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.
My right breast doesn't feel the same anymore ... Is this the new norm post lumpectomy, chemo & rad?
I had my lumpectomy in June 2017 and lymph nodes in right arm removed in July. Chemo stopped at Xmas and rad in March. Now I am just on Herceptin until Oct. I have been noticing changes over the past few months that are more apparent now. I see my breast physio regularly for massage and exercises for the scar tissue in my right arm, side and breast...causes pain and cramping. I noticed a while ago that in the bath my right nipple doesn't get cold i.e. erect. I don't mind a lazy nipple, but have also noticed my areola area feels rubbery and not soft like my left side. My breast physio has me massaging the area to help with pain and breaking down scar tissue. The onc says it's unlikely the scar 'lump' or little ball of scar tissue in my right breast will break down. The breast physio says from her experience, wait and see! Has anyone else had changes such as lazy nipples and rubbery areola ? I'm not in a relationship but wonder if I was would it feel different or strange to someone else. Oh, and my dentist tells me I have no saliva so need to use a special toothpaste and mouthwash...this is from the rad. Hmmm still wading through the collateral damage. Xxx
Young mum diagnosed IDC and DCIS.
Hello! Im 37 and was recently diagnosed in November with early breast cancer - IDC (ER+, PR+, Her2-) and then following my surgery they also discovered DCIS. Plan is chemotherapy starting tomorrow and then mastectomy/recon 4-6 weeks post surgery! Looking for advice on: 1. What to take with me to chemotherapy tomorrow (will be there approx 5 hours as will be trying scalp cooling). Also what do people wear when using ice gloves/boots/cold cap? 2. Any advice on TC chemo and how you tolerated it (I’m doing 4 cycles). 3. Any tips on managing chemotherapy with 3 children aged between 3-7yrs and a husband who works long hours but very supportive. Thanks so much!
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 🎀
Stiffness under arm after lumpectomy
Hi everyone I just had lumpectomy on Tuesday. Doing quite well. Minimal bruising on breast. I need advice please - I've been given exercises to do from breast nurses but have stiffness under my arm. I can't do the exercises because it's a bit sore. Should I just push through gently? Can I give it a gentle massage?Decision
I have been diagnosed a second time the first was DCIS 3.5yrs ago, had a lumpectomy without radiation or chemo. Cancer has now returned in the milk duct 2mm. I am having surgery soon was given choice of total mastectomy or total nipple and aerola removal. His recommendation was mastectomy, I have chosen the later. Now wondering if I was offered radiation after the first surgery would I be in this situation now. Also not recommended for radiation after this current one. Not sure if I have made the right decision.My ALND was a bust..
Hi everyone, this is my first time posting. I discovered my lump in late May while breastfeeding my bub, and am now two weeks post surgery for hormone positive breast cancer. Not the clogged duct I had originally assumed it was. It’s been an awful shock, as I know everyone will understand. So, I have just had a lumpectomy, a LICAP reconstruction on the boob, and level 2 axillary clearance. I’m looking for advice from those who have had an axillary lymph node dissection. I just had my post-op and it was a real mixed bag. Breast cancer out with clear margins (great) BUT seven nodes removed and … none cancerous. While that sounds like great news the problem is that they had biopsied one suspicious node prior to surgery and it had come back positive. So it appears that this positive node was missed. I’m now headed for a second surgery. My question is - for those of you who have undergone ALND- is it normal that they didn’t mark my positive node in any way so they knew where it was during the biopsy or prior to surgery? The doctors are saying they will mark it for the second surgery with magseed and it seems completely ridiculous to me that this wasn’t done initially, when my breast tumor (which was palpable so very obvious) was marked during biopsy. It just seems very slap dash to presume you don’t need to mark as you’re taking everything out anyway. I am wondering whether not marking or targeting when a clearance is planned is just normal procedure and I should just roll with this situation, or whether my hospital or perhaps the surgeon has not done something they probably should have ie mark the cancerous node. I have an appointment on Friday with the surgeon, and I feel knowing others experiences prior to that conversation will give me some peace of mind, or perhaps the gumption to at least push for a second biopsy alongside the magseed. I want to be really sure this time that they are targeting and marking the right node before I go for another surgery. Any shared experiences or thoughts from those who have walked this road ahead of me is appreciated. You are all so brave. This whole situation is very frightening.
Recent diagnosis and new to the group
Good afternoon. My name is Jenny and I was diagnosed with Grade 2 cancer in my right breast on the 17 April. I had lumpectomy surgery on 4 May and a PET/CT scan last week as cancer cells were detected in 1 of 3 lymph nodes and results are pending. We met the Oncologist last Tuesday and due to several risk factors, chemotherapy has been recommended as the next step and I commence on 12 June starting with fortnightly infusions for the first 8 weeks then weekly for the next 12 weeks. Radiation will follow as they were not able to get the level of clear margins with the surgery and no further surgery is possible. Then if all this goes onto hormone blocking medication for 5 years as I'm ER positive, PR negative and HER2 negative. I'm feeling OK negotiating the roller coaster of procedures, tests and waiting for results and adjusting. At this stage, I've accepted what is happening and learning to live my best life with this diagnosis now and in the future. Thank you for taking the time to read to my story and appreciate the insights others can give from their lived experience. Kind regards, Jenny