High-grade serous ovarian

Hi Suzanne53. Just looked, you don't appear to have a bio?

Barb xx

Hi Cadence,

I’m so sorry to hear of your situation. I wanted to reach out as I am in a similar one., hopefully we can be of some support to each other.

I am also in the second year of my PhD (I am an artist and writer) have two 12 year old children, am 43 and have recently been diagnosed with a recurrence of ovarian cancer after a long time. Mine is also in lymph nodes throughout my body and I have a pelvic mass. I’ve already had a hysterectomy so I am not being offered surgery, but start chemo on Monday.

As mine is a recurrence it isn’t staged, but I also feel I am not being given a lot of information. It seems that nobody knows if I will survive or for how long. As you say, because the presentation is rare. I want to survive, but I also know because this is a recurrence it is only treatable but not curable. It has been difficult to face that I have this forever now. It may come and go and I will require treatment over the years or it may not respond to treatment. The only way I am staying positive (and believe me, a lot of the time I am struggling) is to focus on being as healthy as I can and taking a day at a time to see how the treatment goes. I know it isn’t much advice but focus your energy onto the treatment. Know that you are doing everything you can to prepare your body and your mind. I have pain, so it is the only thing I can focus on in the hope it may relieve it a little. 

Talking to your daughter will be hard, I know. I have told mine that I am unwell and have cancer, but we as a family and the doctors are going to do everything we can to treat it. You don’t need to talk about how long you have yet, a day at a time, but the advice I received was not to play down the fact it is serious. You can get help and counselling for this also through your GP if you feel you need it. I also informed my children’s school to make sure they have support when they are not at home also. 

If you have more books to write, start now. I have just finished one as part of my research as I felt that if I didn’t write it and couldn’t complete my PhD, I at least wanted my thinking out in the world. 

You are not alone and I wish you lots of love. 

Hi . Hope you don't mind me replying. I'm from the Womb group. 10 months after my Hysterectomy I felt something wasn't right, was referred for a CT scan which showed my cancer had metastasised in my Omentum, Pelvis, Peritoneum and above vaginal cuff. I also had lesions on my spleen and liver. Reading the letter from my Oncologist to my GP my life expectancy (could have been weeks) depended very much on my reaction to the chemo. 6 cycles of which have just ended. So it's true, nobody knows how long we will survive. I'm fairly fit, walk 5 miles daily and just experience the odd aches and pains associated with a 68 year old

I had a scan after cycle 3 which showed my tumours had regressed by nearly 50%. I'm about to have a scan on 24th May and meet my Oncologist again on 31st May. I'm hoping for good news - I feel great , apart from peripheral neuropathy, I've been pain free and off the morphine for 8 weeks!

When I read the letter from my Oncologist which mentioned I was treatable but incurable and on palliative care I felt my world had come to an end - at 68 I'm older than you but too young to die. 

Hopefully I shouldn't need more treatment until Xmas - Yay bald again in winter! - you feel the cold believe me!!

I don't know how much future I may have but at the moment I feel really positive!

As you wrote to Cadence you are not alone so I too send you both lots of love.

Hugs, Barb xx

Hi Candence

I'm think it's more my story, I'm use my phone to message on here so maybe I'm not using the app to it's full potential.  

I actuslly think you have read it.

Xxx

Hello there,

I am guessing many ladies on here have been through what you are going through,although maybe not alone. You are presumably fairly young if yo have a 12 year old daughter. Reading your post you should be getting through your chemo now on the first round I hope that you are ok. That is very frightening before you have it for the first time,but once that plan is in place it makes it a little easier.

