Hi, I do not usually post on this site, but I do read the postings and their wonderful responses.
I have stage 4, ovarian cancer. The tumours have now spread back onto the spleen, I have an appendix mass which remained after an appendicectomy failed to get it out. I believe the cancer has surrounded my only kidney, bowel and is in or near lump nodes.
My consultant has now said no to treatment, she will not consider radiotherapy due to the possibility of perforation the small bowel.
My question is how do you go about getting a second opinion? I am a fit 50year old and I wish to go down fighting. Any advice would be so appreciated from you wise ladies. Thank you.
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fionai
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I know others have found immense help and support with second opinion seeking from 'Ovacome'. Ring and speak to their advisor (0207 299 6654, I think).
Thank you for the advice, I had considered phoning the advice line, but have not phoned them before. Take care. Fiona.
Dear Fionai,
I am sorry that you are going through so much, there are many people on this site that have gone for a second opinion, I am sure they will be on soon to give you advise on how to go about this, neanwhile I am sending you my very best wishes love x G x
Thank you Gwyn, I will get that second opinion, before doing this posting, I was hesitating but I am now spurred on to do something about this. Take care, Fiona
Sorry to hear your news.
Everyone is entitled to a second opinion.I think referral can be made through your GP or consultant.
Thank you Anne. I guess I feel a little hesitant to ask my consultant as she has been so good up to last week and it cannot be easy for her. Take care, Fiona.
I am sorry to hear that your consultant has taken that decision. I'm sure Ovacome will help with advice on getting a second opinion. The Ovacome site is ovacome.org.uk The helpline number is 08453710554, I think it's 10 to 5 on Mon to Fri. Good luck with the
I'm really pleased you have posted because you'll get loads of support and great advice here. You don't say where you're based. NHS areas do differ a lot in what they offer and in particular what surgical expertise they have. My original NHS just wouldn't have had the expertise or the resources to perform any surgery on the type of presentation you describe.
My first response would be to ask your consultant for a second opinion. A lot of us look to Christies in Manchester or The Royal Marsden in London as these are the biggest specialist centres, though there are centres of excellence for ovarian cancer throughout England and Scotland. I agree with Anne that everyone has a right to a second opinion and your consultant will not take this personally.
Please do get a second opinion as soon as you can and then you'll be in a position to consider any options available. I recently relocated because the surgical and treatment options within my former NHS were limited for my type and presentation of cancer and whilst I had a good long remission after diagnosis and first treatment which naturally refers me to a number of clinical trials I had not been given the appropriate prescription of chemotherapy to refer me to subsequent trials. My local centre didn't have much in the way of clinical trials and refused to fund me to participate in clinical trials outside their area.
Good luck with your quest. Let's hope it's not a matter yet of 'going down fighting'. Let's hope you can fight to negotiate a good quality of life and a decent timeframe.
Please do keep in touch and let us know how you get on.
Annie, thank you for replying, I started off having my first operation privately, after surgery I opted to carry on through the NHS as it was nearer for me regarding having my chemo. I do have private health through Axa and had considered phoning their advice line. I only have one kidney, so I may not be considered for cancer trials, but I will certainly enquire. Take care. Fiona
Ok, you sound so beautiful. That is a sentence to touch my heart. Thank you.
However, back to the hard stuff!
Today I have done the following; spoken to my consultants secretary regarding where to go for a second opinion and spoken to a helpline. The wheels are set in motion and I now have my mojo back.
Can you get a referral to a major cancer center like M. D. Anderson or Sloan Kettering? Not sure where you live, but I would try to get an appointment here. My daughter was diagnosed with Stage IIIc ovarian cancer 7 years ago. Her world class oncologists at M. D. Anderson NEVER quit trying to find a treatment for her. She was diagnosed with her fourth recurrence in July and is trying to get a preapproved drug outside of a trial (because there are NO trials anywhere for which she qualifies). You can follow her on Facebook Andi's Army Community Page. I will keep you in my prayers. Definitely go for a second opinion and definitely get to a major cancer center.
Hi Kssloan, thank you for taking the time to reply. I live in the UK.
I did live in Houston and attended MD Anderson when I lived out there as I had Salivary Gland Carcinoma in 2006 and needed regular check ups during that time. I will enquire about other treatment centres here in the UK. Take care, Fiona.
Definitely go for a second opinion. What have you got to lose. Have you had any treatment so far apart from the appendecectomy?
I am 50 too and am on my 8th line of treatment. I had a stent fitted last week to prevent a tumour from blocking the urether between my kidney and my bladder. So, with the right team in place there could be a lot that can be done.
I got my GP to make the referral. But once you've decided who you want to see I'm sure your oncologist would make the referral as well.
Well, concerning treatment, I have had quite a few ops.
