New diagnosis - feeling frightened

[Bluel]

Hello everyone, I’m a shell shocked newbie and would so appreciate hearing others experience. I have the rarer type of ovarian cancer low grade serous stage 2b ( diagnosed following hysterectomy in March 2018). Apparently it’s resistant to chemo so I’m on a hormone surpressant Letrozole. It’s taking its toll v tired and gives heart palpitations as well as joint pain. I’m thinking of coming off and going just with diet. I’ve been reading a lot and outlook doesn’t look too good if I do nothing. I would love to hear any experiences if you have similar cancer.

[CharlotteSo_UK]

Hi. There are many women on here who have low grade. My mum was diagnosed 3c in november 2010 and is still very much alive and living a (mostly) good life! Yes, there have been some very tough times along the way, I wont sugar coat it. Mum has the usual chemo combos before the local oncologist put her hands up and said she didn't know how to treat mum and promptly referred us to the Royal Marsden, where mum still is today. Mum started on Letrozole in September 2011 until 2017 when they decided it wasn't doing the trick any more and started tamoxifen. That didn't work at all but mum is now on a trial which has seen the tumours reduce by 51%.

I know I'm not the one with cancer, I just live with someone who has it. Please persevere. xx

[Bluel in reply to CharlotteSo_UK]

Thank you Charlotte for a v heartening reply. Can I ask if your Mum suffered any ill health from taking the Letrozole?

[CharlotteSo_UK in reply to Bluel]

Hi, yes she did but I think that she was quite fortunate in that hers were manageable. Things like hot flushes, joint pain, mood swings (just like PMT really) but she coped ok with them all. My sister and I suffered from her moods though

I know there are other ladies on here who have tolerated it less well. Not sure if symptoms reduce over time - or you just get used to them!

[Bluel in reply to CharlotteSo_UK]

Thanks Charlotte. Hopefully I’ll get used to them...I’m v aware of my mood swings...horrid! You sound like a wonderfully supportive daughter. Good luck for your Mum xxx

[Maus123]

Hi Bluel. Mine is a 3a low grade serous OC, thus a similarly rare cancer type (details in my profile, if you click on my name). Although stage 3 is probably more prone to recurring due to the wider spread, so I'd take my experiences with a large grain of salt, if I were you.

Overall, I understand it can be a challenge to get the the treatment exactly right for low grade OC .. and may involve some trial & error attempts (also due to the possible chemo resistance), but it's possible to treat. 'How' also depends on the individual patient. Surgery is a good option, where possible. Anti-hormone treatment is also quite popular at the moment, based on some recent trial success. Chemo could work too.

My advice would be to seek out a center of excellence for gyn. cancers, where they have lots of experience even with rare tumour types. I was treated at the Royal Marsden in London, for example. And then re-examine treatment options. E.g. would it make sense for you to have the bigger debulking surgery on top of the recent hysterectomy, to make sure any visible trace of cancer is removed? If not, and since you struggle with the Letrozole, could you switch to another aromatase inhibitor like Anastrozole, or even Tamoxifen instead? All the best. Maus

[Bluel in reply to Maus123]

Thanks for your supportive reply Maus. I’m in Edinburgh which has a good cancer unit but I’ve heard loads of good things about the R Marsden especially trials. I’ll do some research. I was told chemo wouldn’t work and the surgical option too complex at this stage. Hormone therapy all that is on offer. I’ve tried a couple of types which had really bad side effects....so I’m perservering with letrozole. It’s so heartening to hear all replies from folk as I lost my husband to a brain tumour two years ago and it’s sometimes difficult not to lose hope....so thank you! And I hope you are doing ok too. Very best wishes

[Maus123 in reply to Bluel]

Thank you and I agree.. low grade is quite the tricky little bugger. Maybe your Letrozole side effects settle down after a while (heard from others this might happen), and it does the trick.

I even had chemo in order to get access to Letrozole. So it better work for us. Fingers crossed. Xx. Maus

[Orsolini]

I have low grade. Keep going with the Letrozole if you can, I had no symptoms. Good luck - Nicola

[Bluel in reply to Orsolini]

Thanks for your reply Nicola. I will perservere with it. All the best to you.

[Di16]

I have a different rare cancer from you - granulosa cell tumour. But chemo doesn't work well with it. I have been on Letrozole since April & am wanting to stick with it as long as possible. There are also other hormone therapy drugs, Arimidex, Exemestane, or Tamoxifen. Di

[Bluel]

Thanks Di, hearing all the responses has given me new vigour. Very best wishes, Lesley

[thomas62]

Hi Blue1

I am low grade serous 3b. am 4.5 years on and in good health. There are quite a few low graders on this site. I had a radical hysterectomy initially followed by Letrozole for 15/18 months before it stopped working - a few side effects which reduced over time - I didn't need pain relief. Then chemo which did have some impact although it doesn't generally work as well as for high grade. In January this year I had a 2nd surgery which was very successful. I am now on another hormone inhibitor - aromasin. So, as you can read, you have lots of options going forward. There are also trials and a lot of research going on now and into the future. Best wishes. Gwen xx

[Bluel in reply to thomas62]

