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A Patient’s Journey: Angelina Jolie

In an article in the New York Times today, My Medical Choice, Angelina Jolie promised to share some background about her medical treatment with women seeking more information about BRCA gene mutations and what it might mean for them. This blog describes the main stages of her treatment.

It is important to emphasize that each woman’s case is different. Surgery will not necessarily be the right choice for everyone, and there are alternatives available. As Angelina says in her article, the important thing is to be aware of your options.

Stage 1. Gathering Data and Information

  • BRCA stands for BReast CAncer.  BRCA genes help you fight cancer when it happens in your body. But some families carry mutated or broken BRCA genes that can be passed down from one generation to the next. Approximately 5-10% of all breast cancers and 14% of ovarian cancers occur from a BRCA1 or BRCA2 genetic mutation that is inherited from either parent.
  • Women carrying BRCA1 or BRCA2 gene mutations have up to an 87% lifetime chance of breast cancer and 54% chance of ovarian cancer vs. a general population risk of 12% for breast cancer and less than 1% for ovarian cancer. Prevention does not yet exist. More details about the risks of breast and ovarian cancer, including how risk changes with each decade of life, can be found in our BRCA Gene Mutations blog post.
  • Given the high likelihood of getting breast or ovarian cancer with BRCA mutations, family history usually triggers testing for the gene. Angelina’s mother had breast cancer, and sadly passed away from ovarian cancer.  Her maternal grandmother was also diagnosed with ovarian cancer. This family history would certainly meet any insurance carrier’s criteria to cover genetic testing. To find out if there is enough risk for you to consider a BRCA mutation genetic test, we encourage you to take our Genetics Quiz that reviews a variety of information, including your family history.

Stage 2. After diagnosis: Traveling the Road of Surveillance

We follow a standard surveillance plan at our center for BRCA mutation carriers, which I used for Angelina:

Beginning at age 18, or 10 years younger than the youngest relative with breast cancer, every 3 months, you have breast imaging or an exam. An example plan follows:

  • Month 1:
    Mammogram (wait until 25 years old)
    Whole breast screening ultrasound (begin at 18)
  • Month 4:
    Clinical breast exam with a breast specialist
  • Month 7:
    Breast MRI, timed to menstrual cycle days 7-10 (day 1 is the day bleeding starts); Contrast Enhanced Spectral Mammography (CESM) for those who cannot have an MRI
  • Month 10:
    Clinical breast exam with a breast specialist
  • Every month:
    Self breast exams (cycle days 7-10). If you don’t know how to do a self breast exam, please watch our how-to video.

For those who prefer twice-a-year surveillance, we combine the imaging with clinical breast exams, and meet every 6 months.

Ovarian surveillance begins at age 35, or 10 years prior to youngest relative with ovarian cancer, and includes the following:

  • Transvaginal Pelvic ultrasound every 6 months (cycle days 1-10)
  • CA-125 blood marker testing every 6 months (after cycle day 5)
  • Pelvic exam by gynecologist every 6 months

For additional screening details, including risk reduction strategies and holistic and integrative medicine, see our blog on BRCA Gene Mutations.

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Stage 3. Committing to an operation

When first meeting a woman newly diagnosed with a BRCA mutation, my immediate goal is to learn about her, including her family situation, whether she is in a stable relationship, and whether she is planning to have children. In the course of these discussions, it becomes clear whether the patient will proceed to a mastectomy.

Stage 4. Preparing for the operations

The questions any patient needs to address at this stage include: (1) whether or not to preserve the nipples, (2) if so, whether or not to perform a “nipple delay” procedure, (3) where to place the incision, (4) whether or not to test sentinel nodes, (5) what kind of reconstruction will be done, (6) what supplements might enhance healing and recovery, and finally (7) where should we operate.

NIPPLE: Women undergoing preventive mastectomies can always consider keeping their nipples. While no one can guarantee that the nipples will survive an operation, much can be done to ensure the greatest chance of success.

NIPPLE DELAY: The delay, performed 1-2 weeks prior to the actual mastectomies, uses the planned mastectomy incision and lifts half of the skin off of the breast surface. A small disc of the tissue directly behind the nipple and areola is also removed and analyzed by a pathologist. This is done to rule out the presence of any disease directly behind the nipples, which would make preserving them a dangerous proposition. Additionally, it recruits extra blood flow to the area, lessening the chances of nipple and skin loss due to insufficient blood supply after the mastectomy. Since starting this technique in 2008, my loss of skin and nipple after mastectomy has decreased to less than 2%. In Angelina’s case, she judged it worth taking this extra step of caution.

INCISION: Incision locations must take into consideration a cancer location (if cancer is present), any prior incisions, breast size reduction (if desired), and the technical skill of the surgeon (smaller incisions make for a harder and longer operation). For Angelina, her optimal incision choices were around the areola, or underneath the breast in the inframammary fold – the latter was chosen.

SENTINEL NODE BIOPSY/PBDI: Whenever a breast contains cancer and the armpit lymph nodes cannot be felt on exam, we routinely perform a sentinel node biopsy, which is the removal of the first nodes that receive breast lymphatic drainage. By injecting blue dye into the breast, which then travels to the lymph node(s), we find out if cancer spread beyond the breast. Until now, the trend has been not to perform sentinel node biopsies in conjunction with prophylactic (preventive) mastectomies since the discovery of cancer in breasts removed prophylactically only ranges from 2-8%. Therefore, most women do not want to take the additional risks associated with a sentinel node biopsy, especially since they can have complications, such as pain, numbness, arm swelling (lymphedema), fluid buildup (seroma), limited arm movement, and infection. This dilemma has been resolved with a new technique that was pioneered at the Pink Lotus Breast Center, called Prophylactic Breast Dye Injection, or PBDI. PBDI allows the sentinel node to be identified, but not surgically removed, giving more control and peace of mind to women. I developed this technique while treating Angelina, and I hope other women will now benefit from it. It was at her friendly insistence that I wrote the rationale for it in our blog post, Prophylactic Breast Dye Injection.

