BRCA NEGATIVE - DECISION RE OVARY REMOVAL

[songbird68]

I'm having an ooph so I can switch to an AI after 2 or so years on tamoxifen.

Good luck with your decision :)x

[maggie2609]

Hi Lulu
Thanks for the information. My family did fit the criteria for testing and I have been tested.
Thanks again for your help.
Best wishes

Maggie

[Lulu34]

Maggie
in terms of aving your ovaries out there are prob two different groups of brca neg women... Those with no ovarian cancer in the family or like you they do have ovarian cancer in the family.... With the first group its very unlikely they would have much benefit from having their ovaries out.... But where ovarian cancer exists having them out despite a neg test is prob more likely to infer a benefit.

there will be families like your who do not fit the criteria for testing but who may choose to have their ovaries removed despite having no evidence either way that they carry a gene or not.... One of my very close friends had her ovaries out for this reason.

some consutants do oophorectomy to help reduce recurrence of bc or for pre menopausal women o they can change their meds from tamox to an AI which is only given if post meno.... three of my close friends hav had this done.

lulu xx

[maggie2609]

Hi Lulu
Thanks very much for the info. It's certainly a fairly complex subject. I don't understand about the Barts either.
It would be interesting for me to know what proportion of ladies who tested BRCA negative decide to have their ovaries removed, but I don't know the best way of finding this out.
Have a good weekend
Maggie

[Lulu34]

Just been reading more about Bart it's actually large rearrangements it detects not small ones so dunno if because 3/4 of my gene is missing that's large even though its only one letter that is wrong. Or if it was just missed in 2006. Sorry I have probably confused you even more now.

[Lulu34]

Here is a news article about the second test. As you can see it mentions the 12% which were previously not picked up.
http://www.ucsfhealth.org/newsletters/primary_care_connections/june_2008/cancer_genes/index.html

[Lulu34]

Maggie ou think the wording on that space isn't greatTGIF you read on you will see they actually aren't missed they are just guessing this is the case based on the fact they are dicussing a test which doesn't test the full gene. However as far as I'm aware here in the UK we do a full test and have done since 2008/9. I was one of the 12% who had a negative test when I was first tested back in 2006 as we didn't have the technology to test for all gene changes. They looked for detentions and insertions in the old test and long sequence changes but not for short changes like I have where only 1 letter in my DNA has been replaced by another which basically stops the rest of the gene from existing so it stops suddenly and means it can't so its job.

Please do try to be reassured but of your family were tested over 4 years ago or tested outside of the UK it might be worthwhile stalking your team when they implemented the more rigorous testing.... Think it is called BART test.

good luck with your information gathering.

[maggie2609]

Hi Lulu
Thanks for the information. I do fall within one of these groups and for that reason was offered genetic testing.
I noticed while looking at the website
http://www.negativebrcatest.com
they say that 12% of people who are from high-risk families have a BRCA1 or 2 mutation that is missed by this test, which is worrying.
Anyway, I will just have to gather as much info as I can and weigh up the pros and cons. As you say, at 60 ovaries have stopped producing most oestrogen, but there seems to be a difference of opinion among the medical profession as to whether this prevents some of the side effects.
Best wishes
Maggie

[Lulu34]

Hi maggie

im brca2 positive and had a full hyst and ovaries out 2 years ago... The op was fine but i did get a delayed infection and eneded up in hosp 5 months later seriously ill with peritonitis but this was a very rare side effect.

however i work with ladies who have familial bc, some of whom have tested negative for mutation. only around 20% of those from high risk families test positive for a brca mutation the other 80% test negative so this is the most common outcome from genetic testing. only 5% of all BC are genetic and around 15% have a family history so this is where you are likely to lie.

Now whether you feel you want to have your ovaries out is a very personal decision.... Some people who do actually carry mutations will still chose to keep them so nobody can really tell you what to do.... But even if you take out the gene factor (seeing as it doesnt relate to you anyway) and look at the ovarian risk alone then there are criteria of how high risk you are...... This is the criteria from the SIGN guidelines (Scittish equivalent of NICE).

2.2.1 DEFINING HIGH RISK GROUPS USING FAMILY HISTORY
Family history can be used to define women who are at increased risk of ovarian cancer.⁹ Individuals at high risk are those with a first degree relative (mother, father, sister, brother, daughter or son) affected by cancer within a family that meets one of the following criteria:

• two or more individuals with ovarian cancer, who are first degree relatives of each other
• one individual with ovarian cancer at any age, and one with breast cancer diagnosed under age 50 years, who are first degree relatives of each other*
• one relative with ovarian cancer at any age, and two with breast cancer diagnosed under 60 years, who are connected by first degree relationships*
• known carrier of relevant cancer gene mutations (eg BRCA 1 or 2)
• untested first degree relative of a predisposing gene carrier
• three or more family members with colon cancer, or two with colon cancer and one with stomach, ovarian, endometrial, urinary tract or small bowel cancer in two generations. One of these cancers must be diagnosed under age 50 years
• an individual with both breast and ovarian cancer

* In these categories a second degree relative may be counted if the transmission is via the paternal line (eg a sister and a paternal aunt or a sister and two paternal aunts).

So maybe you can decide if you would be at an increased risk of ovarian ca....however that said by 61 you no longer need your ovaries and they have pretty much stopped producing oestrogen so having them whipped out now shouldnt affect you too much. so Maggie i hope you can find a solution you can live with.

And rattles thanks for posting the link to the brcanegative site.... hadnt come across that before looks very useful.

