Low grade OC, statistics and info updates

[koffeekat99]

Hi all

I was diagnosed with low grade OC stage 3b two years ago. At that time my discussions with my oncologist were that low grade is very rare, the use of chemo is not universally agreed for low grade, watch and wait approach is best, but because I still had disease that they couldn't completely remove with surgery I had around 2 years.

Over the last few months a couple of research papers/articles have appeared which mention low grade. One of them was highlighted on here a few months ago which linked to the use of hormonal treatments. Today I found an article from July 2016 which talked a bit about low grade and summarised it fairly well I thought.

In that article there were some prognosis statistics which I don't think were available when I was initially diagnosed. They seem to suggest a longer prognosis than two years on average for low grade.

Now, I don't want to get too bogged down in prognosis statistics as I know they're just an indicator given by doctors which can be arbitrary. But it did get me thinking about what information is available more specifically for low grade.

I ended up looking at the cancer research website and found reference to some research suggesting that there is a difference between high grade and low grade OC when looking at the circulating androgens (steroidal hormone naturally occurring in the body).

So I wondered if anyone else had found any information more specific to low grade OC to add to this growing library?

Part of my reason for this is that I've found I have to spend more time explaining low grade cancer to people as they have certain perceptions about cancer. People find it very difficult to comprehend why I'm walking about knowing I have cancer but I haven't had chemo. I've started referring to it as a chronic condition in the hope that it will give people a particular perception of it. Every now and then I explain things to people and think 'hmm, actually I don't really know much about this aspect as the info relates to OC as a whole'.

Given that snippets are coming out every now and then about low grade OC that indicate differences to high grade I'd really like to try to understand it more. As an example I keep referring to low grade being 'very rare' but I have no idea what that really means. Am I the only person in my area, are there 50 of us, etc?

[Decca4Ever]

Have you looked at the Inspire oc site? It's American-based, so has a larger number of low-grade patients. whose experiences you might find helpful.

The expert in low-grade seems to be Gehrenson in Austin(?) Texas. I know he does use chemo for some patients. It might be worth looking in his direction for more research.

I think he or one of his associates was involved in a trial with the Royal Marsden.

Hope you find something helpful. It's always useful to have a second opinion.

[Petrolhead in reply to Decca4Ever]

Hi Decca

A friend of mine Stage 1C low grade mucinous emailed Gershenson re post op chemo. He recommended Folfox or Capox regime ( because it was mucinous) He definitely recommended chemo post op. The head of the trial ( with Gershenson) was Prof Gore at the Marsden. I was supposed to see him in December but he was ill that day. Anyway his colleague also recommended chemo for low grade (carbo taxol).

The trial was the 241 trial looking at variations for mucinous OC.

The recommendations were for mucinous OC which may not relevant for other types.

Not sure what type you have. If it is mucinous then some suggest that regimes for bowel cancer type may be more suitable but no big research done on this. It depends on what type of oc you have.

Fay

[Decca4Ever in reply to Petrolhead]

No - it's Katfish who has the lowgrade. But I'm sure she'll read your v helpful reply, especially as you've his name right! Yes - Gershenson, not Gehrenson, at M D Anderson.

I had mucinous Borderline 1c and long may it stay that way.

[Yoshbosh]

There are a couple of low graders on here - I'll message one of them now and see if she can add anything to your post.

Yosh x

[bibs73]

I'm a low grader and an avid researcher. Look at my previous posts I posted an article regarding the exact thing you are talking about. From this information I pushed my oncologist to prescribe a hormone blocker, initially Lortrozole but now Tamoxifen as I was getting arthritis with the Loretrozole.

My understanding is that 4-10% of all OC is low grade serious and about 7,300 new OC cases in the U.K. Each year so that's about 300-700 new ladies in the U.K. Definitely rare I would say.

For me hormones play a huge role in this type of cancer. As well as the Tamoxifen im also looking at other ways to improve my hormones. Dairy free, sugar free etc. Not sure how it's effecting the OC but I feel really well with these changes and I have very little menopausal symptoms.

Message me if you want to ask anything.

Oh and I finished chemo in May and my ca125 continues to fall (slowly but still fall).

Best wishes

Mxx

[koffeekat99 in reply to bibs73]

Hi. I was told that hormones were not an issue for me. However, I can't help thinking that is only what is known about hormones that is not the issue. What we don't know yet about hormones and the impact they may have is the thing that I wonder about. So I try to avoid things that may cause an impact on hormones just from gut feeling. I cut out sugar nearly two years ago and similarly feel a lot better for it. I've never been big on dairy anyway as I don't like milk or yoghurt. So I figured occasional cheese is unlikely to have been a big factor. I do try to have non-dairy cheese anyway or organic if I can find it.

I think I've looked at the research you mentioned as I discussed that with my oncologist at the last meeting with her. She said she'd be willing to try the hormone blockers if I wanted, given that they aren't meant to have huge side effects. But my understanding from that research is that you have them straight after your surgery and you should show no disease. I was already two years post surgery at that point and had disease remaining after surgery.

