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August 16, 2011


Health Disclaimer

All material related to the subjects of Cancer/LCIS/Breast Reconstruction  on this blog is provided for information/entertainment purposes only and may not be construed as medical advice or instruction. No action or inaction should be taken based solely on the contents of this information; instead, Readers should consult appropriate health professionals on any matter relating to their health and well-being. 
The medical information and opinions expressed here are believed to be accurate, based on the best judgement available to the author, and readers who fail to consult with appropriate health authorities assume their own risk of injuries & consequence. The content is intended to inform and entertain only.  LRBF ~ August 2011
Here We Go..
I want my message to be clear. Whenever I’ve mentioned LCIS, the women I’ve talked to cock their heads and furrow their brows in curiosity.  They have never heard of it.  

So, I am going to tell you what I know, based on my research and personal experience on the subject of LCIS as well as the breast reconstruction procedure (Tram Flap Procedure) that I chose to have at the same time as a double mastectomy.
Mostly, I want to urge you to listen to your body. Pay attention to the ‘signs’ whatever that means to you.  Don’t dismiss a ‘nudge’ or a ‘gut feeling’ you have and ignore what your body is trying to tell you.  You could regret it.   
My intention here, isn’t to be an alarmist. I just want you to pay attention.  I want to tell you what you can expect when faced with a situation like mine - some of the things you won’t hear from your medical team.  
Your doctor should serve as a guide and as part of your support system while undergoing/exploring the traditional, recommended, tried & true modalities. But, you have to find your voice during the process - describe what you are ‘feeling’ ~ and do NOT feel comforted if they tell you it’s nothing. It may be, but you should always seek a second opinion if that ‘nagging’ feeling doesn’t go away.  
I had always held professionals (doctors in particular) up on a pedestal..  a ‘Near-God,’ if you will.  That changed around the time I was asked to leave a doctors office because I’d asked too many questions.  
Another doctor strongly urged me to seek another physician because I disagreed with her.. And for good reason.  “Stop reading so much!” they lamented.  I would eventually find a doctor who knew how to listen and agreed that his patients were often the best indicators and authorities of their bodies.  He was willing to blend traditonal medicine with appropriate alternatives.  This is a tremendous relief to a patient who feels like they have no control over what happens to them and can go a long way in supporting recovery.  
This was illustrated in the direct relationship between the way my first, second and third biopsies were handled, pre and post-op, and my declining recoveries with each experience.
In the ten years or so, between my first biopsy (in the mid-late 90’s) and what hopefully was my last surgery in 2007, there was a 10 year study on the subject of LCIS (Lobular Carcinoma Insitu) that would support the ‘nudge’ I felt and have referenced in previous posts.  I paid attention to it because I knew I was being guided - I just knew.  Ultimately, it would lead to my decision to have a double mastectomy. 
In this final posting on LCIS (5 of 5) I will reveal why this update proved to be so important...

Lobular Cancer in Situ
Normal breast with lobular carcinoma in situ (LCIS) in an enlarged cross–section of the lobule.   
Breast profile:
A ducts B lobules C dilated section of duct to hold milk D nipple E fat F pectoralis major muscle G chest wall/rib cage 
A normal lobular cells B lobular cancer cells C basement membrane
The Results Are In...
I had just hung up the phone after listening to the message my plastic surgeon had left regarding the biopsy report from my recent, breast reduction - intended only to reduce my chances of getting breast cancer (read previous posts, parts 1, 2, 3 & 4).
His voice had not been reassuring.  His words told me it was urgent.  He’d instructed me to call his office right away and get further instructions from his staff as he had to catch a flight out of the province that afternoon and wouldn’t be available to discuss things.  I knew I couldn’t ignore or delay it, so I picked up the phone and called.
In hindsight, things had started to line up in a magical way right from the moment I had felt the ‘nudge’ to re-visit the option of breast reduction.  I couldn’t explain it - still can’t, but I knew I was being led.  

