Preventive Mastectomy

Suze---I was diagnosed with LCIS 4 years ago this week, so I can empathize with the stress you're going thru. There still is a controversy in the medical community whether or not LCIS is truly a cancer or just  a marker of higher risk; there are recent studies out that say it may actually be a precursor of invasive disease. I choose to be very closely monitored by BSEs, CBEs, mammos, MRIs, and I take tamoxifen, so that if anything ever develops, hopefully it will be found very early when it's more easily treated. I deal with living with high risk pretty well on a day to day basis, but test time does still produce fear and anxiety. (MRI coming up on Tues).  I'm not considering any prophalactic mastectomies at this point, but if any invasive bc were found, I definitely would choose bilateral mastectomies for symmetry and peace of mind. But it does remain a very personal decision, one we each have to make for ourselves.

Hi here Suze. I am so sorry you are going through this stress. I remember how stressed out I was when I was diagnosed. (I still feel stressed.)



I have LCIS (and ALH), diagnosed in Jan 06, and I started tamoxifen July 2006.



There aren't many studies about LCIS because it is so uncommon.



Prophylactic mastectomy used to be the common treatment for LCIS, up until, say, the 1990s(?) . When they found many women with invasive breast cancer can survive as well as women who had bilateral mastectomies, many breast surgeons became reluctant to do bilateral mastectomies for women with LCIS.



This is the website for healthcare providers for LCIS on the NCI website http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6



I think that most women with LCIS and nothing else opt for careful screening. Fewer women opt for tamoxifen, and even fewer opt for bilateral mastectomies (I think very, very few - especially if they do not also have a BRCA mutation.)



Mastectomies are a very drastic step, and LCIS patients without a family history probably have a lower risk of breast cancer than do women who carry a BRCA gene mutation.



I, for one, am considering them, but I have a long ways to go to say I am ready for that.



In this study, about 42% of the high risk women chose tamoxifen. http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=15112259&ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum



This paper may give you a bit of perspective on LCIS. http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=11348305&ordinalpos=15&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum



I think that everyone should consider all of one's options. But what the majority of LCIS patients do may or may not be appropriate for you. It is a very personal decision, and you will make the right choice for you.

Suze--I PM'd you, but I don't know if it went thru.  I was diagnosed with LCIS 4 years ago by suspicious microcalcifications on mammo and I have been taking tamoxifen ever since.  I'm also very closely monitored by mammos alternating every 6 months with MRI (just got home from my MRI today, now the waiting begins..) as my risk is further elevated by family history. My surgeon said if the LCIS was found to be more widespread (in 2 or more areas not close together), mastectomy would have been the recommendation.  Fortunately, mine was only in one area, so I had lumpectomy. Right now, I'm not considering prophalactic mastectomies, but I would definitely have it done if any invasive bc were to ever show up.

My mom has been diagnosed with Atypical Hyperplasia.  She is in her mid 40s and has 2 of 4 sisters diagnosed with bc, one with inflammatory bc. Her breast specialist advised she may or may not ever develop actual cancer, but her risk is extremely high.  Her GYN has recommended a double mastectomy to avoid "the inevitable". We'd like to research more.  I am the oldest daughter and have already had a benign tumor removed and been diagnosed with fibrocystic breasts.  I'd like to talk to you about your decision and sites you used for your research.  It's much appreciated.

My Grandmother died at the age of 48 with bc, also an Aunt who had bc but lived until she was in her 80's I had a masectomy in 1991 I had reconstruction in 2000,then last year found another lump in my pec muscle. My daughter wanted me to be tested and there was a alteration which was not known at the time (2003) 4yrs on I have been told that I am a carrier of an alteration in the BRCA2 gene. My daughter is to be tested on the 15th October to see if she carries it.

There is a lot of decisions to be made by myself when I go to the clinic, do I have a mascetomy on the left breast and my Ovaries removed which I do not need anyway as I am 65yrs of age, the problem will be the reconstruction breast as it is on that side where the cancer is in my pec muscle. My worry is that I could open a can of worms so to speak. My daughter is set on preventative surgery should she be a carrier,she is 44yrs.

I now have the task of informing all my family as they could have inherited  it.I come from a large family.

Any thoughts?

How does your doc ge.t insurance to pay for a breast MRI every year?  My dr. doesnt think he can get the insurance to pay for one every year.

