Would it not make sense to offer all women beyond child bearing age the option of an hysterectomy. It should prevent the occurrence of OC in many instances. We know some women who carry the faulty gene for breast cancer are offered surgery to prevent their form of cancer so why not do the same for OC but offer it to all women automatically.
Prevention better than cure.: Would it not make... - My Ovacome
Prevention better than cure.
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41 Replies
•
Dear Paul - or is it Sandra posting?
It's something I've often considered. Apparently Ovarian Cancer is thought to start in the fallopian tubes so it isn't as if we'd even need major surgery. Could get the tubes out with keyhole as day surgery surely.
Sadly the ideals of medicine within the NHS are not achievable. It's a matter of, 'Is it cheaper to let us get Ovarian Cancer and pay for the very expensive chemotherapy, or cheaper to do something about preventing it'. If there is an estimated 32M females in the UK and we have an ageing population so you might consider that 16M women could be offered surgery to remove high risk parts.
Only 7,000 of those 16M get this cancer so it's cheaper to let us get it and spend a fortune on chemotherapy. You're right though. Something needs to be discovered that will help screen for this cancer. 7,000 lives potentially lost to Ovarian Cancer are 7,000 too many.
Please take a look at the Ovarian Cancer Research website. There's a lot of really good going on and I'm sure we're near a breakthrough.
love Annie xxx
Hi,
You would think that this problem would be solved, BUT (and it is a but) when people have an hysterectomy it doesn't necessarily mean that they won't get ovarian cancer... ovarian cancer isn't dependent on having ovaries or a womb for that matter, (contrary to what people think) having an hysterectomy cuts down the chances of having OC (it doesn't get rid of the problem) likewise being on the pill for a period of ten years cuts down the chances of OC by 50% so there are things that cuts down the risk but doesn't entirely stop people getting OC.
Neither does ovarian cancer always start in the Fallopian tubes, as my histology report stated that my ovarian cancer started in the ovaries, if I had my ovaries removed or even had a full hysterectomy before I had got OC I might have still had OC but somewhere else i.e. the peritoneum, say for instance I had cancer in the liver it wouldn't necessarily be liver cancer, but ovarian cancer in the liver, each cancer has a different footprint (pattern) and is recognisable by that footprint as the primary cancer.
I personally don't think that success rate has anything to do with the inability of the NHS...(granted there are no answers) if others had the answers to this, even elsewhere in the world we'd soon hear about it, there are many claims out there of cures etc but they are myths as are the conspiracy theories about our medical profession, I can't give enough praise to the NHS and would rather stick to proven methods than unproven ones.
Best wishes love x G x
TinaWright• in reply to
Hi Gwen,
Sorry for butting in here but I think you may have your wires totally crossed on this one. What you are saying is very true regarding a re-occurance of Ovarian cancers. Many people find it difficult to undertstand amd wonder "how on earth can we possibly get ovary cancer again, once we have had our ovary`s removed?".
Well, it only takes one tiny cell left behind after the surgery and chemo, that one tiny cell can begin to mutate and a secondry OV Cancer may in deed occur in various places of abdoman region, including the liver which is the organ you used as an example here.
However, I think the origional query here is - why can`t all women have an option after child bearing years to have a hysterectomy if they so wish to, this would indeed avoid ovarion cancer altogether.
Those of us who have tested positive for the brca one or two gene defect will automatically be offered a full hysterectomy as a prevention of OV cancer, as soon as we have finished having a family. On young healthy organs this proceadure can sometimes be offered vaginally or by key hole. The ovaries and the tubes + uterus and cervex are the best preventative options.
Both of my daughters tested positive and they are already booked for a hysterectomy as soon as they have finished having their family, they could have it done tomorrow if they chose to do so, just as those ladies with heriditary breast cancer in their families.
If anyone is worried due to either breast or ovarian cancer in their family then they should seek genetical testing and insist upon it. I only had my mother before me who had ovarian cancer and we have NO breast cancer to date in our family on maternal or paternal sides however, I tested positive as both of my two daughters have. We are all offered the option of breast surgary. As for me I have to be 5 years cancer free before they will consider me as a good candiate but both daughters can have the operation tomorrow if they so choose to do so.
