So many questions?

[BigPhilFR]

My wife has been diagnosed with ovarian cancer! The correct name is serous adenocarcinoma low grade, which apparently is rare. She is due in hospital at the end of this month to have it removed by doing a full Hysterectomy also a appendectomy and a omentectomy also to remove a small section of intestine and some tumours from the top right dome of her diaphragm. We have been told she will be in hospital for 10 days but apart from that we know nothing? Any advice or own experience is welcome thanks in advance Phil.

[ZenaJ]

This is a very worrying time for you both. You, as a husband feel helpless as did my husband. Your wife is having surgery very much like my own in 2013. I can't really give much advice but I wanted to give you hope. I'm still here 9 years later and there are a lot of things now that were not here when I was diagnosed.

I wish you both the best. Zena

[BigPhilFR in reply to ZenaJ]

Thanks for the reply and for the hope. Also i hope that you are still ok.

[Realistic in reply to BigPhilFR]

Dear Phil, what would we do without our partners, it a big shock but together you can do this like Zena just told you l was dignosed in 2017 thought at the time that was it. But it isntThings are getting better all the time and it can be managed we can and do live with cancer.

I have a great life, and have been through a lot but lived to tell the tale. Not going to say it easy because it isnt but life can be good and with you by her side. Always ask questions

If your not happy get 2nd opinions we dont Always gel with everyone. Stay positive keep

Well she will have her ups and downs its a journey thats for sure. Dont stop your life plan things ahead. Together you can do this.

Love & hugs SheilaFxxx

[0462County]

Hello

I had a full hysterectomy 3 weeks ago. I was informed verbally last week that I have Stage 2B ovarian cancer. At this time I do not know what type of ovarian cancer. I will need chemo but I don't know as yet how much. You and your wife will get great emotional support on this website.

Best wishes.

[BigPhilFR]

Hi 0462county, sorry to hear about you diagnosis 😟 my wife is stage 3B. How long after the op were you up and about or aren't you? I wish you a speedy recovery and as you so rightly said I'm sure there will be plenty of people to talk to and give you advice if you want it or need it.

[0462County]

I was up 2 days after my operation. It will hurt your wife, however, she will be given super strength pain killers. The hospital I went to the staff were brilliant. Physio will come to see your wife and give her exercises to do. I only had a hysterectomy, I know your wife is having a couple more procedures. From my personal experience I got better day by day. I didn't think so at the time, however, until I look back and see how far I have come since my operation. Having chemo will no doubt set me back again.

Best wishes.

[BigPhilFR in reply to 0462County]

You are obviously a fighter like my wife and all the other brave women here so I'm sure you will get through the chemo ok. If not you know where we all are.

[0462County in reply to BigPhilFR]

Thank you. I received my letter from my gyne oncologist yesterday confirming my diagnosis. I am more determined to fight this condition. Your wife will have ups and downs , however, we are all fighters 😃.

[Newstart22]

Hi sorry for you both having to go through this. I was diagnosed with stage 3B high-grade serous cancer of my ovaries. I’m 7 weeks post debulking surgery where they removed my womb, cervix, tubes, ovaries & omentum plus a small section of bowel. It’s quite a lot to go through & there are good days & bad. I’m recovering well & feel almost 100% now just being careful with the lifting stuff. You will amaze yourselves with strength you never knew you had. Remember to concentrate on your own well-being too. You are both going through this. Wishing you both love & luck on this journey

[BigPhilFR in reply to Newstart22]

Heres hoping you continue on your speedy recovery. It sounds like you have had the same op my wife is booked in for and i hope she is as good as you with the recovery. Thank you so much for your kind words. Phil

[doodoolatrice]

I was diagnosed with low grade 10 years ago and had the big op. I was quite poorly for a week afterwards as my bowel went into a sulk so I couldn't stop being sick. Once I stopped being sick and was able to eat I felt much better but had to take it very easy for 6 weeks to allow my body to heal. This will be a difficult few weeks for you both but just take each day as it comes and you will get through it. Sending hugs x

[BigPhilFR in reply to doodoolatrice]

So glad you are still with us? It sort of answers one of my questions about survival rates! Did you have to have chemo also after the op? There has been no mention of it as such for my wife as of yet? She is so worried about her lovely hair. Returning the hugs with plenty more thanks Phil.

