I’ve just read a great blog in which the consultants said she would cure her patient, which is fantastic. I wish that I had been told that they could cure me. I’m stage 1c1 and was told I would never be cured as it can always come back. I have been Ned for over 2 years now so I’m hoping the beast will not return 🤞I felt deflated and will always now have the monkey on my back. Just wondered if anyone else had been told something similar or did I just get a grumpy dyed in the wool consultant.
To be told your cured: I’ve just read a great... - My Ovacome
I was told I was cured by my onc, since he was only prepared to talk about my cancer at that particular time. No one has ever said it may come back, since putting that in anyone’s mind can make you paranoid.
I only ever worry a couple of weeks before a check. Any ache or pain I get into my head it may have returned, but, magically, after a check and I’m told I’m ok, I feel 20 years younger and every ache and pain goes.
Cancer messes with your head, but it isn’t helped by people who give you the doom and gloom stories. Just put it down to no bedside manner, coming from someone who hasn’t suffered and has no idea what it feels like.
Hope you are ok, my 1c buddy,
Hi sweetheart I am so like you as you know. I’m doing good a lot better than recent weeks. Think your right about my onc she is a very straight lady and blunt. To a certain degree that’s good as I like to know what’s going on after all it is me that it’s happening too. I do know a lot of ladies who don’t like to know too. I sometimes think she was too blunt though as I asked at the beginning if I should worry if it would come back and she said of course you should as it’s likely 😢
Don’t listen to her, you are doing fine, adopt the Ostritch mode like I do, only worry if you have something to worry about.
Glad you are doing better, we all have so much to live for....told you before I haven’t the time to die
Too much to do.....so little time, if it comes back, I will cope with it then as all the lovely ladies on here do,
Lots of love,
I was told a cure was the aim but highly unlikely (3c) with surgery and first line chemo but if it came back it was here for good which it did.
I read something this week but can’t remember where (would have been cancer research or similar site) which said that even if it does not recur there are likely still cancer cells present in your body.
Not sure if this is a newer view or if my oncologist was just being super positive in the first place.
Like you I found it hard to get my head around the thought, I also found it difficult when if I mentioned it family would tell me not to be pessimistic.
Now I’m in second remission I do understand why it’s important to celebrate and enjoy your disease free time for however long that lasts. Maybe because I know it will come back I make the most of each day and plan holidays etc.
I wish I had taken this approach the first time rather than worry about recurrence.
Sending lots of love,
I have heard that with stage 1, Ovarian Cancer has a good chance of being actually destroyed by early treatment, but I think there are types of Ovarian Cancer, such as Clear Cell and even Low Grade Serous, that are a lot harder to treat successfully even at stage 1.
The later stages of High Grade Serous are impossible to predict, so we are given temporary all clear signals, but our Oncologists cannot determine if and when it will come back.
Some ladies recur in a few months, but then stay clear of cancer for years and years, while others stay clear for years and years before experiencing a first recurrence.
Fortunately for us, there are so many treatment options available.
First line is always the toughest. Because they have to use the big guns to eradicate what they can.
After that, other treatments usually don’t seem too bad.
Hope this helps,
I did have clear cell but my onc was clueless. She actually looked up a paper while I was sat there. My surgeon said I needed surgery but the onc said it was my choice. Difficult position to be put in I felt as I had a plan in my head. I did have first line treatment as I felt it would give me the best chance. Yes thank you your reply has helped.
Well done you. Think maybe I should have done that. I was in shock and I just went along with it. As the numbness wore off I did some research and was guided by a lovely lady many of you will know Claire who has since sadly gained her teal wings 😢 Im ned now so I keep my fingers crossed. Sending hugs and best wishes x
I was stage 4- so they were never going to tell me that. One of the best things I have been told by a consultant is that OC does not play by ‘normal ‘ cancer rules- neither is it the same from one patient to another. I think this is why they find it difficult to predict who will do well and who won’t. Although I agree-all you want to hear is those magic words, I also think that I would not want false hope either. Best wishes xx
I don’t think many doctors will stick their neck out to say someone is cured because they can’t really know who is cured and who isn’t and unfortunately there is no definitive cure for cancer.
