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Re: ? Chemotherapy
HiTeta I'm sorry for your diagnosis- it is a real downer. Hope your doing ok. My diagnosis was 3 years ago and I went onto the option of chemo first, surgery (lumpectomy) radiation therapy, chemotherapy and immunotherapy and hormone therapy. There’s many variations in breast cancer type and we each have our own health and age or stage that our doctors consider and which we think about, but I think the plan I followed is fairly common for those of us who are in the Triple Positive breast cancer type. I don’t have regrets about my treatment choices, so far, 18 months after completing the intravenous treatments surgery and all I am still “no evidence of disease”. A choice I could have made differently was to have a mastectomy but I took the lower impact surgical option. The treatment plan took about 15 months from start to finish and I still on hormone therapy (oestrogen blockers) for another 7 years. The treatment is not a cake walk but it was manageable, I had a few different side effects each time but I do feel I have done what I can to be here. I am altered by having had treatment and still having treatment but I feel grateful to have had the benefit of being treated. I am now very actively engaged in work, travel, community, sports I enjoyed and life again. I understood from the medical advice that the statistics from trials were pretty solid and survivorship for HER2+ patients has been turned around by the treatment with better outcomes over the last decade. I am curious but ran out of time to have genomic or genetic testing - I was about to start chemo when I asked my oncologist and she more or less indicated that it was something I could do but with my breast cancer type (Triple Positive) it was unlikely to result in her varying her recommended treatment plan. I hope this helps. If you’re Triple Positive it’s good to know it’s less common than hormone positive, so friends of mine who’d been treated for Oestrogen or Progesterone positive breast cancer were puzzled by the treatment plan I had. Go gentlyTeta and sending positive energy your way.0Views1like0CommentsRe: Surgery and Radiotherapy
HiIrms I am sorry to hear you’re going through this. Sending lots of positive energy your way. I am conscious the treatment plans and recovery times are different for everyone, depending on their breast cancer type and presentation; but I hope my experience gives you some insight. I waited nearly 2 months between my lumpectomy and commencing radiation therapy. Recovery from surgery was straightforward- I had neo adjuvant chemotherapy and the surgery was to remove the remains of a lump and take sentinel node biopsies (but lymph nodes left in place). I did not have to go back for a second surgery, healing was straightforward and it was about 6 or 7 weeks before I started appointments for my radiation therapy. Getting a definitive start date for commencement of radiotherapy was not straightforward - I heard from the radiation treatment centre about 1 month after surgery just to book me in for assessment by the oncology radiation specialist some weeks later. There was another appointment scheduled after the assessment to be “measured up” and have some target tattoos (9 little dots) and a briefing about breathing techniques. The breath holding is to move the heart out of the way (my lump was in the left breast). I was sequenced in and commenced about 2 -3 weeks later. I remember finding this period of waiting and uncertainty difficult at the time. I was impatient to get cracking and get the 15 cycles done as I had another 11 chemo and immunotherapy treatments to go once radiation therapy was finished. I found the radiation therapy more tiring than I expected but I think the fact it was coming at the end of 6 doses of chemo and a long general anaesthetic for the lumpectomy was probably a contributor. Looking back (2 years later) it feels like hardly any time but I remember being puzzled about why it (seemed to me) to be a long wait and uncomfortable with feeling uncertain about other arrangements and commitments I was trying to arrange because I didn’t have clarity about the schedule for my radiation therapy. Sending you best wishes.2Views1like0CommentsRe: Neuropathy- need some moral support
HiAnnabannana and Sarah-2026 I developed neuropathy in my feet and hands after the first couple of TCHP doses of chemo for triple positive breast cancer, about 2 1/2 years ago. At the time my oncologist reduced the dose a little, I found this story about how a young surgeon got her dexterity back a good news story and it motivated me https://www.abc.net.au/news/2023-07-04/kath-goodall-surgeon-bowel-cancer-shock/102554760?utm_source=abc_news_app&utm_medium=content_shared&utm_campaign=abc_news_app&utm_content=link 2 years on my hands are a lot better and my feet are better than they were. I hope this counts as “good news”! The main ongoing effect is felt mostly at night. If my feet are sore Panadol helps. It could sound a bit “woo woo” but yoga makes the biggest difference. It isn’t fun getting neuropathy so I am sorry to hear about your experience. Now, in my case, it is manageable, so I am oping yours will be in time. Sending you positive vibes for your remaining treatment.18Views2likes0CommentsRe: HER2 positive diagnosed Dec 24 -
