My Ovacome
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Second Opinion Low Grade

Morning everyone, I was originally diagnosed with borderline which progressed to low grade in 2015. I had six sessions of carboplatin and have been on letrazole ever since. A recent scan has confirmed the bugger is on the move again with various nodules on my spleen and near to my stomach. My onc has now put me on exemestane (another hormone blocker) and wants to see me again in three months to see if it's helping. I asked whether chemo was an option and was told it would be like hitting a nail with a sledgehammer and surgery was a no, no also. I'm considering getting a second opinion as whilst my Onc is ok she's very laid back and not very proactive in my opinion. The Onc Consultant who did my original surgery was great, he always gave me plenty of time to ask questions, was very enthusiastic and he treated me as an individual not a statistic and this is the sort of person I would prefer to deal with. I would appreciate your opinions please as I feel a bit like I've been left out to dry at the moment. Thanks, Kerry X

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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

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Hi Charlotte, Thanks I'll look into that. How's you mum getting on with it ?

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Hi Kerry. Mum has just finished the first cycle (4 weeks) so really early days. She has had some side effects, mainly a horrible rash on her scalp which is being treated, but we won't know until a scan on the 20th March whether it is having any impact.

I don't know which centre you are at, or if at a local hospital, but I would recommend the Marsden. We were lucky enough 6.5 years ago to be referred there without asking as mum's oncologist, as lovely as she was, admitted that she had no clue how to deal with mum as mum wasn't following the 'standard' for an ovarian cancer patient. The Marsden has specialists in low grade and apart from a few registrars over the years who really need to learn a bedside manner, we have found them to be excellent.

you do have to have confidence in your team though so if you are unhappy, I would recommend you seeking a second opinion. It is your right to do so. Xx

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Hi Charlotte, I was originally treated at Addenbrookes but was referred back to my local hospital when it came back as low grade and my Onc has very little experience of low grade. I've decided I'm definitely going to seek a second opinion now as to be honest, as lovely as my Onc is, I don't have a lot of faith in her. Thanks for your help and good luck to you mum for the 20th, Kerry x

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Good luck in getting your second opinion. I remember the consultant at the Marsden telling us many oncologists will never see a low grade cancer as it is rare and when they do, they don't know what treatment path to take.

As we can name names now, the clinic at the Marsden is lead by professor Martin Gore and Dr Susanna Bannerjee. Google them and you'll manage to find out a bit about them.

Wish you every luck xx

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Thanks again Charlotte, I'll let you know how I get on xx

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

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What treatment have you had so far ? X

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Sorry for the late response.

I had only surgery for the initial diagnosis in Oct 2015 (mostly borderline, with a little serous micropapillary low grade disease), then watch and wait. No chemo at that time. CA125 rose sharply at the end of 2017 and CT/PET scan revealed suspicious lymph nodes in pelvic area = 1st recurrence, which was so far treated with another laparotomy surgery in Feb, which removed all visible disease (only lymph nodes). Affected LN pathology came back as low grade serous cells.

Now following up with 6x carb/tax chemo, starting April. Not convinced it is effective for LGSC to prolong survival (there are studies out there suggesting it's not), but since I'm now living in Germany, my treatment options are otherwise limited. Can't get to the Letrozole without doing chemo first. No low grade trials here either (feels a bit like 3rd world, for low grade patients, although we have some of the best overall experts regarding ovarian cancer treatment in general, like Dr. J. Sehouli in Berlin).

I tap into the Royal Marden, when I need a second opinion.

All the best.

Maus

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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

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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

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

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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...

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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

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Hi Kerry.... I might just pour one myself if there's one in... Yes, it's all hard to understand.. Xxx

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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!!!

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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

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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

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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

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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

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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

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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??

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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

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Thank you

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