RECONSTRUCTION: Reconstruction options vary depending on a number of factors.  The two broad categories of reconstruction include implants and flaps. Implants are the most common reconstruction, often requiring two stages, whereby a tissue expander is placed prior to the final implant. A tissue expander is a deflated implant that goes behind the pectoral muscles and gets slowly inflated with saline over a period of 2-3 months, until the chosen volume is reached. A second operation is performed to swap the expander for the final implant (usually silicone). A different implant option can be a “one-step” operation, where the final implant is placed at the time of mastectomy, skipping the expander phase.

Two improvements which I believe can enhance the final outcome for those patients choosing implants include: (1) the newly FDA-approved anatomic implants, which are teardrop shaped, and (2) allograft, or synthetic sheets of material, that create a more natural look.

Autologous flaps use your own skin, fat and sometimes muscle from the abdomen, back (latissimus), thigh (gracilis), or buttock to create a potentially more natural breast reconstruction than implants can achieve. Flaps, however, create scars at the donor site, potential weakness in the donor area, and involve a longer operation than implants, with longer recovery periods and associated hospital stays.

Angelina’s body type was best suited to an implant reconstruction with allograft.  Although tissue expanders required an additional operation, she preferred to use them.  Expanders maximize blood flow to the breast skin and nipple (because they are not fully expanded right after placement, they do not compress the tiny blood vessels in the skin), and they allow us to optimize the final implant size, location and appearance.

SUPPLEMENTS AND PREP: To prepare for and to recover from operations, patients can use a variety of supplements.  Angelina followed the regimen below, written onto a calendar:

To enhance wound healing (for each operation):

A) Vitamin C: 1000mg tablets; one tablet once daily for one week before and one week after surgery.

B) Multi-Vitamin: one tablet once daily for one week before and one week after surgery.

C) Zinc: 50 mg; one tablet once daily for one week before and one week after surgery.

To reduce the risk of infection (operations 2 and 3):

D) Bactroban ointment: Applied twice a day beginning 3 days prior to surgery x 7 days.

E) Hibiclens shower: Hibiclens soap applied to upper torso and abdomen – left on for 5 minutes, then rinsed. Applied once a day for 3 days prior to surgery.

F) Keflex: 250mg (antibiotic); one tablet 4x a day for 7 days, beginning with 2 doses the day of the operation.

To reduce postoperative nausea and vomiting (for each operation):

G) Emend: 40mg; one tablet by mouth the night before surgery

To reduce postoperative swelling and bruising (for each operation):

H) Arnica Forte (Arnica and Bromelain): two capsules daily x 7 days, beginning one day prior to surgery.

To help eliminate anesthesia from the system (for each operation):

I) Exchem: 10 drops in water or directly in the mouth twice daily, beginning the day before surgery and continuing for one week after surgery.

J) Lymphomyosot: 10 drops in water or directly in the mouth twice daily, beginning the day before surgery and continuing for one week after surgery.

To increase oxygen to the skin (operations 1 and 2):

K) Cutagenix: Applied to breast every 6 hours x 3 days. Skin care specialists use this topical cream after laser resurfacing to increase oxygen flow to the outer layers of skin. We decided in Angelina’s case to apply it to the mastectomy skin to give it an oxygen boost and to help ensure adequate blood flow to her skin postoperatively.

To minimize scarring (after operation 3):

L) BioCorneum: Rubbed into scars twice a day for 12 weeks – begin after the third operation once steri strips are removed.

Medications “as needed” for comfort:

Percocet: 1-2 tablets every 4-6 hours as needed for pain

Colace: 250mg twice a day

MiraLax: One tablespoon diluted in 8oz water once a day

Ativan: 1mg every 8 hours as needed for muscle spasm

Zofran: 8mg oral dissolving tablet placed on tongue every 6 hours as needed for nausea

LOCATION: Angelina chose to have her care, including her three operations, performed at the Pink Lotus Breast Center. Some people might think that a hospital is the only place to have a mastectomy.  However, outpatient surgery centers provide an attractive, peaceful alternative when coupled with attentive nursing care at recovery facilities. You can learn more about our comprehensive and integrative breast center by exploring this website.

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Stage 5. Recovering from the operations

On February 2, 2013, Angelina was in the operating room for the first operation, the nipple delay. Her partner was on hand to greet her as soon as she came around from the anesthetic, as he was during each of the operations.

After the operation, her skin was slightly bruised but soon returned to normal.  Two days after her procedure, great news arrived: the tissue behind both nipples came back completely normal.

On February 16 she had the main surgery, which can last up to eight hours.  The mastectomies went smoothly, with sentinel nodes identified but not removed.  After the mastectomies, I assisted plastic surgeon, Dr. Jay Orringer, as we performed the first stage breast reconstruction by placing tissue expanders with allograft.

To a large extent, I believe recovery reflects expectation. Angelina expected to feel well, to be active. On Monday, the pathology returned and I called Angelina to confirm our biggest hope: all of the breast tissue was benign. On day four after her mastectomies, I was pleased to find her not only in good spirits with bountiful energy, but with two walls in her house covered with freshly assembled storyboards for the next project she is directing. All the while she spoke, six drains dangled from her chest, three on each side, fastened to an elastic belt around her waist.