There was this one particular breast surgeon I felt completely confidant in, during my exploratory & researching stage of trying to decide if breast reduction was the answer.  The decision to move forward with that, would largely depend on finding the right surgeon.  I did, but he informed me that he only performed mastectomies - that wasn’t what I was looking for, after all I didn’t have cancer.  But, I wanted & needed someone I innately trusted and who offered right answers.  They would be life altering ones, after all, so I had to get it right.
The plastic surgeon’s office was telling me they’d set up an appointment for me on Monday with a breast surgeon. This was Friday - the surgeon’s name was still floating in the air as I listened to the instructions. I was stunned.  This was the same surgeon to whom I’d half jokingly said as I left his office, “If I ever need a mastectomy, you’re my man.”

I just had to get through the week-end.  Terry would come with me of course, so I’d be sure to hear everything being said.  This is an important piece to remember if you are ever in a situation where you are being told information you need to remember.. bring someone to be your ears as you may not take it all in.  
When we arrived for the appointment, he was in-between surgeries and met us in the pre-op area of the hospital behind a curtain.  I sat on a gurney while he explained what he’d been told by the plastic surgeon and what he’d read in the pathologist’s report.  Both breasts were filled with 3 different kinds of pre-cancers and one of them, the most prevalent one - LCIS, considered to only be a high-risk indicator or predictor of developing breast cancer in either breast, over your lifetime.  It was also showing outside of the margins.  Considering this along with my previous history ten years prior, he was strongly advising a bi-lateral mastectomy.  Reconstruction would be entirely up to me and performed by a plastic surgeon, also to be determined by me.  
I did not hesitate to respond.  I turned to Terry and said that I needed to do this.  He looked worried but nodded and answered; “It’s your decision.  I’ll support you, regardless.”  Done.
Now all I had to do was find the right plastic surgeon to discuss the reconstruction option.  I’d been considering including this at the same time because what if, after the mastectomy bandages are removed for the first time, I look in the mirror and am horrified by what I see?  Would I regret not having the reconstructive surgery at the same time ie; getting it over with because I did not want to face even more surgery down the road? I had to do more research.  

Synchronicity guided by unseen forces would continue to show up in my life.  People and the details, continued to line up for me in inexplicable ways.  
The plastic surgeon who performed the breast reduction agreed with my decision to have reconstruction, but referred me to his associate whose specialty was reconstruction. Done and done!
The appointment with the next plastic surgeon, proved that I was a prime candidate for a reconstructive surgery called a ‘Tram Flap Procedure.”  She explained that one needed to have enough, excess belly fat to create breasts or what I would endearingly come to refer to as my ‘belly boobs.”  It was the right fit for me, as I knew I didn’t want implants and I certainly had the excess needed to make it happen. 
She had trained under the tutelage of the doctor who had developed the Tram Flap Procedure, but he had since retired and lived out of the country.  But then added with a smile that he liked to join her surgical team whenever he was in Toronto.  “You never know when he might show up.”  
Would I be that lucky?  The positive energy was gathering and things continued to line up for me, so I was hopeful.  From the very moment I felt that first ‘nudge’ to revisit the breast reduction issue, I knew I would have no regrets.  I never questioned my decisions and continued to move forward with optimism and determination that this was my answer.  
Graphic Video > Tram Flap Reconstructive Surgery > Single Breast, Post Mastectomy

