The reasons not to have ooph done are, according to my onc - irreversible if you are premenopausal and damage to bones and other medical problems associated with surgical menopause.
Also it offers another treatment if you develop secondaries.
Tamoxifen and Arimidex work in completely different ways. Tamoxifen blocks the oestrogen receptors in cancer cells so that the cancer is not “fed” but the rest of your body is not starved of oestrogen either.
Armidex and other aromatase inhibitors stop the production of aromatase which is the other source of oestrogen in the body - they don’t actually block oestrogen receptors like Tamoxifen does. That is why it is essential you are 100% menopausal before taking AIs otherwise, if your ovaries are still secreting oestrogen, then obviously you are at higher risk of recurrence.
Hi Leigh I spoke to my nurse only yesterday about this as my sister died 13 months ago of ovarian/endemetrial cancer and as I am having a second op this fri to get a wider margin and have been told I will be having rads and tablets of some sort (not sure of the name but not tomoxifin)I confided to my nurse of my worries. I have read that if ovarian is in your close family you are at a higher risk also if you have BC and if you are on hormone thearapy. As I continued to search for more information it seemed to make sense to remove my ovaries but at the same time I do not want my surgeon to just say its my choice if I don’t want to take the tablet. I just need answers I am at risk of ovarian cancer if I take the tablets or BC if I don’t. If anyone else can come in on this I would love to hear from you. Good luck to everyone take care. Oh Leigh your little bichon is adorable as you can see my little boy is also a bichon named Tiggy. xx
Hello again there is a test you can have to tell if you have a faulty gene which makes you subceptable to BC and ovarian cancer the gene is BRCAZ for BC and BRCA25 ovarian. Both BC and OC can be due to the same faulty gene I read it doubles the risk of OC if you have BC when I spoke to my nurse about this she said the tests can only be carried out if you already have one or the other. I find it easier to speak to my nurse she will come in with me when I see my surgeon(like my advocate) to relay my worries and concerns I think this is great and feel much happier as I’m sure all you ladies know how easy it is to forget what to say when faced with your surgeon(we are more worried at the time about our results the rest just goes over my head until I get home so maybe this will be helpful to anyone else who feels like me(the nurses are great and so eager to help but you have to ask). take care Linda x
I had been led to believe that you had to have more than 2 family members to automatically be tested for the BRACA gene. The hospital that tested me for the gene (Manchester) requested that there are more than 2 family members with a related cancer. However I have read that some people had been tested with only 1 close family member.
I had to go for counselling first and fill in a detailed family tree before they would go ahead with the testing. Initially I didn’t qualify for testing, even though my Mum had BC at the same time as me (apparently they were different types, I was 40 and she was 70)and my sister had had BC at the age of 32 and a reoccurance at 36. It was only at a later appointment with my consultant that I happened to mention in passing that my Dad had died young of pancreatic cancer. I was then immediately referred for testing, as I then satisfied testing criteria.
I’m sure that different hospitals offer different services, but in my experience it was quite difficult at first to get testing. I hope that it is easy for you, if that is what you want.
The test itself is just a blood test.
Take care
Nicky (sorry I realise that I have completely gone off the initial subject in this thread!)
Thankyou Nicky the information is very useful I do not expect I would get the test on the national health then but as its only a blood test it probably would’nt cost much privately but first I would like to find out more about ovary removal thanks again.Linda.x
good thread to read thankyou
i will be asking my onc after i finish chemo
no one has mentioned the blasting of the ovaries with rads??
i read that 4 goes and they are done with?
anyone had this done
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A very interesting thread. I had my oophorectomy about 10 days ago - I was home the same day and, although I did have pain (well managed by standard painkillers) for the initial 3 or 4 days I’m now fine and going about my business as if nothing happened.
Now for the science bit. I am 42, had a 35mm grade 2 tumour with no spread, 8/8 ER and PR +. Had WLE and axillary clearance. Did 4 x 4 E-CMF, 15 rads + 4 boosts. I started taking tamoxifen but it didn’t suit me at all. I had terrible anxiety symptoms, stiff joints, hot flushes, intense fatigue…just felt awful. So it was recommended to me to have an oophorectomy so that I can move onto aromatase inhibitors. Zoladex not recommended for me because my blood pressure is very sensitive to hormonal factors. For me the prospect of removing the primary source of my cancer was a no-brainer. Also, having stopped taking the tamoxifen in preparation for my surgery and realised how much better I felt it wasn’t a tough decision.
I had a bone density scan prior to the surgery which showed my bone density to be well above that expected for someone my age. It will be regularly monitored now against that baseline and I’m assured that any change can be dealt with through medication.
So far I haven’t been plunged into menopause hell. Chemo put paid to periods last May so, although blood tests indicated things were still going on I suspect I’ve been going through oestrogen withdrawal for nearly a year. I’ve been having hot flashes etc through all that time. Since the ooph I’ll admit to a few mood swings and a bit of an emotional meltdown a couple of days ago (however, trust me, that has been nearly 15 months in the making and I feel a lot better for it!) but otherwise I feel fairly normal so far.
I know it’s early days for me, and I’ve yet to start taking arimidex (or whatever) but so far I’m doing fine.
