Mets now in my brain
Hi Everyone my latest scan has been a shock and made me sad. I was on enhurtu and hoping for big success. However after 4 round 2 of my liver mets increased and now i have mets in the right side of my brain. I fell over in the last treat cycle and got a black eye and I also fainted one night. Luckily the bed was beside me when I fainted. My oncologist phoned me with my results Friday and I am numb. She said the plan is this. I get a port monday, tues chemo, thurs I have a skin check (melanomas) and the oncologist is ordering an mri of the brain for my radium oncologist. I don't have an appointment yet but the plan is to radiate that brain met. Then I have one other enhurtu infusion in September and another scan. My oncologist tells me there is other chemo we can try and the brain mets will be treated with radium. My husband and I are in shock and sad. My mets has progressed so fast - 2 yrs and several treatment changes already. This is so hard.140Views0likes14CommentsRadiotherapy and exercise
Hello everyone - After a DCIS diagnosis and lumpectomy with a re-excision I now have clear margins and, although I could have refused radiotherapy, I have opted in as it is still standard treatment. And I wasn’t prepared ‘to roll the dice’ as my surgeon put it. I will have about a three-quarter hour train commute and a 10 minute walk each way from the train station. So all up I reckon it’s going to be three and a half or so hours each day. I have heard that exercise helps combat the fatigue. My question is - yoga? I’ve found a fabulous YouTube yoga by Lisa Moore which is about thirty minutes, gentle stretches etc. Walking I could definitely do in fine weather. I also have a rowing machine at home that I enjoy. Have people kept up resistance training while going through radio? I work four days a week but I can be fairly flexible about hours. Any survival tips welcome!109Views2likes9CommentsWhat 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.173Views1like9CommentsWhat to ask the surgeon post surgery?
Last week, I was diagnosed with stage 1 last week, ER+PR positive, HER 2 negative. Right side, very deep tho. A week later (!) I already did a lumpectomy and removal of some lymph nodes to test if it spread and decide if I need chemo. I was told radiotherapy is recommended. It was an overwhelming whirlwind this past 10 days, and I'm now trying to get back some control... I have my post op meeting with the surgeon this Tuesday am. Any suggested list of questions? I've also decided to ask her for 2 referrals for further treatment. Private (Cabrini Melb, where I was so far) >> I didn't really understood I have a choice to go to public... The Alfred - public, which is a walking distance from me... I've decided to go public pending in how soon they can see me. Any thoughts? Thank you all in advance! so glad there is a place to share what we're going through atm115Views2likes2CommentsDo I stay or do I go?
Not your average post. Originally a backpacker from the UK, been in Aus 5 years and have moved onto a work sponsorship visa with my employer. I live in a very remote area and it is a 4 hour flight to my nearest 'treatment centre'. Two weeks ago it was confirmed (via biopsy) that in my left breast I have a 2mm invasive mass, and 10cm of non invasive DCIS. I had a contrast mamo and PET scan (no result yet) and scheduled for an MRI on the 6th June, and appointment with the surgeon