Ovarian cancer incurable??

[lisarm5]

I was very upset to read in someones blog that ovarian cancer is incurable. This is definitely not what my oncologist told me. I was told that two years in remission would be very positive and after five years consider yourself cured. As you can imagine I an now very confused and disheartened to say the . What do other people think of an I just being naive?

[thehusband]

Whilst i cant speak with any authority, my understanding has always been that stage 1 & 2 can be totally removed......dont know if that is actually a cure or not. Whilst stage 3 & 4 is rarely totally removed.

I have also understood that if after 5 years it hasnt 'come back'.....you can consider yourself cured.

I think maybe its the definition of 'cured' that maybe people differ on. My wife is stage 3c and i would give my right arm, and leg, for her to get 5 years off of symptons, let alone whether that would count as a cure or not i dont know.....but like many things its different peoples perception perhaps.

Heres hoping that you and everyone else eventually get to the 5 year mark irrespective of what that actually signifies.....

[Hidden]

Hi Lisa,

If they catch Ovarian cancer early enough the it is curable it might never return...therefore curable..what you were told is right...the longer you are in remission the better the outlook ie chemo is likely to work the second time if you have been in remission a long time..you might never have a recurrence in which case you are cured...but If it returns it is then deemed incurable..but still treatable there is n point in you worrying about something that might not happen if your oncologist has told you this then you have nothing to worry about everyone is different and they are the ones that know your medical records so please don't compare yourself to others..If you have read someone say that they are incurable that is them not you..so just go by the advice of your medical team..they are the ones that are privy to your condition ..I am writing in a tiny box..so I hope this makes sense love x G x

[Hidden in reply to Hidden]

Sorry about the errors but I think you can understand it..so I won't write it all again best wishes x G x

[lisarm5]

Thanks Gwyn and thehusband. I think what upset me was that in the blog I was reading the lady said that she had thought she would be cured once she had surgery and chemo and then she found the ovacome site and discovered that it was in fact incurable. I don't know what this lady had read on the site to make her come to that conclusion but as I'm new to the site I didn't know if that was the general opinion in which case I would be very disheartened and disappointed as up til now I have found this site very positive and uplifting. What you have both said is very encouraging. Thank you x

[Archiebanana]

Hi LIsa

I can only say that I found the same as you. My oncologist and surgeon had never suggested to me that it was not possible to cure me, although they also never said they could. I assumed that I would have chemo and the op and would be fine. When I joined the site I read the same thing and was very upset about it. I've learnt so much from this site and had lots of support from the lovely ladies, unfortunately we read good and bad things. As Gwyn said we are all different and all react differently, whatever my prognosis I will keep fighting and remain positive.

Unfortunately for me I found out last week that my cancer had reared it's ugly head again after only 4 months in remission. I am waiting to see my oncologist to find out what's next...definitely more chemo. When I saw my surgeon last week he told me this was a chronic illness that we would keep fighting.....so bring it on.

Please try not to worry too much, just take each day as it comes. Remember you have many friends here and will never be alone.

Love Linda xx

[Jan76 in reply to Archiebanana]

Hi there Linda ..

So very sorry to read that after 4 months 'it' has returned but you are very positive which will help you no end .

We could see our selves as George and the dragon ..we need to slay the dragon with all we have got ...

Take good care now xx

Love Jan xxx

[lisarm5]

Hi Linda, thank you for your reply. I'm so sorry that your cancer has returned and that you face more treatment, you sound a very positive person and I'm sure that will help you over this next hurdle. I have read so many conflicting stories and articles on OC that I don't know what to believe sometimes.I know we are all different and respond differently and that there are always "miracle stories" to uplift us. I just hate the uncertainty of it all....Do you mind me asking what stage your cancer was and how you coped with chemo? X

[Hidden]

Hi Lisa

Sorry to hear that you were frightened by something you read here. It is not what you want when you are seeking help and reassurance! There is a lot of information on the web about ovarian cancer and unfortunately some of it is very scary. There is no way of knowing what applies to any particular person and what doesn't, and difficult though it is, it is best to be guided by your own oncologist, as Gwyn says, because they know you as an individual case.

Generally speaking it is the advanced stages that are said to be incurable, but treatable.

I know what you mean about the uncertainty of it all, I hate that too.

Monique x

[ladygooner-uk]

Hi Lisa

I agree with the other ladies on here, I was initially told by my onc they were looking to cure my cancer- even at stage 3, but after 2 years 10 months clear i was told it had come back, so then told it would keep coming back, so I think, everyone is initially treated in order to cure and then its, essentially a waiting game, so both are right- I hope that makes sense!

Take care and, just remember- you might be reading this 5 years in the future having been clear all that time- I really hope you are.

love

Sue

X

[charlie12]

Hi Lisa

So sorry to hear that you found part of a post here distressing.

Surely the advice of your oncologist, who has many many years experience, multiple qualifications and in-depth knowledge of your particular health is far more relevant for your particular situation ?

We have all written posts here when we have been frightened or scared, and they have been read by ladies who are also frightened and scared. It's no wonder that misunderstandings arise from time to time, although for the overwhelming majority of us these forums have been a lifeline. However some information is people's opinions or is information for taht particular individual which may not necessarily be 100% fact for the person reading it.

