Hi :) do we all think there is enough support ... - My Ovacome
Hi :) do we all think there is enough support and awarness of ovarian cancer ? thanks sian
No there isn't. Specialist staff and bodies care. Very little public awareness though. No significant warning symptoms mean we urgently need a screening process to save thousands of tragedies. Needs to be done at same time as cervical smear. Suggest if blood test shows raised CA125 that utrasound is done to check.
Fully behind you on this Sue!
My GP tells me it is now policy, in our health area at any rate, that any woman over 50 presenting with abdominal symptoms is to be given a ca125 test. If that is raised then scans etc will follow! I had a real to do with a delegate at a soroptimist conference (I was staffing a stall for target oc) who was virulently opposed to screening.
I talk about it all the time! In supermarket queues when I am slow because of the neuropathy! In shops and cafes, to young women even to people who prefer to ignore cancer and don't want to hear about it! The earlier it is caught the better your chances!
M
Hi Sian,
Most definitely not, Ovarian Cancer is a very isolating cancer to have, and hardly any of us had ever heard of it before we got it ourselves...it is now up to us to raise the profile this charity began with one person with OC (Sarah Dickinson) she felt so isolated that she set about to raise awareness of ovarian cancer...hence this charity is a legacy of hers, I attended a raising awareness meeting (run by another charity) and was appalled at the lack of support about a dozen people out of the whole of the North West... now I know people can make excuses ie too ill on chemo etc.. and some people are too sick... but if we don't try harder ourselves no one else will...sometimes as well it is too far to travel and expensive lots of things get in the way...so if you feel isolated you are not alone because I do too...and I am very grateful to have the support on here with lovely people (all be it virtual) ..the charities that exist try their very best and work very hard....(sorry if I am ranting) rant over love x G x 
I also agree with Gwen on this one, I often wonder why, I wasn`t told about this charity at the oncologist clinic?
I wonder how we all as an individuals found this site?
My husband found it by searching the net when I was too ill to move from my bedroom, it has been my life saver.
I wonder if we should all seriously think about mentioning this site to all of oncologists and ask if they will forward the information onto their other patients. Could we ask to put up posters around the contry to advertise the charity. It would be so incredibly cost affective, what do you think ladies? It may help if we are able to become more proactive in spreading our word.
No one would take my fears seriously, I begged, kicked and screamed for a hysterectomy long before the symptoms, even right up to the day I had my scans I was turned down flat.
What changed their mind? It was too late already got the cancer!!!!
Is any of this fare? I had to get the cancer before anyone would listen, my argumant is that the first family test costs the NHS £500, other family menbers after this costs as little as £30 each.
Adding this up, alonside preventative surgaries or screening, it is still less costly to on going cancer treatments such as chemo or radiotherapy.
Of course I was then referred to genetics for heriditary testing. It turns out I have inherrited the faulty braca one mutation from my mother (just as I had feared), no one would listen because I only had the ONE family member, as far as we could be aware.
Both my daughters also have the faulty gene and they are offered preventative sugery as well as regular breast screening.
I am now ofcourse aware that we all have an 85% risk of breast caner too, but I am still turned down surgery because I must wait until I have been OV cancer free for a total of 5 years.
WONDERFUL!!!
Had I been tested for the braca mutation, all this could have been over and done with by now and I would be able to enjoy and get on with the rest of my life.
There is just not enough publicity about OV cancer, I didn`t even think to be looking into Breast cancer, we may have an 85% risk of the disease but we have not one family member who has had it, unless we go as far back as my great grandmother`s. They would most probably never have known anyway.
Let`s all start thinking how we can raise awareness, we can do this from our sick beds, can`t we?
Take care girls, we will keep fightiong the battle together, massive hugs to you all from Tina xxx
Now my sciatica is improving I am starting on Phase 2 of my publicity campaign! I am writing to every large store in York enclosing a copy of the Target OC leaflet giving the symptoms and asking can I bring in a supply to be placed in their staff room and make myself available to answer any questions. I have also volunteered with my own doctor to be prepared to talk to anyone likely to have a colostomy or ileostomy about how I have coped with it.
If I can do nothing else I may ensure some people are caught early enough and others may be a little less daunted by coping. It is this site and the members of it that have inspired me!
