I'm absolutely terrified my Mum has cancer. She is 62 years old.

Last week my Mum went to the ED with severe pain in her leg. They found that she had a massive blood clot and didn't know what could of caused it. She then had a CT scan which revealed a large 11cm mass on her right ovary that had spread to her belly button. They then took blood tests for tumour markers which all came back normal. The doctor said to us that they would of expected it to be very high in a malignant case but sometimes bloods can still come back normal.

She then had an ultrasound and the sonographer said that the mass was worrying but no fluid was present and the doctor said in most but not all cases fluid is usually present with malignancy. She also had an abnormal urine test but the doctor didn't discuss it.

Mum is now booked in for a biopsy tomorrow and won't know the results for two weeks. Apart from the DVT (which we have a strong family history of) Mum doesn't really have any symptoms at the moment.

Has anyone been in a similar situation?. Could it still be cancer?. I'm so terrified. I can't eat, sleep or even think right now. We have no family history of breast or ovarian cancer.

My 49 year old sister was diagnosed back in October last year. I just discovered the fact that she has ovarian cancer.

How can I best support her and her husband in this journey? Are there support groups for family?

Thanks

I never suspected I would find myself on an Ovarian Cancer forum seeking support - but these are unique times we are in, after all.

Originally from Toowoomba, QLD, I have been living in the UK for the last 18 years. My 71 yo Dear Mum(DM) still lives back near Toowoomba and we tend to take turns visiting each other every couple of years. DM has grown to love travel and calls herself a "World Traveller"! On 7 Jan this year, I got the phone call I always dreaded getting living halfway round the world- it was DM to tell me she has been diagnosed with OC Stage 3. Symptoms??? The usual suspects - abdominal pain, some bleeds, ascetic bloating.

As a registered nurse in the army, I'm quite composed and professional and like to think I handle stressful situations well, but soon realised this all goes out the window when its a family member, especially your DM. I went into practical mode for her - contact the OCA and got fantastic advice and lots of resources to send to her in Toowoomba. The team on the end of the email when we got the first diagnosis

DM handled 10+ weeks of chemotherapy like a trooper, being much stronger and more positive than I ever gave her credit for (and that I probably came across as!). I suspect she's had a relatively easy chemotherapy journey than some of the stories we have read- no nausea or similar side effects. She has lost her hair but take it in her stride. I think she quite likes the lil' caps she now wears! She has smaller weekly doses rather than every 3 weeks.

This Monday (11 May 20) DM heads to Brisbane for surgery to have 'everything he can see with cancer on it' removed (her consultants words!). Unfortunately, we've just heard her post-chemo scan has picked up likely cancer on the liver, bladder, bowel and diaphragm :(. As always, she is keeping positive.... and that's a motivation for me to ensure I do as well. I can have my moment when the Skype turns off......!

COVID-19 has exacerbated a bad situation and made it worse as I would be in Australia supporting her as opposed to still being here in the UK. The solace is she is from a small country town with all the benefits that brings at times like this- a close knit supportive community who will rally around and the family back home.

Whilst DM is not completely techno-naive, the forums I suspect would confuse her. lol. So, any messages of support would be greatly welcomed. I will login and show her my screen over Skype. Whilst I, her friends and close family can be sympathetic, sometimes all you need is to hear from is someone who has been through things themselves and speaks with the authenticity I'm not able to do.

Many thank for taking the time to read this... I'm looking forward to my DM being a cancer survivor and coming on many more trips to UK to see me :)

Nurse81 (Patrick)

I'm Allan and my 26 year old daughter has been fighting Ovarian Cancer for three years. Sadly we are running out of hope as all treatments have been unsuccessful. She has started working with the palliative care team and this is very confronting.

I am not sure if there are many men in this group or fathers but thought I would explore what support I can get. My decision is made more difficult by the fact I am divorced from my daughters mother and they ( mother and maybe daughter) are making it clear they don't want me closely involved in this process. Even visits are discouraged. I have a strong support network but this situation is so so hard.

Thank you for reading

Yesterday she had her first appointment with an oncologist who visits Darwin Royal hospital every month. The treatment plan is for her to go to Brisbane where hopefully she will be able to have a hysterectomy in 3 weeks, there is another tumour showing in her remaining ovary and the doctor said they can’t stage the cancer until after this second operation. She is a public patient and will be going to the Mater hospital for the operation and follow up treatments.

The biggest concern for her at the moment is to find somewhere to live in Brisbane now/ asap and for the duration of treatment which could run into months.If there is anyone living in Brisbane with any ideas could you please let me know. I’m new to this forum and not sure if you can send private messages?

My daughter is happy for me to put out feelers on her behalf so at least I feel I can be of some help to her. She has no permanent address in Darwin and has been staying with friends and then in a unit for a month which she has to leave on Friday. She has done a lot of house sits through Aussie House sitters and has received some excellent reviews, she is single and into healthy eating and yoga. She is self-employed and runs her own small art and design business which has been put on semi-hold at present, so there is little income happening.

