Alone in Melbourne newly diagnosed
Hello! Umm I came to Melbourne last week from interstate for breast lump testing. It’s confirmed cancer and I am awaiting staging, this week. I don’t know Melbourne and am alone and scared, confused, exhausted, overwhelmed and in a lot of pain. I am very concerned about metastases for some reasons I don’t want to even say. Is there a GP or any service or anything I can connect with? I am finding Melbourne HUGE and very hectic and overwhelming compared to my small town. It takes me many hours to even find food or get anywhere. Non ideal scenario, but I know better placed here for proper diagnostics and initial care. I am just very scared and alone and in pain.
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
Lymphoedema Information Day
Registration has just been extended until 13th March Come along to Tamworth for the Regional Lymphoedema Information Day on Saturday 21st March. To attend this wonderful day of learning about lymphoedema, the best practice to treat and manage this condition, latest research, and opportunity to see and talk to our sponsors about their lymphoedema products! 7.30-10 am Session for medical and health care professionals only 10am -4.30 pm Sessions for public-everyone consumers ,medical and health care professionals https://www.lymphoedemasupport.com/upcoming-events/information-day-2020 Send your registration form in by 13th March Go to www.lymphoedemasupport.com and follow the links to register. Don't miss out! Please go to the Lymphoedema Support Group of NSW Facebook page and like and share their posts. This conference is priceless opportunity for anyone who has had breast cancer surgery, or who cares for people who have had bc surgery . (family or service industry) or other cancers especially head and neck, genital /urinary/gynaecological , melanoma,. Gp's,physios, occupational therapists, massage therapists, podiatrists,- lots of people who could benefit from top notch advice to be able to help the estimated 40,000+ people living with lymphoedemea in Australia & New Zealand You can also be born with lymphoedema or a predispostion to it , or it can result from an injury, can be a side effects from many other diseases also . Not restricted to breast cancer . Up to 20% of all breast,ovarian and prostrate cancer survivors develop lymphoedema. Early treatment leads to better outcomes. It is essential for patients to have education and adequate support to ensure compliance and self care to reduce the impact of this chronic condition and reduce associated complications due to inadequate self management of lymphoedema.
New here...my story so far
Hello, I’m new the group and haven’t shared my story yet. It’s taken me a little while to be able to read some of your stories and not have ‘freak out’ moments. Thank you to all of you for sharing your stories. It is important to see the full gamut of what is happening and what is to come. In my initial moments I was overwhelmed reading here because I was so scared every time I read and got caught up in thinking if it would happen to me too. So I selfishly took myself away from reading and gave myself time. I was diagnosed with EBC (early breast cancer) in August after a Breastscreen appointment that picked it up. I have a fibroademona that was detected and checked when I was in my 20-30s so I fully expected that would come up in scans. In fact, I had noted a lump in my breast and had managed to convince myself that it was just the fibroadenoma that had grown. It’s amazing how we can easily convince ourselves isn’t it? Not quite delusion, not quite outright denial but I did have a few things going on at the time. I lost my job of over 20 years, Covid shut down the world and just when I was finding balance and working again I fell down some stairs and broke my leg. So for two years, I let other things take priority over having my Breastscreen checkup. I’m one of those cautionary tales and I’ve had to give myself grace and not blame myself too much over it and think on the ‘what ifs’. If I keep on the ‘what if’ I will just go crazy and overwhelmed emotionally and I have to get on with it. Decisions have to be made and now knowing what I know, I can’t wait any longer. Here is where I tell you all that this isn’t my first time with cancer. In 2010 I had surgery and radiation for a liposarcoma in my arm. I was finally cleared and cancer free by 2018/9. So I’ve had a few years of not thinking about it except when I see my scars. To say that I am scared is a huge understatement but I’m a planner and practical person mostly so I cope by finding solutions. I don’t know what the stats are on survival rates for my situation, it’s one of the questions I haven’t asked yet. Partly because I’ve gone into solution mode and partly because I am just that bit too scared I guess. My EBC journey so far has been all about finding a surgeon which I was lucky enough to be able to do from my specialist physiotherapist. I’d been seeing that physiotherapist for my arm and knew she also worked with many women with breast cancer. She referred me to my cancer surgeon. The decision to have surgery was an easy one after the sarcoma I knew it was necessary. Having the choice of breast saving surgery and reconstruction is a blessing. I chose to have my other breast symmetrised at the same time. To my thinking, if I was going for surgery I preferred to do it all at the same time. My surgery was 8 October