Most of you probably know me by now and know that I had stage 2 breast cancer in 2005-2006, for which I'm NED (no evidence of disease). I have seen my med onc for b/c every 3 months and was recently scheduled for every six months with my next appt in January. Although there's always the possibility of recurrence, it went to the back burner when I was diagnosed with tonsil cancer. I finished RT in April and have seen my rad onc every two months since and saw my ENT last month. I'll alternate between the two for the next year. So far I'm NED with oral cancer as well. I feel good, salivary glands and taste buds are working well, no problems for the last few months.

So yesterday I had an appt with my new ob/gyn for a standard yearly exam. She asked if I'd had BRAC testing, a genetic test that analyzes your genes for mutations responsible for inherited breast and ovarian cancer risk. She asked this because my Mom died of breast cancer and one of my grandmothers had breast cancer but went into remission for about forty plus years and eventually died of heart complications.

Thinking that the question was really meant for my daughter (after all, I did have b/c - what's the question?), I replied that given the political atmosphere, my daughter (along with the rest of the youth in this country) was fearful that her medical records would be deemed public information in our never-ending quest to locate terrorists and may play a part in future job opportunities, promotions, etc. The doc said that she was well aware of that and that was the reason why I should be tested. If I don't carry the gene, my daughter's risk would be no different that that of the rest of the non-risk population. If I do carry the gene, it's a whole new ballgame.

OK. I can do that. The testing is expensive but my insurance will pay for it, given my history. The test is simple: questionnaire and a blood sample.

AND THEN SHE SAYS, "If you do carry the BRAC gene, you will probably want to have your ovaries removed." Huh? Nooooooooo!

It isn't so much that my good-for-nothing ovaries would have to be removed, but I just don't want any more invasive body procedures! When is enough enough? So many women have had hysterectomies that it's almost a normal rite-of-passage and these women thrive and go on with their lives - but I'm just not ready for this so close to the cancer treatments. The procedure is even easy now and done laparoscopally. Aaargh.

I research everything so I went to the net today and found that not only do women who test positive have their ovaries removed but they often have preemptive double mastectomies. Christ.

What do I tell my daughter if I carry the gene? "Nikki, I really wanted to will you a beach house in Malibu, but instead I'm giving you the BRAC gene. Deal with it."

Did any of you see "Million Dollar Baby?" Stars Clint Eastwood, Morgan Freeman and Hillary Swank. This is now one of my all-time favorite movies and one so powerful that I can't watch it for another few years - it is devastating. Slowly removing body parts reminds me of this movie. (Despite this, it's excellent! I highly recommend it - the movie, that is, not removing body parts.)

Well, that's it. I'm a good little girl and will do pretty much what the docs tell me. I'll grudgingly get the ovaries yanked if the stats show it's a plus. Doubt that I'll do the mastectomy thing though - my Mom had a double mastectomy and yet managed to get metastasized breast cancer. Go figure.

Any thoughts? HELP!

Mimi

This message has been edited. Last edited by: Mimi McC,

Hi Mimi
its my understanding that theses measures are to prevent the gene having the opportunity to mutate in to cancer.I would have thought the test was more relevant to your daughter and any daughters she may have,rather than yourself,but i may be completely off beam in that.I would think long and hard before putting yourself through any of the aforementioned procedures,as removing your ovaries wil bring on the menopause .As if you havent got enough to deal with.

As for your daughter,i would make sure she has all the information available to her,and let her consider all the implications.

My sister in laws mother died from cervical cancer at 36,her sister died of breast cancer at 42,and her father died of oral cancer at 70.She has flatly refused to be gene tested,and has just had a hysterectomy for stage 2 cancer in situ of the cervix,which they have been treating her for ,for the last 20 years.She has urged both her daughters to be tested,but they declined.

It takes a very strong person to mutilate their bodies just in case,but i do know of quite a lot of women here in the uk who have undergone double mastectomy because of the presence of this gene.

Life is a lottery Mimi.Every day we survive is a blessing,and i know that it is the human instinct to live as long as possible,but somewhere into this equation must come quality of life,and spending every day worrying that you might get cancer is not a good or healthy way to live it.We all might get cancer,and yes some of us seem to have a greater preponderance for the disease(All the men in robs fathers family have died of it in different forms)but does knowing you have such a gene make you feel eaiser in your mind,or guilty of the posible effect on the rest of your family.

Big questions Mimi but i am sure you will get to your conclusions in the best way you know how.

good luck,and get good advice sweetie its not a one answer fits all situation.

love liz

Wow Mimi ,there is a lot of information to take on board here ,no wonder you feel you need to talk about it .

