“Angelina Jolie Pitt: Diary of a Surgery”


Whether one agrees with Ms. Angelina Jolie Pitt’s decisions about preventive surgery or not (and some will argue that her decisions are controversial), there is one thing that is very clear. She has used her celebrity to explain, very publicly, the decisions she has been making as a patient about her risk for cancer and what she is doing about that risk.

The most recent of these explanations was published today (under the above heading) in the Opinion pages of The New York Times. Three members of Ms Pitt’s family (her mother, her grandmother, and an aunt) have died of cancer. Ms. Pitt carries the BRCA1 gene, and 2 years ago she had a double mastectomy. A week ago she also had a laparoscopic bilateral salpingo-oophorectomy for removal of her ovaries and her fallopian tubes in order to minimize her risk for ovarian cancer.

As Ms. Pitt writes:

It is not easy to make these decisions. But it is possible to take control and tackle head-on any health issue. You can seek advice, learn about the options and make choices that are right for you. Knowledge is power.

Why should we care about Ms. Pitt and her decisions? She has resources unavailable to the average woman (or man) in the street. She can probably (pretty much) walk in to see any doctor she wants to anywhere in the world to get his or her opinion. She is by no means an “average” patient — for all sorts of reasons.

We should care about Ms. Pitt and her decisions because she exemplifies the determination to make the best decisions that she can, as a very normal patient, about a serious clinical problem.

Earlier today, one of our regular correspondents wrote the following:

… most people, when diagnosed with “cancer”, are soooooo freaked out they don’t care what side effects are associated with treatment as long as they have a chance at being cured. I remember sitting in my urologist’s office at 42, with a 2-year-old and a 6-year-old at home, telling him I didn’t care if I had to wear a diaper the rest of my life as long as I would not die on them at such a young age. Side effects weren’t even on the radar with me as they aren’t with most men that receive this devastating diagnosis.

While this is an understandable reaction to a diagnosis of prostate cancer in a young man in his 40s, it is also not a reaction that is ever going to help the patient get the best possible care or make the best possible decisions. It is a reaction that reflects the history of cancer from the early 20th Century, with the assumption that any diagnosis of cancer comes with the certainty of death in the short term. But that is simply not the case for the vast majority of prostate cancers, and so having such a reaction places any patient at risk for making inappropriate and immediate decisions that come with very serious consequences. And it gives the patient no real time to come to terms with what those consequences might be.

Ms. Pitt writes about the importance of understanding the consequences of her decisions, of making those decisions in the full light of the available evidence, and of coming to those decisions in ways that she believes will work for her.

The “New” Prostate Cancer InfoLink would like to think that more men would think as hard about what to do to prevent and manage their risk for prostate cancer as Ms. Pitt has about her risk for breast and ovarian cancers. To do that, most men need a clearer appreciation of their health risks in general and their cancer risks in particular. We all have responsibilities — to ourselves and out families — about our health. We aren’t all going to be able to prevent all the possible health risks we face on a daily basis, but most of us men could do a lot better job of managing our health over time than we do. If we want to do that much better of a job, we need to become “empowered patients” who understand our responsibilities, get regular health checks, etc., and then make the decisions that work well for us as individuals.

The one thing Ms. Pitt quite certainly is, is an empowered patient who is willing to share her experiences in the interests of others who may have to face similar decisions in the future. We could all do worse than acknowledge and recognize the example she sets, work out how to talk about such an example with our own families, and take that example to heart for ourselves.

11 Responses

  1. What strikes me from what I heard in commentary today, is that doctors frequently recommend such prophylactic procedures for younger women carrying the BRCA mutation with a history of breast and ovarian cancer in the family … on top and below!

    Has anyone ever heard a urologist or GU medical oncologist recommend a prophylactic prostatectomy to a man who carries the BRCA gene and has extensive history of mortal prostate cancer in the family.

    I think of my buddy Jerry, who only today was informed by his doctor that his platelet count is too low to continue chemotherapy for the time being. Jerry lost his brother and his father to this disease. I do not believe he has been tested as yet for the BRCA mutation. Or my buddy Dominic who mentioned yesterday that women can get their blood tested for the BRCA mutation and even covered by insurance, while men find it very hard to access this test.

