Hi Everyone, i first posted on this forum a few months back, my mum was diagnosed with stage 3C Ovarian cancer. At the time i was so worried and was asking for success stories. I always said if we got some good news then id come back and post so others can take heart and hope.
Without rehashing my old post, my mother had a cyst, they did tests, the blood test showed her protein levels were normal, the scan showed no cancer, the tumour markers were clear, so she believed she was going in for a hysterectomy as a precaution. When opened up the Doctor was shocked to see cancer all throughout her abdomen. He said it was like getting a dandylion and blowing it and little specks had gone everywhere.
Since then my mum started chemo, we had no knowledge of how things were going as the DR said my mums got the type of ovarian cancer were that protein blood test just doesn't show up and for some reason it doesn't show under scan. So we had no gauge if the chemo was working. Due to the number of uk bank holidays in may her chemo was delayed and we all got a bit down.
She spoke to two surgeons and they were lovely but they basically were preparing us for the worst, they were talking about survivability time, they were talking about opening her up and whatever stage she thought she had before was likely to be advanced as they look very thoroughly, they talked about a stoma bag and they talked about removing organs or parts of organs and maybe large intenstne etc.
it was all very sad, but my mum stayed as positive as possible, though not overly religious we prayed every night and my mum changed to a completely healthy diet since she was diagnosed in Jan. no takeaways no processed food. I want to side track a bit and say once someone close to you gets cancer you realise how horrible it is and the Drs and Nurses and staff at Macmillan are so good, but im struck by the number of predatory people, who try and offer miracle cures for 1-2k per month, i understand why people do it, but my thoughts on the people targeting cancer patients is probably another post in itself.
So fast forward to just under 2 weeks ago. They took my mum in for a operation to put camera in and look around. as the blood test and scan didn't work, it was the longest day of my life but the Dr told us after that the chemo had worked and basically all the cancer had disappeared, he said there were some small pin head size dots that needed lasered away, but they wanted to open her up fully to get a better look around in case they couldn't see some cancer in the camera.
Well she had that operation yesterday and the Dr phoned me when she was in recover, he told me she could not have had a better reaction to the chemo, that all of the cancer had basically melted away, there was some very small specks less than 1mm left and they lasered it away, they removed her omentum also, it had no cancer but if cancer returns that's a spot that attracts it.
so basically my mum has 2 chemo left, the Doctor said there is no cancer there unless its a microscopic cells, but they lasered over her bowl and bladder etc to kill any that they couldn't see. the last 2 chemo should get rid of any other cells unseen by the eye.
although this awful disease can always have a chance to come back, the advance in medicine progresses all the time. I just wanted to let others know that good stories do happen, i know when my mum was first diagnosed i looked and tried to find as many as i could. keep positive and healthy.
Hi R
Sorry for the late reply to your initial messages but cleverfairy has been supporting wonderfully.
A little background leading to the positives.......
My Mum was diagnosed with stage 4 HGSOC a year ago. Due to her advanced age and disease progression through all 4 abdominal quadrants, peritoneum and omentum and a large left mass in the adnexa......she was not suitable for cytoreductive surgery. She had 6 rounds of Carboplatin but became platinum refractive, she started Paclitaxel (6 cycles) but had an allergic reaction so she was switched to Abraxane (nab-Paclitaxel) and completed a further 13 cycles.
It has been a mammoth undertaking as it is for everyone and there were several challenges along the way......but.......the status now for her at almost 4 months post- chemo, her CA125 (highest over 1000) has been stable at 23 since cycle 10, all the peritoneal/omentum disease has melted away as has the original large tumour.
She continues to maintain a healthy weight, she has a hearty appetite and she lives a very active social life.
She maintains that her approach to OC with a strong mindset through out has been instrumental plus the support and care from medical, nursing, family and friends has guided her through.
She is 84 and determined.
R, it isn't an easy journey....trust your oncologist and nursing team and follow all their advice, their knowledge and expertise is encyclopaedic and they want to share it all to support you.
Sending strength and hugs for the surgery and the subsequent chemo.
Francesca xxx
Thank you so much Francesca! This really really helps. I have the consultant appointment tomorrow, so scared but I feel so much love around me ️
It’s scary, it’s horrible but try to remember there are so many good options for treatment.
try doing some deep breathing exercises whilst you’re waiting to go in.
sending lots of love your way
Thank you for sharing your mums story, I’m sure it will give us all hope and strength to keep going.
sending you and your mum love and good wishes ️
It is scary, there will be so many tearful moments to come for so many different reasons….but let them fall, whether that be with loved ones, medical or nursing staff…they have seen it all……they release important emotions and then you can gather yourself and you can listen and learn the new jargon/medical terminology that is all about you and begin to feel that you are investing in the process which starts to give you some measure of control back and involvement on this journey.
I am sure you will have someone with you for the consultation tomorrow, 2 pairs of ears are better than one and bizarrely each of you will retain different parts of the information imparted. It is a lot but your consultant and his team will guide you along and the unfamiliar soon becomes familiar.
We are here and thinking about you.
Sending love and strength for tomorrow.
Francesca x
Thank you ️ it has been and continues to be such a journey but the love and the amazing varied topics of conversations along the way have kept us both entertained and only deepened our relationship and bond even further. Good things can still grow during dark times. X
Hi Cleverfairy13, thanks for the comment. Still waiting for surgery and it’s so frustrating as I’m in pain but hopefully news soon. Hope you are good too my lovely xx
I’m sorry to hear you are in pain, hopefully you will get your surgery soon and start to heal, sending love ️
Hi RMM I am so sorry to hear that you are in pain, that isn't kind/fair when you have so much to deal with.
Do you have any Oromorph? If not, please contact your GP so you can get on top of this pain whilst you are awaiting surgery. You may have to make some noise to be heard but it will be worth it to achieve some physical comfort.
Or ask for a rapid GP referral to the local Macmillan team for help during this period.
Sending love and strength. x
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