I'm 40 years old and I am currently waiting for results for my BRAC testing. Last week I had a lumpectomy. Pathology reports showed atypical lobular hyperplasia. I am now taking Tomoxefin daily and under surveillance. If my BRAC results are positive I am considering a bilatteral mastecomy with reconstruction. Is there anyone out there who had this done and regrets it?

stangmary-----I was diagnosed with LCIS (a step further along the bc spectrum with double the risk of ALH) 4 years ago.  I had a lumpectomy, take tamoxifen and am very closely monitored by mammos alternating with MRIs every 6 months.  For now, I am doing fine living with the high risk (also have family history), but while it is comforting to be watched so closely, it is stressful as well.  The decision to have BPMs is a very difficult and personal one; as someone else said, it is really about how much risk you can live with.  I know that I may be facing  that surgery someday, I'm just not ready to consider having it done unless absoutely necessary.

If you look at studies, there *are* women who have regretted having PBMs. My cousin said she knows a woman who did.

As you can imagine, there will always be people who make a big decision who have some regrets. (Like house buyer's remorse..)

However, in these studies, it looks like the majority, often the vast majority, were satisfied. It is very important that you look at the risks and benefits, as in any decision. It is a very personal decision.






Here are some studies you may find interesting...

1: J Plast Reconstr Aesthet Surg. 2007 Oct 13; [Epub ahead of print] Links

Aesthetic outcome, patient satisfaction, and health-related quality of life in women at high risk undergoing prophylactic mastectomy and immediate breast reconstruction.





Isern AE, Tengrup I, Loman N, Olsson H, Ringberg A.





Department of Plastic Surgery, Malmö University Hospital, Malmö, Sweden.





Prophylactic mastectomy is an effective risk-reducing option in women with hereditary increased risk of breast cancer. It may be combined with immediate reconstruction, with the intention of improving aesthetic outcome and health-related quality of life. Sixty-one women underwent prophylactic mastectomy and immediate breast reconstruction in Malmö, Sweden, between 1995 and 2003. Forty women underwent bilateral prophylactic mastectomy and immediate reconstruction. Ten of these had a previous breast cancer diagnosis. Twenty-one women underwent contralateral prophylactic mastectomy and immediate reconstruction after a previous breast cancer. Fifty-four of the women (89%) were evaluated clinically for aesthetic results and complications. Patient satisfaction and quality of life were evaluated with one study-specific and two standardised health-related questionnaires administered at time of clinical follow-up. Median follow-up time was 42 months (range 7-99 months). The position of the reconstructed breasts was judged as satisfactory in 77% of breasts. Symmetry in relation to the midline was adequate in 89% of breasts. A capsular contracture grade III according to Baker and indentation tonometry was observed in 1% of breasts (1/104). The complication rate was 18% (7% early and 11% late). Secondary corrections were carried out in 11% of breasts. The study-specific questionnaire revealed a high degree of satisfaction. No woman regretted the procedure, and all women would have chosen the same type of surgery again. An age-stratified comparison of Swedish women using the Short Form 36 Health Survey Questionnaire (SF-36) questionnaire was carried out for this study. The study population scores were high, suggesting that prophylactic mastectomy and immediate reconstruction on both physical and psychological issues in this retrospective study had no negative effect. Also, the Hospital Anxiety and Depression Scale (HAD) questionnaire did not suggest any increased anxiety or depression among the patients. Prophylactic mastectomy and immediate breast reconstruction in women at risk of hereditary breast cancer may be carried out with a satisfactory aesthetic outcome and an acceptable rate of complications comparable to those in other studies, and does not in itself seem to be associated with a decreased quality of life.





PMID: 17938010 [PubMed - as supplied by publisher]





This study looked at what women wish they knew before PBMs:

1: Cancer Nurs. 2007 Jul-Aug;30(4):285-91; quiz 292-3. Links

What women wish they knew before prophylactic mastectomy.





Rolnick SJ, Altschuler A, Nekhlyudov L, Elmore JG, Greene SM, Harris EL, Herrinton LJ, Barton MB, Geiger AM, Fletcher SW.





HealthPartners Research Foundation, Minneapolis, MN 55440-1524, USA. Cheri.J.Rolnick@healthpartners.com





Although prophylactic mastectomy significantly reduces the incidence and recurrence of breast cancer, little is known about women's information needs before the procedure. We surveyed 967 women, from 6 healthcare systems, with bilateral or contralateral prophylactic mastectomy performed between 1979 and 1999. There were 2 open-ended questions: "What one thing do you wish you had known before your prophylactic mastectomy" and "Is there anything else you would like to share with us?" Three researchers categorized responses, and informational needs were ascertained. Seventy-one percent (684 women) responded, of which 81% answered one or both open-ended questions. There were 386 comments (made by 293 women) that related to information needs; 79% of women had bilateral prophylactic mastectomy and 58% had contralateral prophylactic mastectomy. Most concerns (69%) were related to reconstruction: the longevity; look and feel of implants, pain, numbness, scarring, and reconstruction options. Many women wished they had seen photographs to better prepare them for the final result. Our findings suggest that information needs of many women undergoing prophylactic mastectomy, particularly those selecting bilateral prophylactic mastectomy, have not been sufficiently addressed. Clinicians and health educators should be aware of patient needs and must counsel women accordingly.

