Making The Hard Decisions
BreastScreen Qld used mammogram and ultrasound guided biopsies to diagnose a cancerous lump in my right breast close to the chest wall which was removed by surgery on 17 May 2019, all went well. When I went back about 10 days later for the post-op they said they did not get it all as it was unable to be seen on mammogram or ultrasound and I needed to have an MRI and he wanted to check both to make sure there was nothing else lurking in there. I was booked for surgery on 13 June with the results to be looked at prior to that, if nothing then he would take out the bit missed plus a margin using the current scar. I heard nothing about the MRI and when i arrived for the surgery i was told that my file said that it was going to be what had been discussed, so I thought great and was relieved knowing that one more surgery plus the radiation and possible chemo and we are on the home stretch. They were running behind so i waited 2 1/2 hours when the surgeon came to me and described what we both had discussed and i commented that it was great the MRI had showed nothing else, he said he had not seen it but one of his junior doctors had so he went to have a look at it, he came back and said he was sorry but he would have to cancel the surgery as there was a line (mass) in my right breast and he would have to take my MRI pics to the panel the next day and see me on Monday to discuss their findings. I had been very positive up until then, I was angry and cried myself to sleep that night and the next day was inconsolable, until I decided to get off the couch and get on with my life and not let them beat me. I was not called with a time for Monday, so Monday morning rang up to check what time and told no appointment had been made and when I explained they made me first cab off the rank for the clinic. Surgeon showed me the mass which they say is DCIS, I have the option of just getting a mastectomy next Thursday or having an MRI guided biopsy on Friday to see if the mass is cancerous or not and then decide whether to go for surgery to take out the bit they were going to do with a bit more then chemo and radiation or straight to mastectomy and no chemo and radiation. Does anyone have any wisdom or insight into my situation to help me make this decision? I am so confused and upset by them upending my world.
Booked for lumpectomy and sentinel node next Monday, any advice, tips, welcomed
Dear all, After 6 months of being ' chemoed'…. I am due for breast conserving surgery, next Monday. I have to have Node scan and dye, then hook wires stuck into me, then surgery. I am wondering if anyone has any tips, tricks or advice that they would share with me, for the next stage of this 'journey' round 2! How long is recovery, how many weeks of work ? What bra do you wear? Exercise? Driving? Cheers in advance ladies.
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.
What to do?
I had a lumpectomy mid January and all went well. Clear margins, no lymph involvement, hormone positive, Protein negative, 19mm. BUT grade 3. the oncologist recommended 4 x AC followed 4 x Taxol dense dose followed by 16 ray treatments, followed by hormone. I was hoping to avoid chemo and my surgeon felt hormone treatment was my best option. So I am shocked to say the least. I am considering the Presigna genome test to help me make the decision about chemo. The oncologist says chemo will give me 4% more. Any advice appreciated. Have you tried the Presigna? have you done similar treatment?
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
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.
Stay in hospital after surgery
Can someone tell me how long you are in hospital after breast cancer surgery. I am currently having chemo, which I finish in December, and will then have my operation (two lumpectomies in one breast). This will be followed by radiation at some stage. I wasn’t sure if it was a fairly short stay in hospital, or if it could be at least a week. Appreciate any info.
Post Surgery, Mastectomy and Reconstruction Bras
Hey All! I wanted to share a wonderful lady I had an appointment with today, her name is Genevieve Gort and her business is Breast Care Victoria & Surgical Garments, she is a Registered Nurse but now does bra fittings for Breast Cancer Women. She works in a studio at home in Port Melbourne. I have to say it was such a wonderful experience to get out of this stupid Amoena Bra!!! and into a much better post surgery bra! she liaises with Surgeons and Plastics Nurses to try and get this different compression surgical bra in place. It zips up at the front with hooks and eyes on the shoulders. I purchased about 3 other types, they have NO underwire, 1 cream, 1 black and a Rose Coloured one, very feminine looking. They ranged from $78-$90 each, but so worth it! My health fund also paid a benefit of up to 4 garments per year up to $150, so I was out of pocket approx $160 for 4. They are so comfortable and I feel so much better! She is extremely lovely, and loves her job!! So I highly recommend this lady in Melbourne for post surgery, mastectomy and or reconstruction Bras! She has a web site but needs to be upgraded. Hugs Melinda xo
It really hurts around the site of my drain tube scar?
Hi everyone, I have pain that seems new (? Last fortnight or so) all round the area where my drain tube would have been, internally. If that makes sense. If you visualise the line the tube would have made from the skin entry point up inside the body about 10cm and into the side of my boob - it hurts. It’s nearly 12 months since surgery. The drain scar tissue is lumpy but looks fine in its own special way. But if I press around the area even gently, I get quite sharp tender pain. The lumpectomy scar doesn’t even hurt this much! My beautiful breast care nurses tell me it’s normal to still have pain this long after surgery and it just takes Time (that most excellent healer). So does anyone else have this kind of sharp tenderness around their drain site a year later? I know pain is kind of subjective, but yknow! I’m worried there’s something wrong or maybe the pain has ramped up as a side effect of Zoladex. Just seems too weird that it’s so tender still. H x
