(Hopefully) At the end of my journey
Hi everyone. I have been reading all your posts (thank you) and never wrote anything myself until now. I was diagnosed with a pretty small but aggressive tumour last June, and pretty quickly moved to a lumpectomy, then 4 dense doses of AC chemo, followed by a planned 12 weeks of Taxol (I only got to 8 due to peripheral neuropathy), then 22 doses of radiotherapy (including 6 'boosts'). I had some rotten times, AC chemo was difficult- I tried to work while I was having it but had to go on leave at about treatment 4. I had issues with almost all my procedures- my hook line had to be done twice (nearly 2.5hrs), I became febrile and had to be admitted to hospital, my veins collapsed, my PICC line removal was difficult to say the least and I ended up in hospital for emergency surgery, and right now I am battling the radiation burns. I lost ALL my hair, couldn't taste anything, felt nauseous and exhausted and am still having a heap of side effects. I live alone, so looked after myself pretty much all the way along, although I had heaps of support from my sister and some very good friends. But the most important thing I wanted to say to anyone starting out- nothing that happened to me was as bad as I thought it would be. I used mindful and meditation techniques when I was having my procedures and they worked for me- well most of the time. I fought a battle in my mind with cancer every day and I am so proud that I feel like I beat it many more days than it beat me. I just made up my mind that it wouldn't defeat me on a daily basis. I had a great surgeon, a wonderful oncologist who provided a positive and confident outlook, and all the doctors & nurses at the hospital were gold. I thought the chemo ward would be sad and upsetting- instead I found it to be a place of laughter and hope. I used a mix of public and private treatment and still see somewhere around 13 medical and allied health professionals while holding down a full time job. I didn't write this for anyone to say I did well. I wrote this to say DO NOT BE AFRAID. You can do this and there is lots of help if you need it. Reach out to this community, to a breast care nurse (thanks McGrath Foundation), to your family & friends, to the volunteers, a psychologist- people want to help you. Then when you get better, you can pass it on. Pay it forward. All the best of luck from me. Believe your mantra- mine has been: Things could be worse Accept the things you cannot change Do not live your life in fear
Pathology Results and onwards...
I got my pathology results yesterday after my lumpectomy and sentinel node removal on the 24/2. I was so relieved to learn that the cancer hasn't spread to my lymph nodes, I cried when the surgeon told me! I'm still up for chemo for about 5 months though because mine is a triple negative, doing a CT and bone scan on Friday to double check no other cancer cells have lodged anywhere. So still a ways to go but one less thing to worry about now. Yay!
Home from surgery Ann's staying positive
I had surgery yesterday with wide lobal excision and sentinal node biopsy. No nodes removed. I am home in less than 24hrs. The amount removed was the size of an orange. Full results next week. Doing well feeling strong but weary. Just the next waiting game for the full results. Need to keep myself positive. I am in awe of all the beautiful women who have gone through this before me.
Surgery Completed :)
Hi all. Just wanted to thank you lovely ladies for all the help and reassurance before my surgery. As an update, I went in for a lumpectomy on Wednesday. It was a very long day as we were told to arrive at 8am and my surgery did not take place until 6 pm but I am very glad it is all over. I had 6 lymph nodes removed and the initial pathology results showed that no cancer had spread to them but I will obviously need to wait for the final pathology results in the next couple of weeks. I came home yesterday and I actually feel allot better than I thought I would have, a little pain but only when I move around too much. Honestly just glad to be home and grateful that it all went so well. Thank you all again and I wish everyone success on your journeys.
recovery and life
It has been a week since my surgery for the lumpectomy and node removal. Funny enough, I was not nervous. I went into surgery calm and with the attitude - I am in good hands. Surgery took a bit longer because I found out today they got a rather nasty surprise.....the lump measured 8.5 cm or 85mm instead of the 2.5 cm they thought it was going to be. In their words "it was angry". With my slightly dark sense of humour - all I thought was "you would be angry too if someone came and threw you out of your comfortable home!" However, i know that 'angry' is not a good phrase in medical terms. The nodes biopsy hauled out 5 and 4 came back positive with the 5th showing signs of being 'annoyed'...clearly another medical term for "Not happy Jan!' This afternoon, I am being 'rushed' in for a full body cat scan and on Monday a bone scan is to be done. The medical team were hoping for both scans to be done tomorrow so they could have the results to be back for the conference being held prior to our meeting Monday afternoon. Alas, they will only have the CT scan. The doctor was truly fantastic in her delivery of how things had gone and she gave me time to try and catch my breath again. Once we had finished talking, my Breast Care Nurse called and confirmed the appointments, requirements for them and then asked the important questions - "How are you feeling??" - shell shocked again but to be honest, I had a 'feeling' that there would be more to come. So, come Monday - a new ball game will begin and this time the team and I will be going in to win the game! Oh yes by the way - the scars have healed amazingly. had 1 really rough day out which had me in tears, I found as long as me and my new best friend - my little u-shaped pillow go everywhere together - I am comfortable. Hope you are all coping with the lock-downs and life is throwing you giggles, chuckles and laughter. Lois xx5 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.
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...Hi everybody
I was diagnosed with breast cancer on 31 January, and found out I was triple negative on 10 February. I'm scheduled to have my lump and some lymph nodes removed on 24 February, and have been told I'm up for chemo and radiation therapy. I know the radiation will be everyday for 5-6 weeks but do they usually start chemo straight away too? Or do they wait till you've recovered from surgery and have the results back? I have pre-admission on Monday 17 Feb where I'm sure they'll tell me but thought I'd ask here as well. Bit of a shock though when I found out, don't think I've processed it really yet because I feel fine. I'm anxious obviously but otherwise ok.
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.
