Dr Judith Guedalia

I've Got To Hand It To You": Pre-Operative Intervention from a Neuropsychologist's Journal
A recent article in the Journal of Medical Genetics brought Leah (not her real name) to mind.  Though it was almost eight years ago, I remember it as if it were yesterday. 
            It was late afternoon on a Thursday.  The Neuropsychology Unit I head is in the same quadrant of the hospital as the Pre-Operative Clinic.  As Friday is the "Sunday morning" of Israel, elective or scheduled surgeries do not take place on Friday mornings, so by early Thursday afternoon the Pre-Operative Clinic is empty. 

            I had a 4 o'clock appointment with a woman who was referred to me by the Genetics Department.  From what I had read in the consultant's request (filled out by the geneticist with the patient's approval) her mother, aunt and sister had died of breast cancer.  She and another sister had been found to have the BRCA-1 mutation.  This sister lived abroad and was in the process of having prophylactic treatment to avoid being a BRCA-1 statistic.  A third sister had been tested and found free of the genetic mutation.


Some background information about BRCA1 or BRCA2:
Women with BRCA1 or BRCA2 mutations have a very high risk of developing breast and ovarian cancer - possibly as high as 70%.  
            Women with the mutation have options to reduce their risk of cancer including prophylactic mastectomy, prophylactic salpingo-oophorectomy (removal of ovaries) and chemo-prevention.
Prophylactic salpingo-oophorectomy offers both a breast cancer and ovarian
cancer risk reduction. As a matter of fact, prophylactic salpingo-oophorectomy is associated with an almost 50% reduction in risk of breast cancer.   However, there are side effects associated with the surgery that need to be considered.
In a July 2001 article Decision-Making Regarding Prophylactic Mastectomy and Oophorectomy in Ashkenazi Jewish Women Seeking Genetic Testing for BRCA1/BRCA2 Mutations** it was reported that "among women of Ashkenazi Jewish (Eastern European) descent, carriers of one of the three most common BRACA1/2 mutations have a 40-73% chance of breast cancer by the age of 70 and a 6-28% chance of ovarian cancer. Few options exist for primary prevention of these cancers other than prophylactic surgical removal of noncancerous organs in order to prevent occurrence of the disease. The primary aim of the study is to describe the levels of intention to undergo prophylactic mastectomy and/or oophorectomy among Ashkenazi Jewish women seeking genetic testing for inherited founder BRACA1 and BRCA2 mutations, and to identify factors that influence decision-making about prophylactic surgery. To achieve these aims, 611 women undergoing genetic counseling and testing for inherited breast ovarian cancer risk will be assessed before their first genetic counseling session and three times in the year following notification of their genetic test results. Major accomplishments during the past year include establishing collaboration with parent study, completing all pre-recruitment tasks, and publishing a peer-reviewed article and abstracts related to the study." The results of recent research of a large international study of BRCA1 and BRCA2 mutation carriers by Eisen et al., age at oophorectomy was found to be associated with breast cancer risk reduction.  Women who underwent oophorectomy before the age of 40 years gained the greatest breast cancer risk reduction of 67%.  Having the preventive surgery between the ages of 41 and 50 years also offered a significant breast cancer risk reduction; having the surgery after the age of 50 years did not significantly reduce a woman's breast cancer risk. Back To The Meeting With Leah:
            Leah started out by saying that I should not be insulted but she only had half an hour to speak with me, she did not feel she needed any help, her mind was made up, she was having the surgery.
            Ok, why don't you start at the end. I usually say this to new patients.  Starting at the beginning is what they expect to be asked and I like to shake up the "homeostasis" so that the response I get is not something they have rehearsed or told many times to a bunch of professionals.
            Here was a woman in her forties, a mother of teen children, who was prepared to be operated on, have a double mastectomy and oophorectomy.   She elected to have re-constructive surgery at the same time.  She had done her homework and knew that this was going to be a long operation and recovery.  She was prepared.  She didn't understand why the geneticist thought she needed to see a psychologist at all.
            I agreed.  You're right it's a done deal.  Maybe your doctor should have come instead.  She might have issues with being the cause of your decision to break what is healthy now and then fix what wasn't broken!
            She looked at me askance.  "You really think it could be her problem?"
            I nodded.
            "Well it certainly isn't her fault!   My sister, mother and aunt dying of breast cancer wasn't their fault.  Once my sister was tested and found out that she was genetically predestined to get IT, her dying wish was that no more of us should die of breast or ovarian cancer, we should DO something.  I'm FINE with this decision, I haven't told my kids as I don't want to lay it on them and there is nothing they can do until many years hence if they do have the gene.  You should just know my husband is FINE with the decision too."
            There was something in how she said 'FINE', it was in her tone of voice giving me the perception that she was saying this through clenched teeth.
            I'm going to ask you a strange question.  Do you have a picture of your family with you?  Do you have a separate picture of your husband?
            "Not such a strange question, I do have both".
            You have a lovely family, may you have a lot of nachatfrom them, but I haven't asked my strange question yet.  Ok, I say taking a deep breath, here comes the strange question:  What part of your husband do you love the most?
            (I was not quite sure where I was going with this; her answer would predicate my next step.)
            "You're right, that is a strange question, but the answer is quite easy for me, his hands.  From the minute I met him I have loved his hands."
            Are you familiar with a computer program called PhotoShop® or something like that?
            "Yes, that is the program that you can take pictures and 'fool around with them' isn't it."
            Okay, looking at your husband's pictures here, I would like you to visualize him clearly in your mind, especially his hands.  Ok?
            She nods.
Ok, now Photoshop his hands to his shoulders.  
            She looks at me askance, a bit horrified, but as she closes her eyes, a small smile appears on her lips.
            Ok, now move his hands to where his ears are; take a few seconds and "re-attach" his hands to his knees.  Ok, now his elbows.
            Smiling, with her eyes closed she said: "You have NO idea where I'm moving them now, and I'm not telling you!!"
            I let a few minutes go by.  Then I say: Do you love him any less?  Look into his eyes, how does he look?
Leah looks at me hard.  She is smiling now with a kind of  "I can't believe this whole thing" look.
            "Just FINE!!"  Laughing now she gets up from her chair, shakes my hand and as she holds the door open she says: "You know, I thought I was completely calm with my decision to do the surgery, and in a big way I was.  As I said to you in the beginning of our meeting I didn't think I needed to speak to a psychologist at all."  Smiling she said, "I have to hand it to you, though, you helped me a lot, thank you for that."

