Grade 3 Oncotype Test Chemo decisions
Hi all, I’m in the challenging time of making decisions about chemo and would love to hear experiences from others journey particularly with any similar cancer. I have had lumpectomy on left breast results showing- Stage 2A invasive carcinoma 25mm Grade 3, HR+ PR-HER2- with lymphovascular invasion but all 13 lymph nodes sampled as clear. I am 39yo and very active and healthy (apart from this)! I pooled my savings to get the oncotype DX ordered- I am now waiting for results. (Still can’t believe we have to pay $5000 for this). I understand the Grade 3 PR negative and lymphovascular invasion detected are likely risk factors that tip towards benefits of chemo. But I have been reading more about the effectiveness of hormone therapies like OS+AI and that perhaps I could avoid chemo. I will let you all know my score when it comes back- I hope it’s low but if it’s high I’m facing such hard decisions that any similar experiences may help! thank you
Anyone had TC chemo?
Hi, I am likely going to start chemo possibly next week. It’s will be TC for three months. I am very worried about it of course. I would like very much to reduce my risk of peripheral neuropathy and wondered if there’s any advice on best things to use for hands and feet. Does anybody have any other advice or experiences from this sort of chemo?
Radiation post DIEP
Hello all, I am exactly 4 weeks post double mastectomy and DIEP (including complete node clearance) which I had after 6 months of neo-adjuvant chemotherapy. I had TNBC in my right breast with 3 nodes involved on the same side. My pathology report said I had clear margins and a complete pathological response 🙏 I have now been given the option of skipping radiation if I want to. A new study (B-51 study) published last year found that patients with complete pathological response to chemotherapy and a double mastectomy don’t benefit from radiation therapy. My question is has anyone skipped radiation or was given the opportunity to skip it and chose not to? Also, has anyone with a double mastectomy and DIEP done radiation and what were the side effects on the breast? Lastly, has anyone received radiation in the neck region and what were the side effects like? Difficulty swallowing? My radiation specialist suggested if I choose to go ahead with radiation she would recommend the sub-clavicle nodes in the neck (along with breast and armpit) as they’re the only nodes I have not checked surgically. Would be keen to hear anyone’s opinion or lived experience. Thanks 😊
Cumulative Side Effects of Chemotherapy
Hi, I have had surgery for BC in left breast and lymph nodes which has been follwed by chemotherapy. I completed my last session last Tuesday and have found the side effects this time very intense. Apologies in advance for the topic, it is not pleasant.At first, Following my final infusion I was unable to go to the toilet and since then (after using coloxyl and prunelax) I have experienced 'urgency' and have had to rush to the toilet frequently. I feel nauseous and have had pain in my stomach. Until this cycle, side effects were unpleasant, peaking n the expected days, etc. but this has been been really brutal. Is this normal? I am so looking forward to things settling down and I am grateful for the excellent care that I am receiving from the amazing oncology team. In about three weeks I will commence radiotherapy which I will receive every week day for five and a half weeks then I will see my oncologist and go on hormone blockers for 5-7 years. I understand that the side effects of these are unpleasant but as I am well passed menopause I believe that this will not be as bad as if I were a younger woman. I am 69 and was working .5 in an academic position until my diagnosis. I know that I am not going back to that position, this experience has been life changing and I have noticed some cognitive changes. They are not 'severe' but I am nowhere near as sharp as I was. I am accepting that and just hope to recover. Is it normal to experience such intense side effects on the final round? Kind Regards, Anni
Taxol side effects
Hi all, I’m starting paclitaxel chemotherapy this week (once a week for 6 weeks). I’m wanting some insight into how I might feel. It’s a busy time of year and I’m a single mum. We have dance concerts and holidays booked. Is it like a hangover? Or more like a bad flu where I’ll struggle to get out of bed. What are the main things I will struggle with? I am going to do ice and to try avoid neuropathy and hair loss. Many thanks for your insights 🙏🏽
Considering EndoPredict before accepting Chemo
Hi everyone, I did a search and this topic hasn't been mentioned in a while since 2023. The main difference seems to be that EndoPredict ($2980) is now eligible for partial Medicare rebate ($1103). However, it is still a considerable cost for many of us. I'm having to decide whether to take the test and hope that maybe the outcome could be that Chemo is not of benefit to me. Going by what the medical oncologist told me it is doubtful that Chemo would not benefit me - the use of "aggressive" to describe my stage 3 cancer makes me think that. Though he did still mention the testing to me so I had a choice. I'm torn and scared. With my previous cancer (liposarcoma) I didn't have Chemo so it is an unknown scary beast. My two main concerns with Chemo are the heart and bone damage risks. I get that the decision to have the test is a very personal one and nobody can make that choice for me. For me it isn't just financial, the main choice is whether I consider Chemo is worth it. Even if the test comes out a low percentage for recurrence, is that enough for me to say no to Chemo? After all, the test is the risk of recurrence in 10 years and personally, I'm now on cancer number 2 (different types) in a 14 year period. Have many of you have taken the test? Or would you take it now that it is partially rebated by Medicare? Thank you for reading and being sounding boards.What The Heck Radiation and Chemo? What to do and the side effects, are freaking me out.
