I just wanted to say, I've been on this forum for a long while now and wanted to let others, especially new members, know that there is always hope.
When I was first diagnosed almost 9 years ago to the day there was chemo treatment and the usual surgery but I was never offered BRCA tests or aftercare treatments as there are today. Therefore, going forward there could be all sorts of new developments round the corner to help. There is always hope.
I did get a BRCA test later down the line when I asked for one and I did have the faulty gene so that has helped my family. If I hadn't have asked for it I would never have known.
Anyway, I do hope you are all as well as you can be and don't forget. We're here for you and there's always hope. I used to say, if records show a 100% no survival rate, that I would survive and make the statistics change to 99.9%. (My maths if hopeless).
Best wishes to you all, Zena xx
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ZenaJ
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Lovely post for us all to read and yes things change and improve all the time! Looking forward to the future and what it brings! Just need to get through my treatments 1 day a time xx
That's the best way. I wish you well with it all. xx
Thanks Zena. You’re a star! 🌟 I look forward to hearing from you when it’s been a decade since diagnosis. It’s nearly 7 years for me. I don’t know where they’ve gone.
Hi there, no I haven't had a recurrence. I kept waiting for one but luckily nothing happened. I had a blocked bowel since the surgery and still have nueropathy and brain fog but that's nothing on the big scale of things.
I too am nearly 8 years out, no reoccurrence 🤞🏻Don’t really think about it now but a long distant different world. The first 3 years could be difficult, but life is for living and I have 5 grandchildren since, no time to dwell.
My advice is keep busy and look forward to something and laugh a lot.
I have lost friends on here and in truth it’s always there in the background but there is always hope, look forward and to better times not to the past.
Completely agree Carole. The places I've been during the last 9 years. My daughter married and now grandchildren. My son with his partner. I have seen friends pass with different cancers and know how lucky I am. I still moan about the weather though.
I'm so pleased for you and wish you all the best for the future. Love Zena xx
I'm doing well 8 months out from last Chemo just had CA125 and Pelvic exam NED as I had mentioned my OC is a little rarer Endometroid but CA125 is a good marker for me at 7 the last 3 draws was 4200 before debulking God is Good! Thanks for asking your a doll.
So pleased you're doing well. It's always worrying waiting for CA125 results. 7 is excellent. I have been lucky enough to have kept at 8 for 8 years although mine of only in the low 100's to start with. Really excellent news for you. xx
Just to add a little more sunshine. I am BRCA positive too, and so was my sister.I feared so much that my two sons might be and would pass the gene to their four children. But both my sons have proved BRCA negative, so this disease stops with me! Miracles do happen.
Oh Zena just fantastic, lm 5 years this Oct and apart from a hernia lm doing great, and lead a very normal life thank goodness always have to too look forward to & stay positive. And ĺike Zena said take control yourself things are getting better. But with covid its been a difficult 2 years getting seen and treatments hopefully getting back to normal. But take control if things dont feel right. We know our bodies so my teal sister keep well. Your a true inspiration Lots of love & big hugs to you all SheilaFxxx
Hi Zena, thank you for your lovely post of encouragement for us all. I have often read your posts & replies since I joined in 2019 & they always give me so much hope. I am like you, someone who just puts my head down & gets on with it but I do have the oscasional wobble. I unfortunately recurred very quickly in late 2020 & am still on chemo to this day, but I am still here & will keep fighting. I always say to people who ask me "how do you do it" that there is no point in crawling into a corner in a heap & feel sorry for your self, it gets you nowhere. I have my family to keep going for. I am currently waiting for a Ct scan well over a month now( as there is a backlog in the hospital I attend) to see if I need to continue chemo, so stress levels a bit high at the moment but your post reminds me that there is always hope so thanks & may you continue to stay well for many, many more years ahead. Hugs Xx
Sorry to hear about your recurrence. I'm sure you'll come through it with such a good attitude. It's sad about the long waits now in the hospitals and just extends our worries. I hope you get your scan soon. Can you remind them in case the appointment got lost along the way?Which hospital are you with? They do seem to vary a lot. Keep us informed how you get on.Best wishes, Zena xx
Hi Zena, I am in Ireland & my hospital have sent me a letter beginning of June saying they are outsourcing some of their patients Ct scans to a private clinic & I am on that list but still waiting to hear from them & it's agony as I haven't had a scan since Jan but trying to stay positive. I often wonder do the staff in oncology or radiology realise how hard it is for people like us having to wait so long for tests/scans & results, but I suppose on less they are in this situation they don't think about it 😩. I will update you when I eventually have scan & get results. Take care & enjoy your life to the max X
I had my treatment at Southend Hospital in Essex. I know they are outsourcing some operations to private hospitals like knee ops, cataracts, that sort of thing but I don't know about CT scans. I had a scan for diagnosis, another after surgery and a last one after a year. Again, I don't know what the norm is.I agree with you that the waiting is one of the worst parts. From the initial going to A&E and hearing I had cancer, as they couldn't confirm it until I was on the operating table and they'd sent a part of the tumour to the lab, it was about 10 weeks and although my cancer nurse agreed with me when I said I was going to continue to believe it was cancer, my oncologist and surgeon only explained the procedure during the surgery.
