Hi ladies I'm just posting to try and get some idea of your thoughts on my recent situation. I've just been informed that i have had a recurrence in the right iliac fossa and the cecum. They are still quite small(2cm) so I was referred from the Christie back to the surgeon to discuss surgery and then followed by chemotherapy. I was shocked and upset but thought I have done it once I can do it again. However during my consultation with the surgeon he said I have a big decision to make as its a massive operation and it's not curative. I could go through all that and it could come back somewhere else in 6 months. I feel I need more info from the Christie about just going down the chemo route so I'm going to arrange an appt with them. He has booked my surgery for the 13th April but said I could cancel at anytime if I decided to just do chemo. He wouldn't tell me one way or the other he said it had to be my decision. I would really appreciate your thoughts on seeking a second opinion from my surgeon who did my original op as I think he might have a different approach but as they are both from the same hospita I don't know if it might be awkward. Many thanks xx
Second Opinion: Hi ladies I'm just posting to try... - My Ovacome
Second Opinion
I think out is always better than in and maybe the opinion of a different surgeon is the key. My recurrence was in my pelvis which also attached to part of my bowel. No guarantees. My surgeon nearly gave up as deeper than anticipated despite different scans.
My last scan showed NED with no evidence of residual tissue or disease. Chemo concerns me. I'd pick surgery every time but with a positive surgeon not a half committed one
LA xx
Sue- I am so sorry to hear of your reoccurrence. Please do not think twice about getting a second opinion. This decision is left in your hands and its only natural you want to get another opinion before making it. On top of that, a different surgeon may be more positive. I encorage you to talk to however many people necessary for you decide what is best for you.
I wish you well whichever path you choose!
🌸🌼🌺🌸🌼🌺
Hi, I had a recurrence last June. It had come back between my liver and kidney and also in my neck. They said they wouldn't operate so I completed 6 rounds of carboplatin and paclitaxel and I am now self funding avastin and at the moment I am NED. When I asked why they wouldn't operate they told me it was too big an operation to get over and they know it will come back. But I'm doing okay again. Hope this might help.
Val. X
Thanks for your reply it's not fair that you have to self fund Avastin why wouldn't they give it you in the NHS
hi Susue, well its your life not the consultants so you have to do what is best for you. The positive side is that since both surgeons are in the one hospitals, your records should be easily available if you wish to go for a second opinion. I wish you well in making your decision and go with your gut
Hi there. When my OC returned (3C), the surgeon who did my 2 x operations first time around, told me it was now inoperable. The chemo had fought it off well the first time. It was now in my lymph system and had spread to a breast & was on my liver too. I was, needless to say, exceedingly worried. My daughter had bought us tickets to see The Eagles in a few months from then and I wondered if I'd survive long enough to see them ! I went onto Caelyx/carbo/Avastin, with avastin continuing as maintenance after. I've been in this 2nd remission for 20 months. I'm fit & well. I don't know the words you've used for the places your cancer is growing, I can only tell you what happened to me. I can't advise you on what to do, I can only tell you that chemo worked for me - twice. Good luck. Pauline.
Thank you so much for your reply Pauline. I've got a consultation tomorrow to discuss chemo v surgery as I woukd like to know what data they have available. As mentioned in another post Avastin is used as a maintenance chemo but unfortunately it has to be self funded. Best wishes and may you continue to stay well xx
Hi I think I might have a different angle on this, if you are going to the effort of asking for a second opinion, why don the you see if you can find the best medical oncologist for your type or surgeon. You can get referrals out of your area. The Christie and the marsden are closely linked. UCL is a volume centre for ovarian centre from my Christie oncologist told me, so surgeons and oncologists there will have plenty of relevant experience and insight.
When I was looking at my Debulking surgery I was referred by several sources (medical) that Christina fotopoulou is the top surgeon in the uk. She trained abroad so have a different perspective on things, she has an awesome reputation. She is deemed aggressive by the establishment but she is skilled. She is straight talking yet compassionate and a busy lady. She favours surgery so has some bias but surgeons who are confident in what they do are what you need. She will give you things straight - so you need to know that you are ready for that.
In the end I didn't have surgery with her but would have. I remain in touch and she gave me advice when I needed an opinion about something else. I will consult her when I recur an despecially if I'm told something is inoperable by christies. I think she may be one of the surgeons who might try and succeed where others don't. I don't know this but that's my feeling.
She is based at the Hammersmith Hospital. I think you are entitled to an NHS referral. I feel concerned that I've given my opinion on her. I don't want to particularly sway you to her, you must do you own checks. Ive only have cos sometimes we need people to give us options and my recommendations to her were unbiased and off the record medic to medic, one said to my cousin, if I had this, this is who I would go to...it's also why I tell you that the Christie could have a reticence becuase she is her own person and doesn't always toe the establishment line.
Hope this helps.
This is really interesting as she has come out top of all recommendations and opinions I had. I have been referred to her and am seeing her on a Monday..thank you.
