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.
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.
Under arm hair after node removal
Hi everyone, I’m 2 months out of lymph node removal, and 1 month post mastectomy. I purchased an electric razor about 6 weeks ago but only succeeded in pinching and nicking the skin in my good armpit. Currently I’m just letting it grow. I’m figuring I’ll be wearing long sleeved tops when I’m out anyway. And if I’m not - it will be tshirts and people will just have to deal with it. ive never been a waxer - always ended up with I grown hairs if I waxed my legs. The scar under my arm is just below the hairline but I am very wary of shaving and damaging the skin. I’ve already swapped to an all natural deodorant which works brilliantly. What solutions (or not) have you come up with ? I’m thinking I’m just going to embrace my hairiness and horrify the people who happen to notice it!
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!
Recovery Post Lymph Node Removal
Hi everyone. I’m one week post op with mastectomy and auxiliary lymph node removal (16 were taken which I believe could be a lot???). My movement is slowly getting better everyday - I have a little puffiness under the armpit and my tricep area was quite numb and touchy but that is getting better unless I have a busy day and it flares up a little. I know it is different for everyone but what have other people’s experiences been like on recovery times. I’m doing my exercises and can now use both hands to wash my hair and can raise my arms higher but I still couldn’t get into a non stretchy T shirt and still would be hesitant to drive. I’m so paranoid about lymphodema and I keep comparing my arm sizes and have taken to wearing a ring on the affected side incase of puffiness.
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..:-))
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.
Looking for recommendations in Sydney
Hi all, I have some practical things that I’ve been struggling with and I figured I’m unlikely to be the first. I had a single mastectomy and auxiliary lymph node removal in November and have been having issues finding bras - I’m 35 so I’m looking for something with underwire and padding that also has a pocket for the prosthetic. No such bras seem to be available at the list of stores given to me by the breast care nurses. My scar goes across where the nipple would be rather than where an underwire sits so I’m still able to wear underwire comfortably and since my remaining breast is a DD going without underwire, padding and structured support isn’t my favourite. The berlei post surgical bra was fine for around the house but don’t work under a lot of my wardrobe and again, the support issue is a problem. I figured a good option was to get a couple of my favourite bras tailored to add the pocket. Problem is trying to find someone who can do that sort of work is proving very difficult. The one guy I found in balmain showed me a method that looks like it’ll damage the bra and not have a great result. So any recommendations would be amazing. Also looking for inner west lymphatic drainage massage recommendations (that don’t cost the earth). Any suggestions for how to minimise lymphadema risk and tricks and hints for getting used to it all would be much appreciated. My hope is for a reconstruction but my surgeon says that’s about two years away. Thank you so much katherine
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.
