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.
Do I stay or do I go?
Not your average post. Originally a backpacker from the UK, been in Aus 5 years and have moved onto a work sponsorship visa with my employer. I live in a very remote area and it is a 4 hour flight to my nearest 'treatment centre'. Two weeks ago it was confirmed (via biopsy) that in my left breast I have a 2mm invasive mass, and 10cm of non invasive DCIS. I had a contrast mamo and PET scan (no result yet) and scheduled for an MRI on the 6th June, and appointment with the surgeon to discuss options on the 10th June. My breast dr said the surgeon will recommend a mastectomy due to the large area of DCIS. Possibly chemo, radio and hormone therapy. They are also talking about what I want to do with my eggs. I am so scared, and I am not sleeping. I am only 34 years old without children. I don't know what to do, do I stay here in Australia and undergo the treatment recommended and stay near the hospital with the mother of a friend (who has also had breast cancer and has said she is more than happy to support me through required treatment). I love my life here that I have built over the past 5 years, and I love my job. I am scared I will lose my job with the next few months of treatment coming up (very little can be done remotely), my visa is tied to my job. I may get deported mid way through treatment? I dont know? I know I should speak to an immigration lawyer but I am already inundated with administration from cancer. My family back home are very supportive and will support whichever decision I make. They and I am also wary of the health care system back at home (which isn't in great shape). If I go home, I will take all my diagnosis letters and scans, but I will still have to start this process again from the start and basically be told twice I have cancer and they want to chop my breast off. I wont be able to get a job due to appointments and treatment, and wont be entitled to benefits as I haven't paid tax in my home country for 5 years. Its not just cancer anymore, I am not scared of the cancer as such as my whole life here being ripped away from under my feet. Sorry for the long post. I just don't know what to do for the best. Either way, I need to stay here until I have the full picture and know what the surgeon wants to do.
2nd operation DCIS
Hi all, Was diagnosed in Feb this year with high grade DCIS, 3 small tumours. Lumpectomy 3 weeks ago. Pathology report came up with not clean edges. The surgeon said I have two options, do another re-excision with most likely radiotherapy and endocrine therapy, or mastectomy. I have a family history of breast cancer. Has anyone been through this desición before? What was your experience like? outcomes? Thanks for sharing
All Clear happy and healthy, BUT pre admission tomorrow for Mastectomy/Recon struggling mentally..
To say its been a tough week, has been an understatement even after a recurrence multiple surgeries and treatments over the past 6yrs. As much as I knew it was coming, I wasnt prepared for the call from Hospital for my pre-admission tomorrow. 19 months on from a lumpectomy, 13 months post chemo, happy, healthy reclaiming my life. The mental torture has been relentless this week, knowing I'm WELL but in light of a recurrence don't gamble Melinda, do a Mastectomy/Diep flap reconstruction. Even knowing deep down its the best thing I could do, I still struggle with the loss, the prevention, the surgery. Its always been my struggle getting to this decision now it is here, I don't feel any different, I'm still struggling with it. I can be honest, I'm scared, petrified of the actual surgery, the recovery, the loss, the end result. Struggling with feeling Im damned if I do, damned if I don't. Maybe I'll feel different once it's done? Ive looked at it every which way possible, and its just so mentally challenging when I know Im so well...the tears havent stopped. I will also be mostly alone through recovery as my kids are going to live with their Dad as its easier for them to get to Uni and my baby in VCE. Whilst its the right thing for me to do...am heartbroken to not have them with me loving and supporting me. My Partner lives an hour away, due to work and life will only be able to manage at different times. Another reminder of traveling this road nearly 7yrs without my Mum, lucky to have my Dad who wants to help but is 77. Inspite of all this, knowing how incredibly lucky am I really!!! how dare I be sad, upset, angry, so why do I struggle, don't know how to resolve this for myself?? I've always been proactive, positive and upbeat...hoping its purely the fear thats getting in the way...
3rd Op.
