Rare ovarian cancer - granulosa cell tumour (GCT) recurring, & new here!

[Madmarilyn]

Hello Everyone!

Was first diagnosed with this rare form of ovarian cancer that seems to respond best to surgery only about a year ago, out of the blue. Thought surgery fixed me after ending up in A & E & ending up having full hysterectomy to remove cancerous ovary, after feeling bloated, being full of fluid & then being sick & in pain. All good since then, & felt I was back on track.

Blood tests showed my Inhibin levels rising steadily since last September, scans etc & now about to go back to hospital for exploratory surgery as they think it's back in two places, to see what's there. Bit scared, doctor seems pretty defeated, but I am so determined to fight this damn disease. Shame it's so rare, no one seems to have a definitive answer about how it works, different treatments in each country, little shared information,

Can't see how they can make any diagnosis without more information from exploratory op, but they seem so pessimistic already! Been told it will get me in the end!

My partner is really struggling as all they can see is a future without me. I am trying hard to be positive, any distraction is good, but my partner in such a bad place, unable to see more than a life without me & talking about ways to end everything. I can pull them back most times, but am well at the moment. What happens when I am in pain or not feeling well, how do I do that then??

Anyway, I am pleased to be on this forum. I haven't read much about my type of cancer but figure if it is so damn rare, then no one can predict the outcome. Determined to disprove everyone!

[Alikay]

Hi Madmarilyn. First of all, welcome to the party that no one joins through choice, you will find a wealth of knowledge and support from some amazing people.

I can't offer any advice about your particular cancer, but to counter your oncologists pessimistic comment, life gets everybody in the end, we are just forced to acknowledge it earlier than some others. With regards to your partner, is it possible that they could get some counseling, either from your gp or McMillan?

Try and keep positive if you can (easier said than done), and we are here for you if and whenever you need. Take care. Ali xx

[Madmarilyn in reply to Alikay]

Thanks Alikay, good to hear such positive vibes. I am determined to hope and to continue to live my life, maybe with just a little more appreciation! I have managed to get as far as persuading me partner to see the doctor at least, so that's progress, and having such great support on this forum so quickly has already acted as a kind of counselling for both of us!

I know nothing about you or why you are in here, but bless you for being so rapid in your response, and kind and energising with your thoughtfulness, I wish you courage and peace in return!

[Alifit]

Hi, as Alikay has said, this forum is extraordinary for help, advice and support. I have no experience of your Cancer so can’t advise you on that, but if you can stay positive then it will help you, both emotionally and, in my opinion, physically too.

I hope you can find some support for your partner. I can understand how it must feel if you are watching a loved one suffer, but when you have cancer you need as much support as you can get. I have the opposite - my bloke is spending 14 weeks of this year sailing - including across the Atlantic, so I may have to call in favours if I have a crisis!

I have refused to acknowledge any of the statistics about survival rates (which are usually out of date) and like you am determined to beat it for as long as I can. No one lasts forever - I thought the number 50 bus was going to get me - and it still might!!

Best wishes, Ali x

[Madmarilyn in reply to Alifit]

Great to hear someone else doing their best to be their own statistic, thanks so much for this! I can't see how my Consultant can give me a prognosis when he can't even be sure what he has seen on a scan yet, til he goes in with a laparoscopy, so I am definitely going to be positive for both of us at this stage. He even tells me that feeling well is not a good sign, and promises me photos to show me after the op! I'm not in denial, just looking for the bright side, as there always is one!

Already loving this forum, and I hope your other half is getting what he needs from the sailing - maybe you get your own space and 'girl time' with your mates whilst he's off doing his 'thing', but no doubt he sends you positive vibes from the sea! Good luck, and I send you every good wish for a well planned crisis if you have to have one!

[Alifit in reply to Madmarilyn]

Thank you Marilyn. Your consultant sounds like a barrel of laughs! I know he’s there to inform you of the possibilities, but there are ways of delivering the news; and ways of delivering the news!

We’ve been together for 38 years now and have been lucky enough to fulfil ambitions both together and independently mostly without repercussions. So, yes I’m looking forward to my time with friends, children and family, but am slightly annoyed with the cancer from stopping me having a more adventurous future (I was diagnosed a year after I retired - I had already been investigated for cancer and knew that there was something wrong).

Mustn’t grumble though - there are many people worse off than me - my daughterks friend who is still in her twenties has just been diagnosed with ovarian cancer - now that’s not fair.

Hope you continue to feel well, Ali x

[airfemale]

Hi Mad Marilyn, I do understand how you feel about this disease you have. Having ovarian cancer of any type is extremely confronting and your cancer being rarer makes it harder to get an idea of what is to come. My understanding of your cancer, seems to, have a better outcome than some of the other types. That being said it is better to focus on what you can do to fight this disease. If my oncologist started to feel defeated I would find another one. You seriously need to get a second opinion. You need positive people on your team. It is also time to grab your partner and yourself and go to counseling together. Your partner is going to need just as much support as you. So girl, there are also sorts of treatments and if chemo is recommended then that is what you must do. I don’t have your cancer type but I have high grade serous epithelial ovarian and mine is at a highly aggressive stage. I am here after 5 years and my doctor doesn’t see why I can’t make more years yet. It is time to focus on what is good and for the time being, putting your happiness first. I guess it is easier said than done but it is you who sets the pace in your relationship. If you can find some inner peace for now then your partner will too. So my best advice to you is put your fighting pants on , don’t give in and go find some great help. My best wishes to you. Sharon

[Madmarilyn in reply to airfemale]

Hi Sharon, fighting pants are on, thanks, and in a way, it helps to focus my frustration at my Consultant, though I am trying to ask questions rather than be combative. I realise I am likely to need and see a lot of him! I thought I'd see how the investigations go next week, then if I still feel he has little fight, I could ask for a second opinion. I don't live in London, but have heard that the Royal Marsden is the specialist hospital for what I have. Do you know how one goes about getting a referral there? Do I just ask my consultant to get a second opinion, can I ask where he gets it from? I thought at first his manner was wonderfully calm, now I just feel he is depressed! He said he wished he could tell me good things; I said I didn't need nice words, just for him to go in and get what's there!

