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A MUST READ IF FACING MASTECTOMY EARLY BREAST CANCER DIAGNOSIS 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.
19 Replies
- My family are from all out west and when I found out this was happening I was so angry.I still can’t beleive this happened with a surgeon in Brisbane city.Thank you for keeping this post current. I really hope it has helped many who have early diagnosis but have not been given the right advice.
- Thank you, I wish I'd read your post all those years ago. I was not far behind you but was offered nothing except a mastectomy and silly me accepted that as 'normal'. I was not offered any reconstruction. Unfortunately ladies being treated in regional areas are not given much choice as, to put it simply, the so-called specialists are either unaware or untrained (or both) - or are they just too ignorant as to how the diagnosis and treatment affects women ? Hopefully this post can remain near the top to inform newcombers.
- Hi TanF72, I too have just read this post and to start with I was very concerned with the lack of information to make informed decisions. I’m very glad to say my experience is that I was well informed of options, even felt guided to have immediate constructive surgery. I was diagnosed beginning of Jan with immediate DCIS and had a second biopsy because my contrast enhanced mammogram showed another area of concern. I hope all goes as well as possible for everyone on this journey.
- Information is vital and all options need to be accessible regarding a mastectomy - or any surgery. Just need to be aware that some women, fully informed of the options, choose no reconstruction. There may be many reasons - cost, more surgery, or simply didn’t feel they needed a replacement. I’ve been mono-boobed for 12 years, no regrets. My surgeon was confident of a good result, I could have afforded it but I have never felt at all motivated. For many, reconstruction is an important part of recovery but it’s not essential for everyone and flat has benefits for some. Just as not informing people of their full range of options is not acceptable, assuming everyone wants reconstruction isn’t acceptable either.
- It looks like your post was 10yrs ago and today I get to read it, thankyou. Luckily my surgeon has last week advised me of all that you have mentioned so i feel good about this. The only thing I would add is to request a MRI or equivalent via die injection/mammogram(which I had done after asking for MRI) be asked to have done if not offered. MRI was going to take 4-6wks so Surgeon suggested the injection/mammogram which was done that same day. After asking why i wasn't offered this Initially, it was due to funding. I am at the early stages DCIS with small Invasive breast cancer found and are looking down the lines of a Mastectomy of not possibly double with reconstruction surgery at same time. I will know next week!
This thread refers to how medical system fails to give us options wether is reconstruction, mastectomy and preservation and it is not a to convince the others about the need of a mastectomy based on selective and very limited information.
It is nothing wrong to challenge the status quo based on information though and this is what my story was meant to explain, not who needs mastecomy or doesn't and to compare our tumor sizes and stages. I can quote too the author of the book who told that my case has proven everyone wrong.
Wish you all the Best
- It's important to clarify that although DCIS is considered pre-invasive cancer it's treatment options are: Mastectomy or breast conservation surgery Please refer to a journal written by John Boyages entitled "predictors of local recurrence after treatment of ductal carcinoma in situ" "Mastectomy offers excellent results in terms of survival and local control.... Not every patient with DCIS, however, should be considered for breast conservation. If the disease is extensive enough that a resection with adequate clearance would significantly impair the cosmetic result, or if there are diffuse microcalcifications throughout the breast shown to be DCIS, a total mastectomy is recommended" I had small breasts which meant 3/4 of my breast tissue was going to be removed. I also has high grade dcis with microcalcifications. And yes my diagnosis was not as bad as you. Women are having mastectomies who are at high risk of getting invasive cancer because of the level of clearance that is required to remove the ductal carcinoma. The whole point of starting this blog was to make sure women diagnosed with early breast cancer (dcis or lcis) who are facing mastectomy are aware that reconstruction at the same time as mastectomy is an option. As some women are sadly not told. John Boyages has just put out a new book about DCIS which is very informative and helpful if you have a dcis diagnosis. He explains the types of diagnosis that allow for breast preservation while also reasons for mastectomy for women with DCIS. At the end of the day, regardless of diagnosis - education is the key. Making informed decisions is all that I want for other women who have a breast cancer diagnosis.
DCIS is a pre-invasive stage of BC, this is what you had. If not treated is moving to the invasive stage and it can be called LABC-locally advanced breast cancer and this is what I had.
My stage was 3c to 4a because of the tumour size 13cm x 8cm and 2cm armpit, so following your comparisson things looked far worse.
My type of cancer was HER2+, ER+/PR+ and I had what is called PCR patologic complete response follwiing neoadjuvant therapy. For some cancer types 60% of women have PCR. My chance rating was 10-20% , maybe little but it was an available option before I decide to remove my organs.
In Europe is a great medical campain to decrease the number of mastectomies and advise breast preservation because it's proven with clinical studies that neoadjuvant treatments improved a lot and yet it doesn't happen to the despair of patient-commited doctors.
I had no clue of all these when I was diagnosed, I was lucky to have the book "BC-Taking Control" which gave me enough to start doing more research. Keeping corectly informed and the mind open, this is what taking control means.
It was great that you were able to get this option for treatment and feel comfortable moving forward with your decision for breast preservation.
It is just unfortunate that this is not always an option for the many types of breast cancer diagnosis that women are facing. For me - a 9 x 4cm amount of high grade DCIS through my breast ducts didn't offer any other option.
This is great information for anyone who has a similar diagnosis. Taking control definately means being aware of known treatment options and making the best decision for you. Whether that be mastectomy or breast preservation.
- Dear All, I was diagnosed with breast cancer one year ago, with half breast spread and armpit affected, peaux d'orange, imflamed breast....a 100 percent mastectomy after all the books but... Luckily a true breast specialist was around and pushed for neoadjuvant chemo treatment hoping to shrink the tumour to a level where it can be operated with clean margins or in the best case a lumpectomy. After the treatment I was found completely clean therefore I did not need any kind of surgical intervention. It was sad that even with these results confirmed by biopsies, pet scan some still wanted to remove my breast out if caution? I don't understand why mastectomy is so inflicted as an options, treatments are so good, for some cancer types neo adjuvant chemo alone gives patologic complete response for 60 percent of cases. Why thinking about nipple reconstruction when you can keep your breast? It is a great book on the market in Australia writen for us "Breast Cancer Taking Control", you will find so much information you need for having control of your treatment not inly some surgeon who knows how to cut.
