New to this and getting my head round the speed of the disease, & perhaps not the diagnosis

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Hi - I didn't think even a couple of weeks ago I would be logging onto the Macmillan site

I am 59 years old and in February 2022 I first went to my GP with bloating, severe back pain and right pain under my right ribs when I laid down in bed at night. I was treated for acid reflux/potential IBS and eventually referred to a gastro doctor, I was discharged with the thoughts that my issues may be stress or wheat related, but was re-referred in July when I failed a bowel screening test

Mid December a colonoscopy was performed with biopsies taken - just before Christmas II was advised my tests were clear, but I now had a swelling the size of half an orange on the left side of my lower pelvis, so raised this concern and was sent for a CT and CA125 bloodtest - On 30/12/22 my follow up apt advised that my liver etc were clear but there was a mass on the left ovary and I was being referred to a gynacologist

6/1/23 - gynaecologist seemed quite annoyed that I had been visiting the profession since Feb the year before as I now had a 22 cm mass, he also examined me and confirmed as I suspected that this appeared larger and was up my right hand side towards my ribs

I was then referred to the local hospital - who were to send my case to be discussed at the weekly consultants meeting to look at treatment options - The first meeting was missed as the timing of my CT scan missed the cut off time - The second meeting was missed as someone failed to send on my CT scan - I have been discussed today and may have a meeting with a surgeon next week but surgery could be a week away. They are talking about a full hysterectomy,tubes,cervix,ovaries - debunking of the mass, as until they open my up they are not sure what they will find, a bowel resection, and potentially chemo, again depending on the op

Despite being difficult to eat or drink, due to the size of the mass, I am coping quite well, despite being a little bit terrified.........................................but can't help but feel that this could have been spotted earlier, and wonder how many other women are missed with 'IBS' and please take a couple of paracetamols and you will be okay

latchbrook over 1 year ago

Hi Shimsha and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I haven't had the same type of cancer as you, but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' your post back to the top of the discussion list where it'll be more easily seen.

Wishing you all the best with your upcoming surgery.

"Never regret a day in your life, good days give you happiness, bad days give you experience"

Gauri over 1 year ago

Hello,

I had the same operation but I did not have the mass. I had parts of bowel removed and had ileostomy. I also had 6 chemos. It is a big operation and I was in for 10days.
contact me back once you had operation if you need any assistance. Good luck x

Blossom1 over 1 year ago

Hi Shimsha, I was told for 3 years that I had IBS and was seeing a Gastro consultant. I was only diagnosed because I went to my GP in pain and luckily he was on the ball, did an immediate CA125 blood test and urgent ultrasound referral. That resulted in an urgent referral to gynaecology. I had ascites, two tumours the size of grapefruits and was told I have stage 4 grade a high grade serous ovarian cancer. This was in August 2021. I had radical debulking surgery and was in hospital for 13 days. I have had 8 sessions of chemo and am now on Niraparib. Had the Gastro man listened to what I was saying I feel it would have been spotted earlier. My surgeon said that there should be a process where every woman over the age of 50 should automatically be given a CA 125 blood test but this doesn’t happen. I am currently awaiting the results of a CT scan as I am afraid I am facing a recurrence. Good luck with your op and don’t be afraid to ask lots of questions. I am sure your oncology team will look after you. Xxx

Diney over 1 year ago

Hi Shimsha

I too was told I had IBS and told to try the Fodmaps diet. I did do a poo sample and was told they were pretty sure I didn’t have bowel cancer. Went back to a different gp some months later and he referred me for an ultra sound but also did a ca125 test and that came back 1751!! Stage 4B ovarian. I’ve had 6 rounds of chemo and surgery last year. Been on Olaparib and Bevacizumab infusion every three weeks since September. Got a rising ca125 at the minute so a bit scared!!!! Just joined the group hence a late reply to your post

Pugster over 1 year ago

Hi Shimsha

Hope your treatment is going well. I went through the diagnosis, treatment in 21-22 and currently on maintenance. Similar story but not the delays - thought bowels and then ovarian cancer. Its a complete shock and you go to each treatment / surgery thinking 'when am I going to wake up?' Except for the wound and the need to take daily meds I still find it difficult to comprehend, but you do get through it and the saying 'one day at a time' is really the way to go.

Happy to be a listening ear.

All the very best x

Motiva over 1 year ago in reply to Diney

Hi Diney, I hope your results weren’t as bad as you expected and you are responding well.

Diney over 1 year ago in reply to Motiva

Hi Motiva

My scan only showed some traces of ascites but with my ca125 still rising they are going to scan me in 3 months again. Got a holiday for 21 of us in July so my main aim in life at the moment is to get myself on that!!!! My oncologist has also reduced the dosage for my Olaparib to try and get me feeling better generally. I’m thinking I’m going to stop looking at my ca125, it just makes me fret about what’s coming and if I didn’t know it was rising I’d not be able to tell from how I’m feeling atm. X

Cleverfairy13 9 months ago in reply to Pugster

Hi Pugster,

just wanted to ask what maintenance involves? I was diagnosed with high grade 3C serous ovarian cancer, had 3 sessions of chemo, surgery and now starting my last 3 chemo sessions, just trying to think what comes next?

hope you are well and everything is ok

Noodleface 5 months ago in reply to Cleverfairy13

Hi Cleverfairy. I don't think Pugster replied but I just wanted to say that I had the same diagnosis and concerns as you. Maybe things have already moved on and you know what's happening now. I had debulking surgery and then 6x carbo/paclitaxel and following a clear CT scan, I've just started Niraparib maintenance tablets. I'll be on these for as long as they're working and that they're not causing any other problems. There's a long list of potential side effects, but so far I'm just feeling tired and fuzzy headed. Fingers crossed that it stays that way, although I could do without those side effects tbh. I'm also BRCA- and HRD- and Niraparib was only approved for people like me last autumn in the UK. Placing all my faith in them and now starting to get my life back! Best of luck to you, whatever happens next

Cleverfairy13 5 months ago in reply to Noodleface

Hi Noodleface, thank you for taking the time to reply.

i started on Niraparib two weeks ago, aside from high blood pressure and constipation i seem to be tolerating ok. I had a CT scan on Sunday and will see the oncologist in two weeks.

my anxiety is so bad just now, its an awful place to be and as much as i try to be positive I am struggling, I start counselling on Monday through MacMillan and have been referred to see a clinical psychologist so im hoping that will help.

i hope you are doing well , take care

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