The next day she had her first injection of saline into the expanders, thus beginning the process that would gradually prepare the tissues for the final stage of her operations, reconstruction. Four of the six drains were removed.  Four days after that, on postoperative day nine, the last two drains were removed.  A second saline fill occurred on March 4. Over the next four weeks she was hard at work.

The final operation occurred on April 27, 2013, ten weeks after the mastectomies: reconstruction of the breasts with implant, which went extremely well, bringing an end to her surgical journey.

New Episode: Dr. Neal Barnard Puts Your Body In Balance

dr neal barnard is a guest on cancer-kicking powwow podcast

Cancer-Kicking! PowWow

Dr. Kristi Funk’s new video podcast explores the thriver stories of women who have altered their lifestyles after a breast cancer diagnosis, emerging with a profound sense of purpose and passion afterwards.

New Episode
Dr. Neal Barnard Puts Your Body In Balance

dr neal barnard is a guest on cancer-kicking powwow podcast

Conclusion

Many women unfortunately do not know that BRCA gene mutations exist and could affect them. Breast and ovarian cancers take lives every day – knowledge and action can help prevent the premature loss of those who love us, and whom we deeply love in return.

Like Angelina, I urge women who feel they might have reason to be at risk for a BRCA gene mutation – perhaps because of a strong family history of cancer – to seek medical advice and to take control of their futures.

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bj
bj
7 years ago

I thank Angelina with all my heart for sharing with the world her BRCA1 experience. Angelina, you have adopted children which is why I am sharing this with you. I was adopted at one year old. At 61 I got uterus cancer. I had a hysterectomy followed by radiation and brachytherapy. At 62 I had Kidney cancer and a kidney removed. From Jerusalem one Sunday morning my husband answered the phone and handed it to me telling me a biological cousin I had never met or knew of was calling to speak to me. She told me that I should get tested for the BRCA1 gene. She emailed me a horrific family cancer history. I did get tested and was found positive. I began to actively and frequently monitor my breasts. I developed a tumor, had a double mastectomy and chemo. The tumor was triple negative. I have children and grandchildren. Had I not received that phone call making me aware of my biological history I would never have been able to alert my children about the danger lurking in my and their genes. Had you not written your article and shared your experience, the danger and meaning of what I was telling my family would not have made the impact it needed to. You are brave, beautiful, intelligent, talented and generous.

Anuj Kumar
7 years ago

Very useful information. Thank you for sharing
it. Thanks 99th.in

Shana Olson
Shana Olson
8 years ago

These genes are information every woman’s body holds (possesses, if you will-). In our inspired system of capitalism (that has been catapulting human rights revolutions the world over-) can hypercapitalists, can WE do no better than copyright information outpricing the very women, single moms, this information could most help and deeply affect. My dream is to see Angelina Jolie (my political hero who has done more with her wealth and fame to assist women globally than any feminist I know) follow Sheryl Crow, but provide a foundation where smart women researching and wishing to act on information their bodies hold, may receive grants to do so, based on need, until our government wakes up. That the mostly men running our world wish to demolish the souls of women rather than create value for society in the way they practice capitalism- lets down the entire world through a lack of leadership. What if the bottom line (it’s one we draw anyway) meant a competition in society to solve problems and do good -as our very nation originally was shown to do by its founding? The world watches us as a nation, as it watches Jolie as a humanitarian. I have hope when women step up- Thank you, Angelina, for showing me a hero. And all the many who will continue to follow her- We will change this world.

Jacqueline Bastiaan
Jacqueline Bastiaan
8 years ago

I am 38 n I have had 8 weeks ago a double mastectom with instant reconstruction as i am a carrier of the BRCA2 Gene. I am from Holland and i am so flabbergasted to read here despite the fact families seems to be “infected” with brca n insurance does not cover tests. My mum had breastcancer (still lives) my grandma n aunts (2) died of it thus not a very good thing to see for my future. This operation and this desicion was best ever given to me! I knew i had a choice n i cd do something with this choice which was not always easy…. but where so many dont even know i did and eliminated almost 90% chance of breast cancer! I am not given eternal live but most def a longer life n am very gratefull for that!!

SAKET KUMAR
SAKET KUMAR
8 years ago

I really appreciate with such hard decision and sharing it with the world for the benefit of other women….. Hats Off Angelina…..

Isabela
Isabela
8 years ago

I am 24 and at age 23 I was diagnosed with breast cancer.I still have three months of fighting and then I will have a double mastectomy.What Angelina did and the fact that let the world know about it is great.It encourages women :). If I had known that I could get breast cancer at 23, I would have done BRCA testing and removed my D cup breasts in an instant.Be proactive, it is all worth it! 🙂

billy
billy
8 years ago

her new breasts are a bit lopsided.

Colleen Thompson
8 years ago

I am 34 and found a lump in my breast in Nov. 2012. The doctors saw nothing on the mammograms, ultrasounds and even an MRI, with contrast. All of the doctors insisted it was nothing and told me to come back in a few months if the lump grew. I had one nurse practitioner in my corner who fought to get a biopsy scheduled. I had invasive cancer throughout one of my breasts and my surgeon told me that most likely I’ve had it for 7-10 years. None of the doctors even knew how many tumors there were because the tissue in my breasts were so dense. I had a lymph node test and found out that the cancer was just starting to spread. I had a bilateral mastectomy in January and I have great insurance through my husband’s job and it did not cover one penny of the BRACA test. I charged a credit card the $3000 to have the test done. I have sisters and children and I needed to know. After surgery I was told that there were 3 large tumors and if they had known how large they were they would have given me chemo beforehand to shrink them. I too had the expanders placed immediately after surgery. I just completed radiation and my plastic surgeon tells me that I will not be finished with this ordeal until springtime of 2014. I will be paying off the credit card bill for the test for years. I had a cancer diagnosis and my insurance still wouldn’t cover any part of the BRACA test. To me that is disgusting. I do applaud Angelina for her decision but I’m sure that every woman with a will to live would do the same. Thank you for providing information for this very important issue.

