I recently received the challenging news that my mother has stage 3c/4 HGSC. We have had our first chemo session last week, and for some days after the symptoms were very hard, but this has thankfully receded for now. All of this has been a hard pill to swallow, especially in such a brief frame of time, and I am distraught and grieving -- for the years we may no longer get together, and for all the pain and fear she might now have to go through. I know this is not an uncommon story for many of you who visit these boards, for which I am deeply sorry; and I certainly hope this post does not retrigger anyone's traumatic experiences past.
I have been trying to find stories of people online and frequently find videos dated from a few years back, and see that the women subject in those stories have since passed. I would love to hear stories of people who have succeeded the odds and insights into how they handled the healing process.
As I work on processing this, I was wondering if (for example) anyone here who has gone through this serious a staging has any insights or words of wisdom/encouragement that they might be willing to share/or that they wish they could have told themselves and their loved ones at the start of their journey. Stories of successes, advice about things that I should pursue with the oncologist/gynacologist/ treatments, strategies I can research., and so on.. I've been furiously looking through trial therapies like HIPEC, drugs like PARP inhibitors, elahere, etc etc, and watching many videos that break down the science of these things, but not necessarily what their practical implications are.
I have many questions, but right now, I would love to just hear things that might give a little hope. I hope this post is ok on this board.
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Hi. I’m sorry your mum has this diagnosis. I was diagnosed 3b HGS BRAC2 OCin October 2007 and told I had 2 years. I have had 2 recurrences and currently 11 years NED albeit on a clinical trial drug (Olaparib). This is my third clinical trial. I’d say stay off dr google, don’t look up statistics, yr mum isn’t a statistic. Live life as good as you can, holiday when you can (funds allowing), LIVE. Nobody is guaranteed tomorrow. Try not to worry about tomorrow, worrying changes nothing but what it will do is ruin the here and now, the present. Make memories. X
thank you! Right now, with only one chemo session down, theres not much chance to live and make memories yet, only time to sit and worry and pray. but i am still irrationally hopeful that we can go and have many many long and happy years.
thank you, ill hold onto that and keep focussing on being positive. Of course I know this is the right way, even if I can't quite find that feeling right now. Many congratulations for your many many years since diagnosis! I will keep you in my prayers for many many more to come.
It’s hard I know how I felt in the beginning and I know exactly how yr feeling right now. My own mum had 3B HGS OC BRAC2 before me and was told she had less than 5 years. She went over 14 years with no recurrences before getting a new primary cancer. So, I do get totally how you are feeling. I’ve also dealt with my dad going through lung cancer and living 32 years after diagnosis. What we all learnt is not to dwell on the diagnosis. Hard I know when going through treatment. Much love to you and yr mum x
Doing great; thank you for asking. I completed 2 yrs on olaparib this week and got approved for another year. I also am re starting work next week after taking a year off to just chill and reset (which I did really well)!
Good to hear! I found working helped, I continued to work full time until being made redundant, now I’m loving not working lol. Working is ‘normality’. Hope you continue to be well x
I had exactly the same diagnosis as your mum in July 2020 aged 78. I have just had a wonderful 3 days with my family celebrating my 82 birthday. I have had 3 cycles of chemo adifferent drug combination each time and 3 maintenance drugs in between. It’s not easy but you and your mum with cope and have happy times together. On the bad days at but in ways that make her relax and smile. support her to rest and get through it with practical help if you can and lots of tlc without fussing. On the good daysrs. make the most of it not in a grand way but in ways which make her relax and smile. Stay away from numbers on the internet. They weren’t true for me and more many others. Live in the here and now and never underestimate how important your love and support is in your mum’s recovery. My family have got me through. I am thinking of you and wish you both strength and hope. X
Dear Jayred, my thanks to you for this positivity. I am so grateful to hear you are doing well, and I wish for you much light and love and many many long years of health and joy with your family. I think I will eventually come to learn how to be a valuable support system.
Right now, I live far away from my mother (quite literally the other side of the world), but I have given notice on my job and will move home to support her within the next few months. Theres a lot of fear involved with giving up the life I know for one that is smaller and more fearful, but I think theres no other choice I can make than to be there for someone who means so much to me.