My doctor said it has a good chance of coming back but I’m stage 3c ,however, he said it is an unpredictable cancer and there women who never have a recurrence and I’ve as much chance of being in that category as anyone else. He focused on what I had going for me i.e successful operation, being brca and having more treatment options etc and reassured me that they’d be keeping a very close eye on me. I’m finding it very difficult but I think the doctors are very honest nowadays ( at times too honest) so we know where we stand. I think what is lacking is emotional support because I think we all struggle with the no guarantee of if and when it might return!
I’ve learned that there is hidden support if you push . My husband told the Macmillan nurse what a state I was in emotionally and all of a sudden they mention a referral to a psychiatrist only problem is, I’ve been on the waiting list for at least 3 months. I think they don’t over offer support services because they can’t cope with the volume of people needing them x
That sounds like PTSD and I am sure some of us do suffer from that.
I am fortunate enough to be able to see a Hospice Counsellor when I need to and I just dump all my negative thoughts onto her and feel much better afterwards. That way my very supportive hubby doesn’t get it all!
As for being told I’m cured, that never happened. At surgery the surgeon found miliary disease, he got the big stuff out but couldn’t remove that, and apparently chemo won’t get it all either. It’s under control a d Im happy with that 👍😁
I've had amazing support from Macmillan. I drop in to the kiosk at the clinic at every three-monthly check-up and it's like catching up with a bunch of old friends for morning tea. They reach out to everyone in the waiting area, offering tea, coffee and biscuits, and chat with people - they've even helped me through a very rough time with my employers, and the latter included phone support as well. Once you have a personal contact I think you will find the support you need. I can't speak highly enough.
Shelly, this OC is such an unpredictable beast that predictions are worthless, an open mind and a zest for life are priceless.
My mum never recurred, I've had two recurrences and looking like I'm in a third. I've been around folk with OC and on forums for over 7 years. I've seen people on supplements, macrobiotic diets etc pass away quickly and other folk who enjoy rather too much high fat and alcohol stay around, illustrating that the only predictability in this weird and tough world of OC is that it is unpredictable.
My advice is to live each day to the full, eat a healthy diet and hope that you are one of the lucky ones. With stage one, the odds are massively stacked in your favour. I found a mindfulness course massively useful in shelving my anxiety for good periods of time.
Take care, live well.
Sandra 💐💖 x
Hi Shelly, I too am stage 1c grade 1 (mucious) OC. Finished chemo and got the NED 2 years ago now and feeling good. I work in a GP surgery and the surgeon who did my op is the partner of a colleague, and works very closely with my oncologist, hence I have gleaned a lot of information. I was told that my chances of the cancer NOT returning was 80% (90% if the little buggers hadn’t been found in the free fluid in my pelvis). So the odds are good! Everyone of us should make the most of the life we have as you never know what is around the corner, even those who haven’t looked cancer in the eyes. I all too often I see people, who on the outside look fit and healthy and think they are, come to an abrupt end. We’ve had a shake to make us sit up and make the most of everything, every day and every experience. Sending you love and hugs 🤗💞💞
Hi Lynn. I have 2b high grade serous, incidental finding in one Fallopian during routine hysterectomy, also 1 cm spot near peritineum. .. had 6 cycles of carbo/taxol. ( after 3 treatments had surgery to remove omentum as precaution) at time said NED). Then 3 more rounds of chemo! I finished September 4 2018. Scan clear and NED. Fast forward January 18. 2019 another routine surgery planned for prolapse repair and bladder lift sadly a small tissue less than a cm was positive so anther incidental finding 😟. I started on carbo/ gemzar. February 13. Then this week will have just gemzar , then a week off and so on for six cycles. ... then plan is to put me on a parib of some kind for maintenance . I have been very weepy this time and depressed more so than first diagnosis .. maybe cuz thought would not have recurrence after Ned 😐. Scared and wondering is this my life from now on? Sue
Hi Shelly, I’m 1c3 clear cell, just finished treatment at new year. I’ve got told we are treating you “with curative intent” which is a subtle difference from cured. Also that my surgery was the main cure and everything else has been treating the risk of recurrence. Like lynne I had cells in the free fluid in my pelvis, although I got told the chances of my cancer not returning in 5 years are 76%. No idea where that came from, it’s very specific lol
Either way, I don’t know which pot I am in, recurring pot or not! All we can do is try to be as healthy as possible going forward I think, and hope for the best.