[doodoolatrice in reply to BigPhilFR]

I didn't have chemo immediately after my op as it wasn't deemed necessary. I did recur 2 years later so had chemo then and also again 3 years after that. If your wife needs chemo and is worried about losing her hair then she can try the cold cap. I lost my hair last time and I'm about to start chemo again so I'm going to give the cold cap a try. X

[lesleysage]

Hello Phil, as everyone here, we are sad that your lives have meant you are here but there is lots of helpful sharing of experiences. Also, many of us are users of Ovacome, the ovarian cancer support charity (which by the way was in the final three of the National Charity Awards Healthcare and Medical Research category) because their support in the form of a Freephone Support line (0800 008 7054), lots of useful information sheets ( Low Grade Serous has a sheet), Support Groups, Webinars by top class clinicians and lots more, all backed by a Medical Advisory Board) is there for anyone affected by ovarian cancers, patients, families, carers, friends and professionals in the field wanting to know more or be updated. My warmest wishes to you both and those to whom you are special; be kind to yourselves and take care.

L x

Diagnosed 2011 with recurrence 2013 plus a bowel cancer (no link whatsoever) last year 2021….and still enjoying life very much.

[Tumbledryer]

OC hubby here in 40s less than 12M in - you are probably in shock (as I was) as well as completely overwhelmed and fearful of the future. This is a hard time. A few tips that worked for us:

First rule - do not Google anything about OC survival rates. They are backward looking and so don’t consider scientific progress as well as other extraneous factors. Find a consultant that you trust and listen to them.

Second rule - your emotions are a spouse will be complicated (guilt, helplessness, fear, anger etc). You can get lost in the “what might happen” when really you need to live in the present. Talk to people who are not connected to your wife and open up - do not bottle it up! People who have been through similar experiences will be very helpful.

Third rule - get into a healthy mind routine of your own. Exercise or whatever is your therapy of choice in the loosest sense. Make time for you!

Last rule - stand by your wife’s side in all ways. She will amaze you, be a warrior, but don’t disappear feeling sorry for yourself.

We all hate being here (my wife refuses to even log into Ovacome), but there is some good progress being made with drugs and treatment a xx

[Lookingahead]

So sorry to hear your news but there is hope . I had a similar operation called Ultra Radical Debulking including removing the Omentum and all my large intestine . I woke up with an ileostomy . That was nearly 2 yrs ago . Your wife will be in hospital for around 10-14.days. I was warned about the number of ‘tubes’ attached to me . If you are allowed to visit due to Covid, please don’t worry about all of that . They are all removed before returning home to rest and recuperate. Once home , I had painkillers for about 3 months. She will get advice from physios and dieticians . I found it helped recovery to walk every day once home , just around the house to begin with as it helps circulation and recovery . I already had a fit-bit and found that useful to help increase the number of steps every day . I think I managed only 600 at first. I would guess that the operation will be followed by chemotherapy which is quite usual.

It is obviously a very worrying and scary time but please keep positive. There are many of us on this site who have been through this and are still living an active and normal life .

I had a pre operative assessment at the hospital where they explained everything in great detail so you should get more information then .

Do keep positive. Wishing you and your wife the very best

[Rosado22 in reply to Lookingahead]

I’m glad to read about your recovery from surgery as I am awaiting this type of surgery just finishing chemo and looking at whether my blood clots have gone.

[SopSinger]

Learn to trust your wife's healthcare team, they have done this hundreds of times before. It is indeed a big operation, but there will be a plan in place for her as she recovers. She should be proactive about asking for pain relief, don't wait until the pain is severe. She will probably have either a morphine pump (PCA, meaning patient controlled analgesia) or an epidural for immediate post-op pain relief. The physio will get her out of bed and walking as soon as possible. Chances are you'll (both) be amazed at how quickly she recovers, however, don't forget that the internal healing takes several weeks so she needs to rest every day as well as doing some very gentle exercise (preferably walking on the flat) every day. I had radical hysterectomy in 2006 followed by chemo (carboplatin only) and have never had a recurrence. Sixteen years now! There's a Facebook group (Ovarian Cancer UK) and a group for partners as well, if you're interested.

