life expectancy: sarah Has anyone ever asked... - My Ovacome

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life expectancy

Sarah23 profile image
23 Replies

sarah

Has anyone ever asked their oncologist what sort of life expectancy someone can have while living with O.C?, I can only think if you dont have to many set backs i.e too many tumours along the way that you should do well, I have never seen anyone write a blogg that they are still living with it past 70!!

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Sarah23 profile image
Sarah23
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23 Replies
wendydee profile image
wendydee

Hi Sarah

I see quite a lot of ladies when I go to my local gynae/oncology support group in the course of my ROCC stuff, some of the ladies there are in their 70's. I was 52 when I was diagnosed with borderline OC and treated. I'm 61 now, and I'm planning to still be enjoying life in my 70's. Always fingers crossed though ;-) However I don't know of any statistics

Love Wendy xx

Hi Sarah,

I know what you mean. It seems that the stats only apply to 5 year survival from first diagnosis. To be frank, I tend to the belief that there are lies, damned lies, and statistics. When you drill down, the stats around today are based on information gathered by 2008, so already out of date, and then they do not reflect the people who have never been diagnosed with in the system, or who have declined treatment. I know of 3 people diagnosed with cancers (not ovarian) who have refused the treatments offered, walked away, and lived into old age, so I suspect there must be many who have. For whatever reason, we will never know what led those cancers to disappear.

In the end, the only statistic that matters, is the one that applies to you/me!

Very best wishes,

Isadora

Sarah23 profile image
Sarah23

Hi Wendy,

thanks for the answering my blogg, I wonder if is more to do with the stages of the tumor when first dignosed, or do you think we have come on with treatment, I noticed that you had borderline O.C does that me it was a low grade, and that is why you didnt need Chemo, where as I had a clear cell which may come back in the future, do you know if the women at the group have had more tumours along the way/, and it has been down to the success of their treatment? I think they have come on with the treatment so my oncoligist told me.

thanks Wendy

from Sarah.

wendydee profile image
wendydee in reply to Sarah23

I think (from info on here (I think that was thanks to Isadora!) that borderline OC doesn't react to chemo. I don't know about the staging of it. I think it's classed as 1c, but again, that's only what I've read since treatment. I know I was showing signs and symptoms for about 3 yers before I was diagnosed. I've been told that there are about 60 forms of OC, so, as Isadora says the only statistics that count are those that apply to us. A couple of the ladies at the group have had recurrences and have been successfully treated, but I don't know too many details.

I agree with Isadora about statistics! They can be bent and shaped to say more or less what the prevailing wind dictates!

Love Wendy xx

ScardyCat40 profile image
ScardyCat40

There are some survivorship cancer statistics on the cancer research website but if you look at the standard deviation, which is a measure of how much the results can vary its quite big. I think it is very much depends on what subtype of cancer and what grade as well as the staging.

Borderline cancers are very slow growing and non-invasive so its much easier for them to be completely removed surgically and in the majority of cases there is no further reoccurances or treatment needed.

I was initially diagnosed with stage 3 primary peritoneal cancer, which has a very poor prognosis but after surgery I was then rediagnosed with stage 4 ovarian cancer - the 5 yr survivorship rates are very poor. However my oncologist is very positive about my diagnosis and says my prognosis is better because most of the cancer they found was slow growing low grade, which I understand I could live for years with.

So don't give up hope and concentrate being in the percentage that survives.

bosue profile image
bosue in reply to ScardyCat40

I have just had a second op .first ovarian then a year later June this year fas it had gone to the peritonean, i'm due to start Chemo on 3rd August, and am getting very nervous about the whole thing, everyone says you must be positive,but as other people have said life span 5 years ,how can you be positive, I'm getting really scared and depressed, I've only just found this website, hope I can get some positive feedback

ScardyCat40 profile image
ScardyCat40 in reply to bosue

I start chemo this Friday and I'm a bit scared as well. I've spoken to a few people on this site who've been through chemo and they have reassured me its not that bad but have advised me not to plan to do anything the first couple of days afterwards and to stop up on laxitives

bosue profile image
bosue in reply to ScardyCat40

i've been surfing on this site and now feel more positive, what a great site, thanks keep in touch

wendydee profile image
wendydee in reply to bosue

I'm glad you found the site. It's a source of reassurance and information and quite a lot of positive vibes in the fight. It is quite natural to be scared at times though, so go with the flow. One thing I found helpful, was thinking "right here, right now, I'm feeling not so bad" I then looked for three things to feel glad about before midday. Yuk! I sound like Polyanna! However, I do believe in the power of positive thinking ....

