Second opinion?

Hello everyone,

My mum was diagnosed with cancer in 2014....they were unsure if it was ovarian or ppc but they took everything out. It was stage 3. She had chemo and was free from it for about 7 months then chemo again, then another six months free then chemo.....carboplatin and caelyx. In the middle of this treatment she had a takotsubo which is a very rare heart condition known as broken heart syndrome....this was the second one after five years as she lost my step dad. She missed one months treatment but before this at the third treatment her results were platoing. But now after her fifth treatment (well she had the scan before this fifth treatment) they say the cancer has gone a bit more into the peritoneum. So Mum has to have a further six months treatment of taxol again and the consultant said that after this the NHS has nothing more but trials.....surely if the caelyx and carboplatin were helping and starting to Plato her results then it was starting to work?? I am not giving up on this. The scan shows nothing in her organs and when we saw it they said there was a thickening in the peritoneum....there were no calcification a to be seen though. Mum has been diagnosed with stage 3 PPC but we are not sure they know what they are talking about as at first they said it was ovarian. We will not give up. Can anyone else relate please?? Your comments would be very much appreciated xxxx

12 Replies

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  • Get a second opinion, it will ease your mind.

  • I have ppc stage four and was told it was treatable, so yes I would ask for a second opinion. xxx

  • Definitely get a second opinion. Call the nurse led freephone line on this site on Monday and talk it through with her too. Freephone number is 0800 008 7054. She can advise on how to get a second opinion.

    Take care and big hug for you and your mum

    Clare 💐

  • I was diagnosed sage 4 PPC in January 2014 and have had carbo/taxol, surgery, carbo/caelyx and now carbo/gem. PPC presents very like OC and is treated in a very similar way. Get a second opinion.

    Lynne

  • Definitely get a second opinion, I've just finished 5th line and have been told their are still lots of options for me.

    I had Caelyx (3rd line) and it wasn't doing what it should so they switched me to Topotecan and I had good results. We are all different and your mums treatment may vary from others and will depend on her own medical history but you'd be very surprised how treatment differs from unit to unit so it's always worth asking. My Onc sent me to The Christie at Manchester and they gave him suggestions as to other options available. I continued treatment at my own unit but I now have the option of going back to the Christie when they run out of ideas.

    L4W

  • Thank you lovely ladies. I very much appreciate your advice and I will certainly call the number you have given me Choski. Yes this is the 4th line after having taxol/carboplatin, cisplatin/gem, caelyx/cisplatin....now just taxol for 4th line and she said there are no more the NHS can give. We will not give up with this plus the hospital my Mum is at, Bedford, has a terrible reputation and I have put in a huge complaint about her getting a drain. I will certainly take you pr advice lovely ladies. Much love to you all, Louise xx

  • Ask to transfer to another hospital. Your GP will do this for you. Where in Bedford are you?

    LA

  • Hi lily-Anne, we are in Maulden, beds. I think we need to do something as this is not right x

  • I lived in Houghton Conquest for a while. I'd be tempted to be referred elsewhere

  • I was first diagnosed with ovarian,then changed to high grade serous carcinoma.Stage 3c.Then it was changed to primary peritaneal carcinomatosis stage 3c.They said because they don't know where it had originally started.PPC is treatable.They treat it the same as Ovarian.The chemo worked well for me .I have had one reoccurance . Did same chemo.Now 9 months stable again.Good luck.Hope you the right diagnosis soon.Ask guestions.Second opinion wouldn'the hurt.Lynn

  • My special person has finished 2nd lot of chemo since diagnosis 1st she had 6 carbo/taxol 3 of those with avastin after the 6th debulking surgery continued with the avastin then she had a recurrence in the summer and had 4 carbo/gem as her CA125 was 9.

    Please go and get a 2nd 3rd 4th 5th opinion as many as you can until you and your mum are satisfied as she knows her body best 😊 Xxx

  • Sorry lost my train of thought whilst writing this her onc has said there's still plenty of options for her and it's way down the line before she is on trials xxx

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