My partner has pretty much all the symptoms of ovarian cancer, with the marker going up. We have been to two cancer specialists both saying “they don’t think it’s anything to worry about”

but her symptoms are getting worse and I’m really worried about her. Has anyone else had this happen? And what did you do to get the drs to do something straight away instead of taking their time. I’m worried by the time they realise they were wrong that it will have progressed too far for them to act on it. The only one that knows it’s something serious and is trying to help as much as he can is her gp

These are her symptoms so far:

2 cysts one on each ovary that are not going away and growing

constant severe pelvic and abdominal pain (her gp has her on strong slow release pain killers for pain management)

bloating, indigestion and changed bowl movement

constant nausea

hot flushes/night sweats

constant thick discharge

getting full easily and losing appetite

Any advice would be much appreciated as we are stuck for what to do from here!

I was diagnosed with stage 4 ovarian cancer in October 2017 and had major surgery on 18 December 2017. I had the mass removed, lost a part of my bladder, small and large bowel and removal of my spleen. months chemo and 6 months targeted therapy.

A month or so after the completion of my chemo I had a PET scan showing I had spots on my liver and my CA125 was escalated. So I decided to have my first trip to Norfolk Island in April) May 2019 for 4 weeks. I spent another 2 weeks in Brisbane with my dad who passed quietly in hospital. On my return to Perth another PET scan was performed and low and behold NO spots and my tumour markers were excellent! In remission says my oncologist! F*#k how did that happen! He was as shocked as I was. So I'm back on NI ... reckon this place has improved my health, stress levels, diet etc.

Forgot to mention had a double mastectomy in 2013 .. on my 60th birthday !!

I'm over the moon ... But (always a BUT) still in the back of your mind and any health disruptions takes me back to being diagnosed. Not any easy road and really f#$ks with my head. I'm sure you can all relate.

But in the meantime I'm trying to be healthy, happy, relaxed on my little island in the South Pacific.

Please, everyone, take care and try and live in the moment.

Cheers Sharon

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.

Just saw a post from Karen and Sirin and Helen! Yay we are all still here. I am now in Massachusetts receiving treatment with the Dana Farber in Boston. Yesterday I had my infusion of Avastin, CA125 11, all numbers excellent but magnesium – 1.4 (range 1.8) so I started a magnesium oxide 400 mg supplement today. 21 days previously I had an infusion of magnesium. I swam today. Breakfast: organic pancakes with organic maple syrup, blueberries, bananas; cup of black coffee. Lunch: salmon/mixed lettuce/carrot/cottage cheese salad; green tea/lemon/ginger. Dinner: black bean soup/onions/garlic; spinach/basil/cilentro salad; Ritz pita crisps with white sharp and pepper jack cheese slices. Later: dark chocolate and apple slices.

I was so curious about people’s lives when I was first diagnosed 10/13/2016. This is why I share such detail. How were people living. Well I am living quite well thank you very much.

Anyone else find they make comments not appreciated by the infusion nurses? I am taking a sign next time and not speaking with them – just say thank you on my sign and that I am in a silent retreat. This way I will not get their attitude and they won’t get my nervous chatter they apparently don’t appreciate.

The joys of cancer one day at a time.

Healthy Now Sandra

Chemo took it's toll on me, I had 2 blood transfusions, 2 infusions of magnesium and a platelets transfusion. Not to mention putting on 12kg from the steroids.

Due to my other conditions my oncologist kept a close eye on me with blood tests every month and a follow up with her monthly. Since finishing chemo I have done a number of exercise programs including the Cancer Council's Enrich program and I am currently doing Active Survivor twice a week. So I was just starting to feel back to my normal self and everyone was commenting how well I looked, plus my hair had finally grown back enough to have it cut into a style.

As I said before my oncologist has me see her monthly, so my CA125 was 12 then 13 4 months in a row, then 21 then 35, she told me that that in itself wasn't a problem but we would continue to monitor it. Then just over 3 weeks ago I experienced pain in what I would call my 'Muffin top' area, it wasn't bad pain but continued for a couple of days and then intensified on about the 4th day. I instinctively knew something was wrong so I rang the cancer centre and pulled my appointment with the oncologist forward a few days. I had a blood test and then went to see her hoping that she would tell me I was suffering from a case of Stupidity and Paranoia. My CA125 was 48 and when I told her my symptoms she said that it looked like my cancer might be back! It was a year to the day since I saw her for the first time and 6 1/2 months since finishing chemo.

I had a PET scan and I have 3 spots 10mm in size near my liver and gallbladder. She said we will do another 6 rounds of just the Carboplatin every 3 weeks depending on my bone marrow and then I would be taking a drug called Olaparib (I'm BRACCA 2 positive) but I don't know what happens from there.

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

My name is Kanwal, I was diagnosed with ovarian cancer in Dec 2016. I had 3 cycles of Chemo then surgery debulking/ hysterectomy and then again 3 cycles of chemo.

My CA125 at the start was 192, which which stayed in one digit after surgery. I have been having 3 monthly checkups. In March my CA125 was 6. In June it went to 24, so had PET Scan which resulted in reoccurrence in abdominal lining (peritoneal). Gyno/onco said that it is Chronic.

I'm back to Chemo for 6 rounds, already completed round 1.

Is there anyone going through similar situation? I need some reassurance and guidance. I'm worried.

Thanks

I’m starting chemo again tomorrow as it’s been 5 weeks since I had surgery. Hopefully I won’t have to many side effects this time round. My hair had started to grow back so I’m hoping it won’t fall out again, not much I can do about it if it does. But I have been using a shampoo to stop hair fall so who knows. I’ll try anything once or twice. Not looking forward to stating chemo but looking forward to seeing all the oncology nurses they do make the day much more pleasant. My ca 125 level has come down to 20 (when I was first diagnosed it was over 2000) so I’m hoping that will drop more. Doc was pleased with results because I have responded really well to everything so far. Anyway on a different note I would love to hear where everyone is from and how everyone is doing. I’ve noticed a lot of people haven’t posted anything for a long time and I’m curious as to how they are going. Maybe one day we can all meet up for a cuppa. Anyway I’ll let you all know how I go With chemo. Dionne

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 writing for my bestie. She was diagnosed with breast cancer 5 years ago had mastectomy & chemo, stage 2 estrogen driven, no lymph nodes involved. She went on Tamoxifen but she had awful joint pain so stopped. She decided to have a hysterectomy to help to minimise ovarian cancer. Forward 5 years,  had a few problems with joint pain & ruination  so decided to get bloods done earlier than usual & her tumour markers were up. I think they were 90 meant to be 30 could of  been CA125? Anyway had ct saw shadowing in stomach area, had pet scan & it said widespread omental stranding with some ascites. Highly  suspicious  for peritoneal metastaties? Unknown primary. All her organs are clear as well as her lymph nodes. Could someone please try & explain what this means. Can you get ovarian cancer with no uterus? Is it secondary from her breast cancer. Is it cancer? I just want to be prepared so I can do the best I can for her. Thank you all so much for any of your thoughts.