Bilateral or Unilateral Mastectomy? Implant risks?

Update - In case anyone else is facing the same dilemma.

 I considered at length whether to have a bilateral - left would have been prophlactic.

I had the BRCA genetic test done - negative: no genetic component in my cancer. I had on the left 8 tests: 2 mammos (one with magnification views), 2 ultrasounds, 1 biopsy, plus  PET, MRI + CT Scans with contrasts: all were negative!

Following my gut, I decided nonetheless at the last moment on a bilateral m on 7/30:  to avoid future increased risk and worry: THE RESULT: The left did have cancer too!

However, even without that confirmation of my worst fear, I feel I would not have had regrets about that decision - I felt I researched everything extensively, did the best I could, and realized at the last moment, after all that uncertainty regarding the left (tests were needed because there were 'suspicous' areas, which did not turn out to be the cancer sites though), that I would always worry about the left (rightly so) and that the risk for future cancer was too high for my taste. (I studied extensively the research literature and talked to about 8 BC experts, including Armando Guiliano, who invented sentinel lymph node biopsy). Interestingly, the older and more experienced physicians were more in favor of bilateral: I don't think that was so much due to being 'old school' but due to life experience: they have seen many times that cancer recurs/spreads, and that the risk is substantive especially for a younger person.

The fact that I had no risk factors, that I am a poster child for 'healthy living' and exercise, etc ... lots of blueberries, raspberries all my life before I ever thought of cancer, had a baby before 25, nursed, etc ... contributed to my decision. There is some discussion in the oncological literature - no good research though - that people like me - healthy + without any identifiable risk factors may be more recurrence prone given that they got cancer in the first place. My reasoning was that, if "I" could get it, despite my many protective factors then what would stop the damn cancer from attacking the other breast.

I did consider in my decision that I may ultimately be flat chested if construction should fail over the years. I don't think I have the nerve for multiple repeat surgeries. Now that I am presently 'flat' (reconstruction is initiated though) I don't feel as terrible about it as I thought initially I would. I am so to speak 'over breasts'. I just don't want to have any cancer and move on with my life. I recognize that the bilateral m is not a guarantee for a cancer free life.

My first choice is to have a successful reconstruction, but I have come to understand why some women do not chose reconstruction. I could develop a new look; it is anyway time for reinvention. Looks somewhat youthful, actually ... I could start running marathons without all that front weight ... and my husband still makes love to me ... and if he didn't I would regard it as his problem ... I am really not just my breasts.

I am recovering fine so far ... although ... I have to have an additional smaller surgery because I didn't have clean margins after mastectomy - not even I would have thought of that possibility.

Cornelia

Hi Smorache,

Whatever you decide, let it be your decision. Friends and family have lots of opinions on this ... but they don't need to live with your body thereafter.

I am going to post here my pros and cons list that I used in my decision making because you were asking for input. I hope it is useful.

Pros and cons of bilateral vs unilateral mastectomy

Pros - do bilateral

• § It's a largely effective treatment / prophylaxis: no breast tissue, lower BC risk in future
• § Remaining risk? remaining risk is proportionate to the amount of remaining breast tissue: standard (1-2%) ... however, given that I was diagnosed with invasive, it is possible that I could get recurrence / met static anywhere else
• § MY RISKS
• o I am young for having cancer: puts me at higher risk
• o Presence of diffuse, indeterminate or malignant appearing microcalcifications / changes in left
• o History of ‘suspicious' findings - though so far benign findings in left:
• o current PET scan indicates suspicious findings on left
• o Risk of repeat biopsies in left: recommendation is: If > 2 biopsies: do M
• o Multifocal in right breast increases risk in left: see below
• o Dense breasts: difficult to monitor
• § Survival for patients with bilateral breast carcinoma is similar to that of patients with unilateral disease; however, prophylactic risk-reduction intervention for the contralateral breast should be considered in patients who have multicentric unilateral disease or a positive family history for breast carcinoma http://www3.interscience.wiley.com/journal/80503130/abstract?CRETRY=1&SRETRY=0
• § ‘Healthy' breast is at higher risk post BC diagnosis; in addition risk keeps increasing each year by about .5% if on Tamoxifen: if not, about 1%
• o risk of contralateral disease: http://www.cancer.gov/newscenter/pressreleases/MRIContralateralRelease 10% of already diagnosed BC will have contralateral disease (not a long-term study: long-term could be more); literature inconsistent; Hopkins book says: 15-25%, p 122
• § Hypothesis: no studies but reasonable discussion from oncological POV (Carroll): given that I am young, no clear risk factor, healthy nutrition, exercise - maybe my body ‘just more prone toward cancer'
• § No Tamoxifen or other meds needed if bilateral? That was the hope ... but not necessarily true (Carroll: oncologist): will be determined after mastectomy by examining: tumor factors, level of invasiveness, oncotype dx test, etc
• § Would need mastopexy in left for symmetry = surgery, risks, and scars anyway
• § If I don't do bilateral now, and do mastopexy instead, I will have more scars ultimately on the left; also consider for symmetry mastopexy with / without implant?
• § More difficult to achieve symmetry if done separately
• § Bilateral reduces constant worry about cancer in the ‘healthy' breast ... to some extent
• § If there is recurrence, I will have to go through mastectomy again! Again loss from work; loss of money, agony, etc

