Newly diagnosed - Triple Negative - Chemo underway - Family history
Hi everyone, Well this is the group you really don't want to join, but it appears to be a great resource and source of support, so here goes. I was diagnosed with a triple negative tumour in my left breast on 9th May (grade 3), following a biopsy. I count myself lucky in that I have been part of a High Risk Breast Cancer Clinic at RNS Hospital since 2018, when I found I had the BRCA2 gene mutation. I have a strong family history of breast cancer, with my father having breast cancer at 64 and ultimately passing away at 68 from secondary cancers (way too early - he thought he could massage away the lump). His mother had breast cancer as well and my mother had ductal breast cancer in her 70's. So the annual mammograms, MRIs and ultrasounds since 2018 may have been a nuisance, but they picked up this cancer. I knew something was up when they did the mammogram and kept on calling me back into change again for another scan and then bringing forward the ultrasound appointment, where they did the biopsy. I am going to remember the call I received from the breast specialist's office saying that I needed to come and see the specialist "today" - no delay. I burst into tears and knew straightaway. I'm ahead of my parents in having been diagnosed at 59 - thinking of postponing my big family celebration weekend away in late July until after all this! Quickly into an oncologist and the treatment plan set up within a week. Because of the triple negative category, I'm starting with 6 months of chemo - first 3 months weekly sessions of Pembrolizumab ('the' new immunotherapy drug my oncologist says has only been approved in the last few months), Paclitaxel and Carboplatin - then 3 months of 3 weekly cycles of Pembro, Doxorubicin and Cyclophosphamide. Following that, they hope the tumour will have shrunk and they will then do surgery to remove the remainder - with the decision then on a lumpectomy or mastectomy. Radiation is a possibility after that. My twin sister (same genes of course) had a double mastectomy as soon as she found out we had the BRCA2 gene in 2018 and her initial reaction was to 'get them off' - but I'm following the treatment plan suggested - and I think a bit grateful I don't need to make that decision yet. I am down 2 weeks of chemo. The side effects I've experienced so far are the usual fatigue (have been trying to work in mornings, but I'm quickly realising that's even hard), inability to sleep the first few nights (the steroids I understand), yukky mouth sensation, slight nausea in morning with cooking smells, some slight rash spots on face - and the worst, the bloating/constipation (I won't share the details but I'm quickly realising I need to change up diet and liquids). I don't have any great questions just yet, but look forward to interacting with you all in the future and thank you in anticipation. Sorry for the essay. Kathy
Confused radiation or mastectomy
Was diagnosed with early BC in June last year just shy of 42nd birthday. ER and PR + HER2- . I also carry BRCA2 mutation. My oncotype test came back with high risk. Lumpactomy done. Chemo done. Started hormone therapy - letrozole and zoladex monthly. Am now at crossroads of either doing radiation or mastectomy possibly bilateral to reduce risk. I don't know which option to take. Any experience or guidance would be most appreciated <3
Sydney oncologist recommendations - Children after early hormone positive breast cancer.
Hi everyone, I’m trying to find a Sydney (or Wollongong) oncologist recommendation for a friend of mine. Preferably with an interest in fertility preservation/pregnancy for young cancer patients. My friend is only 28y & was in the process of planning for an elective double mastectomy (due to genetics), when they found Grade 2 hormone positive cancer in one breast. She is three weeks out from her double nipple sparing mastectomy, with a plastic surgeon in Wollongong. Even though it wasn’t in her lymph nodes, she has just been told that she will also need Chemo & hormone therapy. Having children in the future is very very important to her. The oncologist she saw in Wollongong essentially told her there was little chance for that, as she would need to be on hormone therapy for 5years with the precautionary removal of her ovaries at 35. I know each cancer case is different and very complex, but I would like her to feel like she has all the current information, exhausted every avenue, & has access to the most up-to-date modern options available. (She wasn’t even offered the option of Zoladex to protect her ovaries during chemo.) If anyone has a recommendation for a good second opinion oncologist in Sydney/Wollongong, we would be so grateful! I’ve heard good things about Prof Jane Bieth & Dr Sanjeev Kumar?
Anxiety-surgery next week
Dear all, Just needing some support after reading a lot of stories on here. I was diagnosed with BC back in June 2020- triple negative breast cancer with 3 lymph nodes involvement. I started chemo very shortly after with the AC/Taxol-Carbo combination and the keytruda immunotherapy every 3 weeks and is still going. I am 37 yo and also have the BRCA2 gene. I finisjed chemo on the 3rd of December and since then my anxiety has really increased. On the last day of my chemo i also had a scan and while at the scan the technician told me the size of the tumour and it appeared to have increased in size since my mid chemo scan which frightened me. After the scan the technician told me that the dr has said chemo has worked. I called my surgeon after who then said to me the scans are good and i shouldnt worry about it and she also said that the scans are as good as it can be post chemo. Even though she said that it hasnt seemed to have managed my anxiety. I feel my lump bigger compared to middle of chemo and the last two days i feel like i can feel the lymph node lumps in my armpits which i didnt feel since mid way into chemo which has been freaking me out. Throughout my chemo my surgeon and oncologist has indicated im doing well the mid way us have indicated the tumour is shrinking but my final scan seemed to have indicated an increase since the midway scan and i had reassurances from my surgeon and that hasnt made me feel better. Now im freaking out and need some feedback on how everyone have done and experiences with neoadjunct chemo as im hoping for the best outcome at surgery. Sorry long message. Thank you.
