Best ovarian cancer specialist- advice please!

Hi 80sBaby

Welcome to this community although I'm sorry to hear what has brought you here and what you and your mum and experiencing.

I'm afraid that I can't answer the question you're asking about how to get good treatment quickly but I think you are right in trying to get this, especially as your mother has ascites and I guess is likely to be in some discomfort.

When I was diagnosed with ovarian cancer in 2014 my health deteriorated rapidly, although everybody's experience is different.

My ovarian cancer was able to be diagnosed from a sample of the fluid, rather than a biopsy, and I'm wondering if you might want to enquire whether this is a possibility; it would probably be a quicker procedure than a biopsy and may be possible to be done sooner, although there's still the waiting needed before the results are available.

I requested a referral to the Marsden after I had started chemo as I believed there was a good chance I had a BRCA mutation (which I found out later was the case) and doctors at the Marsden were much better placed than my local team to advise me about my options; I saw Dr Susana Banerjee there.

I think the important thing is that your mother starts appropriate treatment (whether that's chemo first or surgery first) quickly.  If she is to have chemo first (as I did) then you will have a few weeks to decide on which surgeon she has, but if having surgery first is in her best interests then you will want to have this info soon.   

I think my NHS surgeon at Southampton was very skilled and he managed to remove all visible cancer, although I knew before I started that this would not be curative.

Keep an eye on your mother's symptoms and make sure they are addressed if they worsen, as the medical team can be focused on the diagnosis process and may not address things such as pain unless you make a fuss.  Be aware also that ovarian cancer can lead to dvt, so it is good if your mother can keep moving around and watch out for any symptoms - particularly any strange feelings in her legs.

I'm afraid all the waiting involved during the diagnosis process and waiting for treatment to start can be really difficult.

You might want to start a thread with a title asking for recommendations for private gynae oncologist surgeons to see if anyone else on the community has experiences they can share.  I guess the surgeons will be the same people who work in the NHS (as they are few and far between) but it might be possible to get an earlier appointment with them privately.  However, this would probably only be worthwhile if it's decided that your mother has surgery before chemo - which won't necessarily be the case.

Do keep on reaching out for support and take good care of yourself as well as your mother.

All good wishes

Hi there

Hi.

Wow oblivious! I'm in the same situation - a 5.5cm cyst part fluid, part solid was found accidentally on a scan for something else. A high ca125 confirmed that it was cancer & ive had a full hysterectomy prior to any testing of the cyst. I did ask about a biopsy but was told there was no point as it would need to come out anyway! Still waiting the pathology results xx

I was in the same situation as all of you last May. I was absolutely shocked and wanted everything to happen quickly as I was scared. It took 3 weeks to start chemo which I was told was quick but it felt far to long to me. However looking back, it was not. I can only advise to use this time to read about thinks you can do yourself to help your body prepare for what is coming. I changed my diet, spend as much time as I could outdoors walking as I could. 

I am now in remission after a long journey which has been tough but very interesting. 

Keep your spirits up and if I can be of any help along the way please let me know. I am a great believer that you can do a lot for yourself and help you body getting through this. 

Best wishes

Christine

I feel awful for you. A high CA 125 does not mean it is Cancer, several other benign things can cause this like fibroids and endometriosis.

I really hope the biopsy proves benign as much as that that might frustrate you that they did a hysterectomy when it might not be needed. However on the plus side my friends who had hysterectomies say life is a lot better without a womb.

Fingers crossed for the result you want.

Hi ChrisHo

Wow, sounds like you have had a rough ride. One of the reasons I like this site is because everyone is on the same page, ie are either going through their own battle with cancer or have a relative who is, and have total understanding of what each other is going/gone through. 

It’s wonderful news to hear you are in remission after your journey!! If you are happy to talk about it, would you mind sharing your journey and the highs and lows along the way? I’m trying to prepare myself for the months ahead, so to hear your journey would be a good insight xx

Hi miss Melody 

Of cause I am happy to share

I am a nurse and have during my career worked with cancer patients. In fact I did work in the same Unit, where I received my treatment ( Even many years ago, I still New some of the staff). It was difficult while I was waiting and I got very annoyed and scared before my first treatment. All staff including my consultant where great and very understanding, but it was my family and friends who helped me through it. I spend the days going out with you he doge my friends took it in turns to be with me and when I was home alone, I had my head in the computer or a book. I can highly recommend Kris Carr, she is a great writer and loved her books, she had stage 4 cancer and writes about her journey and one of the books is called the gravy sexy diet, I love it. 

I did all the surfing the net for prognoses, medical information and statistics, sometimes it’s not great knowing to much, but for me, I needed to do it. 

So far, what I can recommend try and stay positive eat well( avoid sugar and red meat, eat lots of veg and fruit) and keep you body as strong as possible. 

Best wishes

Hi 80sBaby, I have just recently (2 weeks ago) had a laparotomy to have a 24 x 18 x 13 cm malignant ovarian cyst removed which weighed approximately 4kgs. I am posting to recommend Mr Alan Farthing to you if you are looking for the best surgeon available. I was fortunate enough to have got treated from him after approaching him for a second opinion as the first surgeon i was consulted by was very much all doom and gloom and did not make me feel at ease one bit. The first surgeon would also most definitely have performed a hysterectomy on me as he advised if cancer was present during surgery a hysterectomy would be inevitable, whereas Mr Farthing took a far more explorative approach and was able to protect my fertility by only needing to remove the cyst and one ovary. Mr Farthing and his team made the whole experience much less traumatic then i had thought it would be and everything was done without delays and i cannot thank him or recommend him enough. Your mother will be in the best hands. Regarding chemotherapy, if being treated in London works for you i would recommend Dr Jon Krell. London unfortunately is not an option for me currently and i will be being treated elsewhere. I hope this helps you and wishing you and your mother all the best. If you need details on how to contact Mr Farthing i’d be happy to help.

Hi POC

My sister has just been diagnosed with ovarian. Could you please let me have the details of how to contact Dr Farthing.

Many thanks.