Needless to say all our lives have been turned upside down and due to being significantly disabled I am not able to hop on a plane and be with her and help which is a great sadness and frustration, my husband is my carer. We are all hopeful that the cancer may have been found early.

Thank you for reading, Rosemary

I’m 56 and I’ve just been diagnosed with ovarian cancer three days ago, but  I don’t know what stage it’s at just yet.

My doctor has sent off a referral to Brisbane and marked me as urgent. I just have to be patient now and wait for an appointment.

It came as a shock, but I guess that’s the same for everyone.

I’d been having digestion issues, constipation, needing to urinate more frequently, and that’s why I went to the doctor.  When she was examining me and pushed on my abdomen she felt something.

She ordered blood tests and sent me off for a CT scan  I didn’t even know we had a CT machine in our small town but I was lucky we did.

When I went back for my results she said I’m sorry but it’s ovarian cancer. I have what appears to be a 6.5cm growth on my ovary. Hoping it might be a cyst and not cancer I asked about the blood tests.

She had done one to look for cancer markers in the blood. Apparently normal would be about 30 U/ml and mine was 420 U/ml.

I have 1001 questions but for now the most important one is how and when  to tell my family.

I’m the sole carer for my grandson and it’s his 15th birthday on Saturday, then Easter, so definitely not until after that. But do I tell them before I get to see a specialist, or wait until after that? How do I break the news? I want to be as calm as possible when I tell them, so rehearsing something beforehand is probably best, but I don’t know what to say. Any advice would be wonderful, as I’m emotional and clueless right now.

My boyfriend's sister was diagnosed with ovarian cancer in 2017. We are waiting on some tests as it possibly had come back in the abdomen and we( the family ) have done some research on HIPEC.

I'm wondering if anyone is having this done at Peter Mac in Melbourne and who their surgeon is ?

Thanks in advance and wishing all good health.

Lina

You feel like your body has turned on you.  Suddenly you're going through menopause and have more in common with women twice your age.  When people find out what you have been through they are shocked and horrified because you are so young.  Prepare yourself for sympathetic looks and comments from strangers.

Even though you feel like you are going through a never ending hell, there are positives.  People will realise you are one of the toughest people they will ever meet.  Not much will upset you, life's small things take on a different perspective and you learn to make the most of life while you can.

Keep wearing bikinis, your scars are impressive.

If it makes you happy, do it.

If you want those shoes, buy them.

Nikki

1) If my cancer had not been found in what was thought to be a healthy ovary at such an early stage my outcome would not have been as positive.  I feel blessed to have had extended time with my family.

2) I no longer work due to fatigue from chemo etc but find I am busier than ever.  It might take me 3 times as long to do something but I feel great when I have managed a task.

3) Although there are some confronting discussions that have had to be had, I don't dwell on the future too much as I find worrying about the future robs me of pleasure in the present. Equally I am not stressing about things I cannot change from the past.

4) I am not perfect -far from it and every now and again I have a pyjama day but mostly I try to make sure that each day I have at least one thing that gives me a reason to I get out of bed, get dressed and face the world.  It is too easy to give into the negative path or thoughts can take us.  I also put news of cancer breakthoughs etc in prominent places to remind me that I just need to stay healthy and contain the tumours until the breakthrough in Ovarian Cancer gives me another positive option.

So that's a little about me, I hope I haven't waffled too much

I would really appreciate to hear back from anyone who has similar experience to my mum or anyone who has had Caelyx chemo and can give us some tips about what to expect

Thankyou

But then I had the same pain 4 or 5 times after that. During this time I kept thinking it was something I'd eaten. Then my sister was getting married and I got busy. The last time it happened it was in the middle of the night and freaked out because this time I couldn't blame food allergies. I went to my regular GP who felt my stomach, sent me for urgent CT scan, blood test and ultrasound. Turns out I have a 12 cm complex cyst. I had surgery on 30 August 2018 to remove it. It's going to be 3 weeks on Thursday, 20 September 2018. I'm going to have my first chemo session on 21 September 2018. I'm a bit scared and I'm wondering how bad it'll be.

I'm 35 years old, no kids or partner. My mum and sister are my rock. I'd never had an operation in my life, and boom! The first operation I have is this one. Really sucks. But my doctors say they are looking to cure me. I'd be grateful to hear other people's experience with chemo. I'll be given 6 rounds of chemo, each session will be 3 weeks apart. The drugs I'll be given are called Paclitaxel and Carboplatin.