Surgary is the only way to avoid OV cancer but it must be carried out BEFORE a cancer has occured to prevent it.
I hope this has solved the mix up here.
Best of luck to all considerring it - its the only way to go, I so wish someone had listened to me decades ago when I first raised my concerns. In fact I never stopped raising my concerns. Right up to minutes before the first scan that found my tumour, I was being turned down flat for a preventative hysterectomy. Had they listeend and referred me to genetics then they would have confirmed the faulty gene and my cancer would have been, not could have been, would have been avoided.
All I can do now is raise awareness and live in the hope that my story may save a few lives in the future.
best of luck with a hug from Tina xxxxx
• in reply toTinaWright
Hi Tina,
No I haven't got my wires crossed, the information about this is on the Mayo Cinic website. mayoclinic.com/health/ovari...
I realise this is upsetting to hear, and I agree that it does cut down the risk of getting OC considerably, but is still not a definite answer to the problem. the link above will explain it clearly.
I am sorry if I have upset you but I can only say what I have researched and read.
Love and best wishes x G x
• in reply to
Oh I forgot to mention, I am not talking about a recurrence though.
I am talking about a primary cancer that can turn up as peritoneal after the ovaries etc has been removed....which is still classed as ovarian cancer and is treated the same way.
TinaWright• in reply to
Well, this is not what has been explained to me! It is very true that mastectomy can only take down the risk to about 2% but 2% is better than 80%. As far as OV cancer goes then the risk is reduced so much it would be veeeery bad luck if you still got it.
You haven`t up set me not at all, I`m as strong as a rock, it would take more than that to up set me but yes I agree it was a shock to read because like I say this is not how it has been explained to me by the genetic team who are very clued up to date.The same thing was explained at seperate times by different genologists, this was less than a year ago for my daughters.
You can not always believe what you read on websites, are we not told time and time again that sometimes this type of information is out of date or incorrect but then from my recent experience we can`t always take what we are told as gosspal all very confussing.
However, I don`t belive that this type of invasive surgery would be offered with high risk patients if they didn`t think it was worth going through with it. I am also at high risk of colon cancer so after all that it could still get me in the end. I have always known that cancer would be the end of me but if we have options then we have to go with them, even if it is to only prolong life for as many years God allows.
I will certainly look up the mayoclinic and query any finding with the genetic team. OMG, thay are going to be sick to death of me, LOL!
But none of us need to be lied too, I won`ty stand for it by anyone.
Please don`t take the later personally - I don`t mean you my lovely xxxxxxxxxx
• in reply toTinaWright
Hi Tina,
I also tried to post a link about a lady on the inspire website
(for ovarian cancer) she says she got OC two years after having an hysterectomy, (not a recurrence) but when I wrote it and then clicked on to the link it came up with an error (so I deleted it) but you can look it up...there are other places that it states this too, and they are not dodgy websites the mayo clinic is renowned... but Tina the risk is small, so if it was myself I would still get the hysterectomy, as anything that cuts down the chances of OC is alright by me. It is only right that you get the full information on this.
Best wishes love x G x
• in reply to
More links
cancer.org/cancer/ovarian/d...
inspire.com/groups/ovarian-...
• in reply to
Sorry the top link don't work... but the bottom one do..thought it might help xx
TinaWright• in reply to
Hi Gwen, Yes indeed it does and also looking into this further, it is recommended to have preventative surgery BEFORE the onset or start of the menopause. Maybe after that age group the risk is still likely??????????????
When we consider the risk by % surgery sure does cut down that risk remarkably so therefore it still has to be our best option.
However, If my genetic testing had been a negative result then further testing would have been carried out for other genetic floors. If still nothing was found my risk would then be considered as no more than the general population and therefore anual mamogramms or surgery for both breast and OV cancer would not be offered.
