Newbie - not the 2024 I was hoping for!
I was diagnosed just before Christmas 2023 with invasive lobular cancer - a journey that just keeps unfolding. Initial diagnosis scans showed the ILC was 3.3 cm, then MRI 6 cm and the pathology results ended up at 7 cm and another 1 cm LCIS spot in a totally different area. I had two surgeries- a mastectomy and a positive sentinel node, followed with an axilla clearance. I have some cording post surgery which physio is working on. Next week, I start chemo (AC and then Pacilitaxel) followed by radiation and then endocrine treatment. Not what I was hoping for the year I turn the big 5-0. I really appreciate reading other’s experiences, and the Q&As available here.
Does Grade 3 tumour always mean chemo?
I am 43 and newly diagnosed node positive ER/PR+ HER2- 21mm tumour Grade 3. Having lumpectomy and axilla lymph node surgery this week. My surgeon has confirmed radiation and the nurses have talked about hormone treatment (Tamoxifen). But every time I mention chemotherapy everyone goes silent and won’t say whether it’s likely or not… it’s driving me nuts. They say I need to wait for pathology after surgery etc, but then I know I have very limited time to be organised ahead of chemo if it’s required. I have long curly hair which is a key part of my identity so I am trying to be practical and look at how to manage the hair loss - especially for my children. I am thinking of getting my hair cut shorter first (soon) so that it’s better for cold capping if that is an option. Being Xmas period it’s impossible to get into my hairdresser so I need ti be organised. So my question is whether anyone my age has not been given chemotherapy for a Grade 3 type tumour. Any feedback welcome. Thanks!
New DCIS diagnosis in Brisbane
Hi all, I've had two lumpectomies now for DCIS, which was caught in a routine mammogram/ultrasound. I'm waiting for the final pathology results from the last op and will then move on to radiation therapy. I'm wondering what the wait times are like in the public system (probably RBH). My mum is worried I'll be waiting too long but the cost from the private surgeries/pathology/screening/anaesthetics etc. was around $5K before rebates. Does anyone have an idea of how long I'll wait and if that wait will be okay?Zoladex immediately after IVF
Hi ladies, I was wondering if anyone has had their Zoladex injection straight after an IVF cycle? My lymph nodes were clear so I don’t need chemo, but my oncologist wants to put me on Zoladex & Aromasin for 5 years, (with a break after 2y to have children - I’ll be 38/39). I am almost through an IVF round to freeze my eggs & was wondering if it’s healthy or safe for your ovaries to be hyper stimulated & then shutdown immediately afterwards. Or is it better to wait a few days/week for them to return to normal before starting Zoladex? None of my specialists seem to be communicating with each other, so I’m finding it difficult to know the urgency or safety around the issue. I don’t want to damage my fertility for the future, or increase my recurrence chances.. Would really appreciate any advice! *** A bit of background on my cancer: I’m 36 & I have Hormone positive (80%), HER2 negative breast cancer, ki67 16% (3 tumours in the right breast). I had a single nipple & skin sparing mastectomy with an expander (in preparation for radiotherapy), 10.5weeks ago. My breast surgeon got clear boarders and tested 4 lymphnodes which were also clear, so seemed to think I would need no further treatment, (which I found unusual for early bc). My surgeon then took 3 weeks to seek a multidisciplinary meeting with an oncologist & radiation oncologist, after which she said I’d need endocrine therapy to be safe, but no longer need radiotherapy. It took 8 weeks after surgery to get an oncologist appointment - and now I am starting IVF, then endocrine therapy next week. It’s been very difficult waiting around, without being given much information. (Perhaps I’ll post another question, asking if such slow, conservative aftercare is normal!)
Newbie alert! First round of A/C complete - a few questions
Hi, Newbie here. Diagnosed on New Years Eve with a Grade 3, triple-negative DCIS in my left breast and axilla lymph nodes. Bit of a journey ahead - A/C, Taxol, mastectomy, and radiation. I had my first round of A/C on Thursday. I am recovering ok - Day 3 hit me like a freight train, but I gather that is normal? My scalp is already tingly, and today my skin (especially my face, chest and arms) feels dry, hot and sensitive, like after a sunburn, but I haven't been in the sun for days. What have you all used on your skin to soothe this? Is there anything that might also soothe my scalp? Conversely, the skin on my face is suuuuper soft, an unexepected benefit! Has anyone else noticed this? Also, is it true that what I experienced after the first round will be similiar in subsequent rounds, aside from cumulative exhaustion, or have some of you found that the side effects compound a lot each time? And does anyone know why I am thirsty to the extreme still four days later? I am so sorry to think that there are so many of you out there who are more experienced than I on this subject, but would really appreciate you sharing any insights you have. : ) Juliet
Chemotherapy
Hi my name is Janene & I was diagnosed with triple negative breast grade 3 on the 18th September. And had my first cycle of chemotherapy on the 26th October. The first 2 days after I was ok but really feeling now really fatigued very achy all over but no nausea as yet. How long does this last? I’m going to be having chemotherapy every 14 days for 4 cycles the weekly for 12 cycles. Heat packs are my best friend at the moment.
Surgery is on Monday
Hi all, I'm new here, having been diagnosed 3 weeks ago. And what a rollercoaster it's been! So comforting to have this amazing support network of those who have been through all of this before me. There's been a lot of information to absorb and whilst I'm sure I've been told, I'm not sure when I'll be able to take a shower after my surgery, due to bandages etc. It's not the thought of being unable to shower, just that it may be difficult to wash my hair! I'm considering shaving my head prior to Monday so it's one fewer thing for me to worry about. Plus it will be on my terms! I know that I'm going to lose my hair when I start chemotherapy and radiation anyway because I can't use a cold cap because of COVID. Do you think shaving my head prior to surgery will be too much for me to cope with because of the mastectomy? Thanks (sorry if this has previously been discussed. I'm still learning how to use the network)
Arimidex - first 6 months
I was terrified of this drug and the side effects and I even posted on here looking for support and info back in Jan. (The tone police intervened and I have stayed away from this site since because I was too scared to come back. Despite this, I am checking in one last time before I delete my account, in case it is of benefit to anyone newly diagnosed (like I was at the time, truly traumatised and then told I will be starting anastrazole). I want to share that my news is positive in relation to anastrazole. I don’t have any joint or muscle issues, pain, soreness, stiffness, whatsoever (which were my biggest fears). I have a few hot flushes in the evening and a bit of insomnia. I think my hair and skin is more dry and I need to use more leave in hair treatment now. My weight gain is entirely explained by what I have been eating during lockdown and not so much the drug! From the long list of worrying side effects you will doubtless end up reading, I have experienced enone that are ruinous. (I know I will have to monitor bone density.) Maybe things will change over time but I do remember I felt desperate to know or get some reassurance from someone about what the first few months would be like on an AI and was there an actual chance I would not get the worst effects? I hope this account may help someone facing anastrazole for the first time and knowing that it can be okay. Yes I could do without the hot flushes and longer term risk to my bones, but it’s not as bad as I imagined in my head, terrified and newly diagnosed, with little info to go on, or not the info I perceived as useful to me while having a very cold and underwhelming oncologist. I hope others will get the info that they need, here or elsewhere, and feel confident to speak the truth and advocate for what they need.