[Owenmeany]

Hi, I’m sorry to hear that your wife and you are going through this. I see you have had lots of replies from this amazing support group already. I’m low grade serous 3b diagnosed in august 2020 and had exactly the same op as your wife will have. Because of the bowel resection I had an infection and had to have a loop ileostomy (stoma) it delayed my recovery a little. After I recovered from the op I had six rounds of carboplatin chemo as a mop up and had the stoma reversed. I’m now on letrozole maintenance to hopefully delay/prevent recurrence and have been Ned since February 2021. I wish your wife and you the very best and remember to take care of yourself too. BW Linda

[Casamimosa]

Hi you've had lots of supportive replies of which I'm not surprised we all do our best to support each other, I had ultra radical surgery Dec 2020 and chemo after, I had chemo before as well, my hair thinned but didn't lose it all, we are all different. once I finished chemo it came back pretty quick think it's even bit thicker! Now on olaoparib and feeling pretty well. Ask lots of questions at the pre op assessment, they won't mind, it's a scary time and you want to know what to expect. My husband like you was incredibly supportive despite the shock of it all . You will be amazed at your wife's inner strength, I kept positive most of the time but it's OK to cry scream and rant too!! Look after yourself and be kind to yourself. It takes a while to get over( make sure she takes advantage of the pain relief offered you don't have to be in pain.) but as someone else said you don't realise how far you've come till you look back. Allow yourselves time to heal. Good luck and hugs

[Rosado22 in reply to Casamimosa]

I’m really glad to read your lovely reply to Phil as it is helping me to prepare mentally for similar surgery. Thank you 😊

[OvacomeSupport Partner My Ovacome Team]

Dear Phil

Thank you for your post. I’m really sorry to hear that your wife has recently been diagnosed with ovarian cancer. I can see you’ve had lots of replies from other members of the forum community which I hope have been helpful.

I just wanted to let you know that Ovacome is here to support anyone affected by ovarian cancer and this includes the family of those who have been diagnosed. If you or your wife would ever like to talk things through with a member of our support team, please don’t hesitate to get in touch with us. You can call our support line on 0800 008 7054, email us via [e-mail] or reply to us directly through this forum. We’re here Monday – Friday, 10am – 5pm, to discuss questions, provide information, or just have a friendly chat.

We also have a range of information booklets that may be of interest to you at this time. This includes a resource about surgery for ovarian cancer that can be found here: ovacome.org.uk/surgery-for-... . We also have a booklet about low grade serous ovarian cancer that can be found here: ovacome.org.uk/low-grade-bo... . This webpage has a recording from an Ovacome webinar in November 2021 with Dr Susana Banerjee, Consultant Medical Oncologist and Research Lead for the Gynaecology Unit at the Royal Marsden and Reader in Women’s Cancers at the Institute of Cancer Research. During this webinar, Dr Banerjee discussed latest developments in low grade serous ovarian cancer.

In addition, we facilitate a range of support groups, workshops and events for those affected by ovarian cancer, with full details about our Staying Connected programme available here: ovacome.org.uk/staying-conn.... Our friends and family group meet monthly via Zoom, providing a safe and friendly space to connect with others who are supporting a loved one with ovarian cancer. You would be really welcome to join us and there is more information about this here on our website: ovacome.org.uk/event/family... . We also facilitate a monthly online support group for those diagnosed with rarer types of ovarian cancer (any ovarian cancer that is not high grade serous). If this is of interest to your wife, please visit: ovacome.org.uk/event/rarer-... . If you have any questions about getting involved, we would be very happy to tell you more about any of our support groups or events.

I hope this information is useful. We are here to support you so please let us know if there’s anything we can help with.

Best wishes

Annie – Ovacome support

[AuntyOrange]

Hi Phil, most things have already been covered above but I just want to add a couple of things:

You are both going through this & it will be very stressful. Be considerate of each others' moods. Don't take offence when either is a bit snappy. We're all human & even though we try to be there 100% for each other, it doesn't always happen.

And in case you haven't realised already, men & women ARE different haha.

My hubby was & is wonderful but I'm sure there were times he wanted to run away, so did I. We're still here after 7 years of fighting this together & it's ongoing.

Keep things as normal as possible. He takes me on drives to the ocean or parks where we walk & usually have lunch or coffee in an outside cafe. Covid is an added stress these days so we try to avoid crowds.

During my chemo & operation periods (I've had two peritonectomies, 2015 & 2019 & chemo only in 2021) my husband set up a daily then weekly group email for family & friends to keep them informed so we weren't inundated with phone calls. They were all very grateful.

I am currently on a maintenance drug (Avastin) until I can get on a PARP Inhibitor.

Please don't feel overwhelmed by all the questions & information going around in your head. Just ask on here as each question comes up. The people on this site are fantastic & so knowledgeable. No question is too small or too big.

Good luck with it all.

Sending love to you both.

Irene xx