Triple Positive HER2+
Hi everyone BCNA Online Network established a Group with Triple Positive breast cancer which is useful also for people who might be HER2+ but not positive for oestrogen or progesterone. This post is also to alert previously accepted Triple Positive Group members: you might not have been automatically transferred across to the Triple Positive Group with the recent upgrade to the new BCNA Network site. Please do request to rejoin the Group (I did)! Ned01CheriSukiCheriAnna15FeRnurserachMareealsoTriplebreast240Number2CaitySXC1947
Scared about the side effects of treatment
Hello everyone, I'm 35 with two young girls- I was initially diagnosed with LCIS just after a routine scan- but after my mastectomy surgery 2 weeks ago, the pathology has come back that I have HER2+ estrogen and progesterone + Lobular carcinoma, but thankfully no spread. It was a real shock as I was not expecting this news, thinking I would only have to have the mastectomy and that would be it. I am starting chemo, immunotherapy and hormone therapy in a few weeks. After what I thought was going to be a relatively straight forward recovery after my mastectomy and 6 weeks off work the oncologist said I am now looking at 6+ months off due to the upcoming treatment. I am feeling a bit overwhelmed and sacred about the effects of the upcoming treatment on my overall quality of life (and caring for 2 young children!). I will likely lose my hair with the chemo- the oncologist mentioned I could try the cold cap therapy- for those that have had it has it made a significant difference (the Dr said it takes a long time each chemo session to put on and off!)? I would also appreciate any insight into how to approach looking for some counselling support as well- would it be best to go through a GP or...? Thank you for reading, I'm so glad there is a support network like this available- I feel very alone so far. xx
Diagnosed Today
Hi all, I'm new here. I'm 48. I had my last Mammogram in November 2022, and was due for my next December 7th....however.... I went to the GP in November after feeling a breast lump for 10 days which I was hoping was hormonal. It didn't go away so I got it checked. GP didn't seem concerned but she appreciated that I was and ordered mammogram & ultrasound. Appointment was in 2 weeks. On Wednesday 4/12 I had the scans, the mammogram lady went quiet, later with the sonographer I said 'I'm just not sure if it's in my head or if I'm being hyper-vigilant' He said 'I'd say you're being the right amount of vigilant', then told me he would go and get the Dr who would need to check me. The Dr started telling me that I'll need a biopsy and that the statistics in Australia in particular are very successful for treating breast cancer. He went on to say that he'll get his report to my GP straight away and if we decide to use them for biopsy they'll get me in straight away and to contact my GP. So I drove home and on my way I stopped at the GP, the receptionist could not get me in till the next day to see the GP. I left in tears and went home. I decided to do some work and 2hrs later I got a call to say the GP wanted to see me immediately. I drove back and saw the GP who gave me a referral for urgent biopsy. I went straight to the local ultrasound place to see if they could book me an appointment at their sister site, that I attended earlier that day. They said they'd need to speak to their Dr and would call me. Within an hour they called me, and said their Dr would come to my local clinic and do the biopsies there for me the very next day, saving me the 45minute drive. Thursday 5/12 I had the biopsies of my breast and lymph node done. That was pretty smooth sailing and the Dr said he didn't want me waiting a week at the other clinic so came up here especially for me. All the staff were SO lovely and I'm eternally grateful for their care and concern - however the urgency is absolutely scared the crap out of me 🫣 Today 10/12 I got my biopsy results and am officially diagnosed with Breast Cancer. No idea what most of it means but basically 👻 Invasive Carcinoma NST; and 🐝 Metastatic Adenocarcinoma 🍃 ER/PR Positive 🍂 HER2 Positive (Amplified) An hour after j left the GP, the local Cancer Centre phoned me, so I have: Medical Oncologist Appt: next Monday Radiology Oncologist Appt: next Thursday I don't understand what NST means, and it wasn't staged on pathology...is that usual? I haven't told my children, and am hoping to hold off till after sons' birthday and grandsons first Christmas. One thing I have to say is that I am SO incredibly grateful for the swiftness of care I've received and am receiving. It's a crappy club to be a part of 😭 but I look forward to 'meeting' you all xx
Her2 positive
Hello I'm 40 and recently diagnosed with her2 positive. No family history of breast cancer. My sister and maternal cousin recently diagnosed with lobular cancer. They are having surgery. It's been a Whirlwind recently. The professionals say it's early, the treatment is going to be chemo , waiting for my medical oncologist appointment to find out how long etc. Surgery then hormone tablets. I'm struggling to understand why I need chemo first. If anyone had or has her2 I would be grateful to share your story. Thank you kindly.
Both !! Triple negative and HER2 positive diagnosis in the same breast synchronous
Hi i have just had a left breast full mastectomy and sentinel node/s excision due to initial diagnosis of extensive high grade DCIS. I had DIEP flap reconstruction at the same time. Tests of the removed tissue indicate both Triple negative and HER2 positive cancers (early stage) in the same breast at the same time. My surgeons are on leave. I have only received a partial summary report so far and don’t get full results or next steps for treatment til end of January. Is this unusual to have 2 types of BC at once? In the same breast? Any others have similar experience. The half news and lack of next steps just now with all the specialists away is a psychological and emotional challenge. Advice appreciated thank you 🙏🏼
Triple positive..but invisible on screening tests
Just diagnosed in September after finally pushing my GP for an answer on what this lump actually was that was getting bigger in left breast. Negative results on screening mammograms and ultrasound. Surgeon wasn't concerned but did a biopsy - Triple positive. Then did a lumpectomy 4wks later but it was bigger than he thought and did not result in clear margins and one lymph node affected.. Soooo... am now on day 2 post 1st chemo treatment and, so far, so good. I'm taking preventative medications recommended by oncologist to avoid the nausea, bone pain, mouth tenderness that seem to be common... but my gut is churning a bit.. I am in a regional centre and have decided to have my mastectomy in Melbourne as they can also do a reconstruction at the same time. Whirlwind and roller coaster and waves are the emotional analogies I seem to use. It's reassuring to know that many, many others have experienced this stuff and got through it in their own ways. Always keen for tips and tricks :)
New to breast cancer
Hi all, the lovely ladies at the westmead breast cancer institute said I should join this group as a support basis. As all people I'm kind of still in a daze state about this even now after 1st round of chemo. I'm not sure what to expect in the coming many months of treatment. But on the upside my hair has not yet started to fall out.. waiting game I guess.
Tips and recommendations during Taxol
I am starting my TH regime on the 22nd of August. I am looking for any tips or recommendations to make this part of my journey as less unpleasant as possible. Cancer centre has cold caps and cold gloves… do they actually help or are they worth the discomfort? Please hit me with your top tips. Anything from shampoos, skincare, foods to what to take with me to the infusion centre… anything to make it easier please! I am really feeling quite anxious about starting chemo. I have already had a nipple sacrificing double mastectomy with immediate implant reconstruction almost 4 weeks ago. Thank you 💕
Feeling alone and scared
I’m 36 with two young kids, newly diagnosed with lobular carcinoma. Have had a single mastectomy with axillary clearance. Pathology report shows 120mm (12cm) tumour (clear margins) and 23 lymph nodes removed, 10 with cancer. Starting 20 weeks of chemo in a couple of weeks, then radio, then hormone therapy (10 years). Doctor and oncologist use the term ‘treating for a cure’ however I’m still afraid about what the lymph node involvement means for my future. Im looking for stories of people in a similar position and how you are looking at the situation and stories of inspiration of people who had lymph node involvement and how they are getting on down the track. Thanks.