URGENT advice needed

We have just had devastating news that my wife’s oc has now spread to her lungs and liver. This is after nearly 6 months on Topotecan. Last year she was on Carboplatin which she also had after the cancer appeared in 2008 (early detection following ruptured cyst). The Carbo treatment stopped working towards the end of her treatment last September and her cancer marker was rising rapidly. At this point she was not offered any other treatment other than being given Tamoxifen and told to come back in January. During the next couple of months we tried to arrange a second opinion, but Jackie’s doctor seemed to have no idea how to fix this up, Jackie was just told to try and work things out with the oncologist at the city hospital. We never did get the second opinion but we did see another new doctor who decided on the Topotecan. After the first couple of cycles things seemed to be getting better and Jackie’s C125 was dropping all the time. It had dropped so much that she was told she would not receive the scan half way through the treatment (what a big mistake that was). The treatment finished on the 25th May. We were expecting a scan within a couple of weeks of this but the doctor never booked it (blamed it on a computer error), consequently Jackie did not get her scan until this Monday 18th June. The meeting took place yesterday 24th to reveal that the cancer has spread considerably. My questions are;

Where is the best place to get a second opinion

Can Jackie get Taxol/Avastin combo, she was told it wasn’t available

We have Spanish residential but have never registered for the Spanish health system,

If we do go on the system in Spain, how long would it be before the NHS find out,

We need to keep our options open.

Jackie has very little time left and I feel that we urgently need a second opinion, we haven’t really been given any options from Nottingham City Hospital.

Any advice would be greatly appreciated.

10 Replies

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  • hello i am so genuinely sorry to hear this news and this must be so devastating for you. As far as i am aware avastin is only available for 1st line treatment and not recurrence . All this needs to be discussed with specialist and as soon as possible .I would either ask Gp or present consultant for a referal for 2nd opinion.I am sorry but i dont know about the spanish system

    sending love

    Ally

  • Hi I am so sorry to hear this, you could give the Ovacome helpline a ring. Ruth Payne is very good with advice,this is a charity that does really help, and they are only too willing to ring you back the number is :- 08453710554....

    Best wishes x G x

  • Hello.

    So sorry to hear what has happened.

    If you are in the uk The Royal Marsden is a good place to get a 2nd opinion.Your GP or hospital consultant can refer you to them.When I got referred they saw me quickly(about 10 days later). If you are in Spain I don't know the procedure...sorry.

    Best wishes, Juliex

  • Thanks Julie, we had the RM at top of our list. Do you know the name of the consultant you were referred to ? It might help speed things up. Was he/she able to answer all your questions ? If you don't mind me asking, what was the consultation fee ?

    Thanks for your input

    Trevor

  • Hi Trevor.

    I saw Prof Gore at the RMH.He answered all my questions, is very nice and is involved in developing new treatments .I don't know about consultation fees as I am an NHS patient.

    Hope this helps

    Julie

  • Hi Trevor,

    I'm so sorry about this.

    I have recently had a second opinion.

    I got the name and number from Ovacome of a consultant in Leeds who was brilliant. I took the advice of another lady in an enquiry to this site (in terms of how to do it) and rang his secretary to ask if he would see me and get the contact numbers, then asked my GP to refer me, giving him the contact address and fax number.

    The secretary was great and said they would offer me an appointment within 2 weeks, which they did, and that was fine for me because it wasn't that urgent, but other ladies have posted on this site that they have got appointments within 2 days (I think from memory that may have been at the Royal Marsden, but you could check back by using the search facility).

    I don't know how it would work with the Spainish issue, but there wasn't any charge, it was all NHS funded.

    It seems there isn't much point asking for a second opinion within your area (I'm sure you wouldn't anyway) because the hospital will be part of a cancer network of hospitals which will all apply the same criteria and guidelines.

    I do hope you are able to see someone, it is so important for peace of mind to know you have done everything you can, even if, as it was for me, the answer is the same.

    Good luck

    Sue

  • Hi Trevor

    Try a lady on here called Spanishanna (she's on page 21 or 22 in the directory). She lives in Spain and has considerable experience of both the Spanish & English doctors & treatments. I'm sure she wouldn't mind you contacting her.

    Good luck, Jennie (ROCC)

  • So sorry to hear your upsetting news. I saw Professor Gore at the Royal Marsden for a second opinion. I think he's one of the top doctors in the country in terms of ovarain cancer....

    Good luck x

  • I would also recommend the Royal Marsden. I asked for a referral there and saw Professor Stan Kaye. He shares responsibility with Professor Martin Gore for the care of patients with gynaecological cancer. I have had excellent treatment and am on a parp inhibitor drug trial there now.

    Best wishes

    Sharon

  • I have also seen Professor Stan Kaye at the Royal Marsden on clinical trials great care and advice there.

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