I would certainly NOT recommend such proceadures if the life time risk was the same as the general population because like Lily Anne said we are most propbably more likely to be killed in a road traffic accident. The problem is with this topic - none of us can be in complete control of our death sentence however, if we were told not to fly on that airoplane because it would be carrying a bomb, do you think any of us would board that flight?
The answer is NO of course we wouldn`t but that is the difference between being fore warned and not being which is a very different ball game I think. We just wouldn`t gamble with our life like that.
I just wish everyone who wanted to be tested should be tested.
Thanks for chatting Gwen it`s never a bad thing to have a discussion like this and we all do have different opinions. This is why, we are offered genetic counselling and this is the reason why we are never adviced on what we should do, at the end of the day we have an option and it hasto be an individual decision because we are all individuals.
I do know of many young women who opt for surgery and I also know of many who opt for the screening and take the rest to chance. Screening of course does not prevent the disease but it gives it a better chance to be caught early. However, screening is only offered to the breasts not the endometrium, simply because this type of screening cannot always offer a clear picture also it can actually increase the risk of the disease.
I`d also like to point out that triple cancer cell types are commonly found in those who have inherrited the faulty gene.
Love from Tina xxx
• in reply toTinaWright
Hi Tina,
I read this as well the earlier it is done the better the outcome, but of course there are not many young women would want to do this, but is a life saver and to be forewarned is to be forearmed.
I am having another go at the link. Here goes
cancer.org/cancer/ovarianca...
I hope it works this time teehee love x G x
• in reply to
Yes it 's worked!! Yippy!!!
By the way if mine was genetic (and I don't know for sure) I would want my daughter and my grandaughter to do anything they can to prevent OC I did ask this when I was diagnosed but the oncologist said it was unlikely to be familial ....I have two older sisters that haven't had OC and my mother didn't either and as far as I know I am the first, but it has to start somewhere and my dad died of bowel cancer so I can't help but think of this..love x G x
TinaWright• in reply to
Hi Gwen,
You are right, this does have to start somewhere, did anyone tell you that you can inherrit the gene from your father without any family history of the disease.
No one would listen to me and eventually I gave up being one hell of a pain in the a--- ! Then gentical research came into force and everything changed BUT ONLY once they had found I already had the cancer was I offered genetical testing.
MY argument I hope sincerly that other women can use my example is that ONLY my mother had OV Cancer, but I and both of my daughters inherrited the gene mutation from her.
When research looks for a fulty gene its like searching for a spelling mistake in a whole libary of books. The searcher does not know which book, which chapter, page or word that has the error. So this takes time, several months and that first test is quite expensive. But not nessesarily out of the reach of a private charge.
Should your results be negative then you won`t pass the gene mutation down to your daughters, however, if it is positive then each daughter has a 50% risk of inherriting the gene.
Counselling is offered for as long as needed because one sister could have it and one not and this can cause lots of family problems. There is also the issue that one daughter may want to know and the other not. in such cases the testing needs to be complety private and confidentual, to avoid anxiety and stress.
Each test taken after the initial one only costs £30 because by this time the reserachers know exactly where to look for the gene mutation.
I think the originial test cost the NHS about £300 but I may have this figure quite wrong, its worth checking it out and privately if you are still refussed.
All I can say is, had my mother had it, then me, my cancer risk may have been owered enough to avoid it.
Of course another thing we do need to remember is that not all cancers are caused by a faulty inherrited gene, Hormone change causes many OV cancers and B cancers. In my case it was casued by the inherrited gene mutation which was quite intesting to know.
Best of luck Gwen, sometimes we just have to fight for what we believe in.
Love always from Tina xxxx
• in reply toTinaWright
Ah yes... Tina my oncologist said that having a father die of bowel cancer could be significant, and I did know that this could be a worry (my dad was 54 when he died) I also think that my sisters not having OC don't count as I know one of them has had a full hysterectomy when she was a lot younger, so already had her risk reduced, and my other sister was sterilised (I think her tubes tied) so this too cuts down the risk... We are all so different and when they ask questions about your family they don't always get the true picture... firstly because we are in shock and it is only later that we think of these things.... life is tough isn't it?