I had 1st op March. Part mastectomy. To remove 2x cancerous tumours. And a bit extra tissue. Told confident all goodo.No. 2nd op April. Re-excisision. Extra tissue. Because one margin not clear. Took more tissue.3rd No clear margins. Full mastectomy now.Oh my. Reconstruction. Told. Talk about it later. After mastectomy...and pathology....
Lumpectomy vs mastectomy
Hey everyone, I finished chemo on the 4/4 and right after the Easter long weekend I was kind of ambushed with an early surgical appointment to sign the consent forms for surgery. I didn’t have my normal support person (my sister) with me and I don’t know how I feel about my decision. To give some context, when I was first diagnosed in October last year my opinion regarding treatment was to go hard and fast and just kill this damned thing so I can move on with my life. The surgeon wanted to initially do a lumpectomy and I refused and asked for a mastectomy. Then on a subsequent appointment once I had gone and done some research I asked the surgeon if he wanted to do a lumpectomy because I was going to have radiation and he said yes, that is would protect my lung tissue to keep the breast tissue. I then asked if I could have a mastectomy after and he said yes. Then in my previous appointment before Easter he said mastectomy and not lumpectomy, and there was a bit of confusion (and I felt I was being gaslit, not a term I use lightly) as I reminded him of what had been discussed previously and he told me I wasn’t in the right frame of mind to be making decisions (I am struggling mentally but with other issues, not the treatment plan as I understood it). So when I got to this new appointment, I tried to explain what had gone on and asked what my MDT had decided. The registrar I saw said they recommended a lumpectomy and clearance of 9 lymph nodes. The way he explained it to me was that it was better they take the most minimally invasive path as I wouldn’t likely get skin and nipple conserving mastectomy. That it was better to take a little with the option of more later rather than taking it all when it’s not considered necessary. I signed the forms at the time after stipulating that if I wanted one later that they could do that and he said without cancer it would be a low priority but yes. A week after this and I don’t know if the decision is sitting right with me- those who have had the lumpectomy and axilla clearance, how did you feel? And did you need to go back later and have revision surgery to take more margins or have the full mastectomy?
Radiotherapy after skin-sparing mastectomy & diep-flap-reconstruction?
Has anyone had radiotherapy done after their skin-sparing mastectomy & diep-flap reconstruction? Did it cause any issues with the breast flap? like hardening or shrinking? I had no lymph node involvement and had clear margins. It was decided in a team meeting with radio oncologist for me to have 5 weeks of radiation on the flap, due to younger age, size of lump (ILC-5cm) - although it was 2 bits lumped together into one and grade 2, pathology of the sample found focal-vascular-space-invasion, which hadn't spread anywhere outside the breast, but radio oncologist thought it could spread to lymph nodes in the future. Does this warrant radiation? I am on zoladex and ai. I have an appointment with the surgeon to discuss further but wanted to see if anyone has any suggestions or similar experience?
Share your views: Artistic tattooing of breast-cancer mastectomy scars
Hi everyone! Following up on my previous post, I’d like to invite you to participate in a PhD research study being conducted by Tina-Maree Newlan of Charles Sturt University on artistic tattooing of breast-cancer mastectomy scars. The study aims to investigate the experiences of women who have had breast cancer mastectomy surgery and their experiences with making choices and decisions to decoratively tattoo mastectomy scars and what do those experiences mean for them. This request has been reviewed and approved by BCNA, and the project has been approved by Charles Sturt University Human Research Ethics Committee (Protocol number H24311). You are eligible to participate in this research study if you: are a women aged 18 or over have had an early breast cancer diagnosis, breast cancer mastectomy surgery and completed, or are in the process of completing, professional decorative artistic tattooing of mastectomy scarring Would like to participate in an interview and are English speaking sufficient to participate in an interview What does the study involve? Eligible participants would take part in an initial 60-minute interview (via Zoom or face to face, depending on geographical location relative to the Gold Coast) and then a subsequent second 30-minute interview around two months later. How do I take part? If you are interested in participating in this study or have any questions, please contact the researcher, Tina-Maree Newlan at tnewlan@csu.edu.auA 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.