I was told about the site by my lovely specialist nurse!
Margaret! Xxxxxx
Hi Sian, Sue, Gwyn, Tina and all you other friends!
I must have been lucky, even though it was ten years ago. I was given a card for Ovacome membership (they have only been connected with this site for 3 or 4 years, I think!) when I had my op. this was the work of the wonderful CNS, Emma, who I see in the gynae/onc support group, once a month. I think Southend Hospital is ahead of the game though, when compared with some areas. I've been a member since 2002. The charity is wonderful in all the work they do. One great initiative is training women who have OC as ROCCs . We have a region each and do whatever we can to raise awareness. I work with NHS cancer groups in Essex and have done stuff with local radio and newspapers. I have also distributed posters to GPs but, sadly, they are not often displayed. You can get posters, little BEAT cards via the Ovacome website (just google Ovacome) under the resources section I think, or by contacting the info and publicity manager. All the info is on there. There is also the BEATonline symptom tracker, to record symptoms and print out to take to GPs or hospitals. All good stuff! Apologies to those of you who have already found out all this info. I know lots of you have
Next week, some of us are going to lobby MPs, again an event organised by Ovacome. There are also other OC charities, which have a slightly different focus (Eve Appeal for all Gynae cancers, raising money for research and TargetOvarian, who lobbies and informs, among others I think)
If all of us members .......... You are a member of Ovacome, as well as this site, are you? ;-)...... We're to get a few BEAT cards and give them out to friends who do knot know what to look out for, and a poster, especially tailored for GP surgeries, and a poster for putting up where our friends, daughters, neighbours work (in the ladies' loos) we can all do quite a bit to spread the word. It's very heartening to see this week that the survival rates for OC have improved, and I am sure that is, in part, due to word-of-mouth and publicity by charities like Ovacome.
If you haven't already done so, look at the site and see what you can do! Email ovacome@ovacome.org.uk to get resources. I have just looked on the site and the resources are not immediately obvious to me! You go on the Support Us choice, then Become a Member. There is a form to fill in on there.
Any further ideas as to what we can do to raise awareness will be most welcome. Thinking caps on, girls!
Love Wendy xx
Hi All
I was also given the card after my op when OC was diagnosed - but I didn't
come on the site until all my treatment had ended. Wish I had thought to have
a look while going through my chemo as I know you would all have been a
great help to me.
Angie xx
Wouldn't it be a good thing if we could get some support from major (or smaller) firms and women's magazines in the same way that breast cancer does? If anyone wants to buy a pink ribbon it is so easy to do when you pop out shopping. So many products advertised with the pink ribbon symbol. I think we were described in a Guardian article as "breast cancer's poorer cousin".
Please don't think I mean that breast cancer gets too much attention, that would be sick. My dear sister-in-law was fighting breast cancer last year at the same time I was fighting OC. (Successfully)
Asda supports breast cancer ..would be great if one of the other giants could do the same for OC ...
Jan xxx
I Will add that to my letter to all the major stores! We have 2 Tescos, 2 Sainsbury's, Asda, 3 M&S, 2 BHS, Fenwicks, 2 Debenhams, a local department store and 2 large branches of Boots as well as numerous Tesco express, Sainsbury's local and chains like Top Shop. We also have a Waitrose. They support local charities and if enough of us wrote to our local Waitrose maybe they, and John Lewis, would support us! Most people do not realise that OC sufferers have an above average risk of breast too!
Speaking of which wish me luck! I have an appointment at the breast clinic to examine a lump! The irony is that it is on Dec 4th, exactly a year to the day since my last tumour was removed!
Neither my GP nor I are overly worried, I had a non cancerous lump and went through this procedure some years ago but we are not taking any chances!
At least the breast clinic here does the mamogram, exam and needle biopsy all on the same day and you do not get away until they have the biopsy results. If the news is bad you get counselling immediately!
Love M
One Answer and one only NO there is not enough awarness in the media about OC ......
I was lucky enough to be given a Ovacome card in my folder when I was diagnosed back in Jan of this year so well done The Norfolk and Norwich Hospital ....
I have posters up on our ladies loo at school ..lots of female teachers there .... doing the rounds with the posters at chemists in our area .
