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
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.
DMX or Lumpectomy
I was diagnosed in September 2023 as Hormone negative HER2 +. My first thoughts were DMX & get rid of it, surgeon said "no I needed chemo first" which caused my first & only meltdown pretty much all day if I was on my own as I wasn't in control. I finished my chemo on Thursday just gone & have surgery booked for 22nd Feb. I went back & saw surgeon on Tuesday just gone to discuss options, she has now said "it's my choice what I want" as my daughter made a point of bringing up I had my head set on a DMX. I'm now conflicted as to what to do, I'm swinging every few hours between the two. I don't have access to a McGrath Nurse & have relied on the support from family & work colleagues so far. My chemo nurses have been great but now can't help as it's my decision & not their speciality. Oncologist has said only 1% chance of recurrance if clear margins from the lumpectomy but then more chemo if not clear, I don't want to do that again even though it wasn't as bad as I was expecting. I will be continuing with Herceptin until September this year. Sorry for the essay.
pins and needles with some numbness ? just had surgery
Hi everyone, I just come through surgery Wednesday just been (8th Nov) for a lumpectomy and lymph node clearance, I'm home now with a drain, and experiencing a lot of pins and needles and numbness, I've been unable to gain any help as its the weekend, from medical people, I've been just directed around in circles, so I thought I would jump on here and ask, is it normal? my 1st surgery I didn't come home with a drain (and it was a totally different medical team of people) , so this is all new to me. i noticed that the back of the arm was quite red too? it seems to have gone now. my follow up app isn't till Tuesday this coming week, gotta love weekends where its much harder to gain medical advice, so cheer's for your input, thanks I am trying to move the arm as much as possible as well,Sore lump after surgery
Hi everyone One week after lumpectomy (removal of 5 smallish carcinomas from right breast and one DCIS from left breast) I had the bandages removed by my surgeon and she noticed I had a very large painful hard lump in my right breast which was a result of the surgery. I am looking for advice on how to treat this. I'm pretty certain she said to massage it, but that does not seem to be making any difference. Has anyone else had the same thing happen? What did you do and how long did it take? Thankyou!Nerve Pain before and after surgery
Hi everyone! Before I was diagnosed back in April, I'd been experiencing nerve pain and thickening down my left side (cancer side), mainly the arm into my hand but also down my breast, ribs and into a dull ache in my leg. A few weeks after this was when I found my lump and was then diagnosed with cancer. I had a lumpectomy in May and the nerve pain disappeared for 3 months whilst my surgery healed (I had a nasty infection that delayed the healing process) Since its been healed completely and I've been going through chemo, the same nerve issues have come back. My oncologist seems to think it may be mild lymphedema (I only had 3 nodes removed- all clear) and has referred me to see the physio next week but I'm perplexed as this also happened before my diagnosis. It doesn't bother me a huge amount but obviously any ache and pain in that area now panics me a bit although my oncologist doesn't suspect anything suspicious due to clear margins/no node involvement/tumor removed/smashing chemo. Has anyone else experienced anything like this? Could it be that my original breast tumor was pinching a nerve and now the scar tissue filling that void is doing the same thing? Stay strong xDCIS and endometriosis- HELP!!
Hi everyone, totally new to this amazing network and this whole new world of cancer & DCIS! I am looking for advice to to hear from ANYONE who may have been through something similar to what I am going through. two months ago I found a lump in my right breast and the GP sent me off to the experts. Biopsy’s, ultrasounds, MRIs, mammograms later it’s DCIS. I am run through the options and go into for a wide local. During this surgery they find a 0.8m tumor and remove and take wider margins. However they do not come back clear, so the following week I go back in for some more “housekeeping” and wider margins. I was told yesterday that those margins are clear, hooray! The direction now is that they want to do 5 weeks of radiation and put me on Tamoxifen for 5-10 years. HOWEVER, I have endometriosis and have been told tamoxifen will heighten my endometriosis. Along with the standard early menopause (should say I am 39 years old with one kid, happy with one child, based in Newcastle NSW). As this has already been such a whirlwind, I am trying to find resources or people who have had to go into early menopause - did you get endo side effects? Or if you already had endo, did you opt to have your ovaries etc removed to stop any side effects/pain? Or did you opt for a mastectomy instead? Soooo many questions! I am discussing with all doctors and specialists but haven’t ever spoken to another person in my position. Please PM me or comment if you want to share your experience thanks for listening 😊
