Hi everyone, I am so scared and confused and really hope someone can shed light on the situation.
Mum was diagnosed in 2015 at the age of 48 after months of being misdiagnosed with stage 3B high grade serous ovarian cancer. She had a complete hysterectomy which lead to the diagnoses after biopsies and weeks later after the debulking surgery they found a (1cm) disease in the omentum, (no disease was found elsewhere). She went on to complete 6 rounds of carpo/taxol and has had 20 wonderful months in remission .
However mum has just had her first reacurrance, and after an initial rise of her ca125 to 52 which led to a ct scan after a lot of asking from me. Has now shown deposits on the peritoneum and possible 2 enlarged lymph nodes and they're treating it as palliative with carpo/Gem.
Can someone please help to clarify if this is standard treatment and if there is anything else we can try?
Why palliative??? I'm absolutely devastador with this news. 😭😭
Hoping for some positive news from people who are in a similar situation and what treatments they've been on.
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raquelmorais
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Hi Raquel I am confused by the fact that you have been told your mum is being treated as palliative. I am stage 3 and have had two recurrences. The first in groin area and omentum and the second on the peritoneum, Treated on the first recurrence with carbo/gem , yes it does appear to be standard. Try to stay positive. I'm still here in my 10th year currently NED and working full time. Might be worth speaking with your mum's CNS to ask why the word palliative has been mentioned. Best wishes. Kathy xx
Thank you for replying. This is so scary! To me I thought palliative means hospice and the end! 😭 Did you go into NED after just carbo/Gem? Did you have any surgery for removal of masses on the peritoneum?
Hi Raquel, yes I did, although I had to be swopped to cisplatin as I became allergic to carbo. The only surgery I had was the original hysterectomy. I've replied to your message xx Kathy xx
Hi, your mum sounds the same as me. I was diagnosed 2014 had 20 months remission, they said they wouldn't operate again and I had what they said was palliative chemotherapy 6 rounds of carb/ paclitaxel every 3 weeks. Mine had come back between my kidney and liver and a lymph node in my neck. I finished all this last September and they said I was NED. My CA125 is 11 and apart from the odd move of up or down by 1 I am stable. When they told me it was palliative I thought that was the end. But it's not ! I just think of it now as treatment to get okay again.
Thank you so much for your reply and it's such great news for you. This sounds so much like what my mum is going through except she is on chemo carbo/gem this time round. Have they discussed any trial treatments with you? I may mention it next week and see what the consultant says.
Hi, before I started the chemo and my CA125 was rising I went on a trial but it was one where half of the people got the drug and the other half didn't. It was an immunotherapy trial. But during the three months my CA125 was rising quite rapidly , as the oncologist couldn't tell me if I was getting the drug or not I told him I wanted to come off the trial and start chemo which I did and it worked again for me. I just think I know it will come back again as they keep telling me it will so hopefully the chemo will work again.
Val. X
I imagine you and your Mum are gutted regarding recurrence. However, palliative just means not curable but manageable. Doctors tend to use these terms loosely frightening the lives out of us all. I am the same and have been on the roundabout for many years and feeling good at the moment. A recurrence is hard but one your Mum starts treatment you should both feel more settled.
I was told today in oncology that all treatment is referred to as palliative if it isn't curable even if you are likely to get a good response. The problem with OC we are all different and the possibility of recurrence is not predictable despite patterns.
Hi I just wanted to say that we are on the precipice of a recurrence with my mum and although I can't help with your question, I just wanted to write a message that I feel what you're going though; it's nothing compared to what the warriors like our Mums are going through but ours too is an emotional struggle so I wanted to send you a virtual hug she too was misdiagnosed.
And also to reinforce that palliative is not a synonym for terminal.
In 2013, when I started my first course of chemo, the oncologist asked me to sign a form to say I understood that my treatment was palliative not curative. Nearly 4 years later, I'm feeling well, not currently on any treatment, & having 3 monthly checks. Di
I was not ned but did get shrinkage, I am low grade but at the time did not have the low grade diagnosis. I did try to get on a trial this Feb but when they tested my slides I was rejected.
Hi again Raquel, just reading this post after posting on your more recent one. I understand your shock as we went through the same with my mum. It's a stressful time. I like you had hoped for the best when my mother reached a year of remission. I started to believe she was one of the lucky few who was cured and by year 2 I was convinced!! It wasn't to be! The realisation that it was no longer curative was devastating. However the term palliative was never used and although I know it has a different meaning these days I think I would have reacted like you. Our consultant described it as a chronic disease...it will never be gone completely but you live with it and treat it when deemed necessary. I hope my comment on your other post gives you hope.
Hi Raquelmorais. I’m so sorry about the recurrence. I recurred the first time after 2 months and went on Carbo/Gemzar/Avastin. The reason they use the term Palliative is bc once you recur, it is considered more of a continuum of the disease. In other words, it is not considered curable. Sounds terrible, I know, but it is the reality of what becomes a chronic disease. I have now been treated 3 times in only 2 years (I’m stage 4). The good news is there are so many options for treatment and I do feel good in spite of it all. Must keep a close eye on her Ca 125 and most importantly, her symptoms. Try to ignore the terminology, it is not helpful to our spirits. Best, Nadie
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she too was misdiagnosed.
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