Well today I had my scan results. Just to recap, I’m stage 4 snd IDS was not attempted due to significant disease remaining in mesentry. I’ve had 6 rounds of chemo now and was hoping to have debulking at this stage. However my MDT, having looked at scan have said no. I was still responding to treatment but very slowly. I have consented to Avastin and Olaparib. Onc said I could ask for second opinion from Christina Fitapalou but she said surgery would be radical with no guarantees she will get it all. Plus the recommended treatment would have to be suspended whilst second opinion sought and that would delay securing Olaparib. I lost the plot at this stage but it all sounded logical. Has anyone else had a similar experience/outvome? I’m feeling very despondent atm .
My Onc has given me the ok to have a few days away in Spain visiting a friend before treatment starts. xx
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Beaver54
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I am sorry that you find yourself in this rather difficult place.
I think that you probably need to talk it through with a nurse specialist, someone who can help you navigate all the options.
You may have a CNS or you could call the Ovacome helpline and ask to speak to the nurse specialist.
If you are getting Olaparib does that mean you are BRCA +?
But if you are responding slowly to chemo might you also respond slowly to Olaparib?
Could they add further rounds of chemo to give you a chance to get the second opinion from CF?
If you don’t go for Olaparib this time and opt for surgery, will you get it after your next chemo?
It seems to me that you need someone to inject some hope at this stage and Christina Fotopolou is well known for doing that. It might be worth seeing her anyway.
no you don’t have to ask your oncologist. ours scoffed when we told them, yes scoffed. Terrible isn’t it.
We had to go via our gp. So our gp had to do the initial referral for the second opinion and once it was accepted, the new oncologist would request the paperwork from the old oncologist. Bit backwards getting the gp involved but that’s the process here in Hertfordshire.
We saw Dr Christina privately so she just asked for the latest scan and clinic letter which we had. We sent it on the Sunday evening and had an appointment on the phone Monday morning 8am!
Hi . I rang cf secretary first and a telephone consultation was arranged for following day. Following that I asked my Onc for a referral, which she has done. I’m just waiting for a clinic appointment now with cf. x
I think you should get the 2nd opinion with cf. Get the scans looked at, and like lyndy said I think you could get olaparib at a different stage then. Good luck x 🥰
I think you should go for the 2nd opinion of Christina you have nothing to loose. Just a word of advice, Christina will not operate if you have started chemotherapy she will want you to finish the treatment. I had a 2ns opinion from her a few years ago as no other hospital would take our my lymph nodes near my aorta deemed to be dangerous. When I mean no one I mean the Royal Marsden, Christies Manchester or my own surgeon whom is a good surgeon. I had another opinion from her and she said not easy but she thinks feasible. She successfully removed them. You have absolutely nothing to loose by getting her opinion. My opinion if she can't operate or get it all the cancer then no one in this country can. She is an amazing surgeon. Wishing you all the very best going forward x
I agree with the other ladies, do seek a second opinion. Christina Fotopoulou is an amazing surgeon and can give you hope. Shame on your consultant for trying to put you off! Hope you get some better news soon. Sending hugs!
I really do feel for you . Your experience so far almost mirrors my own at the start . I am stage 4b , diagnosed July 22 . I had 5 rounds of chemotherapy , followed by a laporoscopy to see if IDS was possible, I was told it wasn’t . I paid for a telephone consultation with Christina Fotopoulou , who said she would look at my scans , bloods etc. and then would need to meet me in person . She felt I was strong enough to cope with the operation , with the proviso that she would do an exploratory look , initially , and would continue to full surgery if she felt she would achieve a good out come . She also transferred my care to the NHS .
I had the op in Jan 23 , followed by 2 further rounds of chemo and began Olaparib and Avastin in the April .
I feel well now and my CA125 levels have continued to fall , going from 2900 last July to 11 now .
I felt as though I had been written off by my first hospital and that Christina has given me a new chance at life . As others have said , she is absolutely amazing , so I do urge you to get that 2nd opinion .
Thank you so much Karen. It’s a route I must take as soon as I get home. I’m so pleased to hear you are doing well now. The best decision for you. What did your op entail? Did you have mesenteric disease and was the whole process quick xx
I had a full hysterectomy, removal of the omentum and appendix, stripping of various areas and a bowel resection . I was told by Christina that I may need a stoma but fortunately that wasn’t necessary .
I believe the whole operation took between 8 and 9 hours . I was in hospital for a week
Wow that’s amazing . Thank you so much. I had a hysterectomy in 1995 but my ovaries were left in situ. Was the mesentry touched in any way ?
I have just taken the bull by the horns and just called CF secretsry. She is sending me a form and then CF calling me at 11 tomorrow. Can’t believe it’s so quick . Got quite emotional.
Hi , yes, the disease in the mesentery was the reason the first hospital deemed it too dangerous to operate ; it was “ stripped “as part of the subsequent operation
Wow. Thanks again. I am nervous obviously about making the right choice but from what you’ve said I think I have. It might turn out that she can’t do anything, but at least I will know then snd there will be no “what ifs” x
I had my telephone consultation with CF yesterday. She said that because I have had a partial response to treatment , I am eligible for surgery, as per the guidelines . She will operate on NHS, but is not able to do so until the end of November.. As in your case Karen she won’t continue with the operation if she feels she can’t achieve a good outcome. More waiting but hopefully it will be worth it.
Thank you all again for your encouragement and advice.
Bev that is indeed a positive outlook! She is an amazing surgeon and will undoubtedly do her best for you. I'm so pleased you went to her for an opinion. Sending you best wishes you going forward and for a successful outcome. All the very best. June xxxxl
Thank you June. ❤️ Im very emotional this morning for some reason. (I think it’s the kindness of everyone) Must get a grip 😁, but yes I’m sure Ive done the right thing xxx
That’s excellent news, Bev . You’re bound to feel emotional,, so many feelings will have been suppressed and now you’ve been given a way forward ,I know that’s how I felt
I’m so pleased that you went for that second opinion too and as everyone has said Christina is an exceptional surgeon and a wonderful human being , she will do her very best for you.
Thank you Karen. I’m so grateful to you all. I will keep you updated. Just need my Onc to send the NHS referral to CF snd then I can get a clinic appt and get the ball rolling xx
Hi all. Further update. I have my operation date on 10th Nov. CF can’t do op until 24th. Op is supposed to be performed within 6weeks of last chemo,so that would be 9 weeks if I chose CF. I have agreed to one of her team doing the op, a miss Bryan Stacey. I so hope I’ve done the right thing. xx
thank you Tealgirl17. I certainly intend to fight with everything I’ve got. My daughter got married august just gone ,when I was just over half way with my treatment. She is now pregnant with my first grandchild. I have really got something to fight for even more now 🙏🏻
That sounds really exciting and something to look forward to. My grandchildren were born right when I was diagnosed 17 years ago and I can't believe they're both off college next fall.you can do it. There are so many advances to fight the disease
How very special for you to have conquered this awful disease to be able to see your grandchildren grow up. 17 years is just amazing. I just hope and pray my journey echoes yours. I wish for you many more years disease free. Thank you for your message of hope x
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