You May Have To What?
Meanwhile, I continued to research all I could find out about the proposed, Tram Flap Procedure.  It was complex, but it had the same risks as all surgeries. The plastic surgeon described what would be happening in the OR under a general anesthetic.  The breast surgeon would perform the double mastectomy, as part of my surgical team.  And then she would create my ‘belly boobs.”  It would take several hours and the loss of blood anticipated, might require a blood transfusion.  The post surgery monitoring of the blood vessels that would be tunneled from the abdomen, under the rib cage and diaphragm, and up to the breast sites, might require the attachment of leeches to the breasts to ensure blood flow - the last thing we wanted was for the tissue to die. WHAT? 
If she said anything after that, I’m not sure.  I must have looked stricken because she quickly added, with a smirk; “Relax.  They’re medical-grade leeches. We don’t run down and get them from the creek behind the hospital.
I would also be in a ‘warm’ private room to ensure that the newly attached blood vessels were kept open and the blood flowing. Anything was worth enduring if it meant I wouldn’t have to have those leeches attached to my body.  I had visions of the scene in ‘The African Queen’ where Humphrey Bogart emerged from the water, covered in huge leeches.  He was such a girl about it, but who could blame him?
Then there was the necessity of leg pumps, (to prevent potential blood clots) a catheter because I wasn’t allowed to get up to the washroom, and the usual things like oxygen, intravenous hook-ups for antibiotics to address any potential infection and monitors for my vital statistics.  Whatever it took to get me to the other side of this, was fine with me.
But First..
There were pre-op appointments with the hospital for routine blood tests, a chest x-ray, and because I’d undergone surgery only weeks before, there was a chance I could be (unknowingly) harboring bacteria (MRSA) picked up from my previous hospital stay (where only the ‘mightiest’ of bacteria lurk).  This required swabbing my anus right there in the office of the head nurse. “Stand up, drop pants and bend over.”  Fast and painless, but still humiliating.  No Photos Here!
The Day Of..
It was July and surgery had been scheduled for early August.  They felt there wasn’t an urgency at this point, as LCIS was still not considered capable of becoming invasive.  It remained a high-risk marker of developing breast cancer in either breast.  So the short delay was acceptable and was here before we knew it.
In the early morning light of the big event, I was waiting in my surgical gown and booties for the pre-op intravenous torture to begin.  As usual, I had warned the nurses that my veins were difficult, but most importantly, that I would not be tolerating several attempts to get the needle in.  They assured me that they had the perfect nurse for troublesome veins, guaranteeing that she would get the needle in the first time.  I was skeptical but decided to let her have one go.  They were right.  She was fantastic. The needle slid easily into place.  This was a ‘gift’ that encouraged hugs from grateful patients like me.   
Everything was running smoothly.  I was anxious of course, but remained confident that the inexplicable ‘nudge’ had led me here.  With my IV in place, I was wheeled up to the OR doors and introduced to the anesthesiologist who asked me questions regarding allergies, reactions to anesthetics, etc. I described the incident of throwing up violently, after the first surgery after being given morphine for the first time in my life (whatever happened to good old Demerol?). 
If memory serves, he told me that he would use something from the morphine family that included the words ‘ hydro & morphine’ in its name.  Terry and I recall his description as having smaller, water molecules that somehow worked to prevent vomiting.        
Almost There..
While lying outside of the OR, I kept catching the eye of a tall, slender man in hospital scrubs, leaning against the wall directly across from my gurney.  He was busy texting, but would periodically look up to smile and nod at me.  
My surgical team began to gather, all chatting, patting my hands and stroking my hair, which went a long way to reassure me.   Then the ‘texting’ doctor walked over to us, at which point the plastic surgeon smiled and said, “Linda, this is the doctor I told you about and he’s going to join us in the OR today as part of your surgical team.  You are a very, lucky woman.”  
I was overwhelmed with comforting feelings.  It was another reinforcing sign of how things had ‘lined-up’ for me.  

Note: Every nurse who  changed my surgical dressings, remarked that they’d never seen such a perfect execution of the Tram Flap procedure).

Terry was becoming anxious, as he thought the surgery was taking longer than the surgeon had indicated it would, although we would learn later that nothing extra-ordinary had happened in the OR.
Once he was advised that I’d be a while in recovery, he was able to send out an e-mail broadcast to interested friends and family.  We’d discussed the decision to do it this way because I had only told immediate family about the first surgery and being able to explain it once, to everyone at the same time, would simplify it for Terry.  We highly recommend doing it this way, as I recall (when looking after my mother during her hospitalizations) how draining it can be when you have to update a list of people via phone, after long days spent at the hospital.
Post Surgery
Much, much later, I was settled in my warm, private room and tethered accordingly, the nurse was demonstrating how to address any post-op pain, with the push of a button. It was self-administered on an ‘as-needed’ basis, but with limitations.  And, because I have a pretty high pain threshold, I told the nurse that I’d likely not have to push that button very often.  She just smiled and patted my hand.    
Shortly after she left, and hearing a constant beeping emanating from my room, she returned to explain that the beeping meant I’d reached the maximum dosage and would now have to wait until the automated system determined that the designated time between doses, had passed.  So much for my high pain threshold. Beep, beep, beep, beep... 