Cons - no bilateral

• § Still not 100% protection; I will still need to be vigilant about cancer detection: chestwall, elsewhere / systemic
• § Lymphedema risk ~about risk 30% each side; can be debilitating; if it occurs: permanent -- UPDATE: with a good surgeon the risk rate should be lower; the 30% lump all populations together regardless of skills of surgical team, or patient health status, or number of lymphnodes removed
• Need to prophylactically protect the affected side from any problems: injuries, sunburn, blood draw, lifting / carrying anything heavy; flying ... Problem: with bilateral: both arms affected and need to be protected forever: reduced functionality
• § Bilateral = Double the risks:
• § long-term complications with implants (27% resurgery rate for any complications according to Mentor website / Implant manufacturer):
• § Risk of capsular contracture 8%
• § + other complications
• § risk of lymphedema (30%)

• § Guaranteed resurgery for implant exchanges; best case scenario: resurgery every 10 years on average
• § Greater risk for immobility
• § Greater short-term risks: surgery and immediate complications
• § You can always do the other one afterwards; but can't undo a bilateral
• § You lose both natural breasts. Any reconstruction will be never as good as God made them (Dr. Guiliano)
• § Loss of Sensation in both: not just nipple but the whole breast area: nerves are cut: wouldn't know if I hurt / burned myself -- UPDATE: with good surgical skills, this shouldn't be so bad; in my case now, 6 wks after mastectomy: I have sensation everywhere (not the nipples of course, they are gone); the right side that had the lymphnode biopsy is the most affected, partial feeling but I can already see that feeling is coming back; nerves are regenerating and will continue to do so. The left arm and chest feel already almost normal.
• § Any future radiation would negatively impact implants: likely to cause capsular contracture / Deformities; Other?  (I tried to avoid radiation in this round: because of side effects; because, very importantly!! one cannot radiate the chestwall repeatedly (can cause cancer itself among other problems) and therefore I wanted to hedge my options by not chosing lumpectomy + rads but going with m; in case I have a recurrence, God forbid, I still have the option to use radiation.
• § BR may fail? More likely after capsular c. / repeat surgeries / radiation
• § Bilateral may have psychological consequences, such as negative sexual self-image.

Good luck to you, keep breathing and make the best choice for yourself,

Cornelia

Hi Lilith,

Thank you for your good comments.

Based on my recent experiences and any additional information I have gathered from doctors and further research, I agree that the Mentor risk statistics don't necessarily predict individual outcomes; individual outcomes can be considerably better given a patient's overall healthstatus, the skills of their surgeons, and extent of operation (e.g., I did discuss with my surgeon not to cut my medial pectoral and the intercostobrachial nerve. She anyway wasn't going to do that but confirmed that this may vary from surgeon to surgeon. If those nerves are cut then sensation may be thereafter more limited. Cutting the medial pectoral nerve may provide a better cosmetic appearance because the skin over the breast will appear more relaxed; problem is that it may also damage sensation in the longterm.

In addition, I am finding out that one can do oneself a lot in terms of preventing problems (e.g., lymphedema, stiffness) with good preventive measures and good physical therapy (I am working to regain full range of motion and strength). Trying to beat the statistics ... so far, so good.

Cornelia

I just had a conversation with a lumpectomy patient who has had a recurrence and wishes she had opted for mastectomy when diagnosed. That made me wonder, how many lumpectomy patients are out there who are very happy with their results - it seems I see much more discussions of mastectomies than lumpectomies.

