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.
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.
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.
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!Lymph node removal site tender
Hi ladies, Just wondering if the tenderness I am having at the site of my lymph node removal is normal. I had a lumpectomy and sentinel node removal done on 24/2/20 and until the weekend just gone have had no pain or tenderness. But over the weekend and today my lymph node wound feels quite tender and I'm just wondering if this is normal. I don't have any swelling in my arm at all however the wound site under my dressing feels slightly more swollen compared to the same place on my other side. I do have my followup appointments tomorrow but was just wondering if you think this increased tenderness is unusual. Thanks
27 year old lobular carcinoma
Hi there, I’m 27 and based in Brisbane just now. 12 days ago I was diagnosed with invasive lobular carcinoma. I don’t yet know lymph involvement but am guessing it’s likely (nothing showed on USS or palpable however.) My surgeon has recommended a full lymph clearance. Is there anyone else out there this young with lobular? My biggest fear is leaving my husband behind without any children, what if my illness causes him to miss his chance of having kids with someone else one day? Unfortunately I’m a nurse so know a bit too much about what I’m about to go through. I have a mastectomy in 3 days and axillary clearance. Trying to remain positive. At what point did you ladies meet your oncologist? I’m not meeting them until next week when the final pathology/sizing etc is back after surgery and they’ve had an MDT to decide my treatment plan. Is this normal? I’m public.
Drain after surgery
Hi..has anyone had lymph nodes removed, as well as breast excision?? Breast care nurse spoke of drain, and gave me a shoulder bag to be more discrete, and allow easier activities, bathroom visits, etc..forgot to ask, how long does drain stay in please, if all going well??..thank you, hope everyone is doing well..:-))Supraclavicle lymph node?
hi all following my oncologist appointment yesterday I asked her I feel my lymph node on my clavicle and she had me get it biopsied today anyone else had BC in this node? I already know I have at least one axilla node cancerous but she said when doing the biopsy today it was only very slightly enlarged by like 0.3mm and could be reactive due to recent chest infection which was treated with 10 days of antibiotics...but obviously I’m concerned