Thursday, August 9, 2018

To Reconstruct or NOT to Reconstruct... That is the Question

An excerpt from "​Breast Cancer Survival Guide" by: Lisa Vento Nielsen

When you are preparing for a mastectomy, part of the process is meeting with a plastic surgeon as one of the "benefits" of getting breast cancer is new boobs. Even if just one boob is trying to kill you, you can get the poisoned one replaced and the other one can be lifted and improved, too - all covered by insurance (if you are lucky enough to have insurance, of course).

I kind of felt from before I was even diagnosed at each screening mammo that I would not reconstruct. I always felt just the idea of boobs and dealing with the screening was work enough and often thought we should all just get the boobs removed because what is the point of carrying around things that so obviously is unclear as to what causes them to get diseased. As I mentioned,  I have no history of the disease and no known risk factors and yet here I am someone with dealing with breast cancer.

I am lucky though - lucky that I had screening mammos that began at 34 and not the new ruling of 40 and up because I was diagnosed literally on the eve of my 40th birthday after some inflamed ducts at my screening at 38 put me on the 6 month squeeze plan. From my previous scan at 38 that showed minor inflammation in the duct of my right breast, which is common to breast feeding and too small to biopsy oh and had a 99% chance of staying benign was within 6 months a tumor and definitely malignant.

It would ultimately turn out to be 5.6cm of cancer with 5 of 25 lymph nodes infections - otherwise knows as Stage 3 Cancer. From diagnosis to surgery, I had only 17 days. 17 days to figure out what exactly was going on in my body - all of which was truly not known until I was operated on but more on that journey in another post.

For now, the perks of breast cancer is getting that appointment with the surgeon to pick out your new boobs. I was first told about this new process by which they take fat from other parts of your body to reconstruct your breast and when the surgeon asked to see me disrobed, her first words were "You are obviously not a candidate for the fat shifting procedure." And I said, "Why because I am too skinny??" Note: I have never been too skinny for anything. She stared at me and said, "No - it is just too risky for you with xyz condition."

On that note, I was shown before and after pictures of her work and although impressive, I did not see me in those pictures. As someone who since puberty did enjoy having boobs and wearing low cut tops now as a mom of 2 and someone whose decollete was trying to kill me, I was really in the flat camp for boobs.

I did not think it through as clearly as I could have as I was going to still have a boob - and be uneven in an extreme way. I always had one boob that was bigger than the other but I did not really process how I would now just have one boob. Period.

The nurse in the office did try to get me to see the error of my ways - she said the normal about how I was so young and would want to have the appearance of two breasts and even the office acknowledges that the surgery does not give you a normal breast - just the appearance in clothes of having normal breasts.

It seems all selfish of me to put myself under for a longer amount of time, to delay my chemotherapy and to go in for additional surgeries just to have the appearance of breasts. I was ultimately at peace with refusing the reconstruction of the diseased boob and makeover of the other.

Now, I will not say I regret it but having to do these extra steps to be people-ready is very annoying. I would often run out without wearing a bra even though my boobs were not perky and camera ready and one thing I really do lament is not getting a picture of my boobs when I had the pair I was born with but you do not get to where I have been in life without learning the issues of leaked nude photos so I just have the pics of cleavage that I often showed and no real idea of what the missing boob really looked like besides a faint memory.

Over all, I am happy with my one boob and my prosthetic but I do see maybe down the road going for the reconstruction (one other perk is you can do it at a later date, if you so choose so the window on my reconstructing is not yet closed).

The key is beating the disease, of course, but sometimes, you really want to look hot doing it and it can be hard to look hot when you are lopsided because your prosthetic won't sit right in its pocket. Just something else to manage in the time between.


Lisa Vento Nielsen, MBA, PMP is a speaker, author, career expert and cancer survivor. She has expertise and first hand experience in how to get back to “normal” after illness. Her blogs and writings are read by over 2000 people per week. She created a nonprofit foundation focused on educating cancer survivors on getting their balance after cancer.  Lisa is also a volunteer and ambassador of NYCRA (NY Cancer Resource Alliance), a contributing writer in the 911Cancer Resource website and has recently been elected to co-manage the Awareness for a Cure's post- cancer educational program.