HiIce_Ti I am very sorry to know about your diagnosis. It’s great that you’re asking questions and being offered alternatives. I was triple positive and finished the treatment plan almost identical toAnna15 and with a similar partially near complete response. A colleague had a complete (total) response and the surgeon couldn’t find the tumour at surgery. After the neo adjuvant chemo and surgery she had immunotherapy. The reason I opted for the chemo was because the data and trials seemed to indicate a good longer term outcome. I was also told having chemotherapy before surgery has additional benefits to shrinking the tumour - they can assess whether the specific drugs are as targeted and effective as they can be for you, by seeing how your tumour or lump responds mid way and before surgery and again after surgery. Also, the chemotherapy can attack any cancer cells in “distant sites” (if they are lurking there). I found a decision tool on the Breast Cancer Trials network once I had already started chemo, but it might be helpful to you to compare different options. It’s just good to understand what treatments other people are experiencing too and why they might be different to you. https://www.breastcancertrials.org.au/breast-cancer-resources/neoadjuvant-patient-decision-aid/?srsltid=AfmBOop-At08xMVuBWf-8e3e4pMFKgTLdizAFQKpYtWO8SjhJJ6ANKMt Ice_Ti wishing you all the best15Views0likes0CommentsRe: Newly diagnosed and waiting for appt. breast becoming more tender as I wait :-(
HiMillymonster I am sorry to hear about your diagnosis and the recurring hurdles you have encountered to arrive at a diagnosis. This is a tough phase and I’m sending you big virtual hugs as you try to find out what this might mean for you. It sounds like you’re triple positive and ILC which is the same type I had. My tumour was 3.8 cm in the left breast situated near the nipple. So much about breast cancer, including triple positive, is variable including treatment as it takes account of a whole range of things, some relate to family history - so what I experienced may not be what is recommended for you. However in case it helps to give an idea my treatment was broken up into 5 phases: Phase 1: Neo -adjuvant (pre-surgery) chemotherapy /immunotherapy, comprising 6 doses of 4 drugs (“TCHP”). I had a port surgically inserted under the skin in my right arm as these drugs are given intravenously over approximately 4 hours. I would have 3 weeks off between doses. Phase 2: Surgery: my breast surgeon recommended a lumpectomy and it took place about a month after the 6th dose of TCHP. Phase 3: Radiotherapy. This started 6 weeks after surgery. I had 15 of radiotherapy doses - every business day for 3 weeks. Phase 4: Phase 4: Immunotherapy and Chemotherapy: 11 doses of a combination called Kadcyla. This extra bit of chemo was needed because the pathology in my lumpectomy showed I still had a few little pieces of the tumour and cancer cells. It was about 14 months from the first dose of chemo to the last (March 2023-May 2024). Phase 5: hormone therapy (in reality hormone suppression therapy aka endocrine therapy). This commenced during my phase 4 and has continued- I take an Aromatase Inhibitor tablet called Letrozole every day. It is aimed at preventing recurrence of the breast cancer associated with my oestrogen and progesterone positive attributes. Millymonster I hope you can find some calm during this uncertain time. The not knowing and challenges in waiting took a lot for me to get used to, mainly because I had a role where I wanted to let people know what they might have to change in their expectations of me. There is a Triple Positive private group which you can ask to join also several good recordings and podcasts about what to expect. I found this resource useful too, it’s a treatment and decision making guide put out by Breast Cancer Trials in collaboration with BCNA and others. https://www.breastcancertrials.org.au/breast-cancer-resources/neoadjuvant-patient-decision-aid/?srsltid=AfmBOop-At08xMVuBWf-8e3e4pMFKgTLdizAFQKpYtWO8SjhJJ6ANKMt Wishing you lots of positive energy and do ask questions of your GP or treating oncologist or surgeon. This network also has so many wise people on it too, so you’ve come to the right place.0Views2likes0CommentsRe: How Do you decide what treatment when there are so many options?