Lulu xxx

[maggie2609]

Hi Rattles
Thanks so much for your reply and for letting me know about the book and the website. I really appreciate it and have ordered the book from Amazon.
I'm very pleased that I put the post on this website; the response has made me feel that I am not alone in this and have others to talk to who have been in similar positions. It's like a support network.
Thanks very much to you and everyone who has replied so far.
Best wishes,
Maggie

[Rattles]

hello maggie,
i have a brca1 mutation so i know that you are not really wanting my views (and no offence taken!) but I thought I would share this book with you, and a reference :

confronting hereditary breast and ovarian cancer, sue freidman, rebecca sutphen and kathy steligo.
its american and goes through the whole process, and is aimed at women with a without brca mutations but i found it helpful.
it also mentions this website:
www.negativebrcatest.com which is said to help you think about options - on the basis that a negative test result does not necessarily mean no risk.
rattles

[BrainyBlonde]

Hi Jenny - I'm BRACA2 positive so really in the wrong thread! Jan x

[maggie2609]

Hi Jan
Thanks for your reply. Do you mind me asking if you were BRCA positive or negative?
Best wishes
Jenny

[maggie2609]

Thanks very much Di.

best wishes

Maggie

[BrainyBlonde]

Hi - got home yesterday from my oopherectomy on Tuesday and, as Di said, it was a walk in the park compared to the other stuff. I felt fine in the recovery room and only have a little discomfort and tenderness around my tummy. Really glad to get it over with though. My tummy looks fine too with only tiny stitch marks in 3 places other than the tummy button.

Jan
x

[dib]

Hi,
I had ovaries removed because I did have brca 1 but just wanted to let you know the op was keyhole so only tiny scar and I was only kept in overnight because of low blood pressure otherwise I would have gone home same day.I was ok to drive straight away,only had to be careful not to lift anything to heavy for a couple of wks.It was a very easy op and recovery,hope the same goes for you too,
Di.x

[maggie2609]

Hi

I'd also be interested to hear from anyone who decided to have a prophylactic oophorectomy, as to how they found the operation and their recovery, in particularly anyone post-menopausal.

Best wishes

Maggie

[June_BCC]

hello Maggie

You can put reply on this thread if you wish or you can start a new thread if you want to talk about something different.

Best wishes

June, moderator

[maggie2609]

Hi Lucy

I'd like to make another slightly different post about this topic. Do I do it as a new post, or a Comment?

Regards

Maggie

[Lucy_BCC]

Hi Maggie

Your post will stay indefinitely, we don't remove any posts from the forums

best wishes

Lucy BCC

[maggie2609]

Hi Janet
Thanks. I have phoned before and find the service very useful.
Do you know how long my post stays open for (how long people can view it for?) It would be helpful to know so that I know how long to continue logging in for to see if I have any answers.
best wishes
Maggie

[maggie2609]

Hi Shirley
Your letter was very helpful to me; thank you for taking the time to reply. Following my surgery, I had three weeks radiotherapy and, like you, and also taking tamoxifen.
You didn't mention having genetic testing, so I'm assuming that you didn't. It's good that you found the operation straightforward and are feeling well apart from the hot flushes. Have you had them since the surgery, or do you think they are due to the tamoxifen?
It was also interesting to see that you discussed your decision with your oncologist. I do not see my oncologist as routine anymore; I am seen by the surgical team, but I may ask for an appointment to discuss it with him. I am keeping an open mind about having the surgery at the moment.
Best wishes
Maggie

[Guest user]

Hi
Hi am 40 years old and got diagnosed with BC stage 2 just before my 40th birthday. (March 2012) I have one cousin who had ovarian cancer at 40 and i was ciagnosed with the hormonal type of cancer. Following my lumpectomy and on the advise of my onc, I had my ovaries switched off (Zoladex implant monthly which put me straight into an induced menopause). I also had 4 weeks of radiotherapy and I am currently taking Tamoxifen.
After a discussion with my onc i had my ovaries and Fallopian tubes removed nearly 2 weeks ago - this was as a precautionary measure so hopefully once the histology reports are back, I can return to some sort of normality!!
The surgery itself was keyhole and very straightforward and recovery has been good (3 small incisions across my stomach). However I continue to have hot flushes and sleepless nights! My thinking process was I didn't want to live with the fear that I may be more at risk of ovarian cancer in the future.

good luck with your decision I am sure you will make the right one for you!
Shirley

[Janet_BCC]

Hi Maggie

While you are waiting for other forum members to respond you might also find it helpful to talk things over with someone on our Helpline. They are open from 9-5 on weekdays and 10-2 on Saturdays. The number is 0808 800 6000

Very best wishes

Janet

BCC Moderator

[maggie2609]

I would be interested to hear from anyone who has been found BRCA negative and had to make a decision about whether to have their ovaries removed. I am just 60, and was diagnosed with breast cancer last year, aged 58. Because I had a family history of breast cancers and my mother died from ovarian cancer, I have been assessed as having a risk of ovarian cancer of 6%.
I find the decision really difficult because on the one hand there is no effective screening for detecting ovarian cancer at an early stage. Although the risk of 6% sounds small, approximately 5% of breast cancers are due to a family history, and I was one of these. What concerns me is the risks, although very small, from prophylactic oophorectomy of damage to internal organs such as the bowel or bladder and other risks . I also don't feel ready to have more surgery yet (my breast cancer surgery was 15 months ago).
I'd be really interested to hear from anyone who wanted to share their experiences of having made this decision.

Maggie