Up coming Mastecomy update
Hi all, I posted back in February about my up coming Mastecomy and the decisions ahead. Update. Had the surgery Thursday 8th. I had a skin saving double mastecomy with immediate reconstruction direct to implants. Surgery went for 2 hours longer than planned as I lost a lot of blood and my blood pressure plummeted. I was feeling pretty wrecked afterward and had to have a blood transfusion at 1am on Friday, 4am and a third later that day. I have yet to see my new boobs but am told they are looking good. The pain is bearable for day 3 and I'm able to walk around today without feeling wobbly. Hoping the drains come out tomorrow but could be Tuesday. I'm really busting to go home. My blood pressure is back to normal thankgod. Really looking forward to my own bed to recover.
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.Post Mastectomy
Hi! I haven't been on the forum for a while, mainly reading and just the odd response! I did say Oo roo! for awhile, probably a month or so ago now, so that I could concentrate on my own health and well being. Since then I have done the rounds of all the Specialists, some for review and others because of body changes and I have been accepted into the ex-Med Cancer program. http://www.exmedcancer.org.au/ It is coming up three years since mastectomy and the pain and discomfort from the nerves in the last few months has become so intense. It would appear I am suffering from past mastectomy pain syndrome and the Breast Surgeon has said they had found this can come about even as long as 4 years since surgery.............Lucky me, I used to have PMT and now it's PMPS I have included a link here for anyone that wants to learn a little about this. I am also conscious that there are forum users on here who are yet to have surgery and becoming quite anxious about where they are at and not wanting to upset them. It's a little like side effects from treatment, some glide through and others end up with more than their fair share of side effects. My other trauma has been Tamoxifen! My body has accepted it and settled into routine however now I have medication induced complications which means at the next Onc review, due shortly, I will come off Tamoxifen and onto something else! One wonders if the something else will be better or give me a new set of problems - now that is being pessimistic isn't it! http://www.achr.org.au/wp-content/uploads/2007/05/Chronic-Pain-after-Breast-Cancer-Surgery.pdf https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/pain/post-mastectomy-pain-syndrome.html
Mastectomy bra
Hi All, I have just joined and would like to see if anyone knows if there is somewhere I can donate 2 x mastectomy bra's - they were my Aunties - 1 used and the other new - I know that these bra's can be expensive so happy to donate. Any suggestions would be great - I live in Brisbane but happy to post .
Is reconstruction right for me -
I am very new to all of this and the site. I had a diagnosis in May. Surgery within 3 weeks and then straight into chemo in June. I was told by my surgeon because my margin surgery was still not 100% that following chemo, there would be a mastectomy of my right breast. And that included a reconstruction and reduction of left breast. Well, it's moved so fast that now I've finished chemo 3 weeks ago and met the surgeon and plastic surgeon but 2 weeks out I don't know that I can face a reconstruction. I'm older, not super fit, exhausted by chemo and just not sure I can cope with reconstruction surgery. I haven't concentrated on this during chemo as I couldn't do the thinking - I know I should have. I just accepted it because that's what I was told was happening. I'm really not certain I could cope with a reconstruction. I'm struggling but thinking at this stage I'll opt for a mastectomy but really concerned of having a large remaining heavy breast on my left side. Actually, I really don't know what to do.It pays to get a second opinion
My male surgeon recommended a mastectomy and that I should consider a double mastectomy and DIEP as the fat they don’t use gets thrown into the bin! He was not open to looking at other options. However he did refer me to his colleague a plastic surgeon and my out of pocket expenses would be $10k-$20! I found an amazing female surgeon and had surgery 3 weeks ago. She performed another wide excision and mammoplasty. Dr Eva Nagy North Shore Private has done a fantastic job. My pathology came back as cancer free too. So not only do I still have both my breasts I have my $20k as well. So very happy. I had an all female crew and they were upbeat, positive and professional. I received exceptional care. These woman are gifted and amazing Just putting out there ladies that there are options for us
Acceptance
3 rounds of surgery over. Very early detection started with conservation surgery in both. Next wider margins. Still not clear in left. I made the decision for bilateral mastectomy and confidently say this was the right decision for me. Supported by my husband and surgeon. No further treatment. Next year for review etc. I made the decision for no reconstruction of any type. No prosthesis. I wish those well meaning folk around would accept this. The bra given sits in a drawer. Yesterday, a friend said "It will make me feel better if I wear it". Thank you for the loving support from my husband and family, I am who I am, comfortable in my own skin and accepting this is how I am now. I do understand those who want reconstruction. My mother was a widow but said it did effect her and how she felt. We are all different. PLEASE do not make my choice and those who feel the same as less a person because we choose to be who we are now in life. I went to a school reunion on the weekend, drains in my shoulder bag and had a fabulous time. One school friend has made the same decision years ago. Still confident also that it was right for her.
Latissimus Dorsi Reconstruction
In April 19 I had a mastectomy and lat dorsi reconstruction. I am still experiencing swelling/fluid that comes and goes in my back and boob, tightness in my back and general discomfort. I also had a seroma under my arm so a drain tube was put in for 4 weeks, and was removed 3 weeks ago. I guess I’m feeling it’s one step forward two steps back and was just hoping to hear from anyone who has had the lat dorsi reconstruction a while ago to give me some kind of perspective on long term recovery. I guess I’m fine if this is how it will always be, but I would just like to know. Also if anyone has advice on returning to exercise and building strength in the upper body. All I’m really doing at the moment is walking. I had started doing a little gentle yoga then the seroma appeared so I’m a little paranoid about exercising. Any advice would be greatly appreciated
