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.
TC chemo 4 vs 6 cycles
Hello I’d like to hear from anyone who has had more than 4 cycles of adjuvant TC. I’m coming up to cycle 4 next week and I still don’t know whether that will be it or whether I will have to do more, because my oncologist has been on leave since straight after my first cycle. I’ve had a different oncologist and he has been consistory saying 4 but now is back tracking and saying it will be up to the other one! She won’t be back until early April, just before cycle 5 is scheduled. I am finding the side effects and mental toll very challenging. The uncertainty around how many cycles is playing into this because I can’t give work a definitive answer of when I’ll be back. I’m also a single parent and the fatigue is crippling. So I’d like to get an idea of in what cases would 6 cycles be given? If you had 5 or 6, why was that decision made? And what questions should I be asking of the replacement oncologist at my appointment next Tuesday to get some certainty around the timeline?
Very confused
It is interesting reading everyone's journey's and trying to understand what's ahead. I tried going prepared to appointments with questions I found online but I'm always feeling pushed out the door and there is also an accent barrier so I'm still not clear. I have a bit better understanding in that it is the same cancer type er +, pr-and hre2- as last time, when I had lumpectomy, radiation and oestrogen blockers. 2 years later it has recurred in the lymph nodes. I had 32 removed, 2 with cancer and 15 with cluster cells ( don't really comprehend that). The oncologist said that the odds for chemo stopping it coming back was low but as I haven't had chemo that is the only option to halt it. I couldn't understand the sort of chemo as I was reading all the info on types but now I'm more confused. I thought he said DC and the information sheet says TC but then the drug names as docataxel and cyclophosphamide. I'm having 4 cycles 3 weeks apart. Everyone mentions hair loss, eyebrows etc but is it useful in making leg hair go away? I'm in an admin role so don't know what to tell work as to what I can/can't do. Sorry, lots of questions. I don't personally know of anyone with cancer to quiz.
To port or not to port...
Hi, I have just found out that my WLE to remove 2 tumours wasn’t as successful as hoped and they didn’t get the healthy margin hoped for on one of them the, also the sentinel node biopsy came back as positive for cancer also. Surgeon has me booked in for surgery to remove first thing on Monday morning. Then will be followed up with chemo and then radiation. My problem is (apart from the above!!) I have dodgy veins which can be hard to find!!! When it comes to chemo I’m worried about becoming a pin cushion and worst still them not being able to get one at all. I mentioned this to surgeon and he has suggested a port.. When I then spoke to my breastcare nurse she suggested I should think about it with the risks involved etc and that if not really needed and if the chemo treatment plan doesn’t call for it, then not to do. Only problem is I have no idea of my chemo treatment plan yet as this all happened late Friday afternoon and surgery is first thing on Monday morning! Arrhh On one hand I can see the port will make it easier for chemo but then does that outweigh the risks of foreign body in body, infection ......? Is getting the port put in at a later date if they are struggling with the veins an option ? I would really appreciate any ones reflections of their own experiences? Just all feels very overwhelming today.
Cold Capping and hair loss experience with TC chemo
I went for my first TC chemo session with cold capping on a Paxman. I've got wavy coarse hair, that's not particularly thick. Conditioner and water was applied with a focus on the top of the head. I was expecting a brain freeze but came nowhere near that in the 2.5 hours of the cold capping. I'm a skier so I'm comparing it to having damp hair on the snowfieds. The nurse said only about 20% of his patients keep their hair. I'm now paranoid it was ineffective and am sitting at home with a bag of ice in a large ziplock affixed to my head, which feels colder than the cap. Has anyone had a similar experience with cold cap not being as cold as you expected, but still had reasonable hair retention after that session?
Neoadjuvant PLUS adjuvant chemotherapy?
Hi everyone, As my wife's neoadjuvant chemotherapy draws to a close we've been looking more forward to surgery / radiation, however her breast care coordinator dropped a new bit of information last week that, depending on the pathology of her tumour, she may require additional chemotherapy after surgery. This was a bit of a bombshell, since it's the first time we've heard anything about this being a thing and although the coordinator said that "it's a good thing, since it gives us more options", it doesn't feel like a good thing. We've been steadily working through this process for the last 4 months assuming that we'll get to the finish line and be able close the book on chemo and move on, but now it looks like we have an uncertain pathway again. I'd love to hear from anyone who's had this experience of getting through months of neoadjuvant chemotherapy only to find out that they needed more after surgery. What were the circumstances that drove that decision and what did the adjuvant portion of chemotherapy look like? Was it months of the same again, or a different regime? I get that everyone's different and your circumstances may not be exactly the same, but I'd appreciate any input so we can feel more informed and plan appropriately. Thanks! George