so I am now 2 weeks post surgery this week and healing amazingly well. I’m grateful that my body heals so well. I am also grateful that I was able to read up on tips on the BCNA site. I chose to go private so that I could choose my surgeons, both of whom are excellent in their fields and have been wonderful. So what are my numbers? My EBC lump was 37mm Grade 3 invasive carcinoma, ER and PR 75% 3+ positive, HER2 negative with clear surgery margins. However, 2 of 3 lymph nodes showed metastasis with largest tumor deposit 22mm. That is the current concern and so I’m due to have a PET body scan this week and consultation with a radiologist and oncologist. My surgeon tells me that she wanted more information before deciding my radiation protocol and further treatment. I know I will also have hormone suppression treatment but am not there yet. I am thankful that the research on breast cancers is so extensive that treatment protocols are updated often. My surgeon tells me that previous protocol for lymph node involvement would have meant instant removal of all lymph nodes. Whilst I am grateful I may not lose all of my lymph nodes and that I may have options, a part of me is also really sad and scared knowing that the reason there is so much improvement in treatment is because there are so many women that have had to go through this before me. That’s me, my story so far. I was brief though wordy. I will continue to read and share where I can, you may have noticed that I struggle with sleeping 😊 Sad to be here, grateful to have your support.
Time to process
Hi All, my intro post. Such a roller coaster of emotions and processing suddenly going from perfectly healthy to not! I had a Diagnosis 22/12/23 IDC with 2.9cm tumor and lymphnode involvement from BreastscreenSA. ER and PR +, Her -. (Xmas is harsh to get such news, both in the slow down of services and in telling nearest and dearest) It has taken a while (necessary tests, scans and byopsies), but looking at treatment beginning Wed 28/2/24 with surgery (partial masectomy, axillary node clearance). Then most likely chemo, radio, hormone therapy. Overactive imagination has been a problem, general stress/anxiety, and not sleeping well. It is settling a bit now, as Ive met surgeon and feel comfortable I am in good hands, met with Breast nurse (and now have a bright pink pillow and lovely accessories pouch for fluid tubes). I am participating in a clinic trial that I meet criteria on that I decided yes to assist. I am going ahead on a planned and booked holiday next week (which several family are also going), the surgeon was supportive on proceding with this as mental health positive. Then it is full steam ahead! I am fortunate to have supportive family, and some great friends, some who have had a bc journey themselves. Was concerned about work for a while, but Ive let the h.r. depts know (two jobs) of upcoming medical, and am scaling back for as long as I need (casual events hospitality - high energy, physical and customer facing, they will still be there when I can manage again!) So I think I am in about the best positive I can be for now! Not keen on whats to come, but ok to get on with what needs to be done! Thanks for reading, and thanks to all those sharing posts and info themselves - it has helped.My ALND was a bust..
Hi everyone, this is my first time posting. I discovered my lump in late May while breastfeeding my bub, and am now two weeks post surgery for hormone positive breast cancer. Not the clogged duct I had originally assumed it was. It’s been an awful shock, as I know everyone will understand. So, I have just had a lumpectomy, a LICAP reconstruction on the boob, and level 2 axillary clearance. I’m looking for advice from those who have had an axillary lymph node dissection. I just had my post-op and it was a real mixed bag. Breast cancer out with clear margins (great) BUT seven nodes removed and … none cancerous. While that sounds like great news the problem is that they had biopsied one suspicious node prior to surgery and it had come back positive. So it appears that this positive node was missed. I’m now headed for a second surgery. My question is - for those of you who have undergone ALND- is it normal that they didn’t mark my positive node in any way so they knew where it was during the biopsy or prior to surgery? The doctors are saying they will mark it for the second surgery with magseed and it seems completely ridiculous to me that this wasn’t done initially, when my breast tumor (which was palpable so very obvious) was marked during biopsy. It just seems very slap dash to presume you don’t need to mark as you’re taking everything out anyway. I am wondering whether not marking or targeting when a clearance is planned is just normal procedure and I should just roll with this situation, or whether my hospital or perhaps the surgeon has not done something they probably should have ie mark the cancerous node. I have an appointment on Friday with the surgeon, and I feel knowing others experiences prior to that conversation will give me some peace of mind, or perhaps the gumption to at least push for a second biopsy alongside the magseed. I want to be really sure this time that they are targeting and marking the right node before I go for another surgery. Any shared experiences or thoughts from those who have walked this road ahead of me is appreciated. You are all so brave. This whole situation is very frightening.