            I smile gratefully and say: B'Hatzlacha!


            P.S. Its eight years later and Leah is FINE.


      Risk reducing mastectomy: outcomes in 10 European centres Published Online        
  First: 7 November 2008. doi:10.1136.jmg.2008.062232
Journal of Medical Genetics 2009;46:254-258 Copyright © 2009 by the BMJ Publishing Group Ltd.Oophorectomy for Breast Cancer Prevention in Women With BRCA1/-2 Mutations:Prophylactic Salpingo-oophorectomy
     ScienceDirect - Journal of Plastic, Reconstructive & Aesthetic Surgery : Patient satisfaction with aesthetic outcome after bilateral prophylactic mastectomy and immediate reconstruction with implants <http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7XNJ-4V4M331-5&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&_docanchor=&view=c&_rerunOrigin=scholar.google&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=cf52023d843acdc8e910cb23ed8fecac>



Dr. Judith Guedalia Director, Neuropsychology Unit; Senior Medical Psychologist; Shaare Zedek Medical Center; Licensed Psychologist; Supervisor and Specialist in Medical, Rehabilitation, and Developmental Psychology; EMDR Certified Practitioner: Supervisor- Level 1; Co-Chair Nefesh Israel. Dr. Guedalia can be reached through her website: www.drjudithguedalia.com