Love x G x
TinaWright• in reply to
Yes, this is what my daughters are up against they are 28 and 32 but they both only have one child each and would very much like to extend their family.
The thing is here, women in general are waiting longer before they start a family and then in a situation like this they haven`t exactly got time on their side.
It would have been different for me, I had finished having babies by the age of 26, although to have had surgery so young would have been a little bit too final to have my healthy organs removed.
Then there are the symptoms of surgical menopause and the long term side effects from that.
Its a tough call but one that I would have gone with had I been offered the chance.
As for mastectomy - then this depends on ones individual frame of mind and ones way of looking at the situation. When you think about the millions of young women who have cosmetic surgery then I`m sure they would never hesitate however, I`d never do it for vanity but that is just me.
I`ll check out this website as well - another topic I`d like to discuss with everyone sometime, which is an added subject leading from this one and this is about tamoxifen and similar other eostrogen supressors, that was one is an even harder decision after OV cancer - HELP!!!!!
I`ll leave that one for another day, LOL
XXXXXXXXXXXXXXXXXXX Bless you all
• in reply toTinaWright
Hahaha! yes maybe that would be best... one topic at a time but what a debate heh? I wasn't saying I don't agree with having preventative surgery (see my comment below) just trying to give a balanced view the full picture in our limited space teehee love x G x
I had no cancer in my fallopian tubes though. I don't think life is like that, you can't account for every eventuality, otherwise you would just go mad. I was resistant to surgery from the start. I didn't fall into any risk catagory but was very lucky to have very painful symptoms.
If I had never let my son out of the house would he still be here?
If my Mum hadn't taken a book off the bookshelf, slipped, banged her head, would she be here now?
The NCEPOD report is worth a read, and may answer some of your question, but voluntary female castration with the surgical menopause and everything that goes with it? No thanks.
LA
Hi Lily Anne,
The average population has a breast cancer risk up to 12% and about 4% for OV cancer. If you have the inherrited brca gene defect then your risk would shoot up to a 50% risk of OV cancer in a life time, ok that still means you have a 50% chance of NEVER getting the disease. But for breast cancer your risk is up to 80% in a life time and that is HIGH!
Maybe if you had this genetic disorder then you would think quite differently. Women should be able to make their own choices and this is what this posting is all about "freedom of choice".
It`s our choice if we chose to mutilateour femininity as you so crudely put it with your description of female castration, which it is not at all. If you had a life and death choice which choice would you take? I wonder if you have had such surgery due to OV cancer and if you have then you will understand that you made that choice of castration the day you gave your consent for surgery. You did this because . . . . . because you didn`t want to die just yet.
Ok so we will all die one day this cannot be avoided by anyone however, we do our damdest to stay alive for as long as possible.
I`m not sure about the rest of our friends on here but I`m sure like me none of them feel as though they have had female castration. I find this remark offensive to be honest. None of us are any the less of a woman after our life saving surgery, whether this has been a hysterectomy or mastectomy.
Sorry for the rant but I had to butt in here, because this is indeed a serious and sensitive subject for me and many others ladies who may be reading this.
Fight for YOUR choice everytime, it could mean the difference to seeing your children or grandchildren grow up, be able to attend your daughters wedding, sadly my mother was able to do none of those things. She was taken at 47!!!!!!
Enough said I think
Sorry Tina, but I'm with Lily-Anne on this one. And yes, Lily-Anne has had the surgery - she's told us her story before now. I do feel as though I have been castrated and it has been very hard for me to come to terms with it. It actually helps me to know that someone else feels the same way. I know I needed the operation, and I'm grateful - well, most days - that it has allowed me to live, but to choose it voluntarily - never. I do realise that if I knew before I was diagnosed that I were at very high risk I might have felt differently, but as far as I knew I was not at high risk - I was just told that I almost certainly had cancer. I'm not against women who are at high risk being offered the opportunity to have a hysterectomy as a preventative measure, as I do realise that for them it might be a lifesaver, but I wouldn't blame them for refusing to have the op until they had to either.
I actually agree and have said as such - it is a very individual choice and I do know of many who won`t even consider the genetical testing for whatever reason, which is personal to them.