In July, I had a mastectomy with lymph nodes out, then they found cancer somewhere else in the body with completely no relation to the breast cancer. If the breast cancer wasn't enough. So, now I have to deal with the other cancer site, which is colorectal, and I have just had an appointment with the radiation and chemo doctors at Royal Brisbane Women's, and I don't mind admitting I'm freaking out. The side effects of the 50/50 cure seem to be so much worse than the actual disease. Yes, I know that the disease, if left to run riot, equals, you know. But, after all these years of funding and funding, why do we not have something better? It's so weird that since my surgery, I have had posts popping up on my socials left right, and centre. Like the "Cure from Japan with Bee Venom" seriously makes me want to find a hive and fly into one with wanton abandon. A "Breakthrough in South Korea, scientists can turn cancer cells back to normal cells," .. Say WHAT? (frantically looking up flights to S Korea) Then there is Ivermectin, Febendazole, and something blue? I mean, I have never paid attention to these things before, but now, my ears prick to the slightest twitch and rustle, like a kid who hears a lolly bag open within a 10-mile radius. I can't help it, I am confused about everything, am I the only one? When I confronted the chemo doctor about all of my concerns and questions, he said If you don't do this, you will be in palliative care in 3 months .. What, hang on what the heck???? I mean, just like that, he said that without any pause or thought, I was never advised that before, and then said, "Whatever you decide, we start therapy on the 28th July, and proceeded to walk out. This journey is brand new; everything has happened since July, and it is no lie, akin to riding a faulty wooden roller coaster with loose nuts, bolts, and rotting timber, operated by a maniacal, crazy clown, in the middle of a thunderstorm, who looks like he has been dragged through a hedge backwards. Just to clarify, the clown is the cancer. I have questions, a thousand of them, with no end of these questions in sight. Where are the natural alternative therapies, like, singing bowls, or is humming drums? What about the milk from an Aztec goat? Yeah, or the petals from a rare flower that only grows on top of some hidden temple in the Amazonian forest, which, on recent reading, is currently swarming with giant anacondas in a breeding frenzy, ugh! Ok, I made up the goat and flowers. No, there is only radiation and chemo. Sigh! I don't know what to do with this option. I have been told my cycle will be 28 days straight of radiation with chemo. I can look forward to a burning bum hole, diareah, burnt skin, possible issues with legs and bladder, and kidneys, and all sorts of other stuff. However, I was told that everyone is different and responds differently. Well, I have to say I don't feel that comforted at all. I am overwhelmed. If anyone can share with me their experience with radiation and chemo, I would love to hear from you. And if anyone knows where I can get my hands on an AZTEC goat in Brisbane, I would love that too!! Goats are ravenous but cute.
Is there a window period that chemo should start?
I was recently diagnosed with IDC - had lumpectomy and 2 sentinel nodes removed in first surgery on 17th June, in one section of the margin they found DIS right to the edge so needed 2nd surgery 2 weeks later which was all clear thankfully. Was due to start chemo 2 weeks after that however developed post surgery infection and was in hospital for 4 days, chemo has been delayed another 3 weeks so its been quite a while since my first surgery. I'm concerened about the delay, has this happened to anyone else?
Chemo treatment decision
I was diagnosed with IDC in my left breast in April 2025. I have had surgery and am now navigating treatment options. I had my tumour tested with the Oncotype DX test and it came back in the middle range for benefit of chemo being possible. I was hoping it would come back as either low score so no benefit or high score large benefit so I didn’t have to make the decision on whether to proceed. I discussed with my oncologist who was surprised it had come back as the score it did as he was convinced it would have been low. My tumour was 16mm had some lobular feature and DCIS and was also vascular but hadn’t got to the lymph nodes. So I do have an additional risk factor there. I feel like I want to know I’ve thrown everything at it so if it comes back I know I did my best as I’m a what if person. He supports this and my age he supports a decision to do chemo if I want to. I just want to hear stories of people who have had similar situations as I know the decision is individual based and that chemo won’t be a walk in the park either. thanks in advance for any insights.