Laura Robbins Callen
Laura Robbins Callen
8 years ago

I’m able to take the BRACA testing due to my strong family history of ovarian cancer, however, as Ms. Jolie states the price of the test is an obstacle for the average person. Insurance won’t pay for it (shock) so I won’t be having a preventative test to perhaps spare my insurance company (and myself) the expense and pain of cancer treatments. It makes no sense! If I were able to do it, I’d make the same choice as she, and have a total hysterectomy as well. I assume that’s next on her agenda after she’s well? Best wishes to her, and prayers for her full recovery.

Jenny Pelley
8 years ago

B – be brave
R – research
E – educate
A – accept
S – strength
T – tolerance

C – compassion
A – apathy
N – new normal
C – changes
E – emotion
R – recovery

Johanna
Johanna
8 years ago

I would like to thank Ms Angelina Jolie for her courage to share her story about BRCA-1 with the world. There’s a lot of judgement due to ignorance and now there’s attention in the media for this subject. I’m from the Netherlands and i’m 34 years old. About 5 years ago i have had a double mastectomy because of BRCA-1. I wish her all the best for her further recovery and strengh by making a decision about the ovaries. For me, at this moment, i have decided to do the check ups for the next few years before doing the surgery for the ovaries. Thank you Ms Angelina Jolie for telling your story, it really moved me.

Colleen
Colleen
8 years ago

Last year I was diagnosed with DCIS, and opted for bi lateral mastectomy. My genetic testing came back with no markers. I never even felt a lump, but 2 showed up on my mammogram. I never felt sick, I went through a 10 month police academy with cancer and never had a clue.
I was just entering a career in law enforcement , so not a topic to discuss with my male co-workers. When people hear cancer, they react like you have been handed a death sentence. That doesn’t have to be the case.
Six weeks post-op I started “bootcamp” type police training, I don’t recommend this, it is mentally and physically demanding , I even had one expander fail. I had to wait for 3 months with one boob until I could have my final implants placed. I had my final implants placed in August and I had 3d nipple/aerola tattoos in Dec. Into the new year with new boobs and no cancer.
The toughest decision I have ever had to make , but I’m glad I did. I had great support form my husband and my “brothers and sister” in uniform. I am fortunate to be here and meet some very couragous women who held my hand through my ups and downs.somi pay it forward every chance I can.
my mother died from stage 4 breast cancer, she was 54, she never saw me graduate from the police academy , never saw her grandchildren she let fear keep her from seeking medical attention whenshe fisrt felt a lump, she waited 3 years to tell her doctors. Fear keeps us from our future.
I’m glad to be here with my family everyday I’m aware of my blessing. My silver lining is this , I maybe 47 but my boobs are not yet a year old.

HalleG
HalleG
5 years ago
Reply to  Colleen

DX’d at 36 with IBC. I know this is an older post but I was BRACA 1 2 Neg. I am in the process of getting more genetic testing that was not available a few years ago. PTEN & lynch Syndrome are two other genetic tests that can be take if you have a family history of breast cancer or develop it early such as myself. The more you ask for in regards to tests, usually the more care you get. Don’t be afraid to speak up for yourself!

BORIS K'ZORIN
8 years ago

In the time of Breast Cancer Businesses /cutterpiller(s)/ activation the state (Employment Development
Department) still does nothing on its part, as to provide the deserved relief for and support BC-victims’ choice to be on track in real life … as much as possible.

Rhea Cote Robbins
8 years ago

I am a two-time breast cancer contender I call myself…27 years from the first surgery, and I credit my longevity to early detection. I also support the proactive surgeries. I find the disclosure by Ms. Jolie at the level of Betty Ford and other brave women who dare to address the taboos in our society. I wish her health and brava!

Candice
Candice
8 years ago

Don’t know where my original comment disappeared to but for all you critics, you have NO IDEA how it feels when every immediate family member female around you is faced with this. This seems to be the only option in prevention now. And for the organic fruit cake guy, I do all that, and there are still no guarantees. There is too much crap in the environment already to affect a change especially when you are predisposed.

Jennie Thibodeau
8 years ago

I was diagnosed on 3/11/13 with a 4cm tumor in my right breast. The cancer has also spread to my lymph nodes.

I did everything right – baseline mammogram at age 35, yearly mammograms starting at age 40, regular self exams. Because of my cystic breasts, my mammograms were switched to every six months, along with ultrasounds. With all this monitoring, I am the one who found my tumor. The mammo did not catch it, even with me pointing right to the spot and saying that something felt ‘different’.

So, now I’m 43yrs old – bald, sick from chemo and counting down the days until I can have my double mastectomy. I cannot wait for these breasts to be gone. They were trying to kill me. First, though, because of my lymph node involvement, my doctors are treating me with neoadjuvant chemotherapy. That’s fancy talk for chemo before surgery. I’ve just finished four rounds of AC chemo, which has completely kicked my ass. There are not adequate words to explain the exhaustion that I’ve experienced in the last seven weeks, to say nothing of the emotional toll it’s taken. Now I have 12 weeks of Taxol chemo to get through next before surgery is even an option. Once I finally do get to lop them off, I get to experience six weeks – at five treatments each week – of radiation therapy. Heal from that and then I can finally have reconstruction. And since nipple sparing isn’t an option for me, the final leg will be the tattooing of new nipples.

