I'm new to this site. I was diagnosed end of October with OC stage 3c and have had 3 rounds of Carbo/taxol. My Ca125 dropped from 886 to 41 after 2 chemos (don't know what it is currently following the 3rd one). At diagnosis like all of us my hubby and I went through hell psychologically and took ages to pick ourselves up and get into battle mode. When I saw my surgeon last Thursday he said my scan showed great response and surgery was now the next step. He confirmed that looking at scan it would seem to be a straightforward debulking (hate that word) 😜However despite all this positive response he told me that he still needed to be blunt with my husband and I and said it will definitely return and then went on for ages about statistics and went so far into the future that it burst our bubble. I feel quite cross that he did this when I am facing surgery that I am dreading. As an experienced nurse I understand that this is a difficult condition and didn't need him to do this. I also know that there are countless inspiring stories and I've nursed many such cases. Nevertheless he wouldn't have it.
Surgeons are often all about statistics, my Oncologist always seems more upbeat as does my CNS. It's just messed with my head at a time when I'm so stressed about the impending surgery.
Sorry to moan on my first message on here, you all sound a lovely supportive bunch
Lovely pic ... your not Moaning for me you are highlighting a very common problem in ovarian cancer ... yes there are a lot of horrible statistics you only have to look at google and your hopes are dashed.... but for you to be slapped in the face with it at a time when you are improving and things are working for you is so wrong like you say everyone of us have our own pathway ... what a terrible thing to go through but don't let it dull your fight as you are doing so well ... life comes with no guarantee but your treatment is going well and that should be your focus .... all the best for your op sending big hugs 🤗 and positive vibes 😊
Hi welcome I agree with Shellygirl, don't read into statistics we are all individuals and deal with things in our own way as do our bodies, best wishes with your surgery keep focused and stay strong Love Janice x
Hi Marian, welcome to the club none of us want to be in but are so very glad we are in it.
You wouldn't be normal if you weren't scared of the surgery but really it's not all that bad, and yep you'll be sore for a little while and you will be helpless and need waiting on but that's just what it is. The main thing is that you're doing so well already and this is the logical next step in the process to good health.
I think your surgeon was right in a way to not give you any false hopes, imagine the disappointment if he had said it won't come back and then it did? I agree though that there are way of doing it and maybe he could have been more gentle with you both especially as you already know enough to make it super scary.
As a nurse you are only too aware of all the possibilities and maybe sometimes ignorance is bliss but you have the power of knowledge and you know just how best to look after you, the rest of us kind of stumbled through the process but we all got there one way or another.
Good luck with your surgery, you'll be just fine I'm sure and then the rest of the chemo will get those little b#%+@!d cells and you can start to look forward. My GP, surgeon and oncologist have said that my positive attitude really did help so do try to be upbeat if you can.
Sending lots of best wishes, hugs and love ❤xx Jane
Hi Marian. I often wonder if surgeon are surgeons for a reason, no bedside manner! Mine, as good a job as he did, had an awful manner and was very arrogant. I never met him before the surgery and two days after it he turned up at the bottom of my bed whilst I was alone and just said that the op went well but my prognosis was not good! I was so taken aback I asked who he was and he seemed affronted by my question. He took a step back puffed out his chest and gave his name and that he was my surgeon. I rudely said well you could be anyone off the street Ive never seen you before. He left soon after and I went to pieces. Well here I am 9 years and 4 months later despite two recurrences! often think Id like to see him again to say he was wrong, im still here. The surgery wont be anywhere as bad as you are imagining, believe me im a wimp! Best wishes for your op, you'll be up and about before you know it xx Kathy xx
Thank you all ladies for replying, I really appreciate your warmth and uplifting words. Like most nurses and medical professionals I don't make a great patient !! I will try hard not to let the side down lol.
Every article I have ever read about OC starts by telling you how deadly it is....why some medics have to ram this home when you are feeling scared and vulnerable is anyone's guess!
This forum is a godsend because you will find real women here who have had no recurrence or who have had recurrence but carried on fighting for years. Now is not the time to give up...you've had a great response to chemo and you will benefit even more when you've had your surgery and follow up chemo.
That will put you in with a chance of being one of the lucky people for whom it does not return...positive thinking!