Lauren: since you have your surgery coming up on the 11th I thought I post my post-surgery insights for you here - hope you find something helpful in there. I'll be thinking of you.

Cornelia

More tips and info:

Know that you already are a big step ahead because you arrived at a decision. And know that you will survive the surgery. It will be a hassle for some weeks but you will move beyond that; you will need hands on help, ... from your family, friends; ... and know that you will still by a woman without those breasts, and, very importantly, that you will still be you!

My best advice right now is:

to strategize with your family / husband how to organize help for the short term aftermath of the surgery: who helps you out of bed to go to the bathroom (you need pretty much a constant attendant when you get home after the surgery to get up, to get food, to get your medication, to wash yourself, to get dressed, to cheer you up, ... to take care of the kids, run errands, act as a chauffeur, etc - let people know that this is something you'll need WEEKS after surgery still - not just the first 3 days (well, you'll be able to wash & dress yourself sooner). There's apparently lots of variation in how much people are affected; some recover easier and sooner others take a little longer. For me:

What to expect:

Week 1: the hours after surgery I hardly remember thanks to the drugs. I remember freezing; they keep the OR ice cold; my family got the nurses to bring lots of warm blankets, which helped.

Drink lots of water after surgery to wash out the anesthesia. Don't worry if they tell you that you gained 8 pounds in the hospital: the anesthesia makes you retain water and makes you constipated: ask the doctor for a remedy: e.g., milk of magnesia.

The first week was painful, but then again one is on pain meds and it all becomes a bit of a blur. The pain is certainly uncomfortable, but not excruciating and manageable with meds. Be sure to get adequate prescriptions; Tylenol is likely not going to do it. And don't be shy using your meds (no worry about becoming dependent ... it's not going to happen; you will know when to ease the meds). Doctors recommend that you walk daily to decrease your risk of blood clotting. Initially the walking was a bit tough for me, I felt weak and shaky, but I did it ... with my husband / family's help. After the first week things get fairly rapidly better, walking, moving, getting up. All not quite back to normal, but better.

Regarding the drains, the ideal situation for me was to put them into the pockets of a shirt or pyjama jacket. I secured them with a safety pin in the pocket, and that way they were close to me but lower than my chest so they could do their job and drain the chest, and they were out of my way so I wouldn't accidentally pull on them. If you put them in pant pockets (don't !) you risk pulling them out or tearing on them while pulling your pants down without thinking when you go to the bathroom. Drains came out after about 10 days.

Be sure to have some front buttoning shirts available; pulling sweaters and shirts over your head in the first weeks is not an option. Also, ideally have a post-mastectomy bra or two handy before the surgery so you don't need to go hunting for one in the first week. They are available online but better to try them on in a store (medical supply store).

I developed cording (also in some places referred to as axillary web syndrome) on the right arm (SNB side).  The arm got really painful to move, lots of tightness, and even strings, cords like on a violin going down my arm. This is apparently common (although I was totally unprepared for it) and becomes more manageable with massaging (very gentle) and with time. Keep the arm as much as possible elevated to decongest it if that should occur. Also, do keep moving the affected arm ... gently.

PS said after surgery not to move the arms much ... but at the same time it is important to get some shoulder movement so you don't develop a frozen shoulder. Discuss on what you can safely do. In my case that was some shoulder and arm movement, but no raising of the arms above the shoulder for several weeks. I did not get a frozen shoulder thanks to regular light movement.

Have several of the wide ace wrap in the house and some soft gauze pads: you'll need to keep re-wrapping your chest. I found the wrap more comfortable initially than the post-m bra, because it was more adjustable, no seams, etc.

Week 2: better at walking; washing, getting dressed by myself ... taking it easy but definitely not bound to the bed all day. I still couldn't drive and needed help with getting food, doing errands, opening heavy doors, closing windows, etc. ... but I did go shopping (a little) and out to lunch about 8 days after surgery (take your pain meds with you). At the end of the 2^nd week I was pretty much on my feet most of the day, but still taking things easy, sitting frequently, no lifting, pushing, pulling, etc.

Week 3: My helpers went back home and I coped alone all day, sometimes creatively ... opening some drawers with my feet ... picking things from the floor up with my feet because bending down hurt ... but all in all I managed fine. The biggest issue was staying organized, that there are groceries in the house if you can't drive yet, etc. Pain meds stopped altogether in the 3^rd week; not necessary anymore.

