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Jeniren's avatar
Jeniren
Member
12 years ago

A MUST READ FOR ALL WOMEN FACING MASTECTOMY, EARLY BREAST CANCER, DCIS, LCIS

Hi ladies After completing the final surgery of implant change over after a double skin sparing and nipple sparing mastectomy I am posting a letter that I have sent to many breast cancer organisations that is close to my heart and needs to be continued to be shared. As all of us get through this journey it is so important to share our experiences that will change the way for women diagnosed with breast cancer. _____________ 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 5,000 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 through 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.

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  • Jeniren's avatar
    Jeniren
    Member
    12 years ago
    Hi Gemma Please get a second and third opinion if needed. Also make sure that the surgeons you are seeing actually perform nipple sparing skin sparing mastectomies. Are they travelling to the latest conferences abroad to keep up with the new types of surgeries that are being performed? Some very established surgeons with really good reputations don't practise it. If you don't know who to go to contact a breast care nurse attached to each major hospital in Canberra. There is usually a support group (attach to each private breast diagnostic centre who are there to assist with decisions like this. I just googled there is a group called bosom buddies who you can ring. Ask specifically about nipple sparing and who is doing it in Canberra. Otherwise the breast care nurses are not at liberty to give out the information that you want. Also make sure that the oncologist you are seeing works directly with a plastic surgeon. For instance, my oncologist only worked with one particular plastic surgeon and hence do a lot of breast reconstructions every year. I have not been tested for the gene however when given my diagnosis of dcis early breast cancer was told leaving the skin (skin sparing mastectomy) has a 1% risk of return. Keeping my nipple was a 3% risk of return in the dermal layer. I hope this info helps, if you can't get what information you need keep going until you are satisfied. Let me know if I can help in any other way and good luck. Jen
  • Gemma's avatar
    Gemma
    Member
    12 years ago

    Wow I only joined the network a couple of days ago and these are the exact things im questioning. My specialist told me he recomened a both breasts and nipple removal. This has been the most terrifying devistaing part for me to come to terms with. Not only am I faced with having my boobs taken but they want my nipples! He told me a story of someone who didn't and she got cancer in the left over cells. Though I read somewhere else ther is no guarantee they get all the cells anyway. I want to know if I have my breasts and ovaries removed whilst keeping my nipples surely this puts me in the same risk category as every other woman. 

    Thanks for posting this information.

     

    Gemma 

  • mona63's avatar
    mona63
    Member
    12 years ago

    Although i dont have experience with mascetomies; if i reflect on my own experience; my surgeon drew a neat little diagram and that looked fine to me; but there is a real issue of being so focused on removing the cancer that really at time of consult/operation i was more focused on adjusting to the diagnosis/ making sense/ shock and the rest...and this is when most of us may not think about how many operations/ procedures/appearance/ issues...however when i went back recently to my surgeon and thanked her for her obvious care and skill --hardly noticable that ive had anything done--she said 'it makes the world of difference for (emotional ) recovery...

  • VivW's avatar
    VivW
    Member
    12 years ago

    Hi Mona, yes this should be a permanent featured post.  Depending how many other posts are made, it very quickly goes to the back, lucky to be seen.

     I also think this information should be in the initial information we receive either from a breast care nurse if you are lucky enough to have one or should be with the BCNA pack, with exactly the same wording...  You have a choice.....

     

    Viv

  • LouiseTurner's avatar
    LouiseTurner
    In Memoriam
    12 years ago

    Hi again,

    I have recently been interviewed for a upcoming media story and have again mentioned this subject. If you look (and I am sure you have) you will see the media touch on the topic every few years in Australia. I personally believe its the breast surgeons who hold the key and are the keeper of knowledge for their patients. But I also have sensed politics is involved when it comes to who should  or shouldnt be performing the procedures and how the health system can support more of these proedures. Like you say it is all referral based, but if women know they can request referrals to who ever they like then we are a step in the right direction.