PMID: 17666977 [PubMed - indexed for MEDLINE]





1: Cochrane Database Syst Rev. 2004 Oct 18;(4):CD002748. Links

Prophylactic mastectomy for the prevention of breast cancer.



Lostumbo L, Carbine N, Wallace J, Ezzo J.

NBCC, 10615 Great Arbor Dr, Potomac, Maryland, USA, 20854. lostumbo@comcast.net

BACKGROUND: Breast cancer is the most common cancer and the second most common cause of cancer-related death among North American and Western European women. Recent progress in understanding the genetic basis of breast cancer, along with rising incidence rates, have resulted in increased interest in prophylactic mastectomy as a method of preventing breast cancer, particularly in those with familial susceptibility. OBJECTIVES: The primary objective was to determine whether prophylactic mastectomy reduces death from any cause in women who have never had breast cancer and in women who have a history of breast cancer in one breast. The secondary objective was to examine the effect of prophylactic mastectomy on other endpoints including breast cancer incidence, breast cancer mortality, disease-free survival, physical morbidity, and psychosocial outcomes. SEARCH STRATEGY: Electronic searches were performed in the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE, Cancerlit, and the Science Citation Index. SELECTION CRITERIA: Inclusion criteria were studies in English of any design type including randomized or nonrandomized controlled trials, cohort studies, case-control studies, and case series with at least ten participants. Participants included women at risk for breast cancer in at least one breast. Interventions included all types of mastectomy performed for the purpose of preventing breast cancer, including subcutaneous mastectomy, total or simple mastectomy, modified radical mastectomy, and radical mastectomy. DATA COLLECTION AND ANALYSIS: Information on patients, interventions, methods, and results were extracted by at least two independent reviewers. Methodological quality was assessed based on how well each study minimized potential selection bias, performance bias, detection bias, and attrition bias. Data for each study were summarized descriptively; quantitative meta-analysis was not feasible due to heterogeneity of study designs and insufficient reporting. Data were analyzed separately for bilateral prophylactic mastectomy (BPM) and contralateral prophylactic mastectomy (CPM). MAIN RESULTS: Twenty-three studies, including more than 4,000 patients, met inclusion criteria. No randomized or nonrandomized controlled trials were found. Most studies were either case series or cohort studies. All studies had methodological limitations, with the most common source of potential bias being systematic differences between the intervention and comparison groups that could potentially be associated with a particular outcome. Thirteen studies assessed the effectiveness of BPM. No study assessed all-cause mortality after BPM. All studies reporting on incidence of breast cancer and disease-specific mortality reported reductions after BPM. Nine studies assessed psychosocial measures; most reported high levels of satisfaction with the decision to have prophylactic mastectomy (PM) but more variable satisfaction with cosmetic results. Only one study assessed satisfaction with the psychological support provided by healthcare personnel during risk counseling and showed that more women were dissatisfied than satisfied with the support they received in the healthcare setting. Worry over breast cancer was significantly reduced after BPM when compared both to baseline worry levels and to the groups who opted for surveillance rather than BPM. Three studies reported body image/feelings of femininity outcomes, and all reported that a substantial minority (about 20%) reported BPM had adverse effects on those domains. Six studies assessed contralateral prophylactic mastectomy. Studies consistently reported reductions in contralateral incidence of breast cancer but were inconsistent about improvements in disease-specific survival. Only one study attempted to control for multiple differences between intervention groups, and this study showed no overall survival advantage for CPM at 15 years. Two case series were exclusively focused on adverse events from prophylactic mastectomy with reconstruction, and both reported rates of unanticipated re-operations from 30% to 49%. REVIEWERS' CONCLUSIONS: While published observational studies demonstrated that BPM was effective in reducing both the incidence of, and death from, breast cancer, more rigorous prospective studies (ideally randomized trials) are needed. The studies need to be of sufficient duration and make better attempts to control for selection biases to arrive at better estimates of risk reduction. The state of the science is far from exact in predicting who will get or who will die from breast cancer. By one estimate, most of the women deemed high risk by family history (but not necessarily BRCA 1 or 2 mutation carriers) who underwent these procedures would not have died from breast cancer, even without prophylactic surgery. Therefore, women need to understand that this procedure should be considered only among those at very high risk of the disease.For women who had already been diagnosed with a primary tumor, the data were particularly lacking for indications for contralateral prophylactic mastectomy. While it appeared that contralateral mastectomy may reduce the incidence of cancer in the contralateral breast, there was insufficient evidence about whether, and for whom, CPM actually improved survival.Physical morbidity is not uncommon following PM, and many women underwent unanticipated re-operations (usually due to problems with reconstruction); however, these data need to be updated to reflect changes in surgical procedures and reconstruction.Regarding psychosocial outcomes, women generally reported satisfaction with their decisions to have PM but reported satisfaction less consistently for cosmetic outcomes, with diminished satisfaction often due to surgical complications. Therefore, physical morbidity and post-operative surgical complications were areas that should be considered when deciding about PM. With regard to emotional well-being, most women recovered well postoperatively, reporting reduced cancer worry and showing reduced psychological morbidity from their baseline measures; exceptions also have been noted. Of the psychosocial outcomes measured, body image and feelings of femininity were the most adversely affected.