Hope your surgery goes well...it is scary but I really enjoyed the feet up, rest up bit afterwards xx
Thanks so much Lyndy, messages like yours and the other ladies above really do help. Wasn't ready to come on here st the beginning but now so glad I did.xx
We've all heard what the docs say most of the time they say big words that nobody knows what it means until we get home and consult the wonderful 'Doctor Google'. We've all heard the statistics you've got x% chance of living 5 years is the usual rubbish.
As I have said to a few people you're an individual who does not have a 'sell by date' like a packet of grapes and you will always come out the other side. Like all of the lovely ladies on this site they are all strong inspirations for someone like me and where they're going through it you'll learn a lot more than Doctors, Surgeons and CNS's know put together.
If you ever need to chat about anything that's what we're all here for xxx
You have to remember we are all different, we all have our own"journey",just concentrate on yourself and don't worry about others as that may not happen to you.
Take a positive attitude (debaulking) hate that word too, it's just an op as far as I'm concerned you will be fine.
We all have something to fight for and I always look at fighting the odds,prove them wrong,
Hello Marian. I'm on this site as my mum has OC. She was diagnosed on Christmas Eve 2013, grade 3c, but had been poorly all year so it was obviously lurking. She had the Carbo/Taxol then debulking in April 2014, then more Carbo/Taxol. In October 2014 the surgeon said how pleased she was and she thought she'd got it all out. Mum was elated and said: "I always knew I'd beat it". Then in Jan 2015 she had the shocking news of recurrence. So, in a way, I wished they'd told mum about the possibility of a recurrence instead of saying, in so many words, she'd got the all clear. I think it would have been easier if she had been warned about a possible recurrence. It's so difficult. But, she picked herself up and went through second line chemo and had her 6th chemo on 21 July 2015 and has been in remission since. She's been pretty stable. The cancer has woken up again and she's seeing the onc on 31 Jan. She's willing to have more chemo. She celebrated her 80th birthday on 4 Oct 16. She still drives and has a great life. Some ladies on here describe OC as a chronic disease and I think that's a good description. There are ladies on here who have been diagnosed at an advanced stage of OC and have, at some stage, been declared NED (No Evidence of Disease). Everyone is individual. It's so important to try to be positive. My mum has been so positive even though she gets her low moments. Best wishes. Jane X
Yes I do completely understand where you are coming from. It's just that he'd already said all this st the beginning and I felt that at this precise time I didn't need to hear it again. He actually said "we all have to go"......at 57 I'm not ready to yet
I'm pleased your mum is doing well. You are obviously a very supportive daughter. I hope that her next treatment puts her back into remission.
Hi Marian. I can really understand how overwhelmed you must feel. It's just too much to try and take in. I feel so grateful that my mum has reached 80. So sad about the OC diagnosis. It's been a roller coaster ride. I live over 200 miles away which is difficult. I'm so shocked that there are so many ladies around my age (52) on this site with OC and, although I'm on here because my mum has OC, I have found it so comforting to chat with ladies who are going through OC too and have received so much useful information about possible symptoms and things that might help, which i've found so helpful.
Yes I'm hoping mum's next treatment puts her back into remission. That would be just great.
Good luck with the surgery Marian. I picked mum up from the hospital after her surgery and had to drive right across Birmingham City Centre. It was so nerve wracking and I was terrified of hitting a pothole!! I think I held my breath all the way! I've lived in Carlisle for around 15 years now and it's really quite rural compared with Birmingham and the traffic down there makes me nervous now! A little while after mum's op, I was down visiting with the family and mum heard my son's text alert which is a whistle, well a tune consisting of 5 little whistles and my mum said she'd heard that in the hospital ward and wondered how the nurse whistled the same tune so perfectly. But of course it was someone's phone!! My son changed her text alert to the whistle and she wasn't amused!! lol. Jane X
You are not and never will be a statistic!! Please never lose faith, doctors sometimes forget that we have emotions and get straight to statistics, nobody knows what the future holds but we must all try to stay positive. You have such a beautiful smile, please always keep smiling ❤❤✨✨
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Thanks so much Tanya, I agree positive thinking is the only way to face this xx
Good luck with the surgery. I had a great pain management team and the nurses were wonderful, in and out in 4 days (and only in for the last day as I had a 400km journey home from the hospital and they thought that might be a bit much! note take a cushion to protect yourself from the seatbelt on the way home). You are not a point on the graph - be inspired by the lovely people on the site and keep smiling.