Both Macmillan and Maggies do 6 week courses for life after cancer, have you thought of trying one of them, if counselling help is hard to find? I’m planning on that, as I am in a wobbly state post treatment, and have been told how much they help.
Wishing you all the best, Ned for 2 years is a fabulous achievement! Xxx
Ps I find it’s the clear cell bit that worries me as it seems so unpredictable doesn’t it, that doesn’t help I find, evil little things 😦
Hi congratulations on completing your treatment it’s a hard road isn’t it. I agree clear cell is scary but I’m proof that we can survive with it even though I have wobbles I’m doing well 😊 I would love help with my mindset but I’ve never been one for sitting in a group and talking about myself 😂 ovarian cancer seems to not be covered in my area re support groups anyway but some way to off load would certainly help me in sure. Nice to hear from another clear cell lady as it helps to not be alone 🤗
I totally agree my onc came out with a great statement half way through my chemotherapy. Your doing fine plus the mark in your liver is still there. I said what mark in my liver? She replied why would I tell you about it because it’s begnin??? I still worry about the mark in my liver whatever it is. Thank you for your comment clear cell is so rare and it’s great to meet another clear cell lady 🤗
My original oncologist, a grumpy, pessimistic git if ever there was one, wrote on my actual pre-treatment form that one of my possible outcomes was to be CURED - in huge capital letters. You're right, it does make a huge difference to your peace of mind. Though we had a few disagreements along the way - I stopped my treatment early - so far, he's been proved correct.
I was always given to understand that cancer can never be cured but remains in remission.I have been told this by family members and close friends who are medics.However some people always remain in remission and may eventually have something totally unrelated much later in life which will cause them to pass away .
Hi Shelly. My onc talks about me being cured as well (after a recurrence for low grade OC), which I think is sweet. On the other hand, my stage 3a disease which already recurred is not likely to stay away indefinitely, and I know that (especially with a ca125 that doesn't drop below 80). Still, it's nice of him to boost my mood, and I will enjoy my cancer free time as much as possible.
Your stage 1 OC might well be cured, but as the other ladies said, there's no real guarantee and you will have to find a way to deal with the chance (however slight) of it possibly recurring some day. Some ignore the cancer and live their lives, others dig into the details (like me). Fingers crossed you'll never have to encounter OC again. Maus
Hi Shelley mine was Grade 3/4c Low Grade Serous. I was told first appointment I would never be cured, but assured there were women they’d seen similar to me who were still alive 15 years on and further re-assured they were still alive so the numbers continued to extend. Along with some of the positive numbers on here and though the first statement was like a sledge hammer I do feel hopeful of their further comment. x
Yes I echo the sledgehammer scenario. I just think my onc was straight which was good but may be too blunt I wasn’t given the hope just hit with a hammer. I dreaded see her as I knew she would bring my mood down. When I had finished my treatment I wore the most sparkly outfit I could find so it would bring me down 😊🤗
It's because you're 1c1 that they don't say they can cure you - were it simply 1, then there's a chance of cure. But the number of ovarian cancer cases where it can safely be said you can be cured are vanishingly small, frankly - for the the majority of us, its a chronic, ongoing condition which will require intermittent repeat treatment I'm afraid. Survival rates are usually talked about in terms of 5 years rather than cure, though that doesn't necessarily mean a person only has five years at most. But being NED for two years is great though... and it may well continue that way. OC can be somewhat unpredictable, there is no hard and fast rule in terms of recurrence/survival.
Hi it seems we are similar stages so glad your reaching two years. Five years seems like an age away doesn’t it. I was told after a year my check ups would be 6 monthly but after two years they dropped from 3 to 4 months. I’m not sure if it’s a good thing or bad thing. I’m going with good as at least I’m being monitored 🤗
Hiya Shelly, im in 2nd remission.. (3c)6mths now.. and came to the conclusion..that I need to get a bloody life ..😁😁😁🤣🤣.. I look at our situation as we know roughly give or take a few years 🤞🤞🤞how long we have .. so going to make the most of it .. as the saying goes "its best to burn out than fade away".. hell im having a go . Live whilst we can . Chin up..you can do it 🏋️♀️🏋️♀️ xx
I don’t understand any doctor saying ‘it will come back’ as how do they know for sure? All they have are stats to refer to, and besides we are all individuals who respond differently so for you it may never come back! And being stage 1 you are in a great position!