OC needs to be focused like other cancers have done on TV ie Lung cancer and prostate cancer have all had prime time airing in raising awarness ..
Jan xxx
A suggestion for Ovacome. Why don't you tap into the families of women who have OC? My wife has a lot on her plate but I (I use her sign in) and others have a close motivation to hget involved. Maybe I will ring you to make some suggestions about contacts I have.
Ps! Just a thought! I shall send an email to the editor of my local paper with a copy of the letter that I am sending to the store managers!
Look out York! A one woman campaign is about to start rolling! On second thoughts I may delay until January when store managers are less caught up in the pre christmas hype and the news is 'dead' then I can also raise awareness of Ovarian Cancer Month in March!
M
Just thinking Margaret, when your letter is ready could you post it up in a blog? Then we could copy and paste it into a Word document, edit as necessary and send it out in our own areas. Probably a good idea to leave it till after the Christmas madness is over.
Love
Linda xxx
That is a good idea Linda ..I am sure margaret will compose a great letter ..I often know what I want to say ..its getting down and sounding right which is so important if we are to catch peoples attention .
Love Jan xx
Yes, OC awareness month in March is a great time to focus on. Lots of letters to local shops and newspapers. They love doing an informal interview and pic with women who are fighting it or who are in remission. It's a great way of publicising symptoms and raising awareness. If you need any info, ring or email Ruth Grigg via the Ovacome site.
W xx
Will Do!
I am going to run it past the publicity people at Target OC first so that I do not say anything inappropriate.
M
Waitrose already support one woman that I know of with OC she is called Letitia and was a speaker at a T.O.C event that I attended this time last year...she said they are very open to take on board charities.....and was only too willing to help T.O.C in her area love x G x
Yes! I heard something similar but it does tend to be local!
Wow, how marvelous this is - you ladies have pulled me out of my depression this morning.
Of course I will cover my area too.
Talking about breast cancer awareness and the related risks to OV cancers. I have the faulty brac one mutation as do my 2 daughters. There is so much puiblicity going on about this right now with Wendy Watson, more than 2 decades ago, the first lady in the uk to have a double mastectomy to prevent the disease, loong before genetic testing was available.
With this faul;ty gene we have a 50% risk of OV cancer and 85% risk of Breast cancer - because of the risks it is always aimed more towords breast cancer - un-yet it was the OV cancer I got as did my mother before me. We also need to spread the word about herriditary breast and OV cancers because I only had my mother with it and no one as far as I can be aware who had breast cancer. My point is our family still have the dreaded gene. And although in one respect we are offered preventative surgary and regular breast screening, there is no such screening offered for OV cancer, so all we can be adviced is to have a hysterectomy as soon as we are finished making babies.
My argumnent is I was turned down surgary time and time again and wasn`t even offered genetic testing until I already had the cancer THEN all of a sudden I was listened to and the results told the rest of the story. All I can do is hope this is a massive learning curve for all medical proffesionals, I hope that if we can spread our word to a very wide audiance, the next time a patient is worried about a family history, they should be taken seroisly.
At the end of the day, I am a huge believer in following our own personal gut instinct, the biggest hurdle to jump is being heard.
Oh boy, us girls are going to be really busy in the new year - between us we can make such a difference.
Love and God bless you all - have a great weekend and wishing us all better days ahead
Tina xxxxx
How awful for you and your family Tina ..(carrying the gene) raising awareness of this must be important to you...the trouble is when you do...you leave yourself wide open to criticism i.e ...people tend to think "oh here she goes again" not realising you are trying to save lives....(and more importantly their lives) ...not an easy task
Best wishes love x G x
Target OC has some great material! I have sent a draft letter to Target OC for vetting, will blog a copy once it is passed as acceptable!
Hi Everyone
I think awareness of OC is virtually zilch- even among the professionals.
I had a letter yesterday that absolutely took the biscuit- it was from the original gynae Macmillan nurse that I was allocated saying that the six month check up phone call was being dropped- patients can now self refer. My problem with this was that in 22months, I had only had one phone call anyway!!!LOL!
For all this particular nurse knew I may have moved or worse, and it brought back all the bad feelings I had about my original treatment and later diagnosis.