Dear Marion, I have this view that surgeons are just a few paces away from being psychopaths. Honestly, they cut people open for a job?! This means they rarely have the emotional intelligence along with the necessary disconnect to do their work. Like many others on this site I've found it is the oncologist/cancer nurse support who has filled me with confidence and at times offered emotional help. But - in my case (and probably in many of our cases) it's the surgeon who gives us the extra time. I forgave my surgeon his blunt assessment, deciding that his skill had saved my life. I certainly didn't 'choose'him for his bedside manner.
Good luck with the operation Marion. And stay a little cross. Sometimes it's the bloody mindedness that helps us through tough days. Hugs. T. X
I accidentally sent my reply before finishing it. Being an ex nurse, I had heard bad things about OC, & assumed I wouldn't live very long. I was initially staged at 1c, & my surgeon told me he had removed a very rare type of OC, & I could expect it not to recur for 20 years! I agree that your surgeon went much too far in what he said to you before surgery, when it's all so very new & daunting. Mine was much too optimistic after that initial surgery. It did recur, after 2 years that time, & I had further surgery with a different surgeon, who was more honest, but did not talk about statistics, or try to look far ahead. Since then I have also had chemo & hormone treatment, & the 2nd surgeon & then the oncologists have always taken things a step at a time, & not tried to look far into the future. I was tempted once last year to ask one of the oncologists how long she thought I might live, & she said she didn't know. We are not statistics. There are ladies who live only quite a short time after diagnosis, but also ladies who do well. I know one older lady who was diagnosed & treated 27 years ago, & has had no recurrence since. Di
Thanks Di, you are an inspiration. I agree with all you say, it has to be one step and hurdle at a time. That way I can stay more upbeat and positive. I've somehow got to get myself back to where I'd managed to get myself before I saw him last week.
Keep up the good fight, nice to speak to a fellow nurse too
Hi Marian-That was not right that your surgeon put the news that way. You are a person not a statistic. There are people here that have survived years and years with OC. Some never reoccur. There are people on both sides of their curve, that what makes it a bell curve. Believe you will survive this or live successfully with it affects your outcome. My internist says mind over matter. How you feel in your head/heart very much will affect your immune systems ability to fight. Your CA15 is dropping perfectly. the chemo is working. Stay strong, believe and do take care of yourself. you are young(great photo by the way).
Thanks Carol, you are so right about positivity and I am convinced that it's got huge power over the body and immune system. You sound to be doing well, thanks for taking the time to send such encouragement. I will be petrified on Thursday but I can do this!!
Marian, I think the chemo has done wonders for you already... that is some great news before going into surgery. Is the surgeon not an gyn/onc? Most often a regular surgeons would make these types of statements.. gyn/onc have a much better grasp of the disease and are usually much more gentle and hopeful with patients. Also many want you to feel indebted to them for " saving your life" or giving you more time and on and on. On the flip side, some think they are Pre- Paring you for the worst case scenero so that if it is better than they thought your attitude towards the disease will be better. Sounds like you and the chemo were able to give the Cancer a good swift kick in the pants before the surgery. YOU GO Girl and stand strong.. Please also remember that you are never alone...
I don't know why he is so certain it will return. Normally 20% of those diagnosed stage 3 will not have a recurrence after 5 years, and in some it certainly never recurs.
Good luck with the surgery, and keep positive. New discoveries are being made all the time.
All best wishes. (By the way I am a retired GP, but I think you know that.) I was diagnosed 7 plus years ago but am still here, in spite of 2 recurrences, with no evidence of disease for over 2 years.
Thank you Eileen, these were my impressions also and I am so grateful that you confirmed these statistics. Even my Oncologist and normally very forthright CNS told me at my last review that it might never return. His timing was very off with surgery so close, as I think the only way to approach this is to take each part of this journey one bit at a time.
I have been very interested with a couple of your previous posts regarding the Aspurin/Ibuprofen. I am going to be looking at that once surgery is over with. The research is pretty compelling to me.
You are doing brilliantly and are proof that your own research, proactiveness. and a positive attitude make a difference. Long may it continue for you. Thanks again for your message, I really appreciate it.
That's tough. I was diagnosed nearly five years ago. My Oncologist told me it would 90% likely recur, but it didn't for 2 years & 7 months. After about another 18 months I think it might be back for the second time. I was recently told it is incurable if it is back now, but treatable. Statistics are a few years old and we are all individual
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Scared and in holding pattern.
Post surgery 😊
Just arrived home after debulking surgery on Thursday. A stoma was never part of the plan 😔
Scared and frustrated
Refused surgery!!! Help!
