Second Opinion Low Grade

Hi. It's awful when you feel like the people who are supposed to be looking after you are just not as interested as you want them to be! Have you tried the Marsden? My mum is there and has recently started a MEK inhibitor trial. The trial is not specifically for low grade ovarian and is more targeted to the mutation but apparently there has been some positive response in another patient.

Good luck with it all xx

I'm low grade/borderline too, and i will definitely get second opinion on treatment. Maybe you can too?

Hi Kerry

Are you still classed as borderline? Do they have stages for this?

I was diagnosed with stage 1C low grade 1 mOC and was advised by the RM to have the std carbo/taxol regime.

NICE guidelines state chemo at stage1C and above. I don’t think borderline comes within that remit but others may know better.

For my cancer and grade it is known to be up to 70% resistant but I thought that the other30% might make the difference and I had treatment even though my oncologist- whose real interest is breast cancer- suggested a watch and wait.

As the others have said- go for another opinion so you will feel more confident with decisions made.

Fay

I have a mixture of both, borderline and low grade. I was staged at grade 3a when I was first diagnosed. Opinions on what treatments to have vary so much don't they. Thanks Fay xx

Hi Kerry... I was wondering if your CA125 is being monitored? Xx

Hi Kerry ... I can see from your posts that your CA125 is being tracked.

I was diagnosed in 2011. Had chemo. I had widespread disease and my response to chemo was partial and lung mets were found. In 2013, I had an emergency admittance into hospital to have a large necrotic tumour removed. I was told then that I had advanced, progressive disease. My bowel became stiff with calcification.

It’s now 2018 and seemingly no recurrence of ascites. (Fingers crossed.)

I last had a scan in November 2013. I’m on Watch and Wait though what they’re watching for is anyone’s guess.

I was in dreadful pain and on a pain management routine. I’m certain that the pain was due to a partial blockage but that seems to have settled.

I’m not on hormone or any other therapy and nor do I have scans. My CA125 was 15 at diagnosis and 9 after chemo so isn’t used to track my disease.

The fact that I’m still here is a miracle in itself.

Personally, I feel abandoned. My husband, on the other hand, says I should try to enjoy this time and get referred to Manchester when the ascites turns up, which no doubt it will. I’ve agreed to this.

My situation is very confusing and hard for me to understand.

I hope you get some answers. There’s an Ovacome pin to the right which gives information on second opinions. It’s very interesting and well worth a read. Xx

(I couldn’t find it, but no doubt someone reading this might. I’ll check again later)

Hi Kerry ...

This is a very useful page on getting a second opinion. I couldn’t find the Ovacome one but this is very informative. To find the advantages and disadvantages, you’ll have to scroll to the rear end of the page. Here’s the link ...

macmillan.org.uk/informatio...

Hi Tina, Thanks for sharing your story. Wow, you've certainly been through it haven't you and I'm so pleased that things have settled down for you. I think I was very spoilt with the Consultant who did my op as he was great, so full of energy and he treated me as an individual. My Onc, like I said, is nothing like that and doesn't seem to have the passion and interest he had and that's what makes me feel like I've been left out to dry. I've just poured myself a large glass of wine and I'll have a look at the link you gave me about getting a second opinion. I hope that things stay settled for you and please keep me posted as to how you are. Us low graders are rare and it's nice to talk to other ones and share our experiences, take care, Kerry xx

Hi Kerry, I’m sorry to hear you’re feeling that your oncologist isn’t taking the proper time or interest in your situation.. that would be very unsettling!!!

Treatment wise though what he has suggested sounds reasonable at this time.. even though you’ve been on an AI trying an alternative one like Exemestane can still be effective. Although they all try to do the same function, Exemestane works differently in its pathway (steroid based) and may change things up a bit to fool the cancer.

The chemo option is difficult in a recurrence, it can work, but often just doesn’t seem to induce a significant reduction of the cancer.

If you do go for a second opinion, perhaps try somewhere that are very involved in clinical trials where you could receive a MEk inhibitor or immunotherapy. Best wishes!!!

Thanks, and your explanation as to how exemestane works is interesting as I didn't know that. I also feel slightly more reassured as well. Shame my Onc couldn't explain that to me !! I'll keep you post and and thanks again xx

Hi Kerry,

My team also said no to more surgery. So I had a second opinion in London from a lovely surgeon there and w ho is often referred to on this forum Perhaps you may be in a position to consider this avenue!. Whatever you decide good luck.

Gwen xx

Thanks Gwen, I know who you're referring to and I'm considering approaching her, as well as a couple of other people who've been suggested to me. I'm not sure she will be able to help though as I have nodules scattered all over and I think she only operates on larger rumours, but I could be wrong. Thanks again, Kerry xx

Hi Kerry as we can name people now thought I would add some people for low grade that I know.

Surgeon wise there is Prof c fotopoulou in London. But also mr raj niak at queen Elizabeth hospital Gateshead. He came v highly recommended to me and I have had really good surgical reviews with both Christina and Mr Niak.

In terms of medical oncologist with special interest in low grade, Prof Charlie Gourley based in Edinburgh at general western. He led the recent MEk inhibitor trial with Prof d Gershenson at M.D. Anderson. So he will have experience of knowing and reviewing more low graders and how we respond to current licensed therapies. And finally whilst not just focusing on low grade there is also Prof Gordon Jayson a medical oncologist at the Christie. Good luck

Morning Agility, Thankyou so much for this, I knew there was someone in Gateshead but didn't know his name. I'm compiling a list of names and treatments so really appreciate this information, Kerry xx

I am reading with interest as I am entering the world of Phase I trials...for Low Grade Serous OC. First diagnosis in 2005.....a long story later......I have some in my lung which appears to be spreading in a new way...not like a single lump/tumor, more nubulous. I am going to ask for a 2nd opinion from the Marsden (currently at UCLH and been at Barts in the past) - can anyone here recommend a specific oncologist I should request??

Hi, I'm still waiting to hear about my second opinion but these are the names I was given:- Royal Marsden - John Butler, Susanna Bannerjee and Martin Gore. The Christie - Proffesor Gordon Jayson. Hope this helps, Kerry x