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.
Belly button after DIEP
Hi Network, I’m 8 weeks post-mastectomy and DIEP reconstruction following a DCIS diagnosis. Overall, recovery is going well—except for my belly button. I developed an infection 10 days post-op, which landed me back in the hospital, and since then, it just hasn’t felt right. It pulls and hurts when I move, especially on one side. I’ve raised my concerns with my surgeon, breast nurse, and physio—they all say it’s normal. But you know that feeling when something just doesn’t seem right? I’m reaching out to see if anyone else has experienced this—does the belly button just take longer to settle during recovery or should I get another opinion? Thanks in advance x
Early Breast Cancer Treatment Decision
Hi All, I recently was diagnosed with early breast cancer (stage 1, grade 2, HER Negative, Estrogen & Prog positive, no lymph nodes involve) three weeks ago I had a double mastectomy with tissue expanders for reconstruction. I now need to choose my treatment for post surgery. For my particular case the percentage for survival purely doing the double mastectomy surgery alone is 95% when I add hormone blocker treatment it adds another 1% so 96% total which has been recommended by my oncologist to take which I will. I have been also given the option to decide if I want to also do chemo or not, the percentage benefit for my specific cancer is less than 1% at about 0.3% (so the percentage still stays at 96% survival) Is there anyone with a similar case to mine and what you decided? Or if it was you what you would do? My immediate thoughts are for a 0.3% benefit that going through 6 months of chemo with everything that comes with that is perhaps not worth doing it? The other thing I will point out is if there are any tiny microcells left in my body anywhere that hormone blockers will stop them dividing and growing, but chemo would actually kill them. Bearing in mind there is no guarantee either way that reoccurrence will or won't happen. Thoughts?
Post mastectomy swelling or seroma?
How did you guys tell the difference between post surgery swelling & seroma? I’m 3 weeks post mastectomy and have swelling well beneath my incision, it kind of looks like my boob is trying to grow back. I saw surgeon last Friday & he said it was potentially some fatty tissue that may have been left behind. My chest also feels quite tight, but I also have some cording. I’m not sure if the tightness/swelling is just normal for this stage of recovery or if I need any treatment to drain potential seroma. Should I contact BC nurse or see my GP or wait & see in coming days??
Experience with suction/negative pressure dressings
So last Thursday I had a bilateral "Goldilocks" mastectomy - it's Tuesday now, so today is the fifth day post-op. I had three nights in hospital and was discharged on Sunday, and every day has felt like a battle with these dressings. It's a system called Prevena that puts a foam layer over the sutures, and then a plastic dressing over that so that the attached pump can then apply a gentle vacuum. Even in hospital, every day has brought patches to the edges to try and maintain a seal. It holds if I'm sitting down but the moment I stand up, the pump goes off, and I hear a little whistle from a new leak somewhere in the dressing. It's getting pretty frustrating - I can't shower without it going off and even just doing a wash at the basin triggers leaks. And forget going for 'gentle walks' - I want to, but not if the dressing's going to leak the whole damn way. I'm due to have them removed on 9 December, so six more days with them. If I thought I was happy to have drains removed, that'll probably be nothing compared to the joy of getting rid of these dressings. Has anyone else had experience with suction/negative pressure dressings like this?Total left mastectomy vs expander/implant?
Hi everyone - I’m newly diagnosed and have found BCN hugely helpful and reassuring. I have bilateral early cancers - invasive ductal (left side) and invasive lobular (right side). ER + PR + HER2 -.I believe ‘low grade, slow growing’. My treatment recommendation is: left side mastectomy, nipple/skin sparing with expander then later implant and right side lumpectomy. Followed by radiation and letrozole. Surgery scheduled for 22/11 at Chris O’Brien Lifehouse. The choice I have is left side total mastectomy or the reconstruction? For context, I’m middle aged, slim/small breasted and physically very active. Apart from the obvious surgery and post operative worries, my other concern is around the possibility of spending many months with ongoing breast related issues. Wondering if any of you have had a similar experience….and any thoughts/advice you might have? Thank you 🎀
Mastectomy /post surgery pillow
Hi all, I have a brand new mastectomy pillow that I found really helpful that is basically as new. I would be really happy to post it to anyone that is about to have surgery at no cost. I just can’t bear to throw it away and would be happy for it to help someone else! Just dm me with your address if you would like it. I’ve attached some photos x
Scar Management for anyone finding them taking a long time to heal, red, bumpy, itchy...
Hey All, I just wanted to say in the past I haven't really worried about my scars from surgeries, however since doing my Diep Flap recon in February and subsequent revision surgery in July, I had my abdominal wound reopened. It was red, itchy and bumpy so thought I'd have a consult with people who specialise in scar management. Thanks to my friend @nikkid for the contact, I went today. I know in my post op visits there really wasn't much talk of scar management at all, so thought I'd pop a post for anyone who is finding them annoying red, itchy, bumpy and wanted some help with it. They use silicon dressings that I wear at night only, I then massage over 4-6 weeks in circular motions, (even an electric toothbrush) to break up the scar tissue about 4 times a day. My scars are so annoying and irritating,so that's why I decided to get some extra help. So I have a great recommendation in Melbourne for anyone needing that. Big hugs Melinda xo
