100 signatures reached
To: US Senate, NY Senate, Susan G. Komen Foundation
Preventative Care for Breast Cancer Survivors who had Mastectomies
As a breast cancer survivor and having a bilateral mastectomy, I have found there is no testing or preventative care because you have cut your percentage down of a re-occurance.
However, this is really not the case. As breast cancer survivors, we all hear the same story, "she was in remission, but it came back with a vengence". I personally do not believe or agree with this and I'm sure many of us patients do not. It's about money and not saving lives anymore. Why is there no preventative care such as, soft mammograms, ultra sounds, MRIs with contrast, CAT or PET scans? Can a doctor feel behind an implant? They only send you for testing if something is wrong. We'll, you don't feel cancer unless it's to late and you cannot feel a lump underneath (behind an implant). There is no way that every breast tissue is removed after a mastectomy, if it were there wouldn't be people having breast cancer with a vengeance after a mastectomy. Also every breast center needs a psychiatrist and psychologist on staff as you are left deformed and can never prepare yourself for it. This is an emergency surgery and psychiatrists and psychologists have long waiting lists and that's only if they accept your medical coverage.
Why is this important?
Let me introduce myself. My name is Elissa Brown and I am a 52 year old breast cancer survivor single mother of two disabled children.
When I was in my teenage years I had already made one of the biggest life saving decisions of my life. I had made the decision that when I am diagnosed with breast cancer, I was going to have a bilateral mastectomy. Until then I was going to be very diligent on my preventative care to find the cancer early. It was just going to be a matter of time for this to happen. My two paternal aunts passed away from breast cancer (1 misdiagnosed for not having it). My mother and her sister had breast cancer as well however, both survivors. We all had the genetic testing, but none of us carry the gene, yet all were diagnosed .
So at the age of 46 I was diagnosed and had my bilateral mastectomy, expanders and implants. As my yearly preventative care came around, I was then informed I am no longer eligible for preventative care. At that point, I had demanded an ultrasound and was not going to take no for an answer. The doctor that did the mastectomy did an ultrasound and found a 6 mm smooth round nodule (not a cyst). However, if it is not a cyst, then what is it? I’m not concerned with a cyst, I want to know what it is. The doctor said he will see me in 6 months. After his response, I decided to seek Healthcare somewhere else. I’m glad I did because the smooth round nodule (not a cyst had to be removed).
Every year, I go to the doctor for my yearly check up and they feel my implants and tell me I am fine. I have a huge problem with this. The doctor cannot feel behind the implants. To tell me I that I am cancer free is a lie. A doctor can’t possibly know this without testing if you have implants. You hear EVERY DAY, “well she had breast cancer and was in remission but now she is dead”. She probably wasn’t in remission. She didn’t get tested until it was to late. Problem is you don’t feel cancer until it’s to late. How many times do you hear this story? A LOT. Maybe something needs to finally be done about it. I would rather have the Radiology in an MRI and find the cancer before it’s a problem, then to have an MRI to find out I am dying. People don’t have a mastectomy to die from breast cancer, we have it to save our lives. However, not being entitled to life saving tests yearly just like everyone else, is actually taking my rights away. If I have medical coverage, even if you don’t; you should still be entitled to the same testing everyone else is.
Stress causes Cancer. You know what is stressful everyday? Wondering if you have cancer the past 4 years, but don’t know because you have no rights to testing like everyone else, because you cut your percentage down by having a mastectomy. Well obviously not if everyday we are hearing this same thing “she had cancer, was in remission, but we caught it to late this time”. Ask yourself; if you, your mother, grandmother, daughter, granddaughter fought breast cancer and had a mastectomy, would you be upset if they weren’t allowed the medical care they deserve and pay for? Would you be upset if they could have found it sooner, but didn’t so now they will suffer in pain till they die? What about the loved ones watching them die a slow death everyday from cancer but they didn’t have to, because a test would have found it earlier.
Also every breast center needs to have a psychologist and psychiatrist on staff. Mental health providers have long waiting lists or do not accept your medical coverage. Everyone who is having a surgery that deforms you, you cannot mentally prepare yourself to take your bandage off. Transgenders can’t have their reassignment surgery without seeking mental therapy and having approval. Why are cancer patients held to less standards and this is actually emergency surgery to save your life.
Something urgently needs to be done for cancer survivors preventative care.
Physical leads to mental and mental leads to physical. So how does one heal if you cannot care for both issues?
I ask you to make this issue your utmost priority and think of how children can actually have their parent or a spouse can have their spouse or a parent can have their child for many more years.
You can fix this and make this happen.