Tuesday, May 14, 2013

What would YOU do?

The topic I started off writing about this morning has been preempted by Angelina Jolie's news.

Didn't hear?  Angelina Jolie has announced that she has undergone a double mastectomy after discovering that she had a faulty gene that put her at huge risk for developing both breast cancer and ovarian cancer.

You can read the op-ed piece Angelina wrote for the New York Times here.

In the last year alone, I have had two friends battle breast cancer successfully.  The odds are so much better than they were even 10 years ago.  One of these friends chose to be genetically tested to determine what kind of cancer this was; i.e. would it be better to stick with the radiation plan that the doctors had devised, or ought she go with a more aggressive strategy that included chemotherapy.  After spending $3000 of her own money, it was clear that radiation alone would more than suffice and she is unlikely to have a recurrence.  She can afford to get that test, many women cannot.


Angelina is a mother of six and has watched her own mother die young from this horrific disease.  I can understand her decision.  I am also confident that her reconstructive surgery has been top-notch and that unless she had told us, we might never have known that she had had this operation.  What I am unsure of is whether such surgeries are fully funded here in Canada (sure some of you will know that!), including determining if there is a genetic predisposition to certain kinds of cancer.  I know for certain that testing to determine the best course of treatment is not.

I applaud Angelina for coming out and starting this discussion.  For many, she is the epitome of glamour and sex appeal.  I do not expect that to change.  But for me, her humanitarian work, coupled with her advocacy for women's health is where her real glamour lies.

Would love to hear your thoughts on this?  Have you done genetic testing?  Would you?  Can you?  As our technologies become more advanced, it is critical  that everyone has access to this kind of information. And as I said Angelina was tested because she had a a strong likelihood of a predisposition.  That strong predisposition is still thankfully rare.  But there are many cancer patients who would benefit from testing while undergoing their treatment plans.   My friend had the money for her testing.  Someone tell me that we are really close to the rest of the world just swabbing and getting that information almost instantly?  If Angelina's story can spur more of us to demand equal access to genetic testing than I think she will have done more than simply save her own life.  She may save the lives of countless others.

I love it when celebrities do good things with their celebrity.

So happy Tuesday and stay safe out there!


38 comments:

  1. POWER FOR GOOD Well WMM, wasn't expecting to be one of the first ones. But it is a topic that I too know a bit about. Decided just this year, after much self-debate, to have the "marker" testing, which I am now on the "get an appointment" wait for, no short thing where I am. As I understand it, and am still researching this for all provinces, the initial BCRA 1/2 indicator test is health plan funded, if your doctor recommends it. However, the "second", more detailed and truly helpful full gene test battery is not and even many private insurance plans won't fund it. I look at it as, if you haven't had a diagnosis yet, the "first" test is at least a decent indicator if you should invest in more comprehensive testing. Regarding this type of testing in general, I do think about the possibility of insurance and employment discrimination, not for me personally per se, but as a how the world works. (I don't know yet if Canada has an equivalent to the US' GINA Act.) Also if a woman knows she carries a 50% chance of developing breast cancer how comfortable will she feel marrying/ partnering long-term someone etc. What about guilt passing it on to children? Knowledge in my opinion is power, but it is never simple.

    Brangelina has sometimes annoyed me mildly. However, I do so admire her stance on this one and everything UN. Had the opportunity to see Brad's work re. housing redevelopment in NOLA's 9th Ward (he was on a set so only on a video link) personally. And as you say, with all the celebrity nonsense in this world, it is good to see a couple using their clout and profile for good.

    ReplyDelete
    Replies
    1. I also meant to note that Angelina lost her mother young. I think those of us who have been through that kind of experience (noting cancer treatment has also progressed massively in the past decade) may have a very different mindset on testing than those who have not had a close family member or friend diagnosed.

      In other news, lovely to see Hadfield home! He must be a bit wistful. That capsule is such a tin can.