I am so sorry to hear of your situation, and I wish you positivity and fight for your own battle. He used the word aggressive with me, too, as it seems there are two types of this cancer, one that can recur after a long time and this kind, that comes back quickly, and keeps doing so, but I refuse to follow a pattern! If this is a rare form, they can't know too much about how it performs, and mine will be the one that defies the experts, as yours clearly is! You go on defying the odds, and I am right behind you!

[airfemale in reply to airfemale]

I think Marilyn perhaps ask the other girls on here for some names for a specialist. I could not help you there as I live in Australia. I sure if you ring the ovacome line they could help. Regards Sharon

[Madmarilyn in reply to airfemale]

Thanks Sharon, great to hear from you from so far away!

[Di16]

I also have gct, &I thought it had been sorted after initial surgery. When it recurred 2 years later, I was surprised, as I was feeling well. I had surgery, & was told it was likely to keep coming back till it got me in the end! I felt very pessimistic & weepy at first. Now, although I have recurred again, it is 10 years since that first diagnosis, & I'm still in no hurry to leave this planet. Having gct doesn't necessarily mean the end is near. Yes, it can be a roller coaster of emotions at times, & mean medical checkups & treatment etc, but in between I try to get on with my life. I carried on working in an active job for 4 & a half years till I retired at 63. I was a girl guide leader till 18 months ago. I've been on holidays, & have another booked for June. Yes, gct is always in the background, but I try to live as normally as I can. I know it is a rare cancer, but it is not a hereditary disease. Drs think it is due to a fault that has happened in a gene, but a fault that happened in my body, not a fault I inherited, & I can't pass it on to my daughters & grandchildren. Have you discovered the gct research foundation of New Zealand? They have on their website a document called gct for dummies, which gives some information I found helpful. Sorry this is a long post. Wishing you well. Di

[Madmarilyn in reply to Di16]

Thanks Di, that is just what I wanted to hear, a positive story of life continuing. Your case sounds quite similar to mine. I had just come back from holiday and had thought all,was good when we realised it was back, and shock doesn't rally cover it! I had also managed to get an annual insurance policy as we thought it had gone, so as well as the one ai had last year, also booked a holiday for the end of this month, which I have had to cancel due to the surgery, and claim for, so guessing that policy is out of the window now! Do you mind me asking who you use as an insurer?

I am inspired by your zest for life, and am also determined to live life to the full and get the most out of it. Thank you for taking the time to tell me your story, and thanks for the GCT tips and info, there are more of us about than anyone realises. I just hope that the medical world collaborates more, and that there are more feisty and intelligent women like Tessa Jewell out there who will encourage the experts to do what we do, and learn from each other! Good on you, keep doing what your doing!

[Di16 in reply to Madmarilyn]

I didn't mention yesterday, there is a facebook group, gct survivor sisters. Many of the members are in the USA, so quite a lot of comments are more applicable to members over there. There are currently 749 members, so there are more ladies with our rare cancer than we may think. There have been several threads on this site regarding insurance. I have used MIA in the past. Others I have seen on here include Insurewith & Boots. I think there has been another one mentioned, but I can't remember it. Di

[Madmarilyn in reply to Di16]

Brilliant, Di, thanks on both counts. I am good with LinkedIn but that's my only social media vice - guess I must now bite the bullet and get on Facebook to join survivor sisters?! Just for the record, I am in the U.K. Great for us all to link up as clearly there is so much not shared by the medical world.

Heard today about a place in Germany called the Halwang Clinic which seems to have some. (Expensive!) but cutting edge cancer treatments too.

Good luck and courage to all of us!

[Lindaura]

Dear Marilyn,

You are amazingly strong, fighting against all that pessimism.

You definitely need some support and perhaps some advice and second opinions.

A recurrence of your type of cancer is not a death sentence. It just means another uncomfortable surgery followed by chemotherapy this time and maybe even radio therapy.

Here is another support group for rare cancers that might be if help, but also do call the Ovacome help line.

rare-cancer.org/forum/viewf...

Please don't despair. Keep yourself hydrated, eat a good diet of cancer fighting foods (anti-angiogenesis- keeps blood vessels from forming that feed tumours) and stay positive.

This is a fight you can win!

All the best,

Laura

[Madmarilyn in reply to Lindaura]

Thanks Laura, well said and much appreciated! Again, whatever brings you to this site, I wish you as much hope and encouragement as you have brought me with your kind words and fighting spirit - we women rock!

[Howick01]

My friend was diagnosed with GCT more than 12 years ago and she only had surgery.

NED since then and doing well.

Hang in there.

Take care x

[Madmarilyn in reply to Howick01]

That's just the kind of news I was hoping to hear! Every good wish to your friend, and to you for passing the good news on, thank you so much!

[Kryssy]

Such wonderful encouraging comments from the girls. I hope it has put things into perspective for you Marilyn. Yes, counselling is great and whether you get it alone or together it will help enormously. Don't do this journey on your own. All the best to you xxxxx

[Madmarilyn in reply to Kryssy]

Thank you, Kryssy, and it really is good to know you are all there! Thank you for responding, and things are definitely feeling more positive, thanks to comments like yours and this forum.

Thank you to all the wonderful people behind it, and to those like you who I am sure have your own fights and down days but bother to post support to those who need it, as quickly as you did in my case!