There are some good threads on here (blogs I think) about staying positive and about eating well

All the best, Wendy xx

Even the doctors don't know the answer to that! I am now 4 years into oc, grade 3 (with an agressive fast growing cancer), on line 5 treatment and still here. Two years ago I pushed my doctor for my survival time as I was fed up with everyone presuming I would go on forever. He said 8 to 15 months, so I'm already on borrowed time. With positive outlook and good care I hope to go on a bit longer now, and get to see my brand new granddaughter born in LA.

viv

bosue profile image
bosue in reply to

glad to hear it, and that you still feel well, and to see your lovely grandaughter, my grandchildren are in Cornwall, and wont be able to see them while on chemo,so its skype until then, just dreading the side effects of chemo carboplatin, but you have made me more positive thanks

Tulsa profile image
Tulsa in reply to bosue

Bosue, please don't dread your chemo, believe me it is not that bad. If you did'nt know you had just had chemo then you would just think you were feeling a bit under the weather. I have said this before but I felt on about the second or third day just a bit spaced out and slow. Really as if I had just taken a big glass of wine on an empty stomach and, as I was reminded, people pay money to feel like that! You just have to pace yourself and go with the flow and promise yourself a treat when it is over. I was so lucky to have a good friend come to each session with me and we chatted and laughed our way through it.

Good luck.

Tulsa

bosue profile image
bosue in reply to Tulsa

thanks for that, and I do like a glass of wine. I have a lovely husband who is going to come to the treatments with me,I really feel better reading all the comments, and like you who have had the treatment. thank you

JanetMoon profile image
JanetMoon in reply to bosue

I am on day ten after my first chemo for stage 1 OC, i feel GREAT!! I would say that on day three i didn't take my nausea meds (forgot) and i got a bit queasy, threw up, took meds and about an hour later was good again. Since then not much of anything, Just drink loads of water or G2 and relax!!! Good luck :)

Olive profile image
Olive

I shall be 70 in a few weeks time and was diagnosed with stage 3 ovarian cancer when aged 53. I was told chemotherapy does not work for everyone and if it did not work for me I would have about a year. At the conclusion of the chemotherapy cycles I was still told I am high risk for it to return. My CA125, taken recently, has a count of 5, although it was explained to me that the blood count is only one factor of ovarian cancer. At the moment I feel fine and count myself hugely lucky to have had 17 years following such scary news. I would say to any woman that if anything about you seems not quite right then seek a consultation first via your GP - and persist. They often appear to think we woman are imagining things, are time-wasters or have indigestion following having eaten rich food the previous evening. To the writer of the question and to everyone else who reads this, my message is as above, be persistent. More and more is being done re early diagnosis of OC, but women need to "bang on the table" of the professionals and make it known they have odd symptoms. My chemotherapy and treatment I understand cost a fortunte (for the NHS). Prevention would have been better than cure. Olive, x

Lindy4 profile image
Lindy4

Olive

thank you very much for posting your story you are a true inspiration and for all of us in fighting this horrible disease. Whether we are well or in treatment ( and still feeling well) we need stories like your to give us hope so thank you again and I wish you a happy old age! Also want to take this opportunity to thank the wonderfull Isadora and Wendy dee who always can be relied upon to post wise helpful and comforting information.I look forward to reading their posts when i have the time to get on the site. Finally the fantastic Ruth Payne where would we all be without her help and guidance.

To Bosue and Scardycat wishing you the best of luck but really do not be scared as chemo is so dooable and I found it more endurable than i expected. ( I had the advantage of having it through a port catheter which if you are offered that TAKE IT! IT WILL SAVE YOUR VEINS) And in any case what is the alternative! You will be fine with good care, take the meds, take the laxatives and drink drink drink lots of water. Read other posts on here and come back and let us all know how you both are.

Anyone reading this who thinks they may have OC symptoms get straight to your Dr and insist " test me now" as it probably wont be the worse news and if it is you stand a better chance of successful treatment caught early.

