Deflated low grade worries!: Morning This is my... - My Ovacome

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Deflated low grade worries!

Nibs81
Nibs81

Morning

This is my first post on here and really just looking for something positive from anybody. I was diagnosed in September with low grade 3C ovarian cancer. They attempted surgery 1st October but there was too much disease on the small bowel for them to proceed any further. So we reverted to chemo with the hope that it would shrink what it could and then go back in to remove. 3 chemos later and 1/2 way CT scan done and discussion in MDT yesterday have said to carry on with chemo and there is no discussion of surgery. I spoke with my CNS yesterday to talk about what was discussed and she said that the disease is “stable” but there hasn’t been a big enough response for them to be able to go in and be successful. Whilst I’m happy that it’s stable I can’t help but feel down that surgery won’t be happening just yet or possibly even at all. Has anybody had a similar experience that could help my mindset.

Much love to you all 🙏🏻

Kate ❤️

28 Replies
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Hello Kate, I'd don't have much to offer in terms of what you're looking for but did want to just say hello and welcome. I'm pretty new too and am just coming to terms with all this. I've found this forum enormously helpful. Do you know your histology type (clear cell, mucinous etc) as it makes a difference to treatment I think. I'm low grade mucinous by the way xx

Nibs81
Nibs81
in reply to Goodwillow

Yes it’s adenocarcinoma serous low grade 3C. Thank you for replying ❤️🙏🏻

Hi Kate,

I was diagnosed in 2016 through a biopsy (I have 3c, but high grade). I had a palpable tumour on my omentum and scattered disease throughout my peritoneum. It was decided that I should have 3 chemo, then surgery. The chemo shrank some of the disease so the operation went ahead. When they operated they found tumours which couldn’t be removed without jeapordising the blood supply to my stomach, so they removed my omentum, had a look around then agreed that my particular presentation was best treated by more chemo.

I think they take imaging, CA125 and how you feel into consideration, alongside their own experience, but if you still have questions about the treatment you are having, you must ask your team. You can, of course ask for a second opinion. I was pleased to be told I was stable - it was more than I expected!!

Good luck with everything, best wishes, Ali x

Hi Kate. My mum was diagnosed in November 2010 low grade 3c and whilst we've had some pretty rough times, she's still very much living life to the full. Rough year this year with numerous UTIs but started a clinical trial at the Royal Marsden in January which has shown an overall reduction in the targeted tumours of 55%.

I'm not sure where you are being treated but if not at a specialist centre (Marsden, Christie) I would encourage you to get a referral to one. Low grade is rare and general oncologists typically do not see many cases.

Xx

2010?? That’s bloody brilliant.

I’m being treated under Dr Balaga at city hospital in Birmingham. He is one of the best in the UK from research I’ve done so have total faith in the team around me. I think I’m just impatient 🙄

Thank you for taking the time to reply ❤️🙏🏻

Hi. I think you have every right to be impatient and make sure your treatment plan is right for you! And it's good you have researched your team and have faith in them. That is just so important.

Good luck with everything. Xx

Hi which clinical trial please ? I’m low grade too x

Hi. It’s the frame study at the Drig Development Unit at the Royal Marsden in Sutton. It’s not cancer specific, but targeted at the genetic mutation xx

Welcome Kate. I'm a 'low-grader' as well (stage 3a, past the first recurrence and chemo; now on Letrozole pills - started after chemo - and continued 3-weekly Avastin infusions.. with my ca125 still dropping).

I've read that low grade serous OC might not always respond as well to chemo as the more prevalent and aggressive high grade cells.

That said, I would ask your medical team about a) adding Avastin/Bevacizumab to the chemo mix (if not already done) and b) starting you on hormone maintenance therapy / HMT (which is actually an anti-hormone treatment) e.g. Letrozole , which might work better than chemo alone.

Of course it's difficult to predict the exact result as we are all individuals etc etc. But still.. I think you might be right to look for a range of treatment options, if chemo doesn't hit the tumour spread as planned (hm.. also possibly Mek inhibitors via trials, as they are not yet approved for OC treatment, if I'm not mistaken) .

Crossing fingers the chemo will work after all. If not, wishing you success with the HMT, Avastin or maybe MEKs. Something will be found that wrestles those tumours into submission, so you're in better shape for surgery, I'm sure. All the best. Maus

/edit: Also agree with Charlotte on the benefits of being treated in one of the big cancer centers, as low grade is rare.

Hello Kate,

My mum (56) is in a very similar situation. Diagnosed in May 2018, low-grade 3c (spread all over the bowels, omentum, etc). After 3 cycles of carboplatin-paclitaxel-bevacizumab, there was a tiny reduction. After 3 more, disease is stable but the response is not enough for surgery. She will stay with bevacizumab as maintenance therapy, with almost no side effects, hoping that it can maintain this response for as long as possible. The oncologist will not think of any other treatment as long as there is no disease progression. So I would suggest you to ask for bevacizumab (avastin): my mum's oncologist says it can not only maintain the response but also keep reducing the extent of disease in some cases. We hold on the fact that my mum feels very well, with no symptoms, so can live a normal life for now, so stable disease is not that bad as long as it lasts. I will keep you posted of any new treatments. Hormonal therapy seems also effective for low-grade, and you could also ask for a BRCA mutation test.

Good luck! Best,

Sara.