I’m clear cell stage 3b and my onc was positive as I was ned after my surgery with my CA125 dropping to 8, so the chemo was adjuvant. She told me to live my life as though it’s not coming back so that’s what I’m doing! Of course I know i might recur but I’m trying so hard not to dwell on it, not easy I know ☺️ And I always remember asking my lovely CNS who has worked at my hospital for 25 years, if she knew many women with my type and stage of cancer who had never recurred, and she said there were loads over the years who had made it, and I should focus on that, so I am!
So keep smiling 😌 big hugs,
Liz Xx 💖
Thanks for those words of encouragement I too am 2b high grade serous and just had recurrence after almost 5 months ( but was incidental finding during routine prolapse repair sm tissue less then 1cm). Said probably wouldn’t of shown up in my numbers or scan for maybe 2 yrs. Finished carbo/taxol 6 rounds sept 4 2018. From incidental finding in Fallopian tube during routine hysterectomy . My highest Ca125. Was 28. And then down to 3. So Feb 14 started on carbo/gemzar then this week just have gemzar then week off for 6 cycles. Then talking about maintenance on some kind of parib . Thanks for listening. Sue
My Onc specifically used the 2 year mark as the point where statistically your odds SIGNIFICANTLY improve, but ultimately we, each of us, are in the hands of God and he wants ONLY the best for us. If you're a person of faith, please do not be afraid to ask for your miracle, to be healed, to have your body made whole. We are loved by God and healed by the stripes of Jesus. CLAIM IT! The more I give things over to HIM the easier this journey gets. I don't mean to sound "preachy" or, if a physical healing doesn't happen, to blame the one asking and then tell them it's because they didn't do it "right" and that God is somehow displeased with their effort, or something awful like that. It doesn't work like that. I just mean to share what I'm realizing is the most effect treatment I've come across yet. You've got nothing to lose by letting go and letting God. He is not there to scare, or hurt, or condemn. Fear separates us from God, so don't let fear get in your way. Instead fall back on love - on God!
I have been told the same thing as you. I was stage 2c with no lymph nodes involved. I went through very strong chemo including IP belly washes but the doctor won't even use anything too positive with me. Sigh. My Chemo nurses do and even the PA did say that I could be cured. I'm in the states and I think the problem is the doctors here are worried about lawsuits. Sad. So they stay very neutral. But I have had plenty of survivors tell me that there is much to be hopeful about. My scans are clear and CA125 remains low. I'm moving forward each day. Wish you the best. —Angie
I wish you the very best to you too Angie. I did decide on chemo to give me the best chance of survival the decision was mine and not my onc who just sat there with a stony face. You would think that doing the job they do encouragement and support would be paramount. I think your right though it’s probably to do with law suits which is sad. 🤗
Thanks for posting about this. Your question touched something in me, so I hope you don't mind that I just kind of posted a stream of consciousness response. 1c1 sounds like you could be very hopeful.
I am stage 4 ovarian/uterine type cancer, diagnosed 3+ years ago. I go through chemo and it comes back within a few months. My doctor keeps telling me that there is a chance it won't...and his patients defy statistics and do better than others. His staff tells me that too.
In general, I can't believe there's a large chance it won't come back. But I hate statistics so I have never looked. I'd rather not know the stats but I don't think they would comfort me.
On the other hand I seem to be very strong and deal with chemo and these other thjngs pretty well. Carbo-Gemzar-Avastin is my brew. 2 x a month. I think Avastin is the one that bothers me, but I don't know. I am in San Fran and just signed up with UCSF Symptom Management for cancer. I decided my General Practitioner isn't sympathetic enough.
