Indecisive
I am new to this group and beginning my journey. It is very reassuring to feel I can learn from other members experiences. Knowing that everyone’s situation is different and I am beginning to appreciate that there are a number of decisions ahead of me regarding treatment options. i was recently diagnosed with mass-forming, high-grade DCIS of the left breast. The mammogram detected a single 14mm lesion and an ultrasound detected a corresponding mass. So I understand that this is considered small in size. No hormone marker testing was performed on the biopsied tissue. I have been scheduled for a wide excision next week and my surgeon has given me two options: either have a sentinel lymph node biopsy at the time of the surgery, or wait until the histopathology report is back (after surgery) and then later do the sentinel lymph node biopsy if any invasive cancer is detected. I am having difficulty making a decision. I appreciate that if the biopsy is performed next week (whilst the excision is performed), I only then have one anaesthetic but if I choose the second option, I may avoid unnecessary loss of lymph nodes. Wondering if any other members diagnosed with a small high-grade DCIS have been given this choice and if so, what did you decide?
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.
5 months since diagnosis
Hi, I have posted a bit of my story here but thought I'd post a more complete summary here for posterity. I turned 50 in Jan24 and moved from Melbourne to Adelaide in Mar24. Shortly after arriving I got a letter from BreastscreenSA offering free screening and basically ignored it, Then I started a new job in Aug24 and there are BreastscreenSA flyers on the doors in the ladies' loo and those faces kept looking at me everyday so in Nov24 I buckled and book in for a screen in my lunchbreak. I was in and out in 10 minutes, it was a little uncomfortable but not painful. I thought nothing more of it until I got a call 3 weeks later saying after reviewing the images a spot had been noted and I should come in for enhanced imaging, ultra-sound and based on the outcome of those, possibly a biopsy. The appointment was booked in for 2 weeks later. I didn't tell anyone, partner included, and tried not to think about it. I was in the 'its probably nothing' phase. At the appointment I was shown the original mammogram images pointing out the bright spot in my right breast they thought looked suspect. It was small, quite high up and at the back away from the nipple. I had the 3D mammogram and based on that they went ahead with an ultra-sound. They showed me the same spot on the ultra-sound and recommended a biopsy. I went ahead. I had no choice at that point to tell my other half as I came out with a wedge shaped bruise and dressing on my boob I was not going to be able to explain away. I should also say that being a normally healthy person I hadn't bothered registering with a GP since relocating so I had to call around and settle for the only place that was accepting new patients and could do an appointment the next day. 4 days after the biopsy and 9 days before christmas, I went back to the BreastScreenSA assessment centre for my results. It wasn't good news, I had a ~6mm, Grade 2 IDC ER/PR + HER2 -, and very dense breast tissue. The nurse called the GP on my behalf to make an appointment for the next day for a referral for surgery. I was referred to the RAH and had my first appointment with the surgeon and met with the Breast Care nurse just under 2 weeks later, this was 30Dec. The surgeon talked me though the treatment plan. It was to be a lumpectomy with a sentinel node biopsy followed by a course of radiation therapy rounded out with 5 years on Tamoxifen. No chemo required. I'm sure I should have asked more questions about the treatment plan, but to be honest I was so relieved I wouldn't need chemo and he wasn't suggesting a mastectomy I just accepted what he was telling me. I had another ultrasound and they placed a carbon track for the surgeon to follow. I was also booked in for an MRI due to the density of my breast tissue to check for anything the mammogram and ultrasound may have missed. That happened 2 weeks later and thankfully I didn't have to wait long for the results, 2 days later I was told there was nothing else identified on the MRI so we would proceed with the treatment plan which meant surgery 2 weeks later on 30Jan. I had the surgery on the Thursday, up to this point I hadn't really been too emotional or anxious. I was taking each day as it came and going by the 'it is what it is' principle so I wasn't overthinking it. My partner was also determined not to let me give into anxiety and worry, we are both of the British stiff upper lip type, we rarely get over-emotional and the approach worked well. Until I walked into the operating theatre, lay on the bed and burst into tears! It just all became very real and I started sobbing, they asked me to confirm the procedure they were going to be doing, which I did, then all I remember is the nurse holding my hand telling me they would take good care of me and me blubbing 'I know'. Then I woke up in recovery and started crying again, this time with relief. I was in the hospital overnight, I had very little pain - probably due to the pain killers, and I was discharged the next morning. I was given a prescription for some strong painkillers but I didn't need them, I was able to manage