      Delete
    2. Ooops, also wondering what the club thinks about her decision in terms of the fact that many women, including those with the financial means for screening tests, could not necessarily afford the additional time, money, childcare etc. to pursue the agressive and reconstructive course she chose. Aside from boosting awareness, is she promoting something that is beyond the reach of many?

      Delete
    3. Hi GF!

      Good for you for deciding to get the testing. I admire Angelina a lot, but I agree with you - is this kind of reconstructive surgery available to all women who determine they have the marker and want to do something about it? I doubt it. I think her intentions are really good here however, and I am hoping that it starts a conversation and a debate about access to preventative treatments and surgery that could save the health system millions down the road. We spend so much time fixing things after the fact, when treating people early, helping them access healthy food, giving them tax breaks for things like fitness memberships,etc, would go a long way in helping us as a society!

      Delete
    4. True WMM, but that will require major reforms in not just our healthcare but pharma, workplace culture, education etc. etc. systems. Hate to be a cynic, but there is less profit in prevention than cure, from some powerful business perspectives at least.

      Delete
    5. It is here, thankfully, the NHS is one of the most wonderful facility, I hope we never lose it.

      Delete
  2. Such a hard decision to make.... Although I suppose that if one knows one has the gene, it makes it perhaps a bit easier.
    I have a friend who has recently had a radical hysterectomy due to having the gne for ovarian and breast cancer.
    The advice she received was that it's way harder to diagnose ovarian cancer, so better remove ovaries etc than risk not being diagnosed until its too late.
    She didn't have a mastectomy.
    The economics of the whole screening/surgery/reconstruction is ethically worrying....

    ReplyDelete
    Replies
    1. agreed Ruth - would be difficult decision to make!

      Delete
  3. Wow I'm amazed that Angelina Jolie was able to keep her privacy during this ordeal, and good for her, writing about it and choosing her own method for making the news public.
    I admire Angeline Jolie, the work she does for the UN and for women's health, she doesn't have to do any of that, she could lie around at a spa all day if she wanted to, but she chooses to use her celebrity for good.
    I have a friend who tested positive for this gene, she had her ovaries removed which pushed her into early menopause. She has three children, fairly young, so she did need some help around the time of the surgery but between friends and family helping out she was just fine.
    She certainly doesn't regret having the surgery and our health care system paid for the whole thing. Of course health insurance in the US is different and I don't understand it, equal access to this type of testing is probably going to be a huge issue.

    ReplyDelete
    Replies
    1. I think this will be where the equality of health care access really starts to hit the wall and it will be interesting to watch!

      I would definitely get the testing if i had her family history and definitely follow up as your friend and angelina did

      Delete
  4. I'm all for genetic testing, knowledge is power.
    I am so please that she managed to keep her privacy too, and I think it's wonderful that she has spoken about it. It's all funded on the NHS here, thankfully including reconstruction, - I wouldn't hesitate to do the same.

    ReplyDelete
    Replies
    1. I am blown away by her ability to keep it secret - in the age of TMZ and health care staff leaking private information, this is impressive indeed! yay NHS!

      Delete
  5. I can see why she did it, but it seems like anything that can be done can have a negative consequence as well. Remove ovaries, perhaps you're at higher risk for heart disease (or a bad outcome from the surgery itself). A double mastectomy is a big surgery that probably comes with risk of infection etc. Even my knee surgery left me worse off than before I went in. I would not jump into major surgery quickly, and I'm sure she didn't either. It's a risk in and of itself. Angelina Jolie has money to access the best health care money can buy. Most of us don't, whether or not it's paid for by health insurance or a national health care system. Plus, having access to it doesn't make it good. I hate to be so negative, but I've seen and had some bad experiences with good health care. I would definitely proceed with caution.

    ReplyDelete
    Replies
    1. Cate - I agree. I don't know where you live, but I would be loathe to be operated on where i am if I could avoid it as the numbers of people getting similar operations is so low and therefore the quality can't possible be as high as if it done by someone who is doing dozens of these monthly!

