High-grade serous ovarian

Hi Cadence. I hope you don't mind me answering your thread as I'm not from this group. If I could give you a hug I would so a virtual one will have to suffice. It must be so hard to be apart from your husband and daughter at this really difficult time, I feel for you.

I'm from the Womb group and had  hysterectomy in 2020. After histology I was classed as Stage 1B/ grade 3 serous and was offered just 3 Brachytherapy sessions. Fast forward 10 months and my cancer has metastasised to my pelvis, omentum, peritoneum and vaginal cuff with lesions on spleen and liver. I started chemo in early December and had a scan after 3 months which showed the tumours had reduced to 50%. Just finished my final 6th cycle and I feel really well having another scan at the end of May and Oncologist consultation a week later. 

I just wanted to say that despite all of this I feel I've a good few years left in me (I guess I'm much older than you at nearly 69) and will fight every step of the way to survive until I'm ready to go. It was a heck of a shock when I was give my diagnosis, no-one in my family has ever had cancer, but I've got the mental strength from somewhere to be positive and so must you be.

I hope some of the ladies here come along to answer your post and compare notes on treatments as mine would have been different.

I hope your chemo goes well, it's not as bad as I thought it'd be. I'm sorry you'll be on your own through this in less than comfortable accommodation.

I also hope telling your daughter about your situation goes well and she isn't too traumatised. I'm sorry, I wish I was more able to offer advice on this situation.

Sending hugs, Barb xx

Dear Cadence

Firstly I would like to welcome you to our ovarian cancer group…albeit a ‘club’ no one wants to be in.  

I read your post when it first popped up, and it brought tears to my eyes…I am so sorry that you have received such a horrible shock when you are in London, away from your husband and family.  I send you my very best wishes for healing,  and for comfort and compassion from those around you.

Of course you must absolutely prioritise getting the chemotherapy; I have just completed 6 months of chemo, and although it was hard-going, it was not as bad as I expected.  

I was diagnosed with high grade serous carcinoma of the ovary in July last year, age 65.  I had surgery in September (removal of tumour, both ovaries and Fallopian tubes, uterus/cervix, and omentum.  It had spread into one Fallopian tube, and to the surface of my bladder, though without infiltration of the bladder.  The surgeon was able to remove the layer of cancer without damaging the structure and function of the bladder).  It was stage 2a.

I have been very fortunate, in that I am now in remission, and will have 3 monthly checkups for 5 years.  I will hope and pray that you will be healed, and likewise find yourself in remission. 

I am guessing you are quite a bit younger, given your daughter’s age…this makes your diagnosis even harder to bear, and to cope with treatment over the coming months.  I am sorry you feel so alone and isolated…you said you are in London; it is at least easy to get around London, or out of it, with all the transport links.  

It is hard to know what to say, being a stranger.  I hope you will continue to post…I wanted to reach out to you straight away, but I didn’t know how to put it.  Despite my age, I had the help and support of my own mother (88 years) and also my son, who is the closest to me, emotionally.  I also had much support and encouragement from my brother, and many friends, particularly at church.  It is so hard for you to be away from your family and friends.  

I would like to say, there is most certainly hope…medical advances in ovarian cancer are really noteworthy.  I did not believe I would recover, but I did; in fact, the medical and surgical teams at the Royal Marsden hospital assured me that the treatments are so much more effective now, I should expect to recover.  

I don’t have advice, as every case is different even with the same diagnosis.  It is like feeling your way, without a map, but you are not alone, even though it feels like it some of the time.

I do send you every good wish, and a big virtual hug…I will pray for your healing and full recovery. 

Yours in friendship,

Sue xxx

Hello Cadence,

I too have high grade serous stage 3, the news was delivered just after Christmas but I’d had a diverticulitis flare, ended up in hospital and was told there were ‘areas of concern’, so I knew.  It was found initially in right ovary then spread to peritoneum, around the lower quarters of liver but within peritoneum, diaphragm, lower bowel.  Sounds scary doesn’t it.  BUT, I joined the Facebook ovarian cancer group and Target ovarian cancer plus the BRCA gene group. The later only being relevant if you have a BRCA mutation.  The help, information and support on these groups is magnificent, with every single person on a similar journey.  Whether it’s their first line of treatment or whether it’s a recurrence.

I’ve had 3 rounds of chemo (Taclipaxel and Carboplatin).  My neutrophils ( white blood cells) plunge to the point where the next chemo has to be delayed but my lesions/tumours have shrank and my CA125 is back to within normal range.  Going forward I will have a complete hysterectomy, removal of omentum and possibly a colostomy.

The treatment absolutely works and will enable you to have a life.  