    In the several years I have experienced and advocated around prostate cancer, I can only recall one discussion about a prophylactic RP, and that at the instigation of the patient.

    Don’t we have a double standard here? I am tempted to submit a supportive counterpoint to Angelina Jolie for the New York Times, but frankly, to have any chance of being published, it should come from one of our major prostate cancer organizations — or all of them co-signing together. There’s a concept!!

    rd

  2. Well said. We all need to understand risk/reward and make informed decisions — if possible using all means possible means that are applicable to our situation: genomic, radiographic, pathologic (Gleason grades), PSA kinetics, etc. Seek multiple opinions from practitioners of different perspectives and at institutions.

  3. Dear Rick:

    I am aware of just one completed, prophylactic radical prostatectomy (several years ago now, at the instigation of the patient, who had an extensive family history of prostate cancer but no data related to BRCA1/2 mutation). That patient had a hard time finding a surgeon willing to operate on him.

    The problem we are faced with is that, at present, there is (a) very little evidence that a BRCA1/2 mutation alone in male carriers is necessarily a significant risk for prostate cancer-specific mortality (unless there is also concomitant family history of the disease) and (b) no evidence at all that prophylactic prostatectomy will significantly lower that risk (because, as far as I know, no one has ever had such an operation based on the combination of BRCA1/2 mutation with a family history of prostate cancer).

    Absent such data, all it would reasonably be possible to do is advocate for the collection of such data and consideration and evaluation of a pilot study of prophylactic treatment of some type in such very high-risk patients. Without data, it is not reasonable to suggest that there is necessarily a double standard here. In the case of women who carry the BRCA1/2 mutation and have a family history, there are at least data to support the actions taken by Ms. Pitt.

    I certainly think that the members of the Prostate Cancer Roundtable would be willing to advocate for research into this concept and exploration of the possible pilot study, but I would actually have a very hard time myself justifying an actual recommendation about prophylactic prostatectomy outside of a clinical trial at this time.

    Perhaps Tony Crispino would like to bring this issue to the attention of the SWOG network for discussion.

  4. RP when you don’t even have prostate cancer yet? with all the side effects? Sheer madness for a man with a normal, fulfilling sex life. …

  5. Dear Walt:

    You might have a different opinion about this if you were 42 years of age, had a family history of BRCA1/2 mutation, and your father, your grandfather, and one of your paternal uncles had all died of aggressive, metastatic prostate cancer in the mid 60s.

    No one is suggesting this would be an easy decision, but …

  6. Yes prophylactic prostatectomy was done last year in the UK .

  7. End of sex life at age 42? I’d rather be dead. …

  8. Dear Walt:

    With the very greatest respect … you may think that, but you have never been faced with the actual situation, so I don’t see how you could possibly know that.

  9. Quality of life means different things to different folks I imagine.

    My Dad faced death bravely in 2011. When my time comes I will do the same.

  10. “RP when you don’t even have prostate cancer yet? with all the side effects? Sheer madness for a man with a normal, fulfilling sex life. …”

    Walt:

    May I respectfully suggest that while the decision might be sheer madness for you, that may not hold true not for every man. This disease and its consequences are very personal — not only in its pathology, but also in how it impacts each man. What is crazy for you may be sane for another. Please allow that.

  11. SWOG, and other co-operative groups, currently hold regular translational medicine reviews. One of the projects involves a genitourinary panel reviewing tissue banks from the PCPT and SELECT and getting genetic data and biomarkers. It would be a retrospective view — but a view none the less — of the “17” genes thought to be reasonable biomarkers to help determine how aggressive prostate cancer is.

    Of course the costs that would be associated with even a pilot clinical trial for BRCA1/2 are quite prohibitive. There would need to be a willing sponsor.

    I have had several discussions over the years with men about prophylactic RPs. I do not know of any that did it, but I have heard of a prophylactic orchiectomy in a man in his 60s due to fear of prostate cancer. It’s pretty much in line with Ms. Pitt.

    Also, I have heard discussions at the dinner table at SWOG about options before non-surgical castration methods were available: orchiectomy was common with RP based on absolutely no data at all that it would help the patient. Unfortunately, that is also in line with Ms. Pitt.

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