with just paracetamol. I was back at work on the Tuesday. I only told 2 of my closest colleagues about my diagnosis, one I sit opposite so I felt it only fair to explain why I might seem 'a little distracted' and was having so many medical appointments. The other is a friend. The only issues I had in the days following surgery was difficulty sleeping as I had to sleep on my back rather than my side/front which I prefer and some swelling which turned out to be a seroma that was drained when the dressing was removed. The special little pillow I was given by the BC nurse was helpful for sleeping a little more comfortably too. I had my post-op follow-up 10 days after surgery and got the news that they had removed a 9mm tumor with clear margins and the lymph nodes were also clear, so no further surgery required. The dressing and stitches were removed and the seroma drained. I was given a prescription for Tamoxifen then too, with instructions to start them sometime after the radiation therapy was finished. Then it was all quiet after that for a few weeks, I was left to heal and I was feeling pretty good, I still had numbness in my underarm area but the swelling was coming down and the bruising fading. 5 weeks after surgery I had my first appointment with the radiation oncologist who explained I would be having 15 fractions over 3 weeks. The planning CT was scheduled the following week, I had my little tattoos and treatment started 2 weeks after that. Call me weird, but I actually rather enjoyed the daily ritual of going to the hospital for my little 10 minute lie down. I might have felt differently if it hadn't been so convenient. I can get to the hospital from home in less than 40 minutes and it is only 10 minutes from where I work, so travelling wasn't an issue and I was able to have the sessions scheduled either before work or during my lunch break. I had very few side effects from the radiation, the only one of note being my nipple itched like crazy, I used the sorbalene I was given and the nurse gave me some silicone dressings that really helped, anti-histamine worked wonders when the itchiness was at its worst. My only other side-effect from treatment so far is a little bit of cording in my right arm which is being managed with massage and exercise through a lymphoedema physio. That brings me right up to the present. The only visible signs are a single scar about 6cm long in the crease of my right breast just below my underarm that is smoothing out and fading nicely, and some residual discolouration from the radiation that is also fading. Yesterday I went to the pharmacy to fill the tamoxifen prescription and took the first tablet this morning. My next appointment is in early August. I'll post more if/when side effects of the tamoxifen kick-in. This the phase of treatment I have been most worried about. I feel well and would rather just leave the whole thing behind me. But I know I can't do that. It was dumb luck that I went for that first mammogram when I did, that the BC was picked up when it was, and was able to be treated to simply. I feel very lucky to have come this far with so little disruption to my life, knowing it could easily have been so much worse. This was a very long post so thank you for persevering if you are still reading, and thank you to all that post, reply and like the posts on this forum. I've read so many stories that just reinforce the gratitude I feel for the support that is their for us all as we travel this journey.
Post surgery changes
Good morning, I have a quick question to any women who have had lumpectomy/s and where the surgeon removed fat from under the underarm area right side only for me (side boob) to refill breast/s. I had lumpectomy's on both breasts at the same time, early cancers, both hormone positive ILC & IDC over a year ago now. My question is if they have been left with what looks like a small 3rd boob to me under their armpit that protrudes out. I cant understand how an area that has fat removed from it ends up bigger than before. It is uncomfortable, causes rubbing/friction that I did not have to contend with before and finding a bra that covers the area so the excess bulk doesn't get squeezed out from and overhangs from the bra line is frustrating. I only have B-Cup breasts and never had to wear heavy duty thick/wide band bras before because I wasn't big or had a lot of fat in the side boob area. Since surgery & having the fat apparently removed to fill the area my small tumours were removed from, I am now left with a bulge that is very noticeable from both the front & back. I dont wear singlet tops any more because the bulge is too noticeable. Very disappointing because I was not told about this outcome, only that there will be scar/s, which I have & don't concern me at all. Having a bulge/mass sticking out from the side of your breast seems more notable to mention than whatever scars might be left behind. Had I known I would not have had my breasts "refilled" from the small tumours removed. Any lop-sidedness or unevenness if any would have been fixed with a bit of padding, which most bras come with these days. I feel I have acquired a 3rd boob that is very noticeable whether I am clothed or not. Has this been any one else's experience?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...
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?
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