HiCaptnK I’m very sorry to hear about your diagnosis and can remember being faced with whether or not I had fully considered all options. My GP suggested a consultation after I had seen the oncologist and surgeon, to help me tease out any residual questions. Some months into my treatment I found this decision aid (by Breast Cancer Trials) and it provides treatment option information, so breast cancer patients can factor in what type of breast cancer they have been diagnosed with. https://www.breastcancertrials.org.au/breast-cancer-resources/neoadjuvant-patient-decision-aid/?srsltid=AfmBOoo43CT012ebs0HnG2RBmiQibcY6TmNLGLeo7nP5cPLFy3zB5X4D In a nutshell, recommended treatment really depends on the specific characteristics of your breast cancer diagnosis. I found it a steep learning curve, but step 1 is to good to get clarity on the “type” of breast cancer you’ve been diagnosed with. In my case I had Invasive Lobular Carcinoma (ILC) which was Oestrogen positive, Progesterone positive and HER2 positive (aka Triple Positive). It’s a less common combination, so it was helpful for me to know why my treatment approach and drugs didn’t look the same as the treatment some of my friends had. Some people also do genomic testing or oncotype testing (I didn't). I had Neo adjuvant (pre-surgery) chemo and immunotherapy, surgery, radiation and post adjuvant (post-surgery) chemo and immunotherapy. Treatment with “ the lot” :-) over a 15 month timeframe. And sending positive energy and virtual hugs your way. I2Views2likes0CommentsRe: Returning to work and finding the new normal
HiDaisymoo what a roller coaster you have been on. Amazing to get through it - salute! I resumed work last year, after 14 months of treatment for Triple Positive breast cancer, completed in April 2024. I was feeling so depleted and took a gap year to process what I had been through and physically restore myself. I had just kept putting one foot in front and had worked very part time and done a short course during my treatment as a way of staying in touch with my professional identity. The gap year helped me gain confidence in my mental and physical stamina and the exercise helped work through managing the side effects of the hormone Inhibitor I’m on (called Letrozole). Before BC I was in a professional leadership role and very busy, engaged in the community and busy with extended family carer responsibilities. During my gap year I noticed what energised me (being around people from my profession discussing challenges and ideas) so I resumed work - at 3 days a week. I’m also on 3 boards, I don’t think I can sustain the breadth so will review this but I am chuffed to be doing something I thought I’d never do again when I was having chemo and “the lot”! It’s gym for my brain and my wellbeing, I am still working out my new limits, and whilst I haven’t got it quite right, it’s been satisfying and comforting to know, when pushed, my brain can blow the fog away. I prepare carefully for more complex days and take things out of my social calendar to allow for rest. I still pause to reach for some words when that used to come easily, but I feel being pressed helps me become more verbally versatile again. I do work in a demanding role but I have deliberately narrowed the breadth of expertise I will give. Dealing with high demands I can cope with but I find difficult people energy sapping so I avoid them if I can! I would say everyone experiences their after effects differently and would say what works for me might not be how others wish to be. I also thought about my husband (who is active in his work and has always supported my work and community activities) I didn’t want my return to work to be brilliant, but to be hollowed out by work and be a shell at home. He’s happy for me if I’m happy. All the very best, hope this helps!32Views3likes1CommentRe: How to cope
Gerry2 I am sorry to see you have had a recent and significant diagnosis; it must have been quite a roller coaster. I am just jumping in to say welcome to the network and I hope your treatment discussion goes well. I can remember how surreal it felt knowing my life would soon change (with treatment) and having no sense of impairment.113Views2likes0Comments
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Invasive Lobular Cancer (ILC)
This group is for anyone diagnosed with invasive lobular breast cancer (ILC), which begins in the milk-producing lobules and accounts for around 10% of invasive breast cancers (US statistics). Connect with others, share experiences, and access peer support from people who understand the unique aspects of an ILC diagnosis.Triple Positive Breast Cancer (TPBC)
This group is for people diagnosed with triple positive breast cancer (TPBC), a subtype that is typically characterised by higher levels of ER, PR and HER2 protein . While we share personal experiences, please remember that the information in this group is not medical advice—always speak with your healthcare team for guidance.Let's talk: vaginas, menopause & me
PRIVATE GROUP. This group is a safe, supportive space to talk about sexual health and emotional wellbeing during and after breast cancer. We discuss topics like menopause, vaginal dryness, pain during sex, UTIs, and changes in libido, and share ideas and products that may help. Whether you're navigating intimacy with a partner or reconnecting with yourself, you're not alone here. This is a place for open, respectful conversations and shared understanding.Work and breast cancer
PUBLIC GROUP - This is a space to connect around the challenges and questions that come with managing work and breast cancer. Whether you're navigating time off, returning to work, dealing with workplace conversations, or exploring your rights and options, you're welcome here. This group is open to the public (not just members of our online network) to help broaden access to important information, practical advice, and peer support.5 months ago15 Posts