Lymph Node removal and lack of arm movement
Hi everyone - first post on here:) Quick question re lymph node removal, I had surgery 4 weeks ago, lumpectomy and lymph node surgery (8 nodes removed, 3 cancerous), I went back for breast re entry surgery 3 weeks ago to ensure the margins were right. I healed well and have been doing my exercises twice a day for my left arm. I still have quite restricted movement in my left arm and was wondering if anyone else had experienced this? Money is tight at the moment as I was due to start a new job 3 days after I got diagnosed. I am seeing an OT, but don't really want to see a physio on top of this...I'd love to hear of anyone who has experience with this. Thanks in advance😊
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,
12 Years Cancer Free :)
Hi Lovely Pink Ladies. Thank you for reading my post today!!! Well, I am now officially 12 years cancer free in late August 2023 but I have had a few scares along the way as we all expect may happen including my latest saga. In June this year I had my routine Mammogram and Ultrasound done at Qld Xray. Of course I was thinking that it would be fine. Mammogram seemed to be ok then I was waiting on the ultrasound soon after. During the ultrasound the radiographer was very thorough as you would expect. Paying particular attention to the left breast and armpit where my original cancer was. I asked if there was anything found and she said she needed to see the doctor that does the reports. Then as the radiographer walked out of the room to speak to the doctor that checks the results I waited expecting her to walk back in and I could leave. How wrong was I? The radiographer came back into the room and asked me if I had an infection of any kind? I said no. Had an immunisation in my left arm? Again, no. Then she asked me if I had a cut on my left arm? I again said no, and then asked why was she asking me all these questions? I could tell by the look on her face straight away and that the length of time she was out of the room possibly meant something ominous was happening. The radiographer then said that they had found something on my ultrasound. My heart literally sank in response. When something is found on an ultrasound you know how that feels right? I asked what was it they had found? The lady said one of my lymph nodes was enlarged, and that it wasn't on any previous tests done. Luckily for me I'd had my previous Mammogram and Ultrasound in the same clinic so they could compare my results first hand and on the spot. I said how enlarged was it? She said enough to be concerned. Then she said she would again speak with the doctor. Of course my head was spinning, my first thought was CANCER!!! I could feel the tears well in my eyes, as I am now typing this. I get so emotional when it comes to my mental state regarding this horrible disease. The radiographer seemed to take longer than the first time to speak to the doctor. About 20 mins later she returned again and she could tell how concerned I was. The lady handed me a request letter to get a FNA (Fine Needle Aspiration) done. I said would that be in a couple of weeks? The response was no you need to get this done by Tuesday next week urgently. I asked was it only the lymph nodes in question and whether they had found a lump? The lady said no only the node and that the Mammogram hadn't picked up a lump nor the Ultrasound as such. So I needed my gp to give me a referral. This was a Saturday afternoon I was walking out of there so by the time I got back to my car after paying my bill it was too late to get an appointment with my gp and the surgery was closed. I left a message on the machine to say I urgently needed an appointment. Once I got home and my husband asked how I had gone at my appointment, I told him what had happened. The look on his face? He said to me, "oh no, is it cancer again?" I said I don't really know? I then told him how they want me to have an FNA immediately due to what was found. He hugged me straight away and I burst into tears. My husband knows exactly what I was going through with the worry and was my rock going through my breast cancer in 2011 to 2012. Then my husband asked how enlarged was it? I told him it was 6mm and with bulky features and poorly preserved hila. Also, that they wanted this done to rule out local recurrence. Category 3: INDETERMINATE FINDINGS. We were both so worried and I explained that I could not reach the gp yet as the surgery was closed. My husband said ring again tomorrow morning. Before I could ring the gp rang me and asked what was so urgent? I explained to him what had been found and he immediately arranged for a referral which was sent to me via email and to Qld Xray. On Monday they rang me with an appointment. They gave me one for the following Tuesday morning, which was the 20th of June at 10am. Driving to that Tuesday appointment, again my head was racing and I was wondering if I would have cancer again and if I would have to go through chemo again and all the craziness that goes with it. I had my FNA done and had the feeling that there wasn't enough cells captured for a diagnosis on the enlarged lymph node. Sure enough the person that had done the FNA had trouble getting cells off the