Tuesday, July 31, 2018

Cancer Alert: Breast Implant Associated Anaplastic Large Cell Lymphoma (BIA-ALCL)

Note: This article is an overview reflecting a recent health alert from various medical centers and clinicians about a possible cancer risk resulting from a specific type of breast implant.  If you may recognize yourself to be a candidate or have received a similar notice from your reconstructive surgeon, please contact your physician to get more details.

Since 2011, the FDA identified a confirmed link to a specific type of breast implant and breast implant-associated anaplastic large cell lymphoma, or BIA-ALCL - a form of cancer of the immune system called non-Hodgkin’s lymphoma.  The World Health Organization (WHO) describes BIA-ALCL as a T-cell lymphoma that may arise within 7-8 years after the insertion of breast implants with textured surfaces.  Half of the reported cases were diagnosed with persistent SEROMA, a buildup of fluid around the implant region (see image) and presenting symptoms of swelling, pain, and redness and breast asymmetry of the affected breast.

By 2017, 359 cases of ALCL has been reported thus far and 9 deaths (2.5%) have been identified since the inception of this study where the majority of cases reported had textured implants versus smooth implants.  The very texture of the implant's coating has been said to cause inflammation and scarring that can led to lymphoma, while others attribute the texture to trap bacteria which leads to cancer.

According to the FDA, certain manufacturers have been reviewed and connected with implant-specific risks since 1999 associating their textured implants with ALCL.  Worldwide, approximately 1.4 million breast augmentations were performed in 2015. In the United States, 290,467 breast augmentations were performed in 2016; this represented a 37% increase from 2000.  BIA-ALCL most commonly occurs in patients of a median age of 52 years. The median time interval between breast implant and diagnosis is 9 years and ranges from 1 to 32 years.

Jennifer Cook, a diagnosed victim-turned advocate of BIA-ALCL awareness is promoting a global mission and educational program to support all women who are potential sufferers of this problem. "...there is extreme urgency because this disease can go from being curable with surgery to a disease that may take your life quickly-- because it's advanced...(in) a matter of a few months." In a private interview, she detailed her personal research and her actual experience of self-checking and finding anomalies and unusual feelings that breast surgeons addressed only with minimal concern. Her pro-activeness and perseverance led her to a powerful direction of self-preservation. "it was the biopsy of that lump that led to my diagnosis. I actually had a mass that was diagnosed before the explant ... like most cancers, you know the sooner you get to it, the much better chances you have.  The situation is obviously a huge concern because currently experts are advising women who test negative, that their seromas are benign and that they do not necessarily need to have their implants removed. We feel that this is misleading given the fact that at least five women we know of have recently had negative fluid but positive capsules."

Because BIA-ALCL has generally only been identified in patients with late onset of symptoms, implant removal in patients without signs or symptoms is not recommended.  Clinicians like Dr. Robert Bard (Bard Cancer Diagnostics, NYC) recommends a regular monitoring schedule for any adjustments or shifts in the current stasis of the implant and its surrounding area. "Fluid build up may be easily imaged by 3D sonography although it can be detected by MRI scans as well (9). Under ultrasound guidance, fluid may be aspirated and analysed in real time without rupturing the implant or puncturing nearby arteries."

It has been noted that among operable patients, total capsulectomy with removal of suspicious lymph nodes is the first line of treatment and complete surgical excision (capsulectomy and implant removal) resulted in better overall survival and event-free survival compared to patients who underwent a limited surgery or treatment with systemic chemotherapy or radiation therapy.










9) Bard R, 8th International Workshop on PET in lymphoma, Menton, France 2018

10) ALCL In Women With Breast Implants BIA-ALCL:


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To Reconstruct or NOT to Reconstruct... That is the Question

An excerpt from "​Breast Cancer Survival Guide" by: Lisa Vento Nielsen When you are preparing for a mastectomy, part of the pr...