Duration of endocrine therapy in premenopausal Australian patients
Hello all Very long time since I’ve poked my head into this discussion forum. I’d like to hear what other younger pre-menopausal patients around the country are being recommend regarding duration of total endocrine therapy. I myself am now onto year 6 of ovarian suppression and AI, a choice I have continued although I could have switched to tamoxifen alone. Please comment with your doctors advice and your stage/diagnosis. Are you doing: 5 years ovarian suppression and aromatase inhibitor 7 years ovarian suppression and aromatase inhibitor 10 years ovarian suppression and aromatase inhibitor 5 years tamoxifen +/- ovarian suppression and then further 5 years ovarian suppression and aromatase inhibitor 10 years tamoxifen alone
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!
Start Radiation Tomorrow
Hi everyone - just wanted to post that I start radiation tomorrow (IDC, grade 1A, ER/PR positive). It simultaneously feels like it's taken forever to get to this point (diagnosed 23/12/22, surgery 03/02/23) and like it's happening so quickly. Feeling sad about leaving my kids behind with Dad ( 2 and 4 years old), but hoping and praying that we'll all grow through this experience. I'm so encouraged by all of you and how brave you all are. Thanks for sharing your stories.
First AC chemo yesterday
I had my first chemo session yesterday. I was doing ok, had lunch and had a nap a few hours later. I wake up from the nap a little hungry and while waiting for food I started feeling a bit funny/nauseous so I took one of the anti nausea pill I got prescribed and.. it did absolutely nothing! I felt absolutely shit and nauseated for hours and was stuck between bed and bathroom, but I couldn’t vomit anything nor put anything in my stomach. For three times the nausea sensation would also work up until I sneezed loudly? (This was odd as sneezing alleviated me for a couple of minutes before going back to feeling shit). Now, I slept fairly well and a part for a little headache I think I am doing ok, but I am still in bed wondering whether I should get up and have breakfast, wait a little, take the anti nausea pill now before I eat or can the anti nausea pill be the reason I was more unwell? I want to see how I go today and if I can pin point what went wrong before contacting the chemo nurses with the same nonsensical rant.. but also don’t want to be sick again today or ever 🤦🏼♀️😂 any suggestions from the gorgeous women in this group? I also had just a few tiny red spots (petechiae) pop up around my chest and upper arms, I am not too concerned but glad for any comments (I will certainly raise it with the nurses anyway) as personal experience could definitely help prepare for the nurses vague answer. 💫First chemo!
Hi everyone! I had my first chemo session today, starting with AC. Though I was warned and given a strong anti-nausea tablet before they started, I was absolutely not prepared for the crippling nausea that has ensued! I was fine throughout the treatment but on the way home it got worse and I've had waves that have had me over the toilet, sweating and gagging (but no actual vomit yet!). I have taken emexlon which seems to work for about 5 minutes and then the relief wears off. If it continues I will of course bring it up with my team but in the meantime, does anybody have any home remedies that have helped keep the nausea at bay? Stay strong team! XHormone Therapy advice for young women who want to have children
Hi everyone 😊 I’m seeking some advice on what hormone therapy is best for younger women who want kids in the future. I have Grade 1 multifocal IDC+DCIS, 80% hormone positive, ER- cancer & I’m premenopausal, with no children. I was told after 2 years of hormone therapy I can try to fall pregnant (…but am hoping 1.5 will be enough?) I have been given three options for hormone therapy: •Tamoxifen only •Zoladex + Tamoxifen •Zoladex + Exemestane (Aromasin) All offer similar coverage in regards to my type of cancer, but I was wondering if there are any differences in regards to future fertility? ie. longer detox periods required before falling pregnant, or potential fertility issues after long term use, eg Zoladex or Exemestane? I have also read that Exemestane (Aromasin) is an *irreversible* steroidal aromatase inhibitor. I don’t want to be on anything that could irreversibly damage my oestrogen production.. Fertility-wise, does anyone know if this is something to avoid until after having children? I’d really appreciate any advice & tips for having the best chance of getting pregnant in 2 years! XZoladex 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!)
Bad doctor experience
So, I had an interesting appointment yesterday with a neurophysiologist. I got carpal tunnel syndrome last year after taking Letrozole, and have since changed to Arimidex. I still have tingly fingers, but I can feel things and my hands are stronger, so decided to get reassessed to see if I could avoid surgery (simple and short surgery but loooong recovery period). After the test, he was telling me the results, but was very confusing. He said I’m not an oncologist, all I can tell you is from what I know. But you’d need to get assessed based on your whole history. Me: ok, so should I book another appointment? Him: no! You’ve already done it! Me: ...so then should I have the surgery? Him: I can’t tell you what to do without a full assessment without taking your history into account! Me: so how would I get that? Him: you’d have to make an appointment with a neurologist, like me, and get it checked. Me: so then I do need another appointment, where the doctor could check everything and then tell me what to do. Him: no! You don’t need another test! You’ve just done one! Me: 😶. Him: you’ve got this condition, it’s not going away, so based on what I know, I’m telling you fix it! Me: ok, I know it needs fixing and surgery is probably best. But are there any known long term effects of the surgery? Him: long term it will kill you! Me: 😳😳😳😳😳😳😳 Him: you had bca, did you have surgery straight away or wait? Me: straight away, in my case. Him: so there you go. At this point I decided to leave. Very confused and very down. Am I wrong to think you can’t compare ca with carpal tunnel syndrome? They don’t work in the same way. And not all bca patients have surgery straight away. But most importantly, he didn’t answer my main question, about the long term effects of the surgery and recovery time. He just mentioned the word no one wants to hear in a doctor’s office: ‘kill’. I googled afterwards and there are different ways to control carpal tunnel syndrome, none of which he mentioned. Also, my results were not worse, if anything they were better. But it was just the attitude. And whenever I tried to explain smth quickly, he’d cut me off straight away and waffle on for ages, then still not allow me to speak. Is it my imagination, or was this experience really bad?Treatment decisions
Hi everyone! I was diagnosed with early stage, grade 3, ER/PR+ breast cancer in early April shortly after my 28th birthday. I had a lumpectomy early May and it came back with clear margins and clear lymph nodes (but not without a good infection and some extra fun in hospital!) I'm currently in consult with my team on my next stage of treatment. Radiation is a given and I'm yet to see my medical oncologist but chemotherapy seems to be highly recommended for me but ultimately it's a decision I must make myself. I'd love to hear other people's decision making processes in a situation like this and the reasons why you may or may not have gone down that route? Stay strong x
capecitabine (oral chemotherapy) after AC/TAXOL, radiation and surgery
Hello! Just wondering if anyone has been offered capecitabine additionally to their care after having standard of care treatment for Hormone positive, Her2 negative BC. I am 29, have completed 8 rounds of chemotherapy plus surgery and will be having 25 rounds of radiation. My oncologist has recommended 6 months of capecitabine as an additional adjunct therapy. I had a second opinion with another oncologist and she didn't seem to have the same opinion. I have done a little bit off research but there isn't a lot of people with hormone positive BC that have been offered this (that I can find). Thoughts? Thanks ladies! x