You are a novelist and could use your experience in your work to help you process this. Certainly women, and men, if I’m honest, could do with help in understanding the journey, feelings and emotions we all go through.  You are possibly in a good place to describe exactly how it is.

 Everyone has said how strong I am….really? No, I’m just surviving each day, painting on a smile, putting one foot in front of the other, like most of us have to learn to do.  You have a choice Cadence. Look in the mirror every morning and say out loud to your reflection that this is a set back on a path of life, definitely not the end of the road.  At times you’ll feel vulnerable and afraid, that doesn’t make you weak, it just means you’re human.  Garner as much support from those around you. Some of my friends have faded away, some have stepped up and stayed.  

I’m sorry your husband and daughter are not with you and I hope your situation changes very soon in this regard.  Telling your daughter will presumably be age-appropriate but a TV personality, Julia Bradbury with breast cancer showed on her televised documentary this week that it can be done so that young children are able to be informed and prepared for Mums treatment.  My son is 26 and I dreaded breaking down and seeing him looking like a frightened child.  I told him it was 100% treatable and that I was up for winning the battle. 

The Royal Marsden hospital in London has a meeting/coffee place for cancer patients/survivors and I believe a counsellor.  Look into possibly visiting.  I’m in Kent, not a million miles out of London - don’t hesitate to reach out.

My last tiny piece of advice is to do something every day that makes you happy, it really doesn’t matter what it is but it affirms that life is worth living for YOU.

Hope I’ve been helpful Cadence.

Lorri X

Hi Candence

Please read my bio as it sounds like we have a similar diagnosis.  I'm not one to tell other what to do and what not to do.   I went straight for surgery and feel making that choice is the reason I'm still here.  Sending you positive thoughts and you can do this.

I am so grateful for your kind words. Forgive my slow response - my first round of chemo shattered me. I had what my oncologist calls a "highly atypical" response to chemo, and kept blacking out and waking up on the bathroom floor while alone. I spent all weekend in A&E with severe diarrhea and nerve pain shooting through every part of my body, top to toe, as if I were conducting enough electricity to light up Manhattan. It has finally faded, but I haven't been functional the past week. I think they will change my dose/treatment at next chemo, as the Paclitaxel is very mean to me! Every time I eat I have severe stabbing pain. I am SO GLAD to hear you are in remission! You give me hope. I am 53 and in good health otherwise, so I plan to survive. I think we all must plan to survive. I can't bear contemplating otherwise. (But rest assured I am working on a will just in case!) I hope your tests stay clear and cancer-free! Thank you so much for your words. 

I just wrote a long reply to you but now I can't see it.... did you receive it? xo

Hi Lorri! Apologies for slow response. Whacked by first chemo. I had what my oncologist calls a "highly atypical" response to chemo, and kept blacking out and waking up on the bathroom floor while alone. I spent all weekend in A&E with severe diarrhea and nerve pain shooting through every part of my body, top to toe, as if I were conducting enough electricity to light up Manhattan. It has finally faded, but I haven't been functional the past week. I think they will change my dose/treatment at next chemo, as the Paclitaxel is very mean to me! Every time I eat I have severe stabbing pain. I told my daughter, and managed to be absolutely calm with her and told her I plan to survive. Because I DO. So far she is okay, but this will take a while to process. She is in Tashkent now, staying with friends, and thinking of her there without either parent (Tim is here because I keep fainting and can't be alone) makes me sob uncontrollably. I want her here. I will check out the coffee place at Royal Marsden (my team is at Queen Charlotte's and Charing Cross Hospitals). I am glad you are doing so well so far! You are an inspiration. You are likely not up for traveling but if you do end up in London for any reason, I'd love to meet. You are very helpful! I feel so grateful every time someone is nice to me I burst into tears. I was telling my GP yesterday how grateful I was to her for ordering that first CA125 and I couldn't stop crying. Good times! But I am using humor to cope and of course writing. I am keeping a blog on my Caring Bridge site for people to look at and see how I am. Hope things continue to heal you!!! xo

Thank you Suzanne! I tried to find your bio but couldn't... maybe send me a link?

Hi Cadence. Sorry I can't see your reply anywhere. ?!?

Barb xx

Thank you Cadence, and I am SO sorry the chemo has affected you so badly.  It is horrible stuff, just awful, and yet it is that and the surgery that cured me.  I very much hope the medical team can successfully adjust your chemo drugs, and reach an equilibrium between being therapeutic and not making you feel so physically ill.  They usually manage to achieve that.  

Wishing you every blessing and good wish for your recovery.  Take care, and stay strong.

Xxx

SueB.