    This is where I believe an organisation like BCNA is essential. I think BNCA has an opportunity to reach and support all women in this situation  a bit more than is currently happening. I understand that there are competing priotities, which is why I just keep chipping away at what I do looking out for any opportunity to put it out there.

    To answer your question about have the resources  on BCNA website been updated? no. But BCNA together with Cancer Australia have developed an online resource that does mention immediate procedures.  This was launched October 2013. It is a fairly comprehensive resource, but nothing new really http://canceraustralia.gov.au/affected-cancer/cancer-types/breast-cancer/treatment/breast-reconstruction.

    The trick to information resources though I believe is again the referral. It doesnt matter how good available information is, if you dont know about it (or that you need to know it), or how to find it, it cant help you.

    Good luck in your quest

    Louie

     

     

  • Jeniren's avatar
    Jeniren
    Member
    12 years ago
    Hi Louise Firstly thank you for keeping this subject alive. I haven't been on bcna for some time and went through some of your posts and your question on when or if you were offered reconstruction at the same time as mastectomy is helping keep the subject matter alive. I've written to hospitals, doctors, I've written to plastic surgeon society's, media outlets, journalists etc and have been met with the same sort of response. No one knows what the answer is to this problem. Breast cancer oncologists - cannot advertise what they can do as it is frowned upon in the surgical world and obviously there are many cases where immediate reconstruction is not an option. Some oncologist are very established and successful surgeons but they are not trained in certain types of surgery and do not work directly with a plastic surgeon. Eg skin sparing mastectomy Plastic surgeons - it's really in the hands of the oncologist surgeons to educate the gp's. They hold conferences and provide information but it is a limited audience. It doesn't cover everyone. I'm at a point where I think I'm going to write and email to every GP I can find to ensure that they know about the types of options that are available at diagnosis. Did the bcna update their information guide and include information on skin sparing and nipple sparing surgery options?
  • fionaf's avatar
    fionaf
    Member
    12 years ago
    This was a very interesting read Jen and extremely important that women should know of choices. I consider myself very very lucky that I was referred to the Sydney Clinic and one of the brilliant surgeons that were referred in the research article Louise mentioned. I had IBC in both breasts and my breast surgeon offered me immediate skin sparing ( couldn't save nipples) bilateral mastectomy with expanders, this was done in May 2013, followed by 6 months of chemo finishing in November, a break to enjoy summer and have just had the exchange surgery for silicon implants done in March of this year. Also as my breast surgeon is an oncoplastic surgeon he did both my surgerys so no separate plastic surgeon needed. Due to this I have never felt like I lost my breasts and from the outside people would never know that I had a bilateral mastectomy. After reading and hearing the many breast cancer women's personal stories and blogs it would appear that where you live and who you are referred to is how decisions are made but it is VITAL that women ask more and be given all the information available without feeling intimidated and nervous about questioning what else is available. In my situation I knew within the first minute of my initial consultation with my surgeon that I had I got one of the best and with a calm reassuring manner I never felt anything but confident with the decisions made. I know follow their research with interest and I wish and hope that all women are able to access as much info as possible in regards to this.
  • mona63's avatar
    mona63
    Member
    12 years ago

    as much as the shaving issue engaged me--if that can be featured then i hope your writing not only gets featured but creates some discussion/policy/ advocacy in bc circles

  • mona63's avatar
    mona63
    Member
    12 years ago

    This is a very powerful letter and good on you for advocating -

    as you delve into this area there are all sorts of delimas--and someone said that all the choices come with thier own difficulties.  I like forums but it only takes one person to have an experience which can impact on many--and can cause fear as well

    i like the sentiments of trusting your medical team--very important but i cant help but wonder if some advice is due to a range of factors and some of it based on fear, what is seen as standard practice, financial gain and the rest of it

    you mention lcis--a family member has and seeks review of this yearly--and so far for 5 years no change--and yet other women's advice has been mascetomy; and of course the latest about dcis that ive read is that it probably shouldnt be treated by  chemotherapy and mascetomy but again monitored...

    I find some of the casualness about breast removal a bit confronting and your post raises important issue about recovery as a whole person