PMID: 15495033 [PubMed - indexed for MEDLINE]





1: Ann Surg Oncol. 2007 Feb;14(2):686-94. Epub 2006 Nov 11. Links

Quality of life after bilateral prophylactic mastectomy.



Geiger AM, Nekhlyudov L, Herrinton LJ, Rolnick SJ, Greene SM, West CN, Harris EL, Elmore JG, Altschuler A, Liu IL, Fletcher SW, Emmons KM.





Research and Evaluation Department, Kaiser Permanente Southern California, Pasadena, California 91188, USA. ageiger@wfubmc.edu

BACKGROUND: Bilateral prophylactic mastectomy in women with increased breast cancer risk dramatically reduces breast cancer occurrence but little is known about psychosocial outcomes. METHODS: To examine long-term quality of life after bilateral prophylactic mastectomy, we mailed surveys to 195 women who had the procedure from 1979 to 1999 and to a random sample of 117 women at increased breast cancer risk who did not have the procedure. Measures were modeled on or drawn directly from validated instruments designed to assess quality of life, body image, sexuality, breast cancer concerns, depression, health perception, and demographic characteristics. We used logistic regression to examine associations between quality of life and other domains. RESULTS: The response rate was 58%, with 106 women with and 62 women without prophylactic mastectomy returning complete surveys. Among women who underwent bilateral prophylactic mastectomy, 84% were satisfied with their decision to have the procedure; 61% reported high contentment with quality of life compared with an identical 61% of women who did not have the procedure (P = 1.0). Among all subjects, diminished contentment with quality of life was not associated with bilateral prophylactic mastectomy but with dissatisfaction with sex life (adjusted ratio [OR] = 2.5, 95% confidence interval [CI] = 1.0-6.2), possible depression (CES-D > 16, OR = 4.9, CI = 2.0-11.8), and poor or fair general health perception (OR = 8.3, 95% CI = 2.4-29.0). CONCLUSIONS: The majority of women reported satisfaction with bilateral prophylactic mastectomy and experienced psychosocial outcomes similar to women with similarly elevated breast cancer risk who did not undergo prophylactic mastectomy. Bilateral prophylactic mastectomy appears to neither positively nor negatively impact long-term psychosocial outcomes.

PMID: 17103066 [PubMed - indexed for MEDLINE]





1: Plast Reconstr Surg. 2004 Aug;114(2):360-6. Links





Satisfaction with breast reconstruction in women with bilateral prophylactic mastectomy: a descriptive study.





Metcalfe KA, Semple JL, Narod SA.

Faculty of Nursing, University of Toronto, Ontario, Canada. kelly.metcalfe@utoronto.ca

