A MUST READ FOR ANYONE FACING MASTECTOMY EARLY BREAST CANCER DCIS LCIS
I am writing this letter in the hope that the following story will help anyone facing a mastectomy or an early diagnosis of breast cancer.
Women are being diagnosed with breast cancer every day and not all of them are provided with the information required to make informed decisions.
A 42 year old mother of one is diagnosed with early breast cancer at a Brisbane Breast Clinic, August 2013. After receiving her diagnosis from a doctor at the centre she is advised by the doctor to make an appointment with her General Practitioner to attain a referral for a surgeon to have the cancer removed.
Her referred surgeon performs a lumpectomy and then suggests the best treatment option for her cancer is mastectomy. She believes she has all information required to make a decision and elects to have a mastectomy four days later.
SHE HAS THE RIGHT TO A BREAST RECONSTRUCTION AT THE SAME TIME AS MASTECTOMY.
SHE HAS THE RIGHT TO A SKIN SPARING MASTECTOMY.
SHE IS A POSSIBLE CANDIDATE FOR A NIPPLE SPARING MASTECTOMY.
BUT SADLY SHE IS NEVER TOLD!
This is the true story of my friend Lisa. She is currently enduring the emotional suffering caused by not being fully informed of her options.
I now know that this is not an isolated case as I know many more women are having this same experience in Australia.
Six weeks after Lisa's surgery I too went to the same Brisbane Breast Clinic to have a mammogram. I am a 38 years old mother of two, I had no known symptoms or lumps and no strong family history. Lisa's story saved my life. I was diagnosed by the same doctor with early breast cancer and advised to seek a referral from a General Practitioner.
Through this experience I discovered that we currently have surgeons in Australia who are using advanced and accepted techniques like skin sparing and nipple sparing mastectomy that can effectively treat cancer without disfigurement. Both types of surgery combined with reconstruction are helping women preserve their breasts in a way that improves their quality of life after receiving a breast cancer diagnosis.
I also learnt that the REFERRAL LETTER was the key determinant on whether or not I would be informed of my options. My first treatment recommendation from a surgeon was mastectomy with no reconstruction. A breast reconstruction, Skin sparing and nipple sparing mastectomy were not an option at the same time as mastectomy. My second treatment recommendation offered by a different surgeon was mastectomy with immediate reconstruction, skin sparing and nipple sparing mastectomy. How could two surgeons in Australia have such vast differences in approach to the treatment of early breast cancer and why didn't anyone tell me?
I have leant that not all surgeons in Australia are trained nor practice the latest procedures that are widely accepted and used in Europe and America for the treatment of breast cancer.
Receiving a diagnosis of breast cancer is one of the toughest moments a women will experience. You feel compelled to make quick decisions. Hence, I can't believe more guidance is not provided when first diagnosed to enable women to select surgeons based on known treatment alternatives. That's why it is so important to have complete, up to date information and know all of your options before you consent to any type of surgery. You are entitled to ask questions. Your breast care nurse will not tell you about known treatment options, nor can they tell you which surgeon to go to - they are not allowed. But if you want to know who performs skin sparing or nipple sparing surgery ask them and they will tell you.
If you don't get the answers you need on a particular procedure then keep pushing for information. Keep searching for the information you need until you get the information you beleive that you need to make a decision.
On August 17th, 2010 a new law was passed in New York to ensure that breast cancer patients from all socioeconomic groups are informed about their options regarding breast reconstruction. The law mandates that all women are informed, prior to undergoing a mastectomy, about their right to reconstruction and the types of reconstructions that are available, even if this means referring women to another facility or hospital system. This bill went into effect Jan 2011 and already other states are following with similar legislation. Breast cancer patients are being informed of their options and told where to get the procedures they prefer.
Surely, in Australia we do not need to legislate or pass a new law to inform women with breast cancer of their options. It's a fact that in Australia, around 5000 women have a mastectomy every year, but only 6% to 12% of these go on to have reconstructions. This compares with 42% of women in the US and 16.5% in England. We need to ask ourselves - is this because when diagnosed with breast cancer women are not being informed and empowered to know all of their treatment options in order to make informed decisions.
After being throgh this experience I hope that this information will help anyone who is facing a mastectomy. If you are facing a mastectomy get a second opinion and consult with a plastic surgeon as well as a breast cancer oncologist. Every women deserves to know there options and I am disgusted that women will continue to be blind sighted by certain surgeons, nurses and doctors who do not feel compelled to tell women about certain types of reconstructive surgery.
If you are in a remote area of Australia my heart goes out to you. If you are facing a mastectomy it is in your best interest to see a Breast Cancer Oncologist who specialises in Breast Cancer in your nearest city.
Knowledge is power. I wish anyone facing a breast cancer diagnosis all the best and I hope that I can prevent what happened to my friend Lisa from happening to anybody else.
Re: A MUST READ FOR ANYONE FACING MASTECTOMY EARLY BREAST ...
Both my friend and myself were diagnosed with early breast cancer. In my case a very large area of DCIS high grade cancer cells that meant that my breast could not be saved and my only option was mastectomy.
Every diagnosis is different and that is what is so difficult about tackling this situation on your own when facing a breast cancer diagnosis.
My advise from what I experienced is make sure you are seeing a breast and endocrine surgeon. Get a second and third opinion so you know what options you have. Each good breast and endocrine surgeon works with a preferred plastic surgeon. Go and see them and find out what your options will be based on the decisions that you are making.
Keep in mind a general surgeon will not offer a skin sparing or nipple sparing mastectomy with reconstruction. They are not trained to do it. Also nipple sparing mastectomy is not offered by all breast and endocrine surgeons - it is a case by case situation and some don't even practice it.
Something else to know is radiation treatment limits your reconstruction options at a later time.
Get on the bcna website. It is the best way to find women who are going through what you are experiencing. It also has a breast reconstruction group where we share photos and stories based on our journeys. There is also a fantastic website that really helped me with decision making. Www.breastoration.org. Read the education section.
I hope this helps Louise, and if I can help in any other way please let me know.
Take care and stay strong and positive.
Re: A MUST READ FOR ANYONE FACING MASTECTOMY EARLY BREAST ...
I also forgot to mention that I was told by the first surgeon I saw that it was mastectomy without reconstruction due to cancer cells being left behind. I did not have an invasive cancer diagnosis yet he was still insisting that mastectomy without reconstruction was my only option.
You can imagine how surprised I was when I learnt about the progress in treatment options and that I was a candidate for skin sparing and nipple sparing surgery. I also leant that the first surgeon I met did not work with a plastic surgeon and didn't practise the latest in breast surgery because that's what he had been doing for the last 30 years.
I was so angry. Find a surgeon that is keeping up with the new and advanced techniques and don't be afraid to ask a surgeon if they actually do skin sparing mastectomy. Ask them how many they have done. Don't be afraid to question there approach. You want as much information as possible and it is so important to feel comfortable with your surgeon.
Good luck. It's great you are looking for information.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.