What I recall of the first night after Terry left for home, was fairly uneventful.  The nurses came in an out, doing their thing. Having to lie mostly in the same position all night was frustrating. I was sweating and couldn’t turn myself enough to scratch my extremely itchy back.. I seemed to be having some kind of reaction and was told that it would be looked after the next day, when the doctor made her surgical rounds.

 These lesions may have been a reaction to the morphine derivative    anesthetic, but no one could verify it

The best thing I did for myself was to have the foresight to buy myself a small, portable fan that attached to the bedrail.  I kept it aimed directly at my face and away from my surgical bandages, as I needed to keep the breast area warm, but the cool air circulating around my hot head, gave me the relief I needed to be able to sleep
Every morning, Terry (my hero) showed up with a much anticipated container of ‘good’ coffee from home, for which I was most grateful.  

That first post-op morning, when the plastic surgeon came to see me, she took one look and ordered a blood transfusion.  Apparently I was a little grey - lack of coffee?  I was very impressed with the protocol of performing the transfusion, to ensure all blood being administered, was compatible with mine.  Their hyper-vigilance was greatly appreciated as two nurses stood on either side of my bed and proceeded and repeated a detailed, triple-checked list, before administering the blood.  

I had not been allowed to donate my own blood before the surgery in anticipation of needing a transfusion, as is the norm. This was because the recovery time between the 2 surgeries was short. 
Me, being transfused..

But, apparently one transfusion wasn’t enough and a second was ordered the following day.  This motivated Terry and I to 'send up' a thanks to the generous, unknown donors who had taken the time to give their blood - a tremendous realization of how very necessary  our blood banks are.  
Eventually, I would become untethered from the leg pumps and catheter and was encouraged to walk the halls for exercise, using my IV pole for balance.  Having had the rectus muscles removed from my abdomen to support the new 'belly boobs,' I was no longer able to correct a backwards fall.  This scary situation presented itself as I tried to turn around at the end of the hallway.  Luckily, the wall was close enough behind me and I managed to brace myself against it before I reached the point of no return.
I could have done a lot of damage internally, as they’d implanted a piece of mesh to help keep everything in place, preventing a hernia or worse.  Any kind of excess strain by stretching or lifting would have been disastrous, for the first while.  These are things I wasn’t told in advance and I don’t recall having found any warnings about it during all of my research.  I knew what to expect in regard to the surgery itself, but learned nothing about what to expect afterwards - just some pain and follow up appointments. Another good reason to post on this subject.
I was sent home at the end of the week with instructions to contact the ‘Home Care’ organization and book some visitations for the purpose of draining the four tubes (still attached to my abdomen and breasts) and dressing my wounds.  I had a prescription for pain and a follow up appointment to remove the stitches and tubes if all was well.  The rest was just time and healing.

I really must stress the importance of ensuring the cleanliness of those caring for you.  By that, I mean the nurses who come to your home, in particular.  Home Care.  I had 3 different nurses the first week at home, and began by making no apologies to them, as I made it very clear that I would be hyper vigilant about my need for them to use gloves while dressing my wounds and handling the drainage tubes.  
I explained how my life had been seriously compromised from a Staph infection acquired a decade earlier, during a biopsy procedure at the hospital.  And, because of that experience, I would be watching closely as they worked.  I was very clear that if I saw them touch anything outside of my wounds, (hair, nose, etc.) I would ask them to change gloves.  They all seemed to be on board until the first time I had to ask them to please change gloves.  Obviously annoyed at the inconvenience, I got ‘attitude’ or haughty silence.  Well, too bad.  I really did not care.  I had enough to deal with.  One of the nurses would (unconsciously) touch her stringy, unkempt hair as she worked, and as she reached for my dressings, I stopped her cold.  “Please change your gloves, because you have touched your hair.”   
The worst example was the nurse who came to me the morning after she had worked overnight in the home of a patient who clearly had an animal. Her street clothes (sweats) were rather soiled and you could see the stray, pet hairs hanging from her.  I was horrified as I took this in from my prone position on the bed.  As she prepared to work on my exposed body, I asked her to change gloves and to drape one of my clean, white towels over her top while she worked.  She was clearly not happy and tried to excuse it by claiming that wearing the gloves was not to protect the patient, but were meant to protect the nurses who wore them, from whatever the patient might have.  What? 