      Delete
  6. I am for genetic testing if there is an ability to do something with the information. I would not want to know, for example, that I have an 85% chance of having ALS. In that case, ignorance is bliss. National healthcare in the US is a very touchy subject. I pay a ton of money as a small business for bare bones healthcare. Not happy with everything but am glad we are finally at least taking steps in the right direction.

    ReplyDelete
    Replies
    1. BB - I hear you! there are some things that the US health care system is awesome at (wait times for certain procedures for example), but the cost is so high. I do find your system complex, but then have never really had to think much about the canadian system, thank goodness!

      Delete
  7. The thing about facing the (almost) inevitable early is control. The decisions are hard, but dealing with them under time pressure makes them harder.mAnd quite often it becomes too late to take some choices.

    I think it was courageous of her to choose to reveal her choices and her reasons, and I think that will be a fine example for her kids in years to come. None of this is simple for anyone, but if you have the access and resources to get the best care, and you don't, you're just stupid.

    ReplyDelete
  8. I am not a fan of Angelina Jolie, but I applaud the voluntary sharing of her story. Every time the healthcare debate comes up here (weekly), I remember a local story about a woman whose family owned their own business, and went bankrupt through her breast cancer fight, since they had no health insurance. Things like that infuriate me. I know we don't have the health care system right (by a long shot), and lots of people assign very malicious intentions to the entire attempt, but I think we have to try.

    I'm having an infertility treatment/test done later this week (trying for one more baby). When I spoke to the nurse over the phone to schedule it yesterday, she cautioned me NOT to give the provider my insurance card. If I present payment there, it will cost $238. If they bill my insurance, it will cost me over $600. Perfect example of one of the things broken in the US healthcare system. It's pretty outrageous...

    ReplyDelete
    Replies
    1. Wendy - your story at the end is shocking to me! Wow! Good luck with your tests - am rooting for you (your uterus? what does one root for in these situations?)

      Delete
  9. Your post reminded me of THIS STORY. I used to say that there was nothing good about tattoos but I stand corrected in this case.

    ReplyDelete
    Replies
    1. what a great story! Thanks so much for sharing!

      Delete
  10. I have a friend whose mothers died of breastcancer and she got tested for the gene.If she would have been positv(she was negativ)she would have had a a mastectomy(paid for by the insurence).The test was paid for too,because of her mom.

    It is a very hard subject and i would def do it like Angelina if i had the gene.

    ReplyDelete
    Replies
    1. It is hard, isn't it? I think I would do the same, but I guess we never know for sure!

      Delete
  11. I admire her for going public on this issue. If it is covered by insurance & if I was genetically at risk, I may do the same. It will require a lot of thought & funds though, since there are also lots of false positive cases too.

    ReplyDelete
    Replies
    1. Marie - that is an excellent point - false positives are really scary...

      Delete
  12. She is definitely one gutsy lady, but given her circumstances, I think she didn't think twice about the double mastectomy. She obviously wants to be around her children for as long as possible.

    Many eons ago I used to work at the local Cancer Research centre and know that there was a lot of research done for a standardized test for the gene. Not sure if this test is routine now the way screening mammography in BC is.

    I am certain her high profile will bring a lot more attention to this terrible disease and can only help the cause, in my opinion.

    ReplyDelete
    Replies
    1. Rose - I agree - I think Angelina Jolie is going to create a lot of debate and that is a good thing!

