A 9/11 CANCER SURVIVOR STORY By: Lisa Vento-Nielsen

During the 2001 attacks, I was working downtown at Standard & Poor's and exposure to the toxic dust and air particles are thought to be how I wound up with breast cancer despite no family history of cancer, no risk factors and no genetic component.  I am now living as a cancer survivor and someone who has asthma and other respiratory issues. My husband was an NYPD sergeant, a first responder at 9/11 and is certified with the WTC monitoring program.  The ironic thing is that he has been monitored for years and we expected him to get sick but instead it was I that got cancer. I was not originally signed up to be part of the program, though I should have been since I am a survivor of the event. 

I am glad the WTC HEALTH PROGRAM  is there to help  manage my continued care for breathing issues and monitor my cancer and other ailments that could result down the road (knock on wood, there will be no other things, but we never know). I am not sure if one government program can cover everything and I wish more people who had been exposed knew about the WTC Health Program. Like anything in regards to our health, it is important to advocate and research for your own care regardless of your medical status or diagnosis.  I became a major researcher as part of staying proactive by seeking out all the new cancer therapies and diagnostic treatments because I am convinced that this war on cancer is far from over.  Having read the CDC reports about the many surprise cancer cases and illnesses stemming from 9/11, I needed to arm myself with as much information on what to do, where to go and what's available. They say the attacks were a life changer for us all... being diagnosed over 15 years after that day tells us that we are still being attacked, this time from inside our bodies!

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.
For more about Lisa Vento-Nielsen, visit AFAC Survivor Series (see link)

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