Anyone who thinks Angelina – or any woman – should have to wait for a cancer diagnosis before deciding to remove her breasts is either a fool or a sadist. At this point, mastectomies are the least of my worries. I’m just praying that the medicines, radiation and surgery will SAVE MY LIFE. No woman should have to go through what I am going through. Believe me, if I could go back to my 37th year and remove my breasts, I would do it in a heartbeat. I am the mommy of 7yr old twins – I would much rather be a breastless or silicone-breasted mommy to them for many long, long years to come than to try to keep my own murderous breasts.

So, to my soul sister Angelina, I say congrats and job well done. You are a brave, beautiful woman and now, you can look forward to being a brave, beautiful Grammy some day.

Tracy Strimling
8 years ago

Wishing you only the best Jennie. I had a similar experience, finding a lump 4 months before I was due for my yearly screening. A mammogram discovered an additional lump and I had lymph node involvement as well. I had my right breast removed prophylacticly (due to family history and aggressiveness of cancer) but saved the nipple. In your instance it may be unwarranted but it might be worth a discussion with your surgeon.

Best of luck to you as you navigate your road to good health.

Jennie Thibodeau
8 years ago

I was diagnosed on March 11th of this year with a 4cm tumor in my right breast. Cancer was also found in my lymph nodes. I did all of the ‘right’ things – a baseline mammo at age 35, regular self exams for years, yearly mammon that evolved to twice a year mammograms and ultrasounds…and I still got breast cancer. And my tumor, all 4cm of it, did not even show up on the mammogram. I found it myself, but not before it had spread to my lymph nodes. Now, I’m in a hellacious fight to save my life so I can watch my 7yr old twins grow up.

I am sitting here, 43 yrs old, bald as a baby, sick from chemo and anxiously awaiting my surgery to have my breasts removed. I cannot wait. My breasts have betrayed me (yes, that is what it feels like, people), and I will be relieved to see them go. Unfortunately, I have chemo to get through first (4 cycles just completed of AC, and I start 12 weeks of Taxol therapy on the 24th of this month). Once my chemo is complete, and my breasts removed, I then have six weeks of radiation (5 days a week) to look forward to before I can finally get new breasts. And hopefully at some point post-surgery, my hair will grow back, my mind-numbing chemo exhaustion will dissipate and I will start to feel ‘normal’ again.

Anyone who thinks what I’m going through is the preferable choice to preventative mastectomies is a fool or a sadist or a woman-hater. If someone offered me a time machine, I would gladly go back to my 37th year and remove my breasts.

So I say well done and congrats to Angelina for making a smart and brave choice. She, like myself, would rather be a mommy and grammie for many long years to come than walk around with ticking time bombs on her chest. Anyone who cannot understand or appreciate that, I say reserve your judgments until you yourself one day walk in our shoes.

Rock on, my soul sister!

AmericanFirst
8 years ago

My 2 sisters and I did not test positive for either BRAC 1 or 2, yet my two sisters at relatively the same age (51)were diagnosed with Estrogen Pos. Br. Cancer. The year I turned 51, I was diagnosed with LCIS. A diagnosis of LCIS is also considered high risk. My older sister lost her battle, my middle sister opted for a bilateral mastectomy. I am in the middle of the process of the skin saving mastectomy.

tina cunningham
tina cunningham
8 years ago

I had learned of genetic testing development from Kolman Cures organization. I have lost about 4 friends from breast cancer.

I am a Registered Nurse and am so happy to have seen such revolutionary women’s care as I recall when I first became a RN, the only conservative to the radical mastectomy to modified mastectomy and many of these women were very fortunate to live as they often had metastasis to many areas before they knew they had a problem.

You mentioned in your article that the US medical treatment is far advanced and many women “in middle, lower income in other countries” do not have access.

I am actually a RN that lost work due to government cuts and not employed at this time. The healthcare industry is intentionally not hiring new employees and especially RNs with experience because of more pay just to make profit before the Affordable Healthcare Reform Act is fully in place January 2014. I have no health insurance at all right now, and my occupation of RN is a field which has a serious international shortages.

I know of no insurance companies that would even consider your treatment regimen at all. One is lucky if you can get any medically advised care for women at higher risk for breast and ovarian cancer.
I speak for the US middle/low class citizens in the United States.

It is shamefully morally disgraceful that the United States of America, women will continue to die as the procedures you went through are not approved especially preventive with breast implants. They would consider implants as elective surgery.

I have premature cataracts in my eyes, and due to my being young, in order to get the best lens replacement that would suit my occupation and young age activities, I had to pay cash of just $3000 each eye (just for the medically recommended lens, not surgery, etc.). I lost my job and have had to put off getting my second dominant eye surgery done. Having no insurance, you will not get treatment at all.
When I did get the one eye surgery done, I had to prepay the + $3000 for the lens and the insurance company’s annual out of pocket expenses before they would even let me schedule the surgery. I literally was not able to drive, need my vision for my work as a RN; that means nothing to the insurance companies.

I would hope that Ms. Jolie, a wonderful spokesperson, would use her celebrity to remind women in the US that effective January 2014, they will have access to any level of insurance they need and can afford.

It is very important to do whatever spokes persons that can actually do advocate for the women in this United States. I recall all my friends, and their loss of life is totally due to inability to access preventive women’s healthcare..just the age old mammogram that is it. It is terrifying that ones long term life is being delegated by insurance companies blocking smart appropriate treatment.