If one would not consider such surgery measures then they may find not knowing a better option otherwise it may tear them apart. I am not trying to persuade anyone either way, just telling it the way this has affected my own personal choices and beliefs.
But the subject here is really all about the freedom of choice and if women want surgery to lower their risks then should they? or shouldn`t they be given that option? The descussion is not about who thinks its right or wrong to have such invasive major surgeries.I don`t believe for one minute there is a right or wrong choice, the choices we make are only right for the person making those choices, it really has nothing to do with anyone else and we should all respect that.
What I have put across is my reasons why I do think these options should be offered as a freedom of choice. I am not stating that surgery is the correct way forward - it is for me because that is my choice that I have made. I would not persuade you or anyone else that my way is the right way to go.
Its also all about frame of mind and the way you look at it.
I hope that helps you understand my postings a little more clearly
Sorry, Tina - I knew we agreed on the subject of choice. What worries me is that you took offence at Lily-Anne viewing the operation as castration and said that no one else here felt that way, when I very much did - and do - feel that way. I do realise that not everyone feels that way, but you just make matters worse for us by labelling it as offensive when we are simply being honest about the way we feel, and believe me we feel bad enough already.
All I can say is, I was offered a hysterectomy at about 40, I still thought I may be able to have children, I didn't and I got OC at 52 years old. I don't think 'the system' would offer hysterectomy for all women over a certain age. Economics would prevail, I think! I know I'm cynical, but after a lifetime of politics-watching ......... I know everyone has their own story to tell, in their own way, we've all been severely affected by what has happened to us. However, the NHS still has to cater for the greater good and balance it's risks and budgets. I'm just happy if we get an OK outcome 
Love Wendy xx
Yes I agree totally Wendy xxxxx
a terrible idea which would cause more and worse problems than it was mooted to deal with
Well, you are entitled to your opinion, as so is everyone else.
We all should have a CHOICE whether this is to be tested for an inherrited gene or surgery once we know what our risks are.
I am not saying that anyone person should be forced into such a proceadure just to cut down the costs of cancer treatments.
Personally I would much sooner deal with a preventative surgery than deal with cancer and chemo any day - for me personally that would take away a great deal of anxiety and stress, because then I would be able to move forward with living a longer life maybe! Quote I said maybe!!!!!
Here is another spanner in the works, my niece aged 42 lives in Spain. I dont know what her symptoms were but she was diagnosed with cysts on the ovaries and her treatment was to remove them through keyhole surgery. Her CA125 was elevated at the time. She travelled by train a journey of 7 hrs to have the operation. However as the surgeon removed the ovaries they burst and spilled into her body. Tests showed that the cysts were tumours and hence given the news she had stage 1 OC. They had no choice to put her on the Taxol/Carbo for 6 cycles. I understand she is in her 3mthly check up period, I don,t know her CA levels. One presumes had they removed the ovaries cleanly she would not need chemo at all. Rgds to everyone who are debating my original question. Nice to see a cross section of opinions.
• in reply to
Yes this is certainly something to concider, I wasn't saying though that it is not a good idea (I happen to think it is) but simply saying that although it cuts down the risk of OC it doesn't always stop people getting ovarian cancer (see my links above)
I can empathise with you about your niece, my niece died last year (and about the same age as your niece) my niece was a niece through marriage (so not a blood relative) I say this not to confuse the issue about genetics.
This discussion is hard enough as it is LOL... I expect you are wondering what you started...it is a can of worms isn't it? So my guess is there's the answer to your question albeit indirectly haha
Best wises x G x
Researchers do agree that removing both ovaries and fallopian tubes (salpingo-oophorectomy) protects women with BRCA1 or BRCA2 mutations against ovarian (and fallopian tube) cancer.