WISHING ALL VERY BEST TO EVERYONE AND THANKYOU OVACOME FOR THIS PLATFORM FOR ALL OF US.

Lyndy4

bosue profile image
bosue in reply to Lindy4

thanks for your wishes had first chemo , felt a bit off for a couple of days but nothing too bad and now feel back to normal, can't believe it, but now been told it gets worse the more treatments you have. Still if I feel good now , just hope its not too bad. You seem to have got through it o.k Thanks Bosue

I second that. I am now over a year since diagnosis, surgery and chemo for Stage 4. I am feeling great at the moment but each time I 'waver' I read the uplifting blogs on this site and my mind is put at rest again. I have also mastered the art of thinking positive,,,,,,,,,,,well most of the time!

Good wishes to everyone.

Chris x

nikki9 profile image
nikki9 in reply to

hi chris i also have stage 4 oc and i have terrible days but your message has helped greatly thank you nikkix

Eleni profile image
Eleni

Thank you to Olive for her inspirational story; it is truly uplifting for us all to hear of long term survival.

I've just finished my 6 cycles of chemotherapy. Everyone reacts differently, but these are some tips I learnt which may be useful:

I tended to visualise the carboplatin as the SAS going in to bash hell out of the cancer cells (something like the green ones in Toystory ha-ha) Visualtion doesn't work for everyone, but it helped me enormously to think of it like that rather than as an aggressive poison. Each time I felt unwell after chemo, I would tell myself that if I felt unwell, then the cancer cells were feeling worse!

I also used to prepare for my chemo and eat high fibre, vegetarian foods for at least 2 days prior, the day of and for about 2 days after the chemo which helped my bowel. I would have 1 laxido on the day of chemo and for 4 days afterwards. the constipation was then controlled somewhat.

I set alarms in my phone for my drugs as chemo slush brain meant that I forget to take them otherwise. I also have a drug chart on the fridge which my Husband made on a spreadsheet for me to tick them off as I took them. Keep Rennie in addition as the indigestion/acid reflux can take you by surprise but is really unpleasant and painful; they took it away really quickly.

My veins would always be affected and i would have pain in my hand and forearm for about 4 days afetrwards. I learnt that if I asked for a heatpad to be on my arm during the time the carboplatin went in, this would definitely be alleviated. I also had a small heatpad that was activated in the microwave at home should I need it later.

My freezer would be full of suitable foods, the house would be clean (so that I didn't fret and try to do stuff!) and I'd have some wort of menu plan for my Husband to follow for when I couldn't do much. The house is full of anything ginger; biscuits, cake, beer, chocolate, tea...Drink loads of anything you fancy. I personally stick mostly to 2 litre bottles of sparkling water; as it's advisable to drink 3 litres of fluid a day, I could measure my intake knwoing that after one of those, I could then drink anything else to hit the target.

I also had a stack of Hello and other comics as the chemo slush brain wouldn't let me concentrate on anything else.

To help me sleep, I have an inflatable camping pillow filled with water which stays in the fridge and is covered with a towel on top of my normal pillow; the coolness is fab for chemo flashes. I take 2 Piriton before sleep. They were prescribed by my GP to stop the restless legs but they also knock me out a bit. If I still have insomnia, Boots do a wonderful sleep spray with rose and geranium that seems to send me off again after spraying on my pillow.

Try not to fight the symptoms and get too distressed by them. If you do suffer with any feelings of depression, tell your GP. I have been prescribed some low dose beta blockers to take when necessary and they work perfectly.

But principally remember that as a great Eastern philosopher once said "This too will pass"

Eleni,

This is lovely advice, thank you for that, love the SAS bit LOL.

Wishing you well.

PS.

Here is a nice saying as well:

Turn your face to the sun and your shadows fall behind you.

lill profile image
lill

Diagnosed at 71, four years ago. The first chemo was six hits over a period of eighteen weeks. Lost the hair (never my crowning glory) but after treatment have felt fine, with hair grown back, and able to live my normal active life. I am now well into my seventy sixth year but a week or two ago, at a clinic check and scan they found small patches had come back in the abdominal cavity. I'm back into the same chemo, programme, which is not pleasant, but I am hoping for at least another four years of remission. Emotionally, I think it is much easier to deal with when you are older.

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