larger node. She asked me if she could do some multiple sweeps as she called it on other nodes in the area? I said. "I am here now, go for it." Of course I was so anxious waiting the next 2 days for my gp appointment, where I got the news of not getting enough cells for an accurate diagnosis on the enlarged lymph node. I just knew it! I was not angry, just disappointed as I was hoping that it was all over. Of course it wasn't and only the beginning. The gp said that he would put me into the public system for an immediate appointment. I got a text the following week that it could be up to 30 days for an appointment. Then the next day I got a letter to say CATEGORY 1 30 days wait. I was so shocked of course as being a former cancer patient with possible recurrence was significant to me. I couldn't wait 30 days for an appointment, it would have driven me insane with the worry and the waiting. So I again went to see my gp who told me he could give me a private referral if I wanted? I said yes please. The private doctor rang me with an appointment for the following week and that he wanted me to get a PET Scan done immediately. I felt so relieved even if I had to pay, at least things were happening. Then a day before my appointment with the private doctor I got a text with an appointment with the public hospital. The receptionist at the private surgery told me to take the public one because the doctor in question is also head of the department at the public hospital. I had to wait a week but at least I had a time frame and I could cope with that knowing a date. The next day I got a phone call about the PET Scan and an appointment for the next day which was the 4th of July. I had to have a special diet to have my PET Scan done. I said to the man that rang me with the details, about how I am a Coeliac so I know all about a special diet as such. He said it was for everyone that got the scan so no biggie. Lol! Private joke obviously? They told me to drink a lot of water for the scan. When you have had 3 children holding it isn't easy. I was told I could go to the toilet but of course while I was being infused with the tracer I was hooked up to a machine which was supposed to be an hour. After 45 mins I couldn't hold it any longer lol. The nurse said it was long enough for the procedure and that I could bolt to the toilet once I was unhooked. I sure did lol!!! Then after the scan which was about 20 mins or so I again bolted to the loo! A little embarrassing for me but a necessary evil. After a nice cuppa and my gluten free snack I had brought in I was done. I then waited for the results. I was amazed because I had the results around 6pm the same day. The doctor was incredible giving me this relief so soon. PET SCAN ALL CLEAR!!! If I had cancer anywhere in my body it would have lit up like a Christmas tree I was told. I had a PET Scan done back in 2011 too as a result of my highly aggressive non-invasive ductal carcinoma. It was a 3rd grade tumour and stage 2 non-hormonal. No secondary cancer which is what they were looking for back then. OMG I was so thrilled and my husband too. I cried with relief although the scan has picked up a 3rd autoimmune disease to contend with. Then the wait to see the doctor at the public hospital. They examined me and told me that they wanted a follow up ultrasound done in 6 weeks time. I've had the follow up Ultrasound last week and again the lymph node is still enlarged. The radiographer, oddly enough, was the same lady I had in late June with my first Ultrasound. Again when she left the room and was away for 20 mins I was concerned. I am at my wits end over this, was expecting that it had returned back to normal? No such luck! They still have no idea why the node hasn't returned to normal and similar in size. So now I will need another follow up Ultrasound in 3 months time. My gp has already given me the referral and now I need to make another appointment. It has been suggested that I have a Mammogram next year in June 2024. Although I am still a Category 3 it is now classed as 'PROBABLY BENIGN FINDINGS' on the latest Ultrasound report. I would just like to know why this lymph node is still so enlarged? I realise it can be from an infection and that it can be that way for months...but? They are still going to monitor it so at least I am still in the hospital system should anything change right? Watch this space for next scan results. Finger's crossed for me that I can get off this emotional rollercoaster again please!!! :)Genomic Testing
Hi, I was diagnosed 1 month ago, and had a bilateral mastectomy last week. My tests came back yesterday and although one Lymph node was clear, another had minimal cancel cells present from my left armpit. Apparently i am a N0 category. Although my surgeon is going to get other doctors opinions etc if i should go ahead and have chemo, i thought i would research Genomic testing too. I have my oncology appointment this week. I am stage 2 (not sure if A or B ) , ER+, PR+, Her2-. Is there anyone that has recently done the test, if so is it possible to give me abit more info on it, cost, timeline, name of test etc. Thank you in advance, this has been such an emotional ride so far, but i am grateful to have had it diagnosed early.