Sometimes a woman has this surgery to reduce her risk of ovarian cancer before cancer is even suspected. If the ovaries are removed to prevent ovarian cancer, the surgery is called "risk-reducing" or "prophylactic." Generally, salpingo-oophorectomy is recommended only for very high-risk patients after they have finished having children. This operation lowers ovarian cancer risk a great deal but does not entirely eliminate it. That’s because some women who have a high risk of ovarian cancer already have a cancer at the time of surgery. These cancers can be so small that they are only found when the ovaries and fallopian tubes are looked at under the microscope (after they are removed). Also, women with BRCA1 or BRCA2 gene mutations have an increased risk of primary peritoneal carcinoma (PPC). Although the risk is low, this cancer can still develop after the ovaries are removed.
The risk of fallopian tube cancer is also increased in women with mutations in BRCA1 or BRCA2. In fact, sometimes early fallopian tube cancers are found unexpectedly when the fallopian tubes are removed as a part of a risk-reducing surgery. That is why experts recommend that women at high risk of ovarian cancer who are having their ovaries removed should have their fallopian tubes completely removed as well (salpingo-oophorectomy).
Research has shown that premenopausal women who have BRCA gene mutations and have had their ovaries removed reduce their risk of breast cancer as well as their risk of ovarian cancer. The risk of ovarian cancer is reduced by 85% to 95%, and the risk of breast cancer cut by 50% to 60%.
This info was taken from the website that Gwen recommended - I hope that it is clearer for our readers to understand.
• in reply toTinaWright
Hi Tina,
I am so glad you have the energy to write it ...cheers... I feel exhausted, as it is I can't copy and paste a link so I do it longhand (this explains the mistakes LOL)
But lie I said (further up) just trying to give the full picture... not easy when you have limited space, limited IT skills and limited energy... haha love x G x
• in reply to
It wasn't lie it was meant to be "like I said" my iPad alters words before Ihave noticed argh! xx
TinaWright• in reply to
Don`t worry, I make the most terrible typo errors - you must have noticed? can`t do spell checks on here, can we? it sure is a nusiance.
It`s hard to spell and write what is in your head all the same time, my multi task skill flew out of the window yrs ago. XX
I really must go and play with my grandaughter now, chat laters xx
Is ovarian cancer still possible after a hysterectomy?
Types of hysterectomy surgery
Yes, you still have a risk of ovarian cancer or a type of cancer that acts just like it (primary peritoneal cancer) if you've had a hysterectomy.
Your risk depends on the type of hysterectomy you had:
Partial hysterectomy or total hysterectomy. A partial hysterectomy removes your uterus, and a total hysterectomy removes your uterus and your cervix. Both procedures leave your ovaries and fallopian tubes intact, so you can still develop ovarian cancer.
Total hysterectomy with salpingo-oophorectomy. This procedure removes your cervix and uterus as well as both ovaries and fallopian tubes. This makes ovarian cancer less likely to occur, but it does not remove all risk. You still have a small risk of what's called primary peritoneal cancer, which acts just like ovarian cancer and is treated similarly. Peritoneal cancer may result from ovarian cells that migrated to the peritoneal area during each menstrual cycle before your ovaries were removed. These cells can become cancerous later on. Alternatively, since the peritoneum and ovaries arise from the same tissues during embryonic development, it's possible that cancer could arise from the cells of the peritoneum.
An interesting piece of information which may help a decision whether to have preventative surgery or not - hope it helps someone
All the best from Tina xxxx
Information taken from mayoclinic.com/health/o...
• in reply toTinaWright
Interesting, the reason I raised my original question which prompted this heavy debate is that Sandra has had her OC since mid 2009 age 63. She was offered a full hysterectomy when she was 50 but declined it due to work commitments. Its been a nagging thought since 2009 what would the situation be now had she had the op having found new love in 2008 and getting married 2011. I think she feels guilty. Xx
• in reply to
Hi ,
I think we all feel guilt about something, we all have the "what ifs" myself?
I ignored symptoms that I obviously had for a long time prior to me going to the GP but retrospect is such a wonderful thing isn't it ? oh if we could only turn the clock back, but we are where we are now, and no point in beating ourselves up about it.
