Advice needed recurrence

[Skyeplus]

Dear ladies, I just need to share as feel very anxious and no one understands like those who are on this journey. So for three years I was told I had IBS and fatty liver. Was under a Gastroenterologist at a local hospital out of my NHS Trust area. Saw the Gastro man every 6 months and in Jan 202 I actually wrote to him because I was in pain. No response. By August 2021 I was in such pain I went to my GP who luckily recognised my symptoms for what they were. In September I was diagnosed with high serous ovarian cancer stage 4 grade an and also had ascites. I also later was told I had a genetic mutation BRIP1.

Had a brilliant response by the oncology team…chemotherapy c &p, followed by debulking surgery. Started Niraparib in July 2022.

Was doing really well, in February 2022 my CA125 was 5 and no symptoms but two weeks ago I started to feel breathless. Thought it was a side effect of the Niraparib. Ended up having a blood transfusion last Tuesday as haemoglobin was really low.

Running parallel to this about four weeks ago a different new GP called me out of the blue and said I needed to have my bloods checked and when was my next appointment with the Gastro man. Clearly hadn’t read my notes. I have bloods taken every four weeks for oncology. Silence when I told her. She then said I needed an ultrasound. So had one. Three weeks go by. In hospital having the blood transfusion when get a call from the GP who says, “did I know I had deposits in my peritoneum and bowel” and I needed to speak to my oncologist. Asked if she would be sending the ultrasound results and got “I will try and get my Secretary to do it”

Anyway I rang my specialist nurse and within an hour had a call back to say my oncologist wanted a CT scan and had that lastThursday. Waiting for result.

Although I have always understood what stage 4 grade a means I am a bit shocked at the speed given my CA 125 in Feb was 5, I’ve had no symptoms apart from the breathlessness and am on Niraparib.

So is this recurrance? And what will happen? More chemo?

Has anyone else been at the same stage as me and gone through this.

Thankyou in advance x

[Caleda4]

Hi, Sorry to hear that you are having this problems this sort of thing is always quite daunting. I cannot advise you, as you will have to speak to your Oncologist once they have the result of the CT scan and had an MDT meeting which is more reliable. The CA 125 can be unpredictable sometimes,so try to stay calm if you can,which I know is difficult. High grade serous is unfortunately one cancer that will eventually return at some stage. I have lived with this for 8years now and had 3 lines of chemo over that period. I am a positive person,and stay as healthy as I can,by eating a good diet,walking,and enjoying life in general. I feel really well at the moment which is great. I sincerely hope that you receive a good result from your team,fingers crossed for you. Do let us know how you get on. Take care.x

[Skyeplus in reply to Caleda4]

Thankyou so much for your reply. I too am a positive person and to date as recent as February, my oncologist said I was doing ok. Anyway, quick update. The specialist nurse rang me this morning and although the CT scan isn’t back yet, she talked me through the ultrasound. The shadow on the bowel is gas, no deposits. There seems to be some small deposits on the peritoneum but this needs to be confirmed by the CT scan. She said they look at three things, the scans, General health and CA125. My CA125 is 6 as of last Thursday and I feel well apart from the weekend of stress. She did say she was surprised at the GP calling me in the way she did. If it’s a recurrance, and I do understand it may be, there will be a plan and more chemo., just as you said was your experience. Bless you xxxxx

[Lyndy2]

Hello Skyeplus, I know it’s always a shock when you have a recurrence.

First of all, I am not sure why your GP is getting involved. Oncology and their radiographer should be looking at your CT results, bumps and lumps don’t always be mean active cancer, so they should compare with previous scans. If you have no symptoms, they are likely to suggest watch and wait.

I know some hate this idea but I had 2.5 years on w&w and lived a normal life.

As a fellow stage 4 I can tell you that yes it’s probably going to be chemo but don’t rule out a trial.

I am just starting 3rd recurrence and I got on to a trial at the Marsden of a drug that makes Olaparib work more efficiently. So i am delaying chemo at least for a while.

I got back to No Evidence of Disease after my second lot of chemo, so even if you do have it, you have every chance of getting back to normal again xx

[Skyeplus in reply to Lyndy2]

Thankyou Lyndy2, I appreciate it. I feel much better now as to be honest it was the GP that rattled me. The Specialist nurse was brilliant and said the same. If there is something, it will be treated with chemo or possibly a trial. Thankyou again xxxxxx

[Realistic]

Please have a word with your team today you need proper advice . You right the girls on here are blooming marvellous because were all fighting this battle together ❤ and we can and do lead a normal life thank goodness. But get the right advice and treatment your team really are the experts lm just getting over covid so not my best at the moment but tomorrow is another day. There always help and hope my journey started in 2017 but like you had a couple of years before it being misdiagnosed but l do ok l live a normal life.Thankfully like you stay positive and try and live a normal life. My love you sound a very positive person all helps with your journey try and always have something to look forward too. My love & big hugs SheilaFxxx

[Skyeplus in reply to Realistic]

Thankyou Sheila, I so appreciate it. The specialist oncology nurse rang me and put my mind at rest. As you say, the Team are looking at me and will have a plan. Normally I cope and stay positive. Some days I even forget I have cancer! I think the call from the GP really rattled me because it came out of the blue. She clearly hadn’t read my notes and didn’t refer to oncology. It’s been a huge lesson. I have real faith in my oncologist and team because everything to date that they have said has been proved correct. I know that if there is a recurrence there will be a plan. Bless you xxx

[Realistic]

You've definitely got the right attitude always be proactive in your care & if your not happy ask for a second opinion its not a problem we all do it. Sometimes different options your special remember that we all are. Lots of ❤ SheilaFxxx

[Loorunner]

I can totally relate to your worry but be assured your oncologist will be able to help. I'm having my 1st recurrence not long after my 1st cycle of chemo (when I was NED) and it was a shock but I wasn't rushed into more chemo straight away and I trust my oncologist to judge when it becomes necessary. I'm actually going to try a tablet trial first to see if that can keep more chemo at bay a bit longer. If you are feeling well try your best to enjoy it - easier said than done I know if you are worried- but I think we have to try and keep as much to that as we can. Sending lots of love xx