Nibs81
Nibs81
in reply to Seshat2

Thank you Sara. Yes like your mom I generally well which is the frustrating thing. Thanks for taking the time to reply ❤️🙏🏻

I don't have much knowledge on your type of OC but would like to offer a big welcome. You'll get a warm and sage advice here and great support.

Sandra 💐💐 xx

Hi Kate,

a big welcome from me too, a few weeks ago I was diagnosed with low grade serous tumours . One of which burst on removal during the radical hysterectomy and so its stage 3a. The Omentum showed microscopic residuals too.

I'm on carbo/taxol 3 weekly and weekly taxol only chemo and will have a scan at the end. They say it may help to stop a blood supply getting to any residual matter and stop it growing as well as possibly shrinking what might be there.

Just got back from Swindon hospital as cellulitis has been diagnosed in one leg. So back on the antibiotics too.

The tumour tissue will be tested for oestrogen receptors so I may be a candidate for Letrozole or Arimidex to help reduce the risk of cancer recurrence.

I did ask about the habit of low grade OC tumours which it seems tends to wrap itself round organs rather than bore into them which made me feel a bit less anxious on a day to day basis.

I do hope this is of some help and send positive thoughts and love

Alex x

Nibs81
Nibs81
in reply to Artgreen

Thank you for replying Alex 🙏🏻❤️ What was the answer to your question about the tumours wrapping did they answer you?

Artgreen
Artgreen
in reply to Nibs81

Yes they agreed that I hadn't just made it up! ( I doubt my sanity sometimes as there is so much new information to take on board and I keep reading so much) . It was good to hear that it doesn't have a habit of invading organs, which made sense as mine was sticking to everything in the abdomen from what I can gather, including the liver, pelvis and kidneys. They had to put stents in to find the kidneys and bladder again. It was a relief to get those removed. I do find it difficult to ask the right questions at the right time sometimes. So it is reassuring to hear from people on this forum how much information you can try to glean.

Very best wishes

Alex x

Nibs81
Nibs81
in reply to Artgreen

Absolutely. I wish you all the very best ❤️

Hi Kate and welcome to the site you would rather not have to be on. We're all here to help when we can and even if we can't help we'll listen so never hesitate to put your worries out there.

I haven't really got any advice but I still think there's good news that you're stable. When you've finished your chemo the op may be offered then. I was told sometimes surgery is at the beginning or it could be in the middle or end, so don't lose hope with that.

I was Stage 3C 5 years ago but I don't know if it was low or high grade. I'll have to try to find that out. I did have a lot of bowel damage but I'm still here to tell the tales of woe. There can definitely be good news and light at the end of the tunnel even though it doesn't seem like it sometimes. Hang on in there. All the best of wishes, Zena xx

Nibs81
Nibs81
in reply to ZenaJ

Sounds like you’re doing amazing zena great to hear you’re 5 years into this and still going strong ❤️🙏🏻

Hi,

I was diagnosed Nov. 16 with OC stage 4.

I was too ill at the time to have surgery because of a urinary tract infection, they just got on with the chemo.

Jan 17 to June 6 lots. I tried Avastin June to December 17 when it had stopped working.

Back on chemo. Jan 18, 6 lots to June 18. Now on Niraparib (parp. inhibitor) till anything changes.

I have asked about surgery and the answer is NO.

I did at first feel that as most people have surgery I had missed out but on the + side I have been amazingly well through the last 2 years, I have some side effects but I have been able to cope.

I have even gone back to playing badminton twice a week!!!

I have been guided by my Onc. throughout, put your trust in them.

I hope you get a clear plan quickly.

Love Anthea

Nibs81
Nibs81
in reply to Bailey81

Anthea that’s brilliant to hear. Keep going girl ❤️🙏🏻

Ok relax and don't worry, my friend had 8 or 9 chemistry after they opened her and closed to many tumors everywhere. It's been over 6 months and she's just know in another week going in for her first real debulking surgery, there removing part of her bowel and her colon. She feels great. She gets tired but she's doing everything. Stay positive, it's sometimes mind that will keep you fighting and alive to succeed . I have stage 3c clear cell ovarian cancer, she's my only friend I've been able to personally be there for, in April I will be cancer free 5 yrs. God bless you , these are good signs for you and get busy living.❤❤❤Liz

Hi Kate

I had 6 chemos

and then surgery.

Diagnosed in 2012, so I'm not sure having surgery before, during or after chemo makes a lot of difference in the long run. Xx

Oh that’s really reassuring to know thank you so much ❤️

We are all different, some of us have surgery before treatment and others don't, that is about the long and short of it. Chemo making you stable is good and I would advise to finish the regime. Perhaps they may reconsider at a later date. You can be well on stable for quite some time

Hi. Kate

I am stage 4 high grade was meant to have 4 chemos then surgery. However scan showed too much disease for op to be successful. Now had 6 chemos and having scan tomorrow with a view to op in January and more chemo in February. Not given any info on what happens if they cannot do op this time so worried. Get great comfort from postings on this site.

I live in Canada and its a bit different in staging.It is so overwhelming when first diagnosed.I was diagnosed june this year 2018.Easier said than done but try to relax .Iwent into surgery and I was out the next day.I had ovaries omentum,appendix and lymphnodes removed.My uterus was removed years ago due to bleeding issues.In a while..everyone is different the shock will fade and you will make decisions as they come up.Each case is different and never give up hope because theres always the cases that defy statistics.Hang in there and sorry you have cancer.

Hi me again sent u a msg inbox. Did they test you for hormone treatment??

Wondering how you are?

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