As part of my job I look at medical evidence and I am certain that the statistics on survival are way out of date. Many relate to far older ladies who had multiple health issues. Also there are scores of new treatments in the pipeline that may well further improve outcomes.

I had a very large borderline tumour removed in January 2010, so thankfully didn't need chemo or radiotherapy. I have been fine since. Many positives have come of this spell, I have taken up running, I volunteer for my local health promotion unit and it has brought me so much closer to friends, family and in particular my amazing husband.

Good luck with your treatment

Charlie xxx

[Archiebanana]

Hi Jan

My surgeon said being positive helps so I'm determined to stay as positive as possible. I'm very disappointed (to say the least) that 'it' has returned so quickly, but unfortunately it is something I have no control over, so fight again I must. I've made some great friend son here and have lots of support. Thank you so much for your kind comment. I think it's a great idea to consider ourselves as George slaying the dragon, so he'd better watch out!!

Love Linda xx

[Archiebanana]

Hi Lisa

My cancer was 3c grade 3. I had 5 lots of carboplatin/taxol followed by a hysterectomy and removal of omentum in April. I had 2 more chemo's after that followed by a CT scan in June. My oncologist that told me I was all clear and I was then in remission. My GP argued with the 'all clear' and said I shouldn't rely on it! As it has returned so soon I think he was probably right. I've had a wonderful summer of feeling really well and still don't feel at all poorly. I wasn't too good with the chemo I'm afraid but lots of people are fine. I never felt nauseous but was really tired, had neuropathy, my head felt odd a lot of the time and I couldn't drive. My white blood count was often low and I was admitted to hospital on 2 occasions with pneumonia and collapsed with low blood pressure. I had to have a blood transfusion before my op as my red count was low, but I got through it all! I think I am certainly not the norm so please don't worry other women have carried on working and suffered very few side effects, so again we are all different and react differently to everything.

I really wish I'd found this site before I started my treatment as I felt so alone a lot of the time. Please be assured you will get lots of support from here and always a kind word.

I hate the not being in control that this illness brings, it's a case of relying on others most of the time. I have been extremely lucky in the care I have received from Maidstone hospital and my excellent Gynae surgeon and oncologist.

I think you will always see and hear things you don't want to but you will cope.

I will remain positive, but will have my down days I know. I refuse to worry too much until I know what the plan is for me, but fight I will, whatever.

You take care.

Love Linda xx

[TinaWright]

Hello Lisa,

I have also been alarmed by similar posts, but I checked this out with my oncologists on numerous occasions and I have always been told the same as you. I was diagnosed with a 2C cancer. Mine had spread, but surgery was able to remove it all. The six sessions of chemo was needed as a mop up as I had cells escape into the cavities.

I was told that a CURE was their aim and I have to feel optimistic about that. I have been clear for 2 years now and are now on 4 monthly appointments. I understand that after 5 years in remission we are discharged from the clinics. That just about says it all, doesn`t it. I do know I have a 50% chance of cure. And 50% of ladies with OV Cancers are still alive after 5 years. We must see that as a huge positive my lovely.

I think that when we post negative stories, we should take heed in remembering this should be about our own personal prognosis.

I would therefore like to ask everyone to be careful when stating things like OV Cancer is not cureable. Statements like this puts the fear in us all especially if our diagnosis has been a more positive one. Like all cancers some OV cancers are not cureable, but lots are, its not a matter of fact that ALL OV cancers are uncureabale, this is not the case.

Each and everyone of us is different and each and everyone of us will have a different outcome. But when we are told we have a good chance of CURE then we have to believe the experts. These specialists are speaking about` US` as an individual and this we must remember.

To be honest I don`t read too many posts I find them too deflatting and too depressing and it has at times but the fear of god into me too. But then we all have choices in what we chose to read. I do understand that those in more need of speaking how they feel must continue to do so. Thats what this group is and should be about, a place where we can shout out loud about our inner most fears, some people can not do that with family and friends. But yes, it can also dramatically effect others.

Just remember that if your cancer is not cureable, it doesn`t mean that all are not.

Love to you all and pray for each and every one of us as a sister sufferer.

Tina xxxxx

[pixinafix]

Hello

Never pay much attention to this incurabe stuff. In my mid 20s I had a brush with breast cancer. I'm now 60, and breast cancer has not returned. Am I cured? If it came back, would I not have been cured?

My attitude is that you only know the answer once you've died without it returning. What matters is that you're alive now, and hopefully enjoying life rather than sitting around wondering when you're going to die. Being born and dying are the 2 things we all have in common - you got through the first of these, so try not to fret about when the second might be.

Love ChristineX

[Sebbie in reply to pixinafix]

Christina what a wonderful sentiment . Thank you . I am afraid I have been doing a lot of sitting around mopping recently .

[Archiebanana]

Hi Tina

Thank you for your lovely positive post, I totally agree with you! I think we have all probably had a few few frights and read things we haven't wanted to, but to me the benefits far outweigh this. I have found friendship and a lot of support, before this I felt so very alone.

Love Linda xx

[blue100]

One of the first things my Oncologist ever said to me was "It's not curable"

I was hospitalised at the time and am stage 3c. Do not be disheartened, I so agree with everyone above ...the earlier you catch it the better the prognosis. Even so, none of us are statistics and we are all unique ... stay strong.

All the best with your treatment and stay positive.

Sue