      Delete
  13. Wouahou... So I might be the only one with this opinion, but I had to say it... Before I would like you to know that my Mum is treated for leukemia, a very good friend of mine passed away two years ago on New Year's eve following a long and cruel battle against ovarian cancer, one of my friend had had breast cancer, my best friend's husband is still battling (4 years and goes on) a very rare cancer and I was member of Think Pink Luxembourg...
    I do not understand that we let women getting mutilated like this... How can a doctor come up with such a number: 87 % risk of breast cancer, seriously?!?!? I think, and I should dig and find you this TED Talk on the topic, that most of the cancer that people develop are due to environmental factor... It is also proven that nearly all studies regarding medicine facts, drugs and food are funded by pharmaceutic companies, food companies and the so call "medicine" which I refer to holistic medicine... I think that people should always read several sources of information and if you read as much info from allopathic medicine sources as from hollistic ones, you might get surprised... I know this is disturbing for many people and uncomfortable... Don't get me wrong, I think we should work for women to get better, we should try to find solution regarding those horrible diseases but I don't thing that this kind of surgery is THE solution... I am also very disappointed to hear that still today hollistic doctors do not work in hand with nutritionist as it is proven that chemo alone will not cure... A change in life style and nutrition is mandatory... There are so many things to be said here, I apologize for mixing... But ovarian cancer is much more aggressive and the chance of survival are much lesser that breast cancer, so why not having her ovaries removed???
    And again on a completely different level, has anyone of you heard a man being offered to remove is testicles to avoid having cancer because of any genetic factor???
    So if I can understand here decision, I really cannot approve all the publicity that is made around it...
    Again, this is a very personal opinion and I really don't want to offend anyone. I do apologize if I did...

    ReplyDelete
    Replies
    1. I Steph- no need to apologize - I think that the issue is ripe for debate and discussion and I do agree that there is a tendency to focus solely on chemo or radiation or surgery. I think nutrition and diet is really important and has shown to make a huge impact and that there are many doctors who would benefit from a much more holistic approach to the health care and treatment of their patients. I am assuming that Angelina is going the whole thing, but I think you raise very valid points!

      Delete
  14. Wow! I did not know this! it's really shocking, but as you say I'm sure she's had top notch surgery and you could not tell. I'll have to google this - is this after having that "23 and me" test. This is the test you do with saliva which shows all your propensities - toward cancer and altheimers and all the diseases. In some ways i would not want to know all these things, but I suppose this is burying your head in the sand. Mind you the test shows she has a propensity towards it, not necessarily that you will get it.

    ReplyDelete
    Replies
    1. Yes just read and she has an extremely high risk, very brave of her.

      Delete
    2. Yes, I don't really know that much about this testing, and like Steph, was intrigued that they could pinpoint it so definitively to an 87% chance of... Having said that, I do understand statistical modelling, and assume that is how they do it; i.e. they know from past research that 87% of women with this level of marker in their blood get the cancer, etc.. Interesting topic!

      Delete
  15. Isn't it wonderful that she was able to be tested and had the choice to increase her percentage against this awful disease. Our family has lost two aunts 26 and 41 year old .This past week has been a nightmare as my younger brother has 3 hotspots on his spine and is very ill. Don't mean to be a downer but I really admired her for going public with this.

    ReplyDelete
    Replies
    1. Oh Marsha! I am so sorry to hear about your brother! You are not a downer at all! I agree with you - we need all we can get to fight this terrible disease! Your brother is in my prayers!

      Delete
  16. It is not an exact risk, but UP to 87%. Avg for gene carrier is about 50-60% lifetime risk; this is as opposed to abt 12% lifetime risk for non- carriers ( assumes living to abt 90). The ovarian risk is also elevated, but removing ovaries at her age would increase her risk of other diseases-- heart disease, osteoporosis. Such a hard brave decision she has made.

    ReplyDelete
  17. Hello! I am rather late but better late than never...
    This is a multi-pronged question I feel. You are so lucky in Canada to have that option to get tested and the authorities to deal with the outcomes but there are many countries where the cost is a private burden. I can't imagine the turmoil of women in certain countries not being able to afford the luxury or just managing the afford the test but not much further...

    I was talking about this with a few friends in the medical field and while this is amazing and a great medical advancement, the cold hard fact is that we still are at the very beginning of genetic markers and the true development of a cell mutation. There are so many things that are ingrained at birth but DNA can mutate from factors as subtle as not sleeping at least 6 hours a night. So genetic markers is not as simplistic as it makes out. Sorry to go on at length - ( mind you I am precising this!!) but it raises such important questions and I appreciate Ms Jolie addressing them in such a tasteful and appropriate manner.

    ReplyDelete

Kindness is a virtue...