I am so glad to have Ms. Jolie as a role model for healthcare awareness. It would be awesome if she can strongly advocate the same type care for women in the exact same situation in the US.

Tina C.

Carina Pinkston Piccinini

FYI regarding your comment that breast implants for reconstructive surgery is considered elective surgery. It is state law in Illinois that insurers provide coverage for reconstruction after mastectomy. I am unsure if that applies to prophylactic mastectomy and I also don’t know if it is a requirement in all states. As my plastic surgeon stated, there is no time restriction, and if I need a revision 20 years from now, insurance will cover it, given the current law in effect. I have heard anecdotal horror stories about HMOs, but mine has covered everything, including my BRCAnalysis and my prophylactic TVH-BSO. I’m not trying to be argumentative, but I just want to encourage women to do their due diligence when shopping for coverage, to understand what they are medically entitled to by law, and to be sure to follow all the requirements of the insurers for care.

Carina Pinkston Piccinini

I really wish people would respect decisions that women make with regards to breast cancer. It is a very personal decision that is never made lightly. It is very difficult for me to understand why some insist on saying she made the wrong decision. As someone with a BRCA2 mutation who was diagnosed with breast cancer last year at age 41, I can tell you she potentially avoided that awful waiting game from a sentinel node biopsy once diagnosed with breast cancer, additional surgeries, and chemotherapy by acting on her risk profile. I am scheduled to have my ovaries and uterus removed next week, although I don’t have cancer on those organs. I don’t really care what you think of me, but other women who read your criticisms of this actress and are faced with the same agonizing decision-making process may indeed be swayed by your self-righteous commentary. Respect the decisions we make in conjunction with our doctors’ recommendations. You are free to make a different decision without being criticized for it.

Sherry R
8 years ago

Did she get the surgery done for free in exchange for disclosing where the procedure was done?

Pat Goodman
Pat Goodman
8 years ago
Reply to  Sherry R

Women who develop cancer from BRCA mutations tend to do so prior to menopause, at which time the woman’s hormonal mileau tends to make treatment of breast cancer more difficult. Pre-menopausal breast cancers are typically more agressive forms of the disease. As to whether one is more likely to die when diagnosed at a younger age, the answer is yes. Having worked with breast cancer patients in the past, I’d be quite comfortable deciding to trade my breasts to prevent the possibility of the diagnosis. Ms. Jolie’s almost 9 out of 10 chance of developing breast cancer would certainly be high enough odds for me. The incredibly close surveillance (exams, mammograms, self exam, MRI’s ) required to catch it early enough would be like the sword of Damicles hanging over your life, and I worked with women who did live that way. My different choice would be to be relieved of all my breast tissue, including the nipples and skin covering. That would eliminate any chance of local development of the disease. Breast surgeons are likely in agreement that to leave skin and nipples is to leave microscopic breast tissue behind; I’d want to be sure there was none left if I were opting for the prophylactic mastectomy. But that said, I respect any woman’s choice to greatly improve her survival odds for her family. I wish Ms. Jolie all the very best.

USAisROME
USAisROME
8 years ago
Reply to  Sherry R

a better analogy…. would you rather:

– undertake this series of procedures when healthy and at low risk of complications, thus slashing your cancer risk to about 2%

or

– have a cloud hanging over you your entire life that there is a 80plus% chance of getting a life altering illness going through chemo / radiation / etc., having mastectomies when you are very ill with much higher risk, scaring the complete crap out of your kids and family, losing all your hair and having the threat of recurrence changing your life for good and running a net death risk of about 25%

the idea of waiting until you get cancer in this scenario is nuts…. once you have the cancer… you have about a net 25% death rate and your life is trashed…. why not take a slam dunk low risk procedure that is proven to cut your risk to much lower than the general population?

BFT
BFT
8 years ago
Reply to  Sherry R

Wow? She was sharing her story to enlighten people yet you say this of her? Do you even have conscience?

MJG
MJG
8 years ago
Reply to  Sherry R

Probably.

Martha Dye-Whealan
8 years ago
Reply to  Sherry R

Wow, I was just referring on FB to individuals who have made utterly offensive and insensitive comments since Angelina announced her procedure in the NY Times Op-Ed piece.
Did you actually read the above-sound pretty uncomfortable, huh-and then make this asinine comment?

Hilary Farlow
Hilary Farlow
8 years ago

This is a new non-invasive test that can detect as few as 10 pre-cancerous breast cells. By aspirating Ductal Fluid, Clarity ForeCYTE can predict cancer development for the next 5 years for the Patient. It’s like a Pap-Smear for the breast. This test could delay the Mastectomy procedure if results indicate no cancer cell presence. http://myforecyte.com/about.php

Andrea Renee Hall
8 years ago

This information should have came out in full instead of the way it unfolded, but now that it is come to light, it’s important to know that this is a small amount of women who carry this gene, and there isn’t much investment in history to rush towards this kind of radical surgery. Women are trying to save their natural breasts, not chop them off. That should be a last resort. I am more conservative in my views on this, but I wish her the best recovery, and hope that she is able to live happy life..

tina cunningham
tina cunningham
8 years ago

Easily said if you have no history in your family. I have seen many women of young age die because, first insurance companies criteria for old fashioned mammograms annual after 40 years old; secondly you cannot fight them to cover despite strong family history. In young, especially younger women/men breast cancer can rapidly metastasize rather quickly in the lymph system, the bones and the brain.

bakersdozen12
bakersdozen12
8 years ago

For those of you that have negative comments regarding Angelina’s decision, and the decision of others like her, here’s an analogy that I read today in the blog of someone who made the same decision: how many of you would be willing to put a gun that is 87% full of bullets to your head and then proceed to pull the trigger? Because that it what you are implying Angie should have did, that she should have just sat back and gambled with her life. She made a wise choice. Giving up your breasts is a small price to pay for saving your life. I would do the same in a heartbeat. I applaud Angelina for going public with this because it sends the message to women we are beautiful no matter what, even without our natural breasts and that there is nothing to be ashamed of if you are in the same situation as her.