I’m Julie and I’ve been diagnosed with Stage 2c ovarian cancer

It’s about three weeks since I made the appointment to see my GP, two weeks since I first spoke to the gynaecological oncologist and one week since my surgery. It’s weird how it’s all happening so fast, but some days seem so slow

Thankfully, the surgery went well, recovery has been mostly good and prognosis is positive. I’ll start chemo in a few weeks.

I’m 37 years old with two kids under 5. All my fears and concerns centre around them. So far, they’re coping well. We’ll just take each day as it comes and try to prepare them for the chemo journey ahead.

This website has been very useful and reading through your stories has been both informative and calming.

Thank you!

I was diagnosed with Stage 3 ovarian cancer in August, 2014. I had a radical hysterectomy and omentum removed. This was followed by 6 cycles of chemo and Avastin. I had a recurrence in May 2016 and had another round of chemo. I became allergic to carboplatin so went on to cisplatin. Treatment was successful. I've had another couple of rounds of chemo since then.

I am now currently on an oral chemo called Cycloblastin and keeping fingers crossed that it has a positive effect.

Life is still good with this nasty disease. One of my daughters got married in Feb 17 and my other two daughters are getting married, one in May and the other in June. I've got my dancing shoes ready! But I'm hating the impact this is having on my beautiful family and friends. Hard lessons to learn.

I had got just past the 2 year mark when my Ca125 went up. On a PET scan there's only a small spot between my liver and kidney and my gyny-onc and oncologist have gone to ground to discuss what the plan is. I had finally started to feel like I could relax and live again. I feel angry and frustrated and unsure how to live in this "unmoored" place.

Any ideas?

kath

I am just about to have the last treatment of my fourth round of chemotherapy. I've been at this including a trial of olaporib which gave me a two year break from actual Chemo.

Dont get me wrong but the longer this goes on the less support I seem to get I think I have just been sick for too long and my family's forgotten and just don't ask anymore. I am so lonely  I work full time around treatment so don't qualify for any concessions even parking at Peter mac is full price for me..I am the only income for the family because my husband has chosen not to work anymore but has not chosen to take on any extra at home . It's hard to explain to outsiders that I don't get help  I made the mistake early on saying that I wanted things to be normal  and my family took it literally  at the moment I just feel vulnerable because Chemo ends tomorrow and I don't know what's next for me  I'm scared the cancer will start to run and I won't beable to catch up where does a cancer patient get help when they work seems like you have to give up to get a break I have to use my holiday pay to cover the time I need off  so if I could get a break I don't have the pay to cover a holiday

sorry for whinging but I have no outlet

My mom has had a recurrence.  The doctor is talking parp-inhibitors in a carboplatinum sensitive person.  Anyone here doing parp-inhibitors?  They seem amazing.

At last my eyelashes grew back, but the hair seems very slow.  I always had baby fine hair.  It looks darker and is only about an inch long, so I still wear headwear as my ears seem to stick out. (Not used to seeing them!)  I used to have a jaw-length bob.  Such a pain trying to match headwear to my outfits.  But when I think about it I used to get it trimmed about every 8 weeks about an inch, so it will take months to look decent.  I had a 75th birthday recently and very short is not a good look on me!

Hope you are getting encouraging results from your treatment.

Also, she has a meeting with a doctor this afternoon over the phone and wondering if people have advice on questions we might not have thought of asking.

Thanks everyone.

I've been processing a bit lately. I'm at the 3 year anniversary of when OC was suspected for me (3 years post treatment in July). All is going well and I've had the BRACA testing done and I don't have the mutation. My check ups are now 6 monthly with no blood tests since my CA125 never elevated even when I had cancer.

I'm feeling a tad guilty that I have gotten off so lightly. A year after my diagnosis my mum had to have her ovaries out (thankfully her tumour was benign) but now she has been diagnosed with breast cancer. Her mother died of breast cancer in her early 50's - my mum is in her early 70s.

Starting to wonder if my daughter (25) should get the BRACA testing done - would there be any point given mine was negative and there is absolutely no history on my husband's side of the family?

I know they are finding out more all the time and I wonder if there aren't more genes involved than just the BRACA ones.

Kind regards

Rachel

My first chemo alleviated the discomfort of the ascites (thank god), I felt good for the first 3days, then day 4 hit like a ton of bricks, I was so nauseous all day and the medication didn't work. I ended up in hospital that night on intravenous fluids and anti nausea medication, was released the next afternoon. The next 4 days I felt pretty crappy but then there was light at the end of the tunnel and I miraculously felt better. I then preceded to prepare myself for the next round both mentally and physically (making sure I have the supplies on hand), I was supposed to have my 2nd round last Friday but unfortunately my doctor rang and said that my platelets hadn't recovered enough and I would have to wait another week. I had my blood test this afternoon and fingers crossed my chemo will go ahead on Thursday. I just want to get this over with and the operation to get this stuff out of me!

Hayley, Support Coordinator, Ovarian Cancer Australia