The last was to fit a Detail Anatomic Stent which bypasses the usual kidney to bladder route. I only have the one kidney which may prevent me being eligible for cancer trials. I am just not sure who to see concerning getting a second opinion. I do have private health through Axa, so I may contact their advice line.
Last week was the first time I had felt like my consultant had washed her hands of me, but I guess it cannot be easy for her as she feels that I am resistant to chemo.
Hi Barbara, I am glad I have given hope, I have only had 3 lines of treatment, but I am resistant to chemo. However, I will take all the encouragement from this site and go for it. Take care. Fiona.
Hi Kaz, I was diagnosed Feb 2011, it was stage 3c at that time. This has been a journey of discovery, the latest thing I have learnt is how much this site has helped me since out up my post. Thank you for taking the time to reply. Take care. Fiona.
I am in a similar position but don't have a very good oncologist to back me up, Ive been doing some reading up on CYBERKNIFE and although it might not be suitable it might be worth asking about.
Good Morning Sandy, thank you for the info regarding the cyber knife, I looked it up on the net and will look into this further as it looks like it is worth pursuing.
I cannot express just how much you are all helping me by responding to my post, I would like to say a big thank you to all of you brave ladies.
I do not rest as advised and take great delight in pushing the boundaries regarding what I should do, for once, it has become quite hard to do that. However, this week has given me renewed hope and fight after reading your replays to my post.
You should definitely get a second opinion. I don't believe anyone on this site intends to go down without a fight and we'll all be right behind you!!! Show them what you're made of!
Hi Annette, please read the reply to Andy, and thank you for taking the time to reply to me, I have tears in my eyes as you have all helped me get my Mojo back. Take care. Fiona.
I have little to add to what has already been said. I think the Ovacome advice line would be a good starting point to help you to decide how to proceed for a referral.
I have been spurned into action by all you wonderful people. Today I spoke to Axa, and spoke to my consultants secretary regarding where to go. I also looked up the Cyberknife that had been suggested. Today I feel hope and I am in a much better place than last night. Take care, Fiona.
Hi Fionai - I don't have any advice for you as I'm fairly new to all this, but just wanted to wish you the very best of luck - and keep that mojo going.
Hi Jill. Just the fact that you have replied helps, today I was spurred on by the sheer response on this site to my mail.
I have contacted my consultants secretary to get a name for a second opinion and spoken to a helpline. I just needed a boost to get me back up and running.
Are you new to the site due to being newly diagnosed?
Good for you, Fiona - so pleased you've taken such a positive step - onward and upward from now on.
I'm not newly diagnosed as I had my op in March, and joined this site about three months ago - however, compared to so many ladies on here who are extremely knowledgeable, I know very little and am learning something new all the time.
I'm sure you'll be very glad you joined - everyone is so kind, and always willing to offer advice and support when needed.
I am an ex nurse, sometimes this doesn't help as my knowledge is out of date.
How are you after your op, are you on chemo and if so, how is it going. The ladies on this site are knowledgeable as we have had to start to investigate things about this type of cancer as our journey progresses. I refuse to let this condition rule my life totally, in fact having it has taught me many things.
The one thing that has helped is having a McMillan counsellor, I see her every week, without her life would be much harder.
I have also found such encouragement from this site, it is the first time I have had to ask for advice, and boy, all you lovely ladies out there have helped me so much.
So today, I will drive extra fast on my mobility scooter and my dog will just have to grow longer legs!
I am just about to start the process of getting a second opinion. I live in Wales so it may be different.
I have spoken first to my oncologist who was very supportive and encouraging about me getting a second opinion which was a relieve. Each hospital has its own capabilities and as mine is. A small centre he felt i should look elsewhere. i have spoken to Christies and royal marsden who both do second opinions and have good reputations. You can ask your oncologist to refer you in England I would suggest speaking to their secretary. You can also do via gp. I had appointment for yesterday but my gp was ill so going to see about it next week.
I spoke to a nurse at Christies on oncology ward and she said they have a good surgeon and gave me names. At that hospital they operate with the different surgeons available ie bowel etc at the same time.
I will be asking my gp to refer me to named people which is why I rang the hospitals.
Another thing I have been looking at is trials. There is one starting soon for people who have been declined other treatment called metro BIBF low dose chemotherapy andBIBF 1120 phase II. This is on cancer research uk site.
I am no expert but have been researching recently. I was very concerned about going down this route as I am happy with my oncologist but you must do this. The ladies on this site and Ovacome helpline gave me the confidence to get on with it.
If I can give you more info on what I found please send a private message and I could email you. I could also let you know how I get on with my gp next week.
Hi Sharon, thank you for all the info. My consultant today is referring me to the Marsden. I will look in depth at the treatments that you have mentioned. Take care, Fiona.x
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