Sherry R
8 years ago
Reply to  bakersdozen12

the analogy is flawed – simply being diagnosed with breast cancer is not a death sentence. That being said the Agnelina’s BRCA mutation is very series and although 87% can get breast cancer it would be helpful to know how many of those who do die from it?

Amy
Amy
8 years ago

This information is enormously helpful, and I want to thank Angelina for
her willingness to share. The technique you developed to mark the
sentinel node in an unaffected breasts is a fabulous advance. One of the
difficult decisions those of us with breast cancer and BRCA mutations
have to face is choosing between the risks of bilateral sentinel node
biopsies and the possibility of a complete lymph node dissection if
cancer is found on the prophylactic side. I hope this technique is made
widely available soon!

LaurieMann
8 years ago

Elizabeth William’s ignorance of genetics is astonishing, but, I suppose, not surprising.

Cynthia
Cynthia
8 years ago

Congratulations Dr. Funk and Dr.Jay!!!

Cynthia
Cynthia
8 years ago

So proud… Angelina you΂re a great woman, mother, wife and an example of life! women from Brazil thank you and send you lots of love!!

Cloverine
Cloverine
8 years ago

This has been an eye opener for me. I thank Ms. Jolie for stepping forward and allowing her story to be shared. I wish her and her family the best in all things.

TheresaQ
TheresaQ
8 years ago

Thank you Dr. Funk and Angelina Jolie for educating me these past few days. I have had 2 friends who have undergone preventative mastectomies and, to be honest, I questioned their choice as over-reactive. I will never make that mistake again. To bring a lifetime cancer risk down from 87% to 5% is not over-reactive, it is a damn good choice.

TheresaQ
TheresaQ
8 years ago

Thank you Dr. Funk and Angelina Jolie for educating me these past few days. I have known 2 women that have had preventative mastectomies and, to be honest, I questioned their choice as over-reactive. I will never make that mistake again. To see your lifetime cancer risk drop from 87% to 5% – that is not over-reactive, that is a damn good decision. All the best to both of you wonderful women.

Marcela A. Wanderley
8 years ago

Yeah, Angelina Jolie! Great recovery and root for everything to go right!

MMM
MMM
8 years ago

I am currently undergoing chemotherapy for breast cancer after double mastectomy with reconstruction. This announcement and subsequent information has made me feel better as I continue on my journey – thanks to Ms. Jolie and her doctors I don’t feel quite so alone.

Sarah
Sarah
8 years ago

I think it’s important to state the possible complications that can arise when making a decision of this magnitude. http://www.insertboobshere.com/still-boobless/

Granny Good-Food
8 years ago

Butcher! Did you ever ONCE check for IODINE sufficiency?

Rebecca Lane
Rebecca Lane
8 years ago

Name calling is never apprropriate! Please delete this comment.

Joyce Hersh
Joyce Hersh
8 years ago

Dear Dr. Funk:

Please convey my full support to Ms. Jolie. I’m a breast cancer survivor myself, and mine was scary enough without the BRCA1 gene.

The general public cannot really understand what it’s like to have to go through this kind of decision. One is truly staring death in the face, sizing up one’s odds, and making decisions on how to increase those odds. The only (remote) analogy I can think of is combat soldiers going out into the field.

I had a single mastectomy (with reconstructive implant after). I did consider getting both, just to further drop my chances, but I decided that the additional surgery was too drastic (it really IS hard!), given that I didn’t have the gene. Imagine my distress two years later to find that several cousins now have breast cancer! One has died from it, and two sisters were diagnosed on the same day! One cousin (the sister of the cousin that died) has since had a preventative double mastectomy. Further research into my family tree shows that the increased incidence likely came in through marriage, and doesn’t directly affect me. But it’s still scary.

I look back, and there’s not a single decision I would have made differently. You have to make decisions based on all of the information available to you at the time. No one else is living your life, and they therefore have no say in the matter.

Joyce

Christian Alber (Jesus Christ)
Christian Alber (Jesus Christ)
8 years ago

Dear Dr. Kristy Funk and team of Pink Lotus Breast Cancer: The work of removing the breasts or other body parts of women or men (with potential future) breast cancers or illnesses whatsoever is a clear proof for myself that you are not listening to God. Your work is satanic and is not saving lifes, but just the contrary. You are destroying and cutting here and there at the Body of Christ, if you so want.. Angelina Jollie is now ready for hell fire. This is, by the way, not my decision (but definitively has my co-approval), but that of our living God who is in control of this filthy, corrupt, little planet earth. I recommend you and your team here at Pink Lotus Breast Cancer to not recommend to patients anymore to undergo surgery but instead to pray and seek God with regard to what to do instead. You may recommend healthy natural products to your patients and to be faithful and hopeful, as I myself (for example) have to be as well. I am just telling you, take it serious what I am writing here, for the flames of everlasting hell fire will also come close to you one day.. And I will then be no more there for you, as I have been so far.. And if you need further advise, you may always contact me at christian[a.t]christian-alber dot com Please think about what I have written here, so that you may wake up one day before it is too late.. Thank you. Be blessed. Sincerely, Jesus Christ (Christian Alber), http://www.christ-alber.com

raven12
raven12
8 years ago

Christian, is almost time for your meds, skip the missed dose and go back to your regular dosing schedule.