Thanks Gwen I can't believe how supportive and upbeat you all are. I'm climbing out of my little rut and ready to look at different options. thank you. Lesley x

[doodoolatrice]

Hi Blue, I'm a low grader, diagnosed with borderline disease in 2012 which progressed to low grade in 2015. I had chemo and then was on letrazole for about 18 months. Side effects were minimal apart from some slight mood swings and insomnia but these soon disappeared. Letrazole stopped working for me earlier this year so I've been on exemestane (another hormone suppressor) since Feb and again very little side effects. Kerry x

[Bluel in reply to doodoolatrice]

Hi Kerry thanks so much for your reply. I will persevere with the Letrozole it seems to have the least side effects. But how did you know it had stopped working if you don't mind me asking? Best to you too. Lesley x

[doodoolatrice in reply to Bluel]

Hi Lesley, I have my CA125 checked every three months and it started going up. A scan then showed a module had grown slightly and another one had appeared so they decided the letrazole was no longer doing its job and put me on exemestane. Kerry xx

[thomas62 in reply to doodoolatrice]

Hi, Initially I had been on Letrozole but now, more recently, post a 2nd surgery I've been put on Exemestane - which I've taken for abt. 6 months now. Still NED. Could you tell me how you are doing on Exemestane. Thanks and Best Wishes.

Gwen x

[doodoolatrice in reply to thomas62]

Hi Gwen, I started on Exemestane in February and when I had my CA125 checked in May it had gone up by 15 points. As I was feeling so well my Onc decided to leave me and check me again in three months. In August it had dropped by 3 points so I'm on watch and wait and am booked in to see her again at the end of November, Kerry X

[thomas62 in reply to doodoolatrice]

Hi doodoolatrice,

Thanks for your reply. Good luck and I hope your CA125 keeps going the right way and that you continue to feel well.

Best wishes. Gwen x

[Sana59-US]

Hi Bluel,

I was diagnosed on July 2017 with stage 2 low grade serous! Had full hysterectomy including cervix and omentum and have been on Letrozole ever since. Take vitamin D plus K2 and walk for exercise as this really helps with joint pain. Overall side effects not to bad and tolerable. Best wishes on your journey 💗

[Bluel in reply to Sana59-US]

Thanks Sana for your reply and the top tips on vitamins. Vitamins and diet is something I am trying to get to grips with at the moment. I'm so grateful for this site and all the supporting comments as I was floundering a bit. Very best to you too. Lesley x

[Sana59-US in reply to Bluel]

It takes quite awhile to come to terms once diagnosed. After a year of being diagnosed still is the first thing I think about when I get up in the morning ! Diet even though hard it helps a lot, meaning less inflammation. Try to meditate everyday maybe start with 20 minutes morning and 20 minutes evening to calm you and if you are spiritual even better as Through this journey I can’t be without it. Hang in there as you will feel better as time goes by once it sinks in, Not easy! 🤗🤗🌟💛🌟

[Sana59-US in reply to Sana59-US]

There’s a Facebook group that you may want to join for support and information strictly Low grade serous.

[Bluel in reply to Sana59-US]

Thanks Sana. I’d be really interested to join that group too if you could post details. I’m a Buddhist so meditating is usually part of my daily routine but it’s fallen by wayside recently struggling with these drugs, keeping my job etc...I will get back into it. Xx

[Sana59-US in reply to Bluel]

ovarian low grade serous carcinoma (lgsc) psalm 118:17

[Jo2305]

Hi I have stage 3b low grade serous, six years since diagnosis at 40. Although I have had 3 chemo’s 2 operations I have generally remained in good health which I’m grateful for. I started Letrozole in December after large op in November and have had no side effects that I notice at all. Try and stick with it or if you feel it’s not bearable anymore perhaps your onc will suggest something else instead which will cause less side effects?

Take care xx 💗

[Bluel]

Thank you Jo. I’m sorry to hear about your diagnosis so young (I just turned 60) but very happy to hear you are in good health after so much chemo and operations. hearing everybody’s stories and fighting spirits who like yourself have endured far worse than me has given me perspective. I will continue with the letrozole. You are all inspirational and I feel as if I’m joining a new kind and loving family xx

[Solange]

Hi there, so sorry you've had to join this club but I think you'll feel a lot better for 'chatting' to us. I had my de-bulking op in November 2006, followed by confirmation that I had low grade serous OvCa in the December - nearly TWELVE YEARS ago. We thought I only had a few months to live but I've been very lucky over the years. I've had four Courses of Chemo and two single 'blasts' of Radio Therapy - and a pretty good quality of life. I've tried to stay positive and tell myself there's more to life than cancer. I'm sure, once the shock, horror, disbelief, or whatever you're feeling wears off, you'll begin to feel better. I really feel for you, remembering how I felt. Try and get out and about so you mix with people , even if it's just to chat to someone in the shop queue. Playing happy music and having a bright light on when the days are grey helps me a lot.

Sending love and best wishes for a good life, Solange😊

[Bluel in reply to Solange]

You are amazing Solange. That's an extraordinary story and so heartening to hear and gives me great hope. All the responses I have had have reinforced to me how important right mind/positive attitude is. I'm v happy I found this lovely new family. Stay well and thankyou xx