Stage Ic ovarian (mixed clear cell/endometrioid) with a side of stage Ia endometrial. 2006. NED ever since. My mum was a 28 year survivor, but we never knew her stage. I'm on a regular Zoom call with a group of ladies (all American except me) who are all long term survivors. Don't look at statistics, just support her through the chemo and then enjoy life.
Hi, I have HGS OC diagnosis age 69 stage 3c. Nearly 7 years on I am 76 and hoping for many more years.
Not an easy journey but had 4 years with no evidence of Disease (NED). This was after 1st line treatment of Chemotherapy, operation and further chemotherapy.
Now on recurrence stage 4a, having had more chemotherapy and maintenance treatment.
Chemotherapy is doable, gets better after the first week. Take the medicine provided as needed , eat well.
There is a variety of different treatments within NICE guidelines . Trials are specific for different types of OC and if chemo sensitivity or negative as well as testing combination of drugs.
Supporting your mum, encouraging her and looking out for her is the best any son or daughter can do. Take care of yourself and mum.
Thank you so much for your kind words and hopeful story. I sincerely wish you many many long years of happiness and joy ahead. I am trying to be the best son for my mother, so im prepared to accept that there are going to be both good days and bad. but i hope more good than bad, and for many many many years too.
Hi , I’m so sorry that your mum has this diagnosis and that your world has been turned upside down. When I read your post it reminded me about how my family reacted when I was diagnosed with stage 3c high grade serous OC in January this year. Searching and searching for positive stories and reading more than was healthy for emotional wellbeing on the internet. Reflecting on this as a family we were in different ways certainly experiencing a sense of loss and control. 8 months on and as a family we have moved forward and adjusting to our new normal . We have good days, rubbish days and days that are just days. I think the initial shock and overwhelming emotions do pass and with time and as treatment progresses reaching acceptance makes it easier. I have found this online community so supportive and reading positive stories gives me hope as well as all the hints and tips about how to manage when I’m feeling more vulnerable. I have 2 adult daughters, we spend a lot of time together, chatting about the past, the present and the future . My frontline treatment is nearly complete. 4 chemo , surgery, then 2 more chemo. I will have ongoing maintenance treatment. I’m feeling optimistic about my future and looking forward to a family holiday , something which at the beginning of the year I didn’t think would be an option. The inner strength we all have is amazing even when we don’t always feel it. I do wish your mum best outcomes from treatment. Be kind to yourself, your mum has a very caring daughter there for her. Sheila xx
Hi Sheila, thank you for taking the time to share your story, its so incredibly generous, and I am relieved to hear that you are taking things in stride and moving forward. Im hopeful I can too. We are a family of 3 boys, and once I move home I think she will be relieved to have all of us together again. Wishing you all the best and all the years and years with your lovely family.
Hi , apologies , your mum has a very loving son. I can only imagine how more difficult the distance must make this for you all. It’s early days for you all. I hope once you relocate it will be easier. Sheila x
You have had a lot of wonderful advice and hope inspiring responses. The best thing you can do for your mother is: stop searching the internet and listen to your mum's doctors instead; seek emotional support for yourself. Ovacome runs a friends and family support group on this website. Try that or whatever works for you. I know stage 4 people who are still surviving after 10 or 20 years. Modern medicine is making miraculous strides in this disease. Emma stage 4b.
Thank you Emma, you are quite right, and I will certainly be focussing on getting out of my pity party before I move home (currently I live half a world away, but have given notice and will go back in November) so I can be the best support person my mum can have. I will include you in prayers as well, and hope for many more long, happy and fruitful years ahead.
No. 1. The people that have the good news, the long remissions, the treatment has worked, the NED...They aren't really here that much. They don't need to be.
They are out in the world, trying to get on with their lives and forget about that spot of cancer that interrupted their plans.
The people who need support, help, guidance, advice, reassurance, a pillow to scream into or/and, shoulder to cry on... We are here.
That can mean this, and sites, like this one seem mostly filled with scary stories.
But this is a skewed view of the world.
There is hope.
More women than ever before are surviving longer than ever.
In the last 5 years, there have been breakthroughs that women are benefiting from today.
But you don't often find their stories here. Because they don't need to be here.
They don't need support, help, guidance, advice, reassurance, a pillow to scream into and / or a shoulder to cry on... at 3 o'clock in the morning or 4 pm on Tuesday.