Are you free of disease post chemo and were you free of disease before you had chemo?

[bibs73 in reply to koffeekat99]

How I understood the most recent paper of the research is they looked back over the last 15 years with low grade. The ones that had no evidence of disease at the end of chemo or surgery were more unlikely to have been prescribed the hormone blockers. It was the ladies that had residual disease that was. However it was these ladies that did better, less reoccurrence and longer time too. So what I read into it was if the ladies with the residual disease did better wonder what would have happened to the ladies that were NED if they were given the drugs - they could have done even better. Thats why they are suggesting further research.

Tamoxifen was a game changer in Breast cancer perhaps it will be the same for low grade.

I was talking to my oncologist about this (in Norway, however I've just returned to live in the U.K.) and I said to her that although my ca125 was in normal range it continues to come down, slowly but each time it's a couple of points down I believed it was due to the hormone blocking and she agreed. I also said that I thought this would be standard treatment for LG and she again agreed. She said in Norway it would take around 12-18 months to standardise this protocol so I'm ahead of my time.

I had a clear scan at the end of chemo and my bloods were in normal range but they never said NED to me.

I think things are changing for low grade and new possibilities opening up. Hopefully the future is brighter for all of us.

[koffeekat99 in reply to bibs73]

I find it a really odd position to be in. I feel like I should be thankful for the slow growing aspect of it. As you say, things keep changing, so in theory we could benefit from changes in treatments that become available over time. Something that isn't as likely if you have something that is aggressive.

But then because it's rare the likelihood of treatments being designed for low grade is lower too. Some of the treatments seem to be available because they were found by accident when looking for high grade. So the treatments available to low grade are potentially more limited.

Similarly some of us were given a choice about chemo. Again, that looks like a positive (and I actually liked having the choice), but then it's a difficult decision because the evidence either way isn't that strong. It's not like choosing an ice cream flavour. It's a risk v benefits decision that isn't very clear cut and impacts on your health.

I don't really know what to do about the hormone drug. I was originally told that my cancer was found to not be linked to hormones. But at the time that was when they were saying they felt I could have HRT (even though I'd not asked about HRT because I had no intention of having it). So, I don't know if that means they've tested my tumour specifically for the hormone drugs. They said I could have the drug if I wanted at my last meeting. But if my cancer is not indicated for it then I'm not convinced I want to be messing about with my hormones. So again, it comes down to me looking into everything and pushing things. Again, I'm a control freak so maybe this is right for me. But I also like to have clear reasons to do things.

My gut feeling is that currently I don't think it feels right to take any kind of drug. Rather to enjoy life today, try to eat well, exercise well, etc. The thought of going back into some kind of treatment and monitoring isn't tempting. I have no idea what my CA125 is. I think I knew at one point pre-surgery, but haven't bothered to ask since and can't remember what it was. I have residual disease so I have to assume it's higher than if I didn't have OC. But I don't feel that I want to get into a situation where I'm worrying about what the number is. Similarly I was offered a scan a year ago to 'ease my mind'. I decided that the scan was more likely to worry me than ease my mind. So I declined.

That all sounds like I have my head stuck in the sand. But I don't think I do. I think I question things far too much to ignore things. I think it means that I'm more likely to question why I would do something and to need a really good reason to do something that doesn't follow my gut instinct.

Are you also seeing someone in the UK? How does it compare to Norway?

[ScardyCat40]

I was diagnosed with low grade ovarian cancer 6 yrs ago I am Stage Iv. I have had chemo three times ok I have only had partial responses but it has helped to stabilise the disease. I don't understand why you were told 2 yrs the more typical prognosis for a woman with low grade is 8-10 yrs. there are also trials specifically for women with low grade disease.

[thomas62]

Hi katfish,

I am serous low grade 3b. diagnosed 3 years ago. I had a radical hysterectomy. I have not had chemo as, whilst some low graders can respond to it, the percentage who do are low. I was initially put on "watch and wait" but when I changed hospital was put on Letrozole as my cells tested positive for "strongly and diffusely oestrogen positive/progesterone negative".(I am post menopausal). I think I'm right in saying that Dr. David Gershensen reported last year that AI's (Aromatase Inhibitors) were often beneficial to low graders with side effects not as bad as chemo. As ScardyCat40 says I believe the typical prognosis for low graders is 8-10 years and this was confirmed to my Oncologist. There are trials for low graders called MEK Inhibitors. I have also heard of a LOGS trial but not certain it's for low graders. You could google Dr. Gershensen/M.D.Anderson and Letrozole, as well as the trials. Yes, we are in the minority and so there are less of us to share information. Low Grade is totally different to High Grade and cannot be compared with it. So, if anybody has any further information to share about Low Grade it would be appreciated.

Best wishes to all.