One side effect just magically left me a few days ago, so I am happy about that. The other, shortness of breath, is kind of small and minor. It bothers me, but I am kind of used to it. I do intend to work on it. I have been on chemo most of the time... with a few months off. Mostly I don't like a needle in my arm and it takes 4 hours for all the stuff to get in me. I am lucky that my doc has acupuncture there (and a wonderful practitioner) while I get chemo, and I get that the whole time. I think that helps my sense of well being in general. A recent second opinion doctor told me, with people like me, they just keep them on chemo. That was hard for me to absorb when I heard that so directly from her. But I am pretty okay with it.
I prioritize feeling good emotionally. I recall when I was first told I had cancer, how confused, frustrated and scared I was that I probably wouldn't have that old age and long life I had expected. Now, after three years I feel differently. I feel like I have lived a long time in these three years and I well imagine that I have at least a few years left... I sometimes have fantasies about the cancer going away...fantasies that they invent a new drug, fantasies that I try immunotherapy and it really works on me, fantasies that I have such a strong constitution that I just live and live, even with cancer, for another 20 plus years. I am almost 70 already.
Basically in my mind it's all about staying in touch with my happiness, gratitude, appreciation of life and marveling at the good fortune I have so I don't have to work very hard. I have been on an even keel ...I do worry, mostly about developing another cancer that will get me quickly, but I things have been positive, in remission, but on chemo till September at least (or 'forever...') But to answer your question about hoping for a cure, I embrace fantasies and enjoy them, like the daydreams I had of growing up famous and in love. I just try to stay in touch with my peace and happiness.
Curing cancer... yes many don't like than language, and I am in that camp, I think. It's like with AIDS in the 90s we used to say 'We are all living with AIDS' as a way to identify with our friends who were sick, and to realize it's part of the planetary condition. I look at cancer that way too. So many of my friends have cancer, that it seems like part of regular life.
I am a bit in denial about my mortality too. I realized when I was diagnosed, that I really thought I would be immortal... so my private joke to myself is how I keep coming back to thinking I am immortal... if anyone knows what I mean.
I hope these ramblings were okay. You wrote such a short, succinct post that expressed it so well. Thanks...
I’m going to try again lol posted 4 times to cyberspace 🚀
I was told I was curative when diagnosed in 2012. I had precautionary surgery and histology was negative. The cyst on my ovary contained stage one cells. CA level 7
Three years later shock recurrence but still told curative because it was an isolated tumour in my pelvis. Shadowing the desktop 3 trial it was surgery. CA 18
CNS said I would recur again as everyone does after a first recurrence. Consultant adamant curative go and enjoy life.
I think being told you are cured or can be actually helps you to carry on with living. I actually thought I’d had a close call and was so lucky.
Two years on terminal with mets in liver, small bowel, peritoneal area,
Epigastric area and abdominal washing were all negative
Why do they use curative? It’s written on my chemo books and consent forms. Does it help positive thinking? My last scan report says ?4? Re-staging?
So many lovely ladies from stage one to four all such different outcomes. I thought I could search out what to expect and what’s next. I can’t because it’s unique to each of us
Hi LA I’ve been using the app but had to go back to the webpage as I find it misfunctions more often than not. I do agree about the word cure helping us to carry on living. I needed a light at the end of the tunnel and I just felt she chucked a bucket of cold water over me every time I saw her.
I look back to the start of my journey and fondly remember all the ladies with diagnosis so similar to mine and wonder why I’m still here and they aren’t it’s heart breaking. I feel guilty and so very sad. It’s difficult to live a normal life but here we are getting by a day at a time. All my love LA keep on keeping on huge hugs 🤗 🤗🤗🤗
i think they do not know exactly whats happening, especially in rare situation.
I have two dg like this
serous micropapilary non invasive ovarian tumor (low grade carcinoma) 1a
2 yrs, 4mnths right now, monkey is on my back, every simptom, every sign makes me sure he will always be there.
In meantime im ordinary happy person.
And im so glad you all are here, my sisters, thats how i avoid panic attacks and so on.
When I finished chemo 2 years ago I said I was getting back into swimming.well I did and started the aqua fit class . Well I threw myself into it and ruptured 3discs in my back and pretty much been in constant pain ever since . I could kick myself for not taking it easy. But things could be worse so I’m just greatfull .