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.
Comments
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Thank you Jeniren. I' ve been diagnosed 2 days ago and now waiting for Core biopsy results. This information is very useful for us newly diagnosed , thank you. Obviously they don't want to overload you with informations so early and before knowing the full diagnosis but I've been sent home with the words " I'm sorry you do have breast cancer " and nothing else . I am glad I've found this site as soon as I came home,the support I have received from the moment I signed up it's been amazing and reading other women stories it's very helpful. So thank you for this info, I'll keep this in mind.
Have a great weekend .
Fx
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When I was diagnosed in April last year I was incredibly fortunate to be referred to a brilliant oncoplastic breast surgeon who performed a skin-sparing bilateral mastectomy (tumours found in both breasts) with tissue expanders immediately. I finished my 6 months of chemo in November and will see my surgeon again next week to arrange for my changeover surgery to permanent implants in the next month. When looking at me nobody would know I have had a bilateral mastectomy either in my clothing or in swimwear and I have actually had more compliments now than before.
I do feel incredibly blessed with my medical team.
Cheers
Fiona0 -
Wow, you have made such an important point here. Good on you. I had a lumpectomy nearly 2 years ago so this issue doesn't directly effect me. However, I know that If a mastectomy had been essential I would definitely have wanted reconstruction and skin and nipple sparing surgery at the same time. I wonder whether I would have been given that option. Of course I hope I never have to face this issue again but if - God forbid - I do, I will keep this very important information in mind. Thank-you for sharing it.
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Wow, you have made such an important point here. Good on you. I had a lumpectomy nearly 2 years ago so this issue doesn't directly effect me. However, I know that If a mastectomy had been essential I would definitely have wanted reconstruction and skin and nipple sparing surgery at the same time. I wonder whether I would have been given that option. Of course I hope I never have to face this issue again but if - God forbid - I do, I will keep this very important information in mind. Thank-you for sharing it.
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Hi Jeni,
I started writing about my experience with this whole bc journey, but realised that my anger was just rambling on. Four pages, all with FAIL, FAIL, FAIL. Starting with missed mammogram and ultrasound, found out later that previous Radiographer stated that assessment is limited by dense breast tissue (something that has also been addressed in the USA), failed biopsy results, Breast Surgeon doing what he felt best, failure of McGrath nurse to contact me even though my name kept on"poping up" all over the place and give me all information I needed so that I could make an informed choice, Failure to all my medical team to inform me that my reconstruction options would be limited after I have paid thousands of dollars to have radiation. Failed ultrasound of uterus, thank my GP for suggesting I have hysterectomy with ooperectomy, as uterus was not happy, full of adhesions and the size of a six month pregnancy.
I have had what they call a lumpectomy, but really should call partial mastectomy because of what is left. Will have remaining breast reduced, but even that (getting information) was not straight forward.
Thanks for this post, but for people who fall through the big cracks it may be too late. I have met another lady who was diagnosed at the same time as me, she has had a mastectomy, when I asked her about reconstruction, she said she had no idea, no one had said anything to her.
Viv, I live in Regional Victoria
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You have every right to be angry Viv. Your outcome could have been so much different if someone at the beginning of your diagnosis could have spelt out all of your options from the very beginning. This should not be happening.
My friend is also angry and has since been to another breast oncologist who has confirmed that she was not given all of her options. It has affected her emotional well being greatly and it could have been avoided if one nurse or doctor through her journey had talked about known treatment options or the need for a second opinion with a breast oncologist that works with a plastic surgeon.
I can't change what happened to my friend but I'm hoping that I can now do something to ensure that women know their surgical options regarding treatment and reconstruction. The more stories I am given, the more evidence I have to show that this is not an isolated case.
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I agree with all of the above. There is no one person who takes any 'ownership' of you and your situation. I'm was finishing off my radiation therapy and trying to figure out who would give me the Tamoxifen details/prescription. Was it my GP, the surgeon or the Radiation Oncologist (I never saw a Medical Oncologist as didn't have Chemo).
However through this all, and from the very beginning, another close friend who had also gone through early BC provided me with the Book 'Breast Cancer: Taking Control' by John Boyages. It gives so much information about just about everything to do with BC, the issues, choices, terms, reports, pathology, options, etc. For someone who likes to be fully 'armed' with information, I found this book to be fantastic. It allowed me to see I didn't just have to go with the Surgeon recommended by my GP. I instead saw 2 surgeons and went armed with many questions, which allowed me to then choose who I felt was best for me.
I'm now trying to decide on whether to go on Tamoxifen or not. Once again, which medical profession to I speak with? Who can give me the best information and stats for MY particular situation to help me make, what has to be, my decision? I'm seeing a Breast Care nurse tomorrow, so it will be interesting to see how that goes.
Even with all the apparent knowledge I thought I had, I was still unaware of some of the challenges around a Mastectomy (see article 'The 5 things they don't tell you about a Mastectomy').
While we all have to rely on the skill and knowledge of our respective medical teams, ultimately these are our decisions. But we have to have the knowledge to know what questions to ask. Take Control. Be Informed. Question, question, question.
All of this can be hard when you've been blindsided by a BC diagnosis (trust me, I get that!), so have supportive friends and family with you at all appointments. Use your mobile phone to record discussions and appointments. Get second opinions.
This is our life we are talking about, and that's bloody important. We aren't just a number or the next appointment. Make this personal, because it is.
Love to all.
x
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I hope by posting in this blog this week that it brings this message back into the mainstream blogs. Any ladies who have just had a diagnosis should read this.
I wonder who make the messages featured posts?
Viv
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Thankyou I am buying this Book.
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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.0
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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.
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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.
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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.
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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
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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!3