That's wonderful. Good luck. Let me know how you get on. X
Nicky - how are you? - really keen to know how you got on. Rue x
Hi Rue I am in bed at the Hammersmith. I am awaiting my big surgery tomorrow morning. I am very nervous as it is quite a large operation. It's been a busy day because this is been a film crew filming to those special today. I met Christina again this evening to run through the procedures for tomorrow. How are you doing? Thank you so much for your email x
Morning - I echo everything you have said. I sought a second opinion (I wont even go into how the NHS treated me!) - I was lucky enough to be seen by Prof Christina Fotopoulou at Hammersmith. She is phenomenal - she is world renowned in this field and incredibly compassionate and to the point. No pussy footing around. She did my debulking surgery - it was a complete mess when she opened me up, and what should of been an 'easy' TAH had complications - she removed my tumor intact!!! - I have been told since, how difficult that was. My recovery was text book, and there were no issues. She met with me and asked me to trust her with who she recommended as the oncologist for me - I did. Absolutely no complaints.....The team around me could not be any better....
I could go on and on.....but I have had first hand experience, and what Agility has said, is spot on.
Best wishes, Rue x
Thank you so much for your reply it's certainly food for thought xx
My oncologist recently suggested further surgery be considered for my OC, as chemo was no longer working. My previous surgeon disagreed, was unwilling to consider it. I was asked if I would like a 2nd opinion. I was feeling daunted by the whole thing, as I was told it was risky, but decided to say yes to asking for another opinion. The onc contacted a surgeon at another hospital, who agreed to see me, & I received an appointment. He agreed to operate if I wanted him to. I decided to go ahead, & am now recovering. Di
I am sorry you are faced with such a difficult decision but would definately ask for a second opinion-you should not feel awkward about this-it is your health. Wishing you the very best, Wendy
Hi SuSue,
I am also under the Christie. I am low grade 3 b. I asked abt. possibility of surgery and was told no. I can't really remember the reasons given as I was new to this game and didn't understand the terminology, etc. Please keep us updated re. your discussions and decisions as I would like to discuss options again.
Best wishes.
Hi there
Just been to discuss my options at the Christie and they said it's very few ladies that are offered this operation as its isolated where it's reoccured and not scattered about. I have to have a chest ct scan but hopefully it will be ok. I am swaying more towards surgery as i think it would probably give me a better chance xx
It's a really hard to know what to do.
My understanding is the jury's out as to whether or not second line surgery is beneficial. There's a study which hasn't reported yet. Like Lily Anne, I agree it FEELS better to have it out, if that's possible. But having had second line surgery and then had complications and then chemo afterwards it still recurred again.
I think if I had known then what I know now, I wouldn't have gone ahead with it. Every surgery also increases our risks of adhesions. A lukewarm surgeon may just be a realistic one?
Getting a second opinion sounds a great idea.
Good luck with it all. x
They should be ok with you getting a second opinion. If he's saying it's your decision it sounds as though they are leaving it up to you, so why not? The oncologists I see seem to be doing this more, ie saying it's up to me.
Hi SuSue, Do get a second opinion I did and still went back to the first she was totally ok with that. Have you also seen a oncologist maybe surgery is not the best way, I'm on my 4line treatment the tumor is back in the same spot, I did ask if surgery is the way to go,my oncologist said no she would prefer to go chemo as this would also mop up any spotting.
I hope you find the right path for yourself best wishes Lorraine xxx
Hi Sue, the best 2 second opinions I got were both from Hammersmith. Prof Hani Gabra and his colleague Jonathan Krell. They are both also specialists in research trials and new unpublished research. You can also see Jonathan Krell at Harley Street at the LOC. or at Imperial, part of Hammersmith. imperial.nhs.uk/consultant-...
Or the LOC: theloc.com/consultants/dr-j...
You can google it. It decided on a fast track private appointment. It was the best money I ever spent and am now being referred back to NHS by them both and to see Christina Fotopoulou at Hammersmith. If you pm me I will give you her secretary's details. You are entitled to an opinion elsewhere and for me it has been a deciding factor. At every stage for me. The lady above has summed up what I would say. I think Christina is the best surgeon and my 2 best recommendations for ovarian Oncologists are above. I hope that helps and let me know what you decide . Nicky xx
Hi Nicky - Sorry this is an old post I know but it's just come up in a search. I'm just at the start of a journey and already my head is saying 'if there is someone who is world renowned at this why wouldn't you try and see her?' I'm wondering would it be possible for me to ask to be referred to her when all I have a problem with so far is an 8 week wait for a hysterectomy? Until then though I don't even really know what I'm faced with, nor do I know 100% that it's definitely cancerous.
Hello, yes it should be possible to be referred to her. Your GP could do it or you can contact Dr Jon Krell who is also in her team. I saw him privately first at his clinic (for speed) and then was referred to the NHS. If you need help, please do PM me/ I’m always happy for a natter. xxx
Thanks so much for all your info. I had a long chat with a lovely McMillan nurse who I got know during my first surgery and have decided to go ahead with surgery. Thanks to everyone for all your support xx
Hi, I will reply to Agility s well as yourself. My sister was/is under Christie’s. They said she was inoperable so I went for a second opinion/referral to Christina Fotopoulou in London. She is one of the best for operations. I got in touch with her secretary. My sister was accepted under the NHS. Christie’s sent her information over. We had the MDT outcome within two weeks. Unfortunately she was of the same decision which we always knew was a possibility. Her treatment then continued at Christie’s. It felt really awkward to do the referral because Christie’s is unbelievable but the staff at Christie’s reassured us that we needed to do what we needed to do and that a lot of people asked for referrals. They certainly didn’t feel insulted and her care after was second to none.
Do everything that you feel you need to do now. Don’t ever have the regrets after.
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