Rebecca Lane
Rebecca Lane
8 years ago
Reply to  raven12

He sounds thought disordered. Likely a mental illness. Sad and treatable… Hopefully, he will get treatment.

Kathy Villanueva
8 years ago

You’re a kook, Christian Alber. There is only one true God, and Jesus, and you are not He. Praying you get the mental help you need. Angelina and her doctor are doing so much help for women by going public with this story.

Gayla Joe-Huckaby
8 years ago

Great information.. I love Angie for letting us know and thank you Dr. Funk for relaying this information! We really need the medical community to come together to help the everyday women.

Louise
Louise
8 years ago

Thank you Dr Funk and Ms Jolie…you are a complete inspiration

Joi Morris
8 years ago

Thank you Dr. Funk for being such a great resource for our high risk community.

Phoenix8
Phoenix8
8 years ago

An incredibly brave and courageous story. But it’s not just a story, it’s about a woman’s life and the choices she makes for herself. I have been impressed with Angelina Jolie for many years, she is a beautiful person inside and out. She makes an invaluable gift to all women by sharing her very personal story. It demonstrates what a conscious and caring human being she is. Amazing.

Glenda VR
Glenda VR
8 years ago

Thank you to Angelina Jolie for the brave decisions both to take control of her body and health, and also to share this journey. As a 10 year breast cancer survivor and Registered Nurse, I greatly respect the way in which this most sensitive and personal experience has been communicated. I believe this is an important milestone in raising awareness of BRCA testing, preventative and treatment options, and the empowerment of women.

Carolina Stella
Carolina Stella
8 years ago

Congratulations Angelina, an attitude very brave

Kim
Kim
8 years ago

Tee jay is right this is just wrong and if it was a man they would never tell him to cut off his balls so they don’t get cancer you people are so uninformed. Caner can be cured and has for years it is the big pharmaceuticals and the For profit cancer industries that make billions every year off of people that are scared by them and the Dr that benefit from then that don’t want you to know . Do some research don’t just listen to the DR that is paid by big pharmaceuticals watch (the forbidden cure)!! Then you may start to understand how it really works!

This is just sickening that a so called Dr would mutilate a perfectly healthy women!

Guest
Guest
8 years ago
Reply to  Kim

I’m not entirely sure how you think the big pharma companies benefit from surgical treatment (surely if they were playing one big money making game, the prescription would be a daily, life-long, expensive, medication?). You really show little understanding of how medical treatments come into use – do you realise the years of data, trials and regulations that are involved here?

And what are you accusing the doctor of here? Being a shameless con artist or an abusive misogynist? I don’t know what stage the gene testing for testicular cancer is at but I have no doubt that removal ought to be an option available to verifiable high-risk patients.

I sincerely hope neither one of you ever get seriously ill. Or if you do, that you have someone in your life who is smart and rational enough to lead you toward accepted effective treatment – and away from conspiracy theories. Even more so, I hope that you never get the chance to voice your venomous, incoherent ramblings in the face of someone who is dying, or to someone who has lost someone to this so called “curable” disease.

Rob
Rob
8 years ago

Please redraft this post using generic names for medicines (=best practice) – or do you have a commercial relationship with these brands? Some of these therapies sound dubious, e.g. “Eliminating anesthesia” – please provide links to evidence. Thank you.

Kelly Gross
8 years ago
Reply to  Rob

usually one gets the generic brand of these meds but they are prescribed the name brand. It is your insurance that says for the pharmacy to fill or the hospital to give the generic first if it is available.

William Avery Hudson
8 years ago

On top of everything else, Angelina Jolie turns out to be a first-class health communicator. Her NYT Op-Ed blew me away. A masterpiece of clear, concise, and empathetic patient education. I only wish the media reports were nearly as good as Angelina’s article. All I can do is promote her original article to all my lists.

LaurieMann
8 years ago

I also think “A Patient’s Journey” is very detailed and clear. One great thing about medical blogging has been the increased amount of clear writing about medical issues.

Ineavelle Middleton
8 years ago

Bravo Angelina!!! I knew Angelina was beautiful on the outside but also beautiful on the inside. What an inspiration! Great to see someone like her do this, I’ve been there! Thank you Angelina!

aindreas
aindreas
8 years ago

Beautiful act

Mina
Mina
8 years ago

To Elizabeth Williams, so you are so obsessed with the past that you don’t realise that happened when she was a teen, and has NO baring on such a SENSIBLE DECISION now? Angelina was wild, but she did not have psychological problems. She was never diagnosed with anything, a short period of being wild (tame in Hollywood standards) does not equal ‘psychological problems’. It seems you are so full of hate and so judgmental that you are stuck in the past and cannot move on. Neither her wild phase or her short-lived ‘cutting’ mean DECADES LATER she isn’t stable and able to make a sound and rational decision. This is a woman that is so stable and of sound mind she is a SPECIAL ENVOY and is respected by Nelson Mandela. She has come a LONG WAY and is NOT the same person she was in her YOUTH. How about you do some GROWING yourself, because YOU seem very unstable and emotionally stunted. I’d back her mental and psychological stability over a mentally stagnated backward narrow-minded person like you. I think you need help.

Charmaine Kok
8 years ago
Reply to  Mina

Our experiences in the past do not necessarily define who we are as a person in the present or future. Having children completely changes your perspective of life and you do find yourself making decisions for their best interests and the best interest of your family as a whole. The loss of a mother is never something a child should have to face prematurely, I therefore commend Angelina for taking the necessary steps in ensuring a long life with her children, her family.

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