Help and advice please? I'm new here!

Hi Ladies,

This is my first post on this site although I have been reading a lot of your inspirational posts since March when my lovely sister was diagnosed, initially with Ovarian cancer but then with stage IV (A)CUP - (cancer of unknown primary) but treated likely Ovarian. She has been very poorly and was diagnosed as terminal with a prognosis of 18 months after being admitted with constant vomiting. She had 17 litres of ascites fluid drained in two sessions and they did eventually manage to get the vomiting under control with an NG tube.

Because she was so poorly after initially telling her that they would only start treatment once she was stronger, they had an MDT meeting where they decided to go ahead and give her 1st chemo as an inpatient. It was due to her age of 56 & previous health and quality of life etc as a much loved daughter, mother, sister and nana.

The chemo regime has been Carboplatin, Paclitaxel and Bevacizumab every 3 weeks. She has been at home for 5 weeks now but has been quite poorly throughout with only a couple of days where she felt slightly back to normal although she has tried to stay positive and fight it. She has required blood transfusions and her platelet count has been very low. She also has a DVT at the moment. She had a scan last week and has just come back from meeting with her Oncologist at Leicester Royal Infirmary. We were expecting to be told that there would either be a 4th chemo or a date for surgery to remove any tumours seen. We were shell shocked to be told that the scan has not shown any shrinkage of the pelvic adenocarcinoma so the chemo was not working and surgery is not an option. It is now a matter of weeks, possibly months and he advised her to take out any pension or savings she has and enjoy the little time she has left.

Any advice would be greatly appreciated. My first instinct is to get a second opinion - not to give false hope but I am very much aware that different specialists have different ideas and beliefs in the treatment of cancers. If we go for a second opinion how do we do this and how do we decide where to go? Will it affect her treatment from the specialists here in her home town?

Thank you in advance

Kathryn

12 Replies

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  • Hi Kathryn I am so sorry that your sister is in this position..very similar to me when first diagnosed summer 2015. I was stage 4 and had 4 chemo before surgery then 2 more by which time I was disease free. I had a very good response to chemo. Everyone is different and there are some lovely ladies on here who didn't do so well on their first round of treatment but my point is that there is every reason to get a second opinion. Your sister can ask her GP to be sent to the Christie or Royal Marsden...they are the centres of excellence. It is a long way to go but at least she will know she has seen the best the UK has to offer.

    All the best to you and her xx Lyndy

  • Thank you Lynda, we will look into that second opinion as soon as possible. At least if they say the same thing then there won't be any 'what ifs' or 'maybes' xx

  • Hi lovely and welcome,

    What a s**te hand to be dealt!

    I would advise a 2nd opinion as a 1st thing there are other ladies on here who have suggested someone in London I will privately message you a link apparently she's the best.

    She is an individual not a number and that is key to remember I'll say it to everyone DOCTORS ONLY KNOW WHAT THEY READ OFF SCREENS AND FROM BOOKS!

    Please don't consult Dr Google he's NO help.

    All the ladies on this site are amazing and will probably be able to give you more advice xxx

  • I think your first instinct is the correct one. Ask for a second opinion. If you phone the Ovacome nurse on here tomorrow she will advise you regarding the procedure. There's no need to be worried that it will affect your sister's current treatment. If the second opinion is the same, then at least you will have confidence in the current diagnosis and prognosis. I can understand what you mean when you say about giving false hope, but I suspect you would be unhappy if you didn't try.

    Wishing your sister all the best. Her age and her previous good health are strong points for her.

  • Many thanks for that. I'll ring the nurse in the morning for advice. We need to explore every avenue possible. Xx

  • - there are a number of excellent booklets by Target Ovarian Cancer for all the different situations of women with Ovarian Cancer. You & your sister may find them very useful- you can download or order a paper copy from their website. Best wishes, Sx

  • I would go for a second opinion, sometimes it does work out to your advantage in this case your sisters advantage. It is a shock to get but ask her gp for another referral then you can decide what is the best way forward/

  • Thank you all for taking the time to reply. I am going to get the ball rolling this morning with talking to her local nurse specialist to request copies of her scans & notes & a referral for a second opinion as soon as possible as time is not on our side. X

  • Hello Kathryn

    I'm sorry to hear your sister is having such a tough time and that she and your family are feeling shell-shocked at the moment.

    On the right hand side of the screen there is a pinned post regarding second opinions which you may find helpful.

    I also wanted to let you know about CUP Foundation-Jo's Friends which is a charity providing support and information for anyone affected by cancer of unknown primary. Their website is at the following link: cupfoundjo.org/

    Please do give me a ring on 0800 008 7054 if you would like to talk anything through. I am here Mon-Fri 10am-5pm.

    Best wishes

    Anna

    Support Service Manager

  • I was very ill when I was first diagnosed but improved gradually and that was in December 2010. You'll find she starts to get her strength back soo.

  • What a traumatic day for you all, I think you need to ask for a second opinion, it may not change the outcome but at least you will have covered all the bases. A second opinion will not affect any treatment currently being offered so ask for one, you've nothing to lose and different consultants have different ideas. Sending you all best possible wishes and love ❤️Xx Jane

  • Hi Jane, thank you so much. I have spoken to the nurse specialist this morning and requested copies of the scans. She is arranging for them to be put on a disc. She spoke to the Oncologist for me and he is going to refer to the a Royal Marsden for a second opinion. After the appointment with the doctor yesterday, my sister and mum were just left to come away with no answers about what happens now, which was pretty poor. There was no nurse in the consultation with them & I would have thought that for such awful news there should have been some aftercare. We are not getting our hopes up but just need to know that there was nothing else that could've been done. My poor sister is just so despondent today - I just don't know what to say to her. X

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