No. 2. Get to a specialist oncology gyno center. Ask for a second opinion at one closest to your mum. The Marsden, the Christie etc.. It makes a difference.
Ovarian Cancer is nuanced.
Peer-reviewed and clinical data is better if complex and often baffling. But the best is an expert gyne oncologist. Your mum is an individual, her staging is only one part of the puzzle. Find a real expert and use them. Forget Dr Google.
No.3. Mourn and grieve. Personally, I hate that it's a non-linear process. And I tend to get stuck in the bargaining phase.
But I try not to waste today worrying about tomorrow.
My treatment could be successful.
I could have many years of remission.
There could be a clinical trial that changes the game for me.
Right now, the present moment, is all we have.
Nothing is promised.
You and your mum will have laughter and hugs.
Smiles and kisses.
There will be tears too.
But there will be hands held tight, precious moments, memories made.
You can get through this.
I can promise you that with great certainty because thousands of women have too. That have been just where you are right now.
Who felt this was too much, too overwhelming, too much for their hearts to bear.
But they got through it.
And will illuminate your path with their wisdom, knowledge, and experience.
Thank you very much for this beautiful, thoughtful insight. It soothes me immensely and I will share it with my loved ones. I am so grateful for the generosity and kindness of everyone in the forums. Wishing you many many joyful, healing years ahead.
I was diagnosed in Oct. 2019 with OC stage 3c. I had chemo and surgery with more chemo to follow that. I also had 3 years of niraparib. I am still showing NED ( no evidence of disease) . It’s a journey that has you going through some well days and some days that you aren’t always feeling that great. You just stay positive and I believe my faith helped me through all of this. I am a survivor and so thankful for this. Sending warm wishes Blessings 🙏🥰
Something someone told me that was super helpful in putting things into perspective is that there are so many treatments now that often OC can be seen as a chronic condition like diabetes and not the sentence like it used to be in the past. I'm 4.5 NEAD and get regular Avastin treatment.
many thanks for the kind words. I wonder how significant a difference Avastin has made to your maintenance? I find it really frustrating that Avastin is not funded publically in my country (New Zealand) given that it seems to make such a significant difference to the treatment of many women in NED/remission.
Oh gosh, I'm sorry to hear that. Well, it's really hard to say how it's helped or not, you know? Another friend of mine w exact same diagnosis, surgery and chemo was told she wouldn't need Avastin, but my own doc seemed too think it absolutely necessary for me. Is it the reason I'm doing ok now? I don't think anyone can say! In addition to Avastin I was on Olaparib for 3 years but taken off because blood work started to look problematic (possible leukemia.) So only on Avastin for a year now. Oh, and no leukemia!
This is such a distressing time, we've all been there. Things do start the look better once the big hurdles are behind you. My doc made the wise decision to just always put the next step in front of me and not give me too long term a picture. It was perfect for the way my brain works. I never even asked him a prognosis at the time! It was just next step after next step and that worked really well for me. I hope you find some sort of treatment rhythm very soon!
You are blessed to have a great relationship with your mother. That is so rare. It will take a while for the shock to wear off, but you don't need to spend hours reading up on cures. [For those of us with a diagnosis where] OC is incurable (for now) but we all learn to live with it and have a really good quality of life between treatments. The saddest thing is when fear of death takes hold and ruins those last years. Let the doctors look for cures and you focus on helping your Mum spend fun times with the people she loves. A fantastically uplifting book is Radical Remission. It talks about people who prolonged their lives through non medical means while still having their conventional treatments. [text removed by moderator] I found my brain was only ready to absorb that information about a year after my diagnosis. If my daughter had been lecturing me on no sugar or alcohol while I was facing imminent death, it would not have gone well! Bernie Segal's book Love, Medicine and Miracles helped me deal with the necessary unpleasantness of chemo and get less overwhelmed.
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Thank you for all the suggestions. Its definitely a challenge to transition to a new mindset like this, but im slowly getting myself into the right mental space for it. Many well wishes to you!
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Bernie Segal's book Love, Medicine and Miracles helped me deal with the necessary unpleasantness of chemo and get less overwhelmed.
A 5 year survivor ……..
Out of the Loop
Ovarian Cancer Podcast
5 years on 