I think the worrying was worse that the surgery.
I do hope you get your scan soon and will be waiting to hear your results.
So great to read your post this morning . I was diagnosed early 2020 , had chemo. , ultra radical debulking , more chemo , Avastin. More chemo due to relapse and I have now just started Rubraca . Ive always been incredibly positive but I am starting to feel this is ‘ last chance saloon ‘ and a bit depressed ! So, I was somewhat cheered to read your post and I will try to stay positive and look forward to the new immunity treatments currently being researched and hope the Rubraca works without the horrible side effects!! With love to all 🥰🙏🥰
I'm wishing you all the best. I'd never heard of Rubraca and Avastin until reading posts and I'm sure there's lots of other things out there that I don't know about. I didn't even know about BRCA or bowel blockages. This forum has been a mine of information. I know we can ask our medical team questions but you can't ask questions about things you've never heard of. What I'm trying to say is there is probably more help out there for you just round the corner, you just don't know it yet. All the very best to you and keep up the positivity. Love Zena xx
Oh Zena &all others that have replied with such positivity, if only you knew how uplifting it is to hear true success stories.last month , 2yrs after finishing chemo, my consultant told me that I would no longer need to be seen as was considered cured 😳They will continue to monitor bloods every 3mths for next 3yrs but considering my cancer was highly aggressive & caught thankfully early it hasn’t recurred so unlikely to!!I am so grateful to be told this but still have doubts that it can actually be true but your letters make me feel that I should trust & get on with enjoying life🤗 Thank you so much & wishing you all peace & happiness. Big hugs Dee x
Thanks Dee, That is such good news for you. If you are still a bit worried when the official CA125s finish ask your GP if you can continue with them for peace of mind. I did and my doctor was very happy for me to continue. I have mine every 6 months.
I believe there are a lot of us out here that have survived for years but not necessarily on this forum any more. As I keep harping on, there's always hope. Love Zena xx
Hi ZenaJ, congratulations on your 9 years and here's to many more. To add to your story, I've now been more than 16 years since diagnosis, never had a recurrence, and am BRCA negative, but have Lynch syndrome (which can cause bowel, womb and ovarian cancers and a whole bunch of others). I enjoy each day as it comes and don't let cancer define me, although I am still active in the survivor community. Sending hugs!
Excellent news. I can hope for many more years too. Sometimes I forget I even had cancer. It's all the adverts on the TV that remind me. A friend said something to me once about her news not being as bad as what I had, and I said, 'why? what have I had'. I felt such a div forgetting I had cancer for a moment but then I thought that was great, it meant it wasn't ruling my life any more. Long may we both continue to be cancer free along with all the other lovely ladies. All the best. Zena xx
Thank you for all the positive stories. I have just had my surgery and am still awaiting my results. Feeling very anxious. Your story gives me hope when I’m feeling so low. Thank you
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