I need to add that not all 'Home Care' nurses are unkempt or indifferent to (their) cleanliness. I had some wonderful, caring and vigilant attention during my experience.

Terry’s employer generously allowed him to work from home, so he could look after me.  In addition to this and sending beautiful flowers to the house, they arranged for the services of a local caterer, our choice. To come into our home daily and prepare a delicious and healthy dinner.  This also gave Terry a deserved break from kitchen drudgery.  We would sit up at the counter, chatting while she prepared a three course meal.  After serving us, she cleared, washed up and left with her wicker basket of empty, prep-bowls.  When we win the lottery guess what we’re hiring?

I have no idea how anyone would manage all of this without an advocate at the hospital and help at home!  Terry shopped, learned how to do the laundry, (that was hard for me to let go of) cooked the meals, cleaned the house and tended to my medical needs and other things that were initially difficult for me to execute.  He did a great job. But, perhaps the very best moment for me, was when he asked, “How do you do this every day?  I have a whole new appreciation of you.” 
Yup.  Everyone should have a wife!!   

On The Mend
After a week, the stitches and the 4 draining tubes were removed.  I got a good, first look at my still swollen, new breasts.  No regrets.  Things were healing according to schedule and the doctor was pleased with the results. She said the scars would fade in time and I was now allowed to shower with assistance.  I had to continue sleeping on my back with pillows under my knees for another few weeks and being a right-side sleeper, I found this difficult to adjust to.  Our two cats insisted on finding their way onto my stomach, so I had to place a pillow there to ensure protection, should they decide to launch themselves off of my abdomen... it happened more than once.  One morning I woke up to see Terry taking a photo of Meg Ryan (inside my right arm) and Sophie (peeking out from under the quilt).  They rarely left my side.

When It Rains It Pours..
Around the third week into my recovery, my sister who resides permanently in Florida, called for our weekly chat and with a big sigh, she reluctantly told  me that her recent mammogram had revealed a lump in one of her breasts. She was to begin a course of chemo, followed by radiation and I couldn’t help but think that had our mother been alive to learn that both of her daughters had been touched by cancer, she would have been devastated.  As much as we loved her and missed her earthly support, we were happy she wouldn’t have to deal with any of it.  But, perhaps, she was able to lend a heavenly hand where needed.
It was a stressful time and I wanted so much to be there for her.  So I had to settle for being emotionally supportive.  You do what you can. I wanted to cook her meals and drive her to appointments and sit through chemo sessions with her. She had her loving and supportive husband to handle these things - but still.  
Our weekly, long-distance chats would inevitably include questions and revelations about breast cancer, but sometimes there were things that came up, neither of us knew the answer to.  I decided to buy her the latest copy of ‘Dr. Susan Love’s Breast Book.’  There had been 4 more editions since I bought mine, a decade ago.

And The Good News Is..
My sister completed her chemo and radiation, enduring the usual fatigue, hair loss and other complications, all very, bravely faced.  She remains breast cancer free as of this writing.
Oh, Just One More Thing..
After listening to my plastic surgeon at one of my follow-up appointments, I reluctantly agreed to endure one more operation at around the one year mark, following the double mastectomy & Tram Flap procedure.  She felt it was necessary to 'tweak' her work and remove some of the accumulated scar tissue and part of the implanted, rectus muscle that had hardened around the new 'belly boobs.' She also intended to remove some additional skin from around the left and right axilla (armpit) areas where lymph nodes had been removed.  Then, she casually mentioned that it would be up to me, but why not finish the job and create pseudo nipples and tattoo on the aureolas, while she was at it?  Oh, sure why not?  