Gwen

[ScardyCat40 in reply to thomas62]

LOGS trial is another MEK inhibitor and it is for low graders

[Daniellafriman]

Why they said to you that tge prognosis for low graders are 8-10years. My dr told me that my oc maybe never return, as we all have different case. I had low grade 3a, just few cancer cells , no cancer tumour, I think this is why my dr told me that...? But I think that giving prognosis is wrong, MANY women live with agressive oc 10-20 + years.

[Orsolini]

I am low-grade so really appreciate this post. Initial diagnosis in 2009. 2nd recurrence now and trying various chemos but not convinced and not sure doctors even really know what to suggest. I have no pain but can feel the tumours. Living life normally. Just been offered oxalyplatin which I need to investigate. Nicola

[koffeekat99]

Lots of interesting and varied responses. Thank you.

It's possible that my prognosis is partly because it (2 years) was based on OC as a whole and partly because it was known I'm not disease free. I'm not sure there's anyone else in my clinic who is low grade. Although with 300 new cases a year I'd expect there to be someone else in my area. I get the feeling I'm a bit of an anomaly in this area.

I did find some research suggesting that there was a strong correlation that there was on average a high level of circulating androstenedione in low grade OC pre diagnosis but a low level of it in high grade OC. So there does seem to be an increasing awareness of a difference between the two. It wasn't known though whether this was a cause of the cancer or the effect of the cancer.

This prognosis of up to ten years makes me wonder just how long I had OC before I was diagnosed. It sounds like I could have had it for years without knowing. It's making me think back about things and question all sorts of things. But I'll probably never know.

[bibs73 in reply to koffeekat99]

My surgeon suggested I had likely had it for years and asked if they had checked my ovaries when my youngest was born. She was 5 at the time. However what blows my mind and makes me wonder - she was diagnosed with a low grade brain tumour the previous year. Her neuro oncologist suggested that she was likely born with it. I can't change the past but wonder if both are linked.

[koffeekat99 in reply to bibs73]

Gosh. I'm sorry to hear that. How is she? You're right, you can't change the past and you can only work with information you have at any point in time.

I went through gene testing because there's a strong history of breast cancer on my mother's side. But it was negative. I remember my mother having a hysterectomy when I was about 10 due to fibroids. When I started my periods she was convinced I had something similar as they were so heavy. They were always a nightmare, so much so that I have found post-menopause a lot less traumatic (even with several menopausal symptoms). Now my dad has been diagnosed with prostate cancer. That makes me wonder if there are links there that we just don't know about. Opening up the idea that the low grade can be around for years just opens up even more questions.

But how could anyone know and would it change anything? I asked several GPs about my periods from my teenage years until mid-30s and they all sent me away saying that it was just how it was for me. I eventually got sick of asking, even when things changed about them. But I now feel that there has been an inevitability to arriving at an OC diagnosis when I look back. It's all intangible though and would never have resulted in being offered ovary removal at an earlier age. No known genetic link, nothing specific on blood tests at early age, nothing on ultrasound when I was in my 20s, etc.

It's true what is said about hindsight, it's not really that useful when it comes down to it.

[bibs73 in reply to koffeekat99]

She's fine now. She was lucky enough to get all of it removed with minimal damage, she's lost some eyesight but small potatoes compared to what other BT children have to deal with it. We were told it was inoperable but I found an amazing surgeon through trawling the internet, so i really believe we are our best advocate and need to constantly keep ourselves updated and not just rely on our medical team.

I also found out after surgery that I had bad endometriosis which I think was my precurcer. That it also linked to hormones. I also had period problems lots of pmt again hormones.

There is a book by a dr called Sara Gotfired about hormones really interesting and i fall into the too much oestrogen category. It's a good book it suggests natural remedies.

[koffeekat99 in reply to bibs73]

I wonder if low graders were gathered together in one room and compared notes we'd find a few commonalities???

Glad to hear your daughter recovered from BT.

[ScardyCat40 in reply to koffeekat99]

Where are you being treated? I have always had residual disease and a CA125 abover normal and I was diagnosed 6 yrs ago. A couple of years ago I asked my oncologist and he said the average at the hospital was 3 yrs but that is mostly based on women with high grade serous. I am currently undergoing investigations for the LOGS trial

[koffeekat99 in reply to ScardyCat40]

Hi again

Bit of a delay in responding as I dont always seem to get a notification telling me I've had a response!! Just spotted this whilst looking through for some info.

I'm in Yorkshire, so being treated in Sheffield.

[ScardyCat40 in reply to koffeekat99]

I think the generally accepted median survivorship is sbout 8-10 yrs but we are all individuals and it depends on yourresponse to treatment and your progression free periods

[mogwaicat]

I'm stage 3b low grade, diagnosed last September in Ohio, USA. I had three courses of dose dense carboplatin/taxol IV, surgery (optimally debulked!), and now I'm doing another three courses of iv chemo.

I was supposed to do IP chemo, but my port had complications. Low grade is less sensitive to chemo, but that's not to say chemo won't work at all. My tumors shrank during the initial chemo appreciably. I'm very optimistic about the future right now. It's likely the stuff will come back, but at least it's slower growing and might give science a chance to catch up!