Hi
To add my experience. I had a very similar situation to ‘bad fairy’, my onc did not want me to have an oompherectomy (sp?) after my primary dx because of the reasons stated about bone density loss. However as I now know this can be controlled with supplements etc. I have since gone on to develop bone mets which I’m sure started when I went back into being pre menopausal after finishing 2 years of Zoladex. I have since had chemo for my secondaris and a blood test after this showed I was peri menopausal so I had Zoladex (again) during chemo and for a couple of months after. I insisted this time on oompherectomy but due to blood pressure problems etc I had rads instead of an op. This was 3 - 5 times (can’t remember exactly) during 1 week of a very low intensity. Having said that because of the area that it hits I suffered with irritable bowel type symptoms for about 4 weeks after. Great for weight loss! After this I have no further SE’s and take Arimidex as my hormone treatment. I was told that the effect may take a month to stop my ovaries working completely so had Zoldaex until my onc was happy that they were no longer working. I think Zoladex and ovary removal also takes a while for the ral menopause symptoms to kick in so it could take more than 10 days (Gennie) for you to see how much you will be affected. I would also watch your blood pressure as mine has been affected both times with the sudden withdrawal of my hormones either by Zoladex or the final lot of rads.
Nicky
Looked up the Ladycare magnet as at 52 the hot flushes seem to be getting worse. (Dx 5 years ago, still taking tamoxifen and had 2 years zoladex which finished Jul 07) Think I may be truely menopausal now. Was interested to read that they don’t know how the magnet works but think that it boosts levels of oestrogen and progesterone. As I was highly er+ I won’t be investing.
Just to let you know I have a LadyCare Magnet, and have been on Tx for 12 months as I was ER+. I had mx, chemo and rads. I’m only a week into using it and you’re supposed to give it at least a month to see if it works. I asked my BCN if it was safe to use beforehand and she said yes. This is what she said…
“Although Tamoxifen still allows your body to produce oestrogen, it does disrupt the hormone balance in the body, potentially resulting in menopausal type symptoms. These symptoms may then be relieved by remedies such as medical herbs, homeopathy or magnets.”
I’m also having acupuncture, which is helping with the flushes.
Hi there ladies just to tell you I had a vaginal ultra sound yesterday this is because my lovely sister passed away only 14 months ago of ovarian cancer and as I have BC my GP thought it would be a good idea. The young lady radioligist was lovely she said my ovaries looked normal and the lining of my womb was lovely and thin what ever that means but she said I had a polyp! have to wait 10 days for results and to see my GP. As the radioligist did’nt know all the history she was quite casual about the polyp but maybe I will have to have it tested or removed as I read they can be cancerous has anyone else had this happen to them. thank you.
I had my ovaries removed after bc diag 5 years ago. My Auntie had dies of ovarian cancer the same year and as my tumour was 100% ER + I thought that it would be best for my situation. I was booked in as a day case, went down to theatre at 1 pm and was home by 8.30pm, I had 4 days off work and was back in the following week. For me the risks of having this op done where worth it.
I have a bone density scan every 2 years due to the lack of oestrogen now in my body, and the only little niggles that I have experienced is perhaps the dryness down below which causes some discomfort with the bladder and sex, but I do have replens cream to use, (but I would have had these problems in time due to a natural menaupause)
I’ve been reading/following this thread with interest as I go on Tuesday to discuss my ovaries being removed, looks like I’m having a full hysterectomy as well.
I’ve decided on surgery as I’ve had allergic reactions to loads of things - I feel the monthly injections are a time and possible allergy problem and understand the radiation can cause problems with bowel and bladder.
My Auntie died of Ovarian cancer, I also had endometriosis for years, took Danazol for over 18 months, have overian cysts and am 100% er +. With the increased risk that Tamox brings it looks like the next step is a no brainer but still wonder… It’s so useful reading everyone’s comments, thanks.
I’m also reading this thread with interest as I still have niggles about my ovaries and the risk of developing ovarian cancer/secondaries plus how oestrogen is still being produced (I’m 45, pre-men, on Tamoxifen).
I’ve just done the online OPERA questionnaire, which is on the MacMillan site, and the result is that I might have an increased risk of carrying the BRCA gene. My mother had BC at 68, my maternal grandmother at 79 and I was dx at 43. My mother had a full hystorectomy at 32 due to excessive bleeding after my brother was born, so she doesn’t have any ovaries, and neither of us have any female relatives. Therefore my worry is that the screening and questionnaires don’t take account of the fact that I don’t have any other female relatives so I don’t know how high the family incidence might be as there’s an insufficient samlpe size.
On top of this I asked my Onc last year what he thought about ovarian ablation (either zoladex, radio or ooph). He said basically that there’s not been enough research done to prove either way whether there’s any real beenfit in this in terms of protecting women against secondaries.
However, having just read on here that some have gone on to develop secondaries after not having ovarian ablation I think I now need to discuss this further with him.
Love to all, Bella xx
P.S. Ladycare magnet is now 6 weeks in - flushes very much reduced in frequency and definitely reduced in magnitude. Have had a few over the last few days but that could be the recent mild weather. Skin has improved quite a bit, less dry and itchy, so overall it’s going well and I don’t regret spending £20 on it!
It’s a bit late to tell this but you might be interested. I went for an ovarian screening appointment last Weds and I’m now on the UK FOCSS trial - UK Familial Ovarian Cancer Screening Study. I was lucky - Weds was the last day they were recruiting onto it.
The study is being run from 32 centres in the UK and a number of centres in the USA and they intend to put the results together. It is to find out ‘which are the best screening tests for women at high risk of ovarian cancer and how often women should be screened’. It involves a scan and 4 blood tests for CA125 each year. But that will end when the study ends at the end of 2011.
I felt very fortunate to be recruited - I’m happy that I’m contributing to a study (ironically, my Mum took part in two studies for ovarian cancer years ago - and then she got it 3 years ago!). Also I can defer a decision about an oopherectomy until I’m ready, but the scans and blood tests will hopefully pick up anything to worry about in the meantime. I think I’ll end up having my ovaries removed, but all in good time!
Hope everyone’s well and enjoyed the Easter weekend