Stop the ride...going too fast
I found the lump on Saturday15th August. They kept saying cyst. By Thursday I was told over the phone buying a box off nappies it was cancer. The bad news kept coming from there. It was triple negative. It was grade 3. It looks to be the Angelina Jolie gene one. I had 2 surgeries last Tue and Thurs (lucky I found it early and small but it was in 2 nodes) I am seeing the surgeon again tomorrow then the oncologist later this week. All this terminology is a new language that I have yet to discover the meaning for. I don't know if I'm stage 1 or 2. Just that its TNBC and Grade 3. Likely 6 months of chemo, they've said radiotherapy and the dr was hinting a double mastectomy and reconstruction. I am 38. I am exhausted. I'm confused. I'm scared and I have 2 little girls who need me. They keep saying not to google but it's all I can do. I am terrified.
Triple negative breast cancer
Hi, I’m 34 and just been diagnosed with Triple-negative breast cancer. It hit me hard as I have 2 small children 3 and 9 months and had to stop breast feeding instantly and have a lumpectomy n sentinel node resection. I’m very thankful I’m stage 1, so far lymph nodes r clear but get final results next week. Was a grade 3 tumour that I caught early. I’m looking at chemo, genetic testing and double mastectomy or radiation but thinking of the mastectomy. Just needing info on chemo for this type and how your effected by it? Will I get very sick and loose my hair? How fast do you recover between cycles? I’m in a bad dream that I can’t wake from! Has anyone had this and not had chemo? thanks guys x
Newly Diagnosed also have BRCA2 Gene
Hi, Sorry I'm a newbie, apologies if I'm posting this in the wrong section. I have just been diagnosed with DCIS. Had a lumpectomy 1 week ago and will get results tomorrow. They have said if it's nothing worse will be followed by a course of radiation. Although - everything appears different for me because I have the faulty gene. My team of people are ever so gently "pushing" me to have a double masectomy to remove all risk. I also had my ovaries and tubes removed a month ago - as risk reducing surgery (as also a high risk of Ovarian cancer with BRCA2). Which has thrown me into early menopause. I am 45. Wondering if there are any others on this forum with the BRCA1 or 2 gene that are having a similar experience.
IDC, 30 years old, BRCA1
Hi, My name is Steph. I’m 30 years old. I have recently been diagnosed with breast cancer (IDC). I also have BRCA1 gene mutation. i have had sentinel node biopsy which came back clear (3 lymph nodes taken). this coming Tuesday 10th of April I will be under going a bilateral mastectomy with reconstruction (expanders/implants?). My Mum had breast cancer 5 years ago, aged 57. A little about me... I am a single mother to an almost 7 year old boy. I have an identical twin sister. I work as a nurse in aged care. i would be interested in chatting to other women Dx with BC around my age. I’m also happy to chat with other women of any aged dx with BC. thanksChanging life
It has really been a challenging 2 months for me and my life is changing so fast. I am 47 and was diagnosed with a 1 cm DCIS, end of October. Had a lumpectomy and a re-excision in November, No micro invasion. BS then referred me to RT. My gut feeling is to skip RT and have bi-lat Mastectomy due to family history of bc. I met up with a PS to discuss reconstruction Also met up with the radiologist oncologist. My mind is just spinning because I was afraid that I was making too drastic a decision to have bi-lat mx. I think I was less scared of having a mx compared to making a wrong decision. Fast forward and 2 days ago, my genetic test came back positive for BRCA 2 abnormality. This now takes the decision out of my hands and I will have a bi-lat mx for sure. I am surprisingly relieved that I now have certainty that a mx will not be a wrong decision. But I am now sad and worried if I passed this terrible gene to my kids. They are currently too young for testing. Now my mind is also filled with making plans for more surgery to remove my ovaries and tubes. And I am reading up about all the terrible side-effects which I will have when my body becomes suddenly menopausal. On top of that, due to my genes, I have increased risk of pancreatic cancer which is difficult to screen and is normally found out too late. It is funny how one’s life can change in a blink of an eye. We really must live our lives everyday like it is the last. Treasure every moment. Don’t waste time being angry or negative or cross. Count our blessings and look for the silver lining behind every cloud.
Newly diagnosed at 32 and Brca1 +
Hi all, I would like to share my journey so far too. I keep reading all these amazing posts and I 've been drawn so much power from all of you!!! I 've recently relocated from UK to Sydney with my husband and our little daughter and we were really happy to enjoy our new full of sunshine life here. I have had some abnormal bleeding since we first arrived and I decided to visit a GP. I 've been really cautious with any symptoms as I 've lost my mum from ovarian cancer and was tested positive with the Brca1 gene. I have also tested positive few years back but all the doctors in UK were reassuring me that I am too young to get any type of cancer at this moment. I was terrified that I had ovarian cancer, I had an ultrasound and I couldn't sleep until I got the results back. Long story short I 've had they found a polyp and a cyst. Few weeks later I had another ultrasound to see if anything changed, the cyst was gone but the polyp was still there and they booked me in to have a day surgery to remove it. Following all this testing my GP (thank god) suggested me to have a breast ultrasound too just for screening. They found a tiny cyst and suggested to have a biopsy done just to put my mind at ease. Her actual words was - "If it was someone else I wouldn't suggest a biopsy, it is definitely a cyst, but because of your history I would suggest you to have it done just to put your mind at ease"!!! Results came back, triple negative breast cancer!!! I just couldn't believe it !!! I just had a baby! I am so young, how it is even possible!!! I couldn't sleep or eat for 2 days (I 've got the results back on Saturday) until I met the doc on Monday. She reassured me that it is curable and I should calm down and I did. I started feeling lucky, happy that I was in Australia and I found it so early. If I was in UK I would probably found it when it would have be a massive lump. (They don't check you if you have no symptoms). I have started AC chemos last week and they are going really well. Minimum side effects at the moment and still no hair loss. Does anyone know when you start loosing hair with AC? I will get 2 cycles of chemos following with double mastectomy as even with an early stage cancer I have lots of chances for recurrence. With love Catherine