Sorry to use this post to have a little moan.
Love
Anne x
Hi Anne,
I agree with you...I think they are trying to cut back...my oncologist said he would cut back seeing me to every six months (instead of three) so I could self diagnose after nine months in remission I said "you don't do a blood test...you don't do a scan and now you don't want to do an examination either" what is there left?.... to which he replied "examinations hasn't been proven that it prolongs life" huh! and I know what you mean even Macmillan nurses are not what they used to be..I never saw mine either...love and best wishes x G x
Hi Gwyn
Must say this particular one was really useless- she did however, when I pushed, find out about the inhibin test for me- the tumour I had did not give a raised CA, but I have not been offered this special test yet. Think probably if I pushed I could get it but as the CTs were clear, it probably is inappropriate at the moment.
When my case was transferred to Brighton I did find the Macmillan nurses there were much better but they were attached to the gynae oncolgy specific unit. The first was merely attached to general gynae.
The specialist I saw( who was great) did voice an opinion on frequency of check ups saying the more frequent they were the more anxious patients got, so maybe this is what your oncologist meant.
Thanks for listening to the moan.
Love
Anne
Yes...I do understand that some people do get anxious...about going to the hospital... but I don't do anxious.. LOL I would rather be on their Radar than not... especially as everytime I see my oncologist he reminds me my cancer is progressive...and isn't going to go away...I am not one to visit the GP either...I feel it strange that I was monitored every three months for eighteen months then every four months for twelve months... after that a recurrence... and only nine months in remission... he wants to cut down the monitoring I asked him if I was now in a better position.. than I was then... he said no..I have already told you it is progressive and you won't get better...what's with the monitoring problem then? ...I had a recurrence for over twelve months without him acknowledging it... if I was an anxious person I wouldn't have waited that long..but it was my GP that started the ball rolling even without me going to see her (my husband went for himself and she enquired after me so he told her) so no one will convince me that they are not cutting back...I also live in a place where there is no support... not even the Macmillen nurses the first time around understood O.C. there definitely not enough education on it ...x G x
Do you think it is just for OC or generally?I'm going on Wednesday and hope to meet Annie and Babs, so perhaps we will find out if treatment and follow ups are in the findings and how patchy it is in some areas.
Which part of th country are you in? I'm on the South Coast, and interestingly enough despite being a densely popuated area, not one MP from the region seems to be attending so far.
Hope wherever you are youare not getting rained on- it's stopped here for a bit but the wind is beginning to pick up and we are expecting 70 mph gusts! Fun, eh?!
Love
Anne x
I dont know yet if I have oc but 55 and a bleed 20 months into the menopause which sent me to the doctor pretty quickly.
Doctor didnt mention ovaries but did give me a biopsy which was inconclusive. A scan showed ovarian cysts one of which led to her getting me the ca125 blood test. Four more days before I get the result.
Would have been a nicer experience if she had found time to ask if i had any questions. Finding this page and reading other peoples experiences really helps.
I would definately talk to anyone about oc if it would help get them checked out quickly.
Hi .....welcome to our club that no one wants to join...I do hope that your results will not be OC... if it's any consolation I didn't have a bleed ..but I know everyone is different and the wait to find out is really scary...but you have come to the right place for support...and as you might have already noticed it is not all doom and gloom but we try to help and to provide a bit of cheer as well ...who else but us understands?
Sending you my best wishes and love x G x
Thanks for your kind wishes. This site has already helped me to have a more positive outlook. Whatever the results I will be campaigning for better awareness and screening.
Terri xx
Hello. Results came back with a ca 125 of 20. I got the figure from the receptionist when I rang. I asked her what that meant but she said I must wait for the doctor to ring me. It was another 4 hours before I was told that this was a normal result.
I am of course very pleased but as the thread is about lack of information I decided to post this. Also as the doctor said I may like to pop in again in about a weeks time I don't yet know what is to happen about the complex cyst or if the biopsy which didn't yield enough tissue needs to be repeated.
Best wishes to all and any advice on raising awareness would be greatly appreciated.. xx
Hi Teriandjed,
Just to say how pleased I am with your good news and wish you the very best for Christmas and the New Year thank you for your update love x G x
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