhaps the Irish Cancer Society. I have a very good oncologist here in Cork Ireland and if you want to pm me I can give you more details. It is hard to take in and absorb when your Mum is so energetic. Perhaps the Caelyx would help or can he not try Gemzar. Just a few ideas to help you and sending you a big hug

[Trayd2 in reply to Hidden]

Thanks so much for your reply we are in Dublin they said radiotherapy isn't an option in this case to be honest I'm really looking into cannabis oil I think there's definitely something in it that can help or maybe I'm clutching at straws

[Hidden in reply to Trayd2]

So sorry to hear this, yes Cannabis oil is supposed to be helpful in Cancer and other illnesses. You could try adding Tumeric powder to curries or stews and perhaps use ginger root in juicing green veg and green apples, It has to be hard for you to accept the oncologist report. But Molly O has mentioned an oncologist in Dublin who seems to be very approachable. So Molly O would advise you on this if you would like to message her from the page

[Flamingobeef18]

I do not have any experience of what you are going through so cannot offer you any advice but I just wanted to express my sympathy and send you lots of love. Your Mum is lucky to have you and I am sure her positivity will stand you all in good stead.

This is a huge shock so you all need a bit of time to get your heads round it. But as the doctor says everyone is different and this disease is still in so many ways a puzzle. However you decide to move forward enjoy every moment you can to the max. Oh and go on that holiday now and with a bit of luck you will be doing another one next year as well!

Love Juliaxx

[IrishMollyO]

Hi there

I had a second opinion in St James just to set my mind at rest that the treatment I was getting was the best I could get. A friend gave me Dr O'Donnell,s name and I found her very approachable and very thorough. If you are already in Dublin your mothers oncologist will advise you what to do next if you decide to go that way. I'm not sure which hospital your mum is attending but you have a choice of hospitals in Dublin.

I am really sorry that your mum has been told such shocking news in what appears to be an insensitive manner. There are many stories on here of women being told that no more could be done and they are still posting here on this site.

What stage and grade is your mothers OC ? If you know that you will more than likely find someone here at the same stage who could help.

Mine is PPC high grade serous stage 3 which consists of microscopic spread of cells all over my pelvic area including the omentum. I was treated 5years ago with chemo only and remained disease free until this year. I am now on chemo for spread to my lymph nodes.. I remained with my original oncologist in the West and I remain hopeful.

I hope your mum can go forward with some hope and you are such a blessing to her. Take care

XXX

[IrishMollyO]

Sorry . I see the stage is in the heading ! I have just noticed now. Mine is stage 3c .

[Kez15]

Hi there,

I just wanted to add to the other lovely comments you've had in here. I'm really, really sorry to hear about the news you've received but want to reiterate the comments on here about not giving up.

I posted on here a few months ago because we had just been told my mum's cancer had come back after just 6 months clear. Her oncologist sounds similar to yours and actually said to my mum "don't ask me how long you have left, I don't know".

We took the advice offered on here, got a second opinion and moved to a different oncologist who is lovely. The diagnosis doesn't change but what these fab ladies and my mum say is that it's essential you have an oncologist who will fight with you. Mum is now on gem/carbo but her oncologist made it clear that when future occurances happen there is an arsenal of treatments they can try. So I would definitely get a second opinion but you will need to stay on this to get it to happen quickly, I got PALS involved and actually had test results emailed to me to speed things up.

Another piece of advice I wanted to share which was from my mums consultant. When he diagnosed her reoccurrence he said feeling well in yourself is a massive thing so cling to that, make the most of every day your mum is well and definitely get that holiday booked. This whole journey is draining for everyone, not just your mum, so take some time and enjoy every day together - that could be 12 months or as some ladies on here have shown, it could be 10 years!

I know exactly how you feel as I'm so close to my mum and will be devastated when the time comes but over time I've had to get my head around this cruel situation we are in and decided that this horrible disease is not going to take away any time we have together with worry and tears. Of course we all have bad days, but on the whole we've decided to live each day.

I do hope this helps to bring some comfort to you, if ever you want to talk daughter to daughter please get in touch. Your mum is lucky to have you in her corner, so keep fighting, enjoy your time together and definitely get that second opinion. Take care of yourself and your mum.

Kerry

XXXX

[Trayd2 in reply to Kez15]

Thank you everyone so much for your advice and support it means so much when I'm feeling so lost x

[Grace123]

Just wishing you, your mum and family all the very very best. Much love, Sundra xxx