Prophylactic bilateral mastectomy is an option for women who are at an increased risk of developing breast cancer. Prophylactic mastectomy is often performed with immediate reconstruction (i.e., at the same time and under the same anesthetic as the mastectomy). Satisfaction with reconstruction has been described previously for women with mastectomy for breast cancer. However, the authors know of no previous research that has reported on satisfaction with reconstruction in patients who have electively sought mastectomy for the prevention of breast cancer. Women in the province of Ontario who had undergone prophylactic bilateral mastectomy plus breast reconstruction between 1991 and 2000 were asked to rate their level of satisfaction with the cosmetic results of their mastectomy and reconstruction and their overall satisfaction with their decision to have prophylactic mastectomy. Women were also asked whether they experienced complications associated with their surgery and what types of complications they experienced. Thirty-seven women completed questionnaires for this study, and all of them had immediate breast reconstruction after prophylactic mastectomy. The majority of women (70.3 percent) reported being satisfied or extremely satisfied with the cosmetic results of their breast reconstruction. Women with self-reported postsurgical complications (16.2 percent) were significantly less satisfied with reconstruction than those who did not report complications (p = 0.009). Personal subjective risk of breast cancer before prophylactic mastectomy was negatively correlated with satisfaction with reconstruction (r = -0.38, p = 0.024) and with subjective risk estimation after prophylactic surgery (r = -0.54, p = 0.001). Women who did not worry about developing breast cancer after prophylactic mastectomy had significantly higher levels of satisfaction with breast reconstruction than those who continued to worry (p < 0.001). Women who reported an improved body image after reconstruction were significantly more likely to report higher levels of satisfaction than those who reported a diminished body image (p = 0.007). The majority of women were satisfied with the cosmetic results of breast reconstruction after prophylactic mastectomy. Women who overestimated their breast cancer risk had lower satisfaction levels. Correcting overestimation of breast cancer risk in women who have prophylactic mastectomy may improve satisfaction with reconstruction following prophylactic mastectomy.





PMID: 15277800 [PubMed - indexed for MEDLINE]

I had a lumpectomy, the only thing I don't like about it, it you might have to have another surgery to get clear margins. Then you start rads or chemo, depending on your cancer. It is a personal choice, I do feel better that I have my breast. These days doctors are saving breast through this procedure. I hope in the end it will be worth it. Good Luck on your decision.

Leaf, have you experienced any side effects from the Tomoxifen?

I am 54, and still premenopausal, so its difficult to tell if my 'side effects' from tamoxifen are from tamoxifen or if they are because I am going through menopause or because of my pre-existing irregular menstrual bleeding.



I suspect my mild hot flashes are due to tamoxifen only because they didn't start until about 1.5 months after I started tamoxifen. I find them at most irritating, and wear layers. I have multiple other reasons to have an irregular body/hand temperature.



I started having irregular menstrual bleeding in my mid-30s, so that has been an on-going problem for several decades.



For me, so far, tamoxifen has been quite tolerable.



Everyone is different. I have read some women here have *zip, nada* side effects from tamoxifen; for others it makes them so miserable their quality of life goes down the drain.



I am almost sure they have not studied the use of tamoxifen in high risk women (in other words, followed high risk women after taking tamoxifen for 5 years) for more than about 10 yrs, about when the first NSABP study came out that compared tamoxifen with placebo in high risk women.



The tamoxifen package insert points out it is unknown if over the long term if tamoxifen just decreases the number of breast cancers, or if it merely delays their onset. I do not know the date of the package insert ( I can find no date on it) but am guessing it to be from about 2003.



This insert also opines that it is not known if tamoxifen will help BRCA women.

This very question is why I'm worried about having the BRCA test because I know I wouldn't want a prophy mast and not sure my daughters should go through it but it is their decision and they neither would consider it. I haven't read this info on here enough to know if it is necessary. If it ain't broke then why fix it? I had a Lumpectomy.  Good luck with your decision.

Dawn

Deb, Call the surgeon or hospital and ask if the hospital provides the postmastectomy camisole.  The surgeon's office staff might know and someone on the floor at the hospital will definitely know.  A couple of the camisoles will allow you to wash one while wearing one.  You can rig something up with a tshirt and safety pins but the cami makes life much easier.  There is also one that velcros up the front to make it easier to get into.  The others usually can be stepped into.  Be sure to ask for a physical therapy referral to help you regain mobility in your arms as soon as you are able.  The exercises you will be given are OK but PTs can help you work on scar tissue, etc.

Deb,

If you are having bilat mast done, here are a few suggestions that I have for you (went through it June 1)

1. get non-child proof caps for your meds post surgery. It is nearly impossible to open child proof caps for several days after surgery.

2. Have a soft pillow in the car for the ride home to protect the tender area after surgery from the seat belt.

3. Pain meds can cause constipation. take precautions (apple juice works for me)

4. the cancer nurse facilitator at the hospital gave me the front open velcro cami with inside front pockets to hold drains as well as 'sally bags' to wear them around my neck. (send me a pm about the sally bags) check with the hospital to see what they provide. If they don't provide anything take it with you for the ride home. (Or get front snap 'granny gowns/smocks' and wear them inside out around the house to put drains in.)

Hope this list helps and good luck on your surgery. We will be here anytime to help.