She presented me with a choice.  She could create realistic, permanent nipples by removing the skin from another site, like a hip or buttock, and then attach them OR she could attempt to create them by gathering up a bit of excess skin at the end of the nipple site and stitch them at the base.  This second choice meant that there was a good chance they'd meld or disappear into the breast at some point. 
I chose the latter because it seemed the lesser to deal with and I was okay if the nipples disappeared.  I was pretty happy with my ‘belly boobs’ as-is.  I also agreed to the tattooing to create the illusion of areolas. The nipples did eventually lose some of their volume and the tattooing faded somewhat, 
but they look just fine from where I stand, thank you very much.  
I had specific intentions when writing part 5 of this posting on the subject of LCIS. First, bring it to the attention of women who may not be aware of LCIS. What it is, what questions to ask and what are the choices going forward?  
Also, to encourage women to listen to their bodies.  Mine spoke to me by way of a ‘nudge.’  I can’t explain it any other way. I paid attention and began to explore things as they became evident.  I especially urge you to not be afraid to ask your doctor as many questions as you need answered.    
Ask for or seek on your own, a second or even third opinion until you are comfortable.  Take control.  A good doctor will support that. If they don’t, move on.  You are in charge of your life, your body and your journey.  Do all you can to straighten out the bends in the road so you can see the destination.
At the beginning of this post, I referenced elaborating on the significance of a ten year study of LCIS that took place between my first biopsy and the initial breast reduction surgery 10 years later, that led to the pathology report indicating both breasts were filled with LCIS and 2 additional pre-cancers.  

Ongoing Research
This is a typical example of what is still being reported on most medical/health sites on the subject of LCIS: 

“..Despite the fact that its name includes the term “carcinoma,” LCIS is not a true breast cancer. Rather, LCIS is an indication that a person is at higher-than-average risk for getting breast cancer at some point in the future. For this reason, some experts prefer the term “lobular neoplasia” instead of “lobular carcinoma.” A neoplasia is a collection of abnormal cells.”  AND
“LCIS does not cause symptoms and usually does not show up on a mammogram. It tends to be diagnosed as a result of a biopsy performed on the breast for some other reason.”

This is the current and relevant excerpt I found on LCIS in  
“Dr. Susan Love’s Breast Book: Fully Updated And Revised Fifth Edition.”  See Resources below for link 

“..We thought we knew the natural history of LCIS based on studies by Cushman Haagensen in 1978, but recent work has challenged our previous ideas.  The old theory was that LCIS doesn’t grow into cancer but signals a possible danger -- the way, for example, an overcast day warns you it may rain. Because of this, many experts believed that lobular carcinoma in situ wasn’t a true pre-cancer but more of a risk factor.  
Recent data, however, suggests that this may not be the case.  The first piece of evidence that LCIS can actually progress to invasive lobular cancer, came from a 2004 analysis of 180 women who had participated in a study of the National surgical Adjuvant Breast and Bowel Project (NSABP).  Overall they found after 12 years of follow-up that nine (5 percent) invasive breast cancers developed in the same breast as the original lesions, and eight of these (89 percent) were invasive lobular cancers--in the same area as the original LCIS.
A second piece of evidence was a study of women who had both LCIS and invasive lobular cancer in the same breast.  The pattern of mutations in the involved cells was very similar, suggesting that one had indeed evolved from the other.  More recently, molecular studies have shown that both LCIS and infiltrating lobular cancers are estrogen positive.. 
Three other studies have been published since 1996, including one of 214 women with LCIS, which suggest a continuous 1 percent per year risk of developing invasive breast cancer.  This risk can be compounded by other risk factors for breast cancer.  What can you do if you have lobular carcinoma in-situ?  Basically, you want to prevent yourself from getting invasive breast cancer.  There are a number of options; the most drastic is bilateral prophylactic mastectomy.  Why bilateral (both breasts)?  Because the risk occurs in both breasts...”

As I said at the beginning of this final post, 'I was led..."  

Discussion Forum:  LCIS > just diagnosed or finished treatment
Dr. Susan Loves Breast Book: Fully Updated and Revised Fifth Edition
Dr. Susan Love’s Research Foundation & Blog on Breast Cancer
And to continue your own research on all relevant Canadian and U.S. sites on the subject of breast cancer - I recommend using search engine:  ‘Google’