Mimi i agree with cookey ,There would be no harm done in taking the test ,then you would know the answer to the question ,do you carry the BRAC gene, you may not!!.

If the test says yes you do ,then you need to sit down with your daughter and have a full and frank discussion .She desrves to be in the full picture about her own health or possible problems in the future .

Regarding yourself Mimi I too would be feeling shell shocked and reluctant to go through anymore invasive surgery but at least you could check out other ways of dealing with this ,could they not maybe do concurrent 3 monthly checks maybe ?.Oh Mimi this is indeed a toughy of the biggest kind ,wish I could be more helpful .

As cookey said, over here if breast cancer is proved to be hereditary some women do go for elective mastectomies but i do not have the evidence or figures to say whether it is full proof a decade or so down the line .

Mimi I know we all want to protect or children from everything but in this case if the test proves positive she has a chance to make sure she gets all the checks and can be kept an eye on .This unfortunately has to be her own decision . Unlike your own mum the technology was not there to benefit you Mimi .Maybe forewarned will be of help to her.

I do hope and pray the test is negative Mimi as to go through more surgery when you are just getting back on your feet is just too much to take on board .

Take it one step at a time Mimi.

Please let us know how you get on with the test .

We are all here for you .
Love Bell x

Hi Mimi,

What a thing to have to deal with. Think the above comments are worth considering though. Such a hard decision. I am just on here helping a friend so cannot even begin to imagine what most of people here are going through. So good to have support though. I do hope you come to some conclusion and have peace of mind on this.

L o L

Joan x

Yep Mimi, you sure do seem to have a lot on your plate.

From a male prespective, its quite hard to digest all this sort of information, as so much of it is foreign to me. I know I cannot compare our cases directly, however I constantly wonder should I have gone for RT and chemo, especailly having so many teeth out and how hard it is eating now with no saliva. Was it all necessary.

They the doctors said it was, and I did explore this decision to the limit, being infront of some quite well qualified people and looking them directly.

Whatever route you decide, you will know whats the right one I feel sure, well based on your recent postings anyway. Most interesting, provoking debate and dialog etc.

All the best from Wales, its raining again. (Supertramp).

Nigel

Hi Mimi, that's a shit deal you've got at the moment but as Nigel says, you'll find the right decision. Hopefully you wont have this BRAC thing anyhoo. Keep your chin up. Hagg.

Thanks to everyone for the thoughtful words. I'm over the shock now and can deal with this, which is absolutely nothing compared to what so many others have gone through and who continue to do so. Right now I'm cancer free, I feel good, I'm grateful, I shouldn't be whining, but this was unexpected, a totally unrelated doctor's appointment that I thought had nothing to do with cancer. Sigh. I've indulged myself in a 24 hour whinge binge and now I'm back on track. I've got stuff to do!

For the past few years my daughter and I have discussed her high risk for breast cancer and she has been able to get mammograms every year although she's too young to automatically have it taken care of by insurance (they begin that at age 40). Fortunately, she has a GP that she has a good rapport with and he has the mammos scheduled without it becoming part of her record. Helluva' thing to have to consider, huh?

Yet we're both like teenagers who think nothing can ever happen to us. My previous cancer thingeys are just flukes and I'll never get ovarian cancer; she won't get breast cancer, she's too young, never mind the stats that show that women are getting it earlier and earlier. What denial! Yup, I can have a few drinks and drive home....Yup, I'm a teenager and can have sex without protection....I can smoke 2 packs a day and never have to worry about cancer....It happens to other people, never to me....

Ah, the best-laid plans of mice and men.

While waiting for insurance approval, I probably won't have the testing done for a month or more and then there is a three week turnaround for results. This isn't something that will weigh too heavily on my mind - it's either there or it isn't and there's nothing I can do to change it. If the test proves positive, I'll do the ovary surgery, not right away though, and have decided against the double mastectomy. It didn't do my Mom any good; on the other hand, she never had ovarian cancer. I have no idea what any of this means.

Again, thanks. There are some things that I don't want to bring up with friends and relatives, not so much that I want to spare them the news, although they have to be as tired of my cancer as I am, but that they too have the possibility of cancer in the future as well equally devastating conditions such as heart disease, diabetes, and a great litany of diseases and conditions.

Watched "Atonement" today - terrific movie!

Mimi

Hi Mimi, everyone is entitled to whinge but glad you're back in positive mode. Nicely done. Hagg.

Hi! Mimi,
WHINGE who's winging? if winging helps get things off your chest and helps you get through the battle it's NOT winging. Go it girl talk, talk all you like and we will be here to listen and help.
"Stay Strong"
TREV