To be honest it might not have made much difference to Sandra's outcome, because fifty can still be a bit late for preventative surgery If you read the links it is more likely to be preventative to have an hysterectomy when people are younger and most don't want to have drastic surgery then. not many people give much thought to cancer then, it comes like a bolt to all of us.
Sandra can count her blessings in having a wonderful supportive husband like you, at a time when she most needs you. I have a wonderful caring husband too and I count my blessings everyday.
Best wishes x G x
• in reply to
I forgot to say interesting debate though... cheers
• in reply to
I would like to email a ovacome nurse but their support@ovacome.org.uk does not work, do you have the correct one, thanks
• in reply to
Hi,
Yes it's
r.payne@ovacome.org.uk
Tel number 0845 371 0554
• in reply to
Thanks
I found your comments quite insulting Tina. You refer to choice several times yet you shouted down my choice and opinion because it is different to your own. I have had two operations and chemo, but even with my journey, which is far from over, I still would not have chosen female castration by choice, my choice. Removal of the female reproductive organs is castration, you may not like the term but it is in fact a truth. When the district nurse visited me at home, she said she felt that way after her hysterectomy, she had been 29 and had an emergency hysterectomy during a cesarean, and her description helped me recognise how I felt, like something was missing, my choice to have more children. During the last few months I have met women through MacMillan who have had OC, and some having treatment, who feel lost, as if their femininity has been compromised.
The women on here have been amazing and held my hand through some very difficult times, unfortunately I find you a little aggresive, and I believe some viewing this board could have been quite upset by your comments and avoided posting because of it.
LA
LouiseOvacomeMy Ovacome Team
Hello everyone,
I preface this post by saying that it is not directed at any one person in particular!
This thread has been brought to our attention by some members who have found the tone of discussion upsetting.
I am not inclined to remove any posts or indeed the whole thread as, although there are several highly emotive postings from various people, I think this is a reflection of strong views and different reactions to different circumstances.
Could I ask that everyone please remember that the site is here for support and the sharing of information and resources. We are all entitled to our opinions, but must remember that our searing experiences inform those opinions, which in turn can make opinions...well strong.
As far as I am aware none of us here are geneticists, and quite a bit of that which has been posted is in fact incorrect, but to listen to two of the countries top geneticists, and raise these issues please do come to our members day. More details in the newsletter or on the Ovacome website.
Thank you
Louise
Hello, again Majorbem,
Ok, I am sorry I have taken so long getting back to you with real answers. This blog certainly did open a huge can of worms and obvioulsy we all have different experiences which effect our way of thinking enormously.
I have now spoken with my genetic counsellor to finally lay this query to rest.
When we have preventative surgery, to remove the ovaries and the fallopian tubes would offer us a 98% success of prevention.
However, there is a 2% (only) risk that one tiny part of the ovarian tissue is left behind and therefore it is possible that an ovarion cancer may still develop, but this risk is ONLY 2%.
Obviously if there are already cancer cells at the time of preventative surgery then an ovarian cancer can still erupt in the peritoneal. Again this is a combined risk of only 2%.
This type of surgery has to be so worth while however, Sandra must try to put this all behind her now and deal with her future. What is done is done and we cannot unfortuinatelly change that. At present I am in the same situation, because had I known about genetic testing and approached this either privatelly or insisted upon it on the NHS, then maybe, who knows maybe I could have kicked its arse in time. My only way forward now is to think seriously about reducing my risk of breast cancer from 80% to 4%.
I hope this answers your question finally, I am only sorry I had messaged you first before I myself was so confussed. My head is very clear now, I hope it is more so for you too.
Bless you Sandras husband, bless you
From Tina x
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Hi, I am new to My Ovacome. I have been searching for a support group for women with OC in my area,...
Why No National Screening Programme?
Ovarian Cancer is the FOURTH most common cancer in women. However It kills more woman each year...
NICE Guidance Released for treating recurrent Ovarian cancer - Consultation period
This post follows up on a post a few days ago by Louise at Ovacome to this forum. Up to the present...
Can’t believe it misdiagnosed again now looks as though I also have kidney cancer. 
CA125
BRCA +ve with OC. The options for breast cancer prevention.
Up and down