I  am 77 and was diagnosed with endometrial cancer, and I also had it in one fallopian tube which is high grade serous,which petrified me to begin with.,  but as time has gone on I have realised that there is so much the health service can do these days. I did almost five years after the first lost of chemo,and then it returned on the momentum, that was in April 2020, so i had  further treatment with chemo,followed by a parp inhibitor,which staved it off until April this year,when I was told that i had a lymph node close to aorta 15mm and another of 8mm on the peritinium, so my Oncologist suggested doing chemo quickly and I have just had my second cycle of this regime,surprisingly i feel quite well. Iam otherwise fit for my age whcih helps. What I am trying to say is that you should have more of a chance as you are younger,and you have the right way of thinking which is to be positive. Should you need to talk MacMillan are very good and you can call them. Take care & let us know how you ae getting on. Wishing you luck. Brenda

Dear Sandy,

I'm so grateful that you wrote to me. I have been slow to respond for all the obvious reasons (sickness, busyness) but also because sometimes being on this forum makes me more scared that I already am. I find myself incapable of going through the days if I don't believe I will survive longterm. So I struggle when I read things that shake my belief in surviving. I am heartbroken to hear that you have a recurrence, and that you have two 12-year-olds. There seems to be so much new medicine and treatment these days, I hope that something works for you. I want you to live. You are so very young. (Not that I have any less desire for older people to live!) I am 53, as I became a mother at 40. Now I wish I had begun earlier.I would love to talk with you more, as we do seem to have a lot in common! Kids the same age, as well as our PhDs and books (though I am a terrible artist!). I write every day. I finished the PhD novel, but want to change agents and this is an awkward time to be doing that! And I am halfway through the next novel, which I need to finish researching in Uzbekistan. I am just crossing all fingers and toes for us both, as I want us to watch our children evolve and become adults, and write many more books. Maybe I've been slow in writing also because I feel so close to your situation and and I don't want to think about how much time we have left. We never really know. I want time to slow down, to go on and on and on. Where are you receiving treatment? And in what part of the UK? I'm in London. If you might like to speak sometime, send me a message and I can give you my contact info. I don't want you to feel alone either. I told my daughter, by the way, and managed to be calm. I explained that it is serious but so am I, and that I have excellent doctors, that there is treatment, and that I will be very sick but I believe I will survive. And that I still plan to try to boss her around (increasingly difficult!). That weekend I was extremely sick from my first chemo, fainting several times, serious nerve pain everywhere, etc. and I hated that she had to see that. But it's the reality. I miss her every single second of the day and wish she were here with me. Anyway. I am thinking of you, and I have been, every since you wrote. Lots of love. 

Hello Cadence 

I am really sorry for what you are going through. I can feel you! I came to London for treatment in February away from home. My son and my husband are back home though they come to visit. 

This is my second round with High-grade serous! I had my first surgery in May 2021 then six cycles of chemo! The cancer came back, the surgery was not done right the first time! 

So, another surgery in March 2022 and started my second round of chemo last month! 

Hang in there, I know it is hard but you can do it! 

Hi so very sorry to hear about your reccurance. I hope you get back on top form quickly. May I ask what you found was wrong with the surgery please? Thanks in advance for sharing and best wishes xx

hi Cadence

i'm just new to the group as i've just been diagnosed with Stage 3C high grade serous ovarian cancer and like you - i'm so scared and i'm a worrier too. it's such an upsetting time. so sorry you are alone at this time - i'm lucky to be back in NZ near my two sisters and mum which are a great support. i so hope you get all the support you need. sending hugs from NZ

Dear Pipi! Thank you for writing. I am so sorry to hear about your diagnosis. I find it useful to focus on hope, the people who have recovered from this. I am in touch with a woman in LA who had the exact same thing and has been cancer-free since 2001. So it is possible for us! It is. We must believe this. Also to offer you hope, my CA125 was 722 before my first chemo, and it has already dropped to 40 after my second! So the treatment is working. I hope this gives you hope for your own treatment. I suggest ignoring statistics and just focusing on things that give you hope and make you happy. I am glad you have family support around you. My husband lived in NZ for five years long ago, with his first wife, and that is where his first daughter was born! It is a very special place for him. I would love to so someday. Please tell me if there is any way I can help you feel less scared, although that is a completely normal feeling and there is some relief in admitting it. I am also scared, but trying to push fear aside. Sending love from London!