If you can afford it, rent for a week, or so, a hospital bed to get you through the initial recovery period. Laying flat is not good for you because fluids collect in the wound area and it is likely also painful. There are medical supply companies where you can do that. It'll help you to keep your body upright without sliding around in bed and thus it will keep the swelling and pain down. If renting that bed is not an option, make sure that you have plenty of pillows at hand to prop up your upper body and your arms. Alternatively, a great way to get good support for your tortured body is this wedge system:

http://www.contourliving.com/p-21-backmax-body-wedge-cushion-sets.aspx

The cushions fit anywhere, are detachable, and the covers are washable. It works great for me. Keeps my upper body upright. I just add pillows on each side to support my arms. It greatly reduces any pressure in the chest in the nighttime. No sliding off ... as is the case with pillows only. I bought mine on Amazon for $99.00.

Prepare yourself that you will have to ask for help in the weeks to come - I am lousy at that but got better over time. There is no merit in soldiering through this unnecessarily (e.g., not like I: in order not to wake my husband in the nighttime, I tried myself to get out of my bed in the  second night, ... made three steps ... and then crashed onto the hospital floor and hit my head ... So, be sure to ask for help every time you need it!) We are not getting any purple hearts for bravery through this. For the same reason: take your pain meds.

Organize visits and friends such that they don't all show up at the hospital: you will barely be able to recognize them because you are so drugged out; instead ask them bring you lunch or dinner to your house for the first weeks or however long you need it after the surgery. Many people will want to come right away: chances are, you won't have enough energy for it ... so don't be pushed into seeing your entire office staff in a short time. Trouble is that many think that after the first week you are fine, that they have done their duty ... and you are left to your own devices when you are not quite ready for it yet. Remember that you will need help for several weeks, so strategize visitors accordingly.

If you can speed read a book or listen to a CD on "preparing for surgery / healing" to psych yourself up. My favorite was:

Successful Surgery - Health Journeys
by Belleruth Naparstek ----

Prep for surgery

http://healthjourneys.com/product_detail.aspx?id=29

http://healthjourneys.com/product_detail.aspx?id=29

I was listening to the visualization and affirmation tapes and some favorite relaxing music, Beethoven's "Ode to Joy" until shortly before the surgery on my I-Pod, which helped.

Also, since then I discovered the movie: "Why I wore lipstick to my mastectomy" ... that'll psych you up. He can download it for $3.95 from here:http://www.whyiworelipstick.com/v2/home.html

In the remaining time, enjoy your kids and family and whatever else you like to do most until then.  You will get through this and it will soon be just a distant memory. Keep the end in mind: health and new, good looking breasts.

A big hug for you,

Cornelia

P.S. I asked my surgeon and anesthesiologist to read me ‘healing statements' before I go under. Surgeon said "Sure" we do this all the time. But ... knowing how surgeons are I wanted to make sure, so I asked them to read the statements in the prep room out loud while I was still awake ("to see if they are comfortable with them") and my whole family was around me. The anesthesiologist thought it was a little weird; it was clear that he had never done anything like it. My daughter to asked him to practice with feeling, to practice several times and to say it ‘as if he meant it.' I figured, as a psychologist, even if they don't really get to reading them once they start putting me under, the statements would have their effect on both them and me from the practice. Here they are (make up whatever works for you):

Healing Statements

For the surgeon

BEFORE THE SURGERY:

Please hold my hand at some point before the surgery when I am still awake. In a way that feels natural to you, please tell me several times:

• § I care about your health and I will do my very best to remove the cancer from your body.
• § I will remove all the breast tissue from your body
• o Note: (by ‘all' I understand that typically 1-2% remain).
• § You will be comfortable when you wake up and you will feel well and relaxed.

AFTER THE SURGERY:

• § The operation went well and you are fine. You will heal very well.
• § You will be a bit tired but you will be comfortable and relaxed.

Healing Statements For the Anesthesiologist

BEFORE THE SURGERY:

Please hold my hand at some point before the surgery when I am still awake. In a way that feels natural to you, please tell me several times:

• § I care about your health and I will do my very best to make sure that you will wake up.
• § I will be attentive to you during the entire surgery. I will take good care of you.
• § You will be comfortable when you wake up and you will feel well and relaxed.

AFTER THE SURGERY:

• § The operation went well and you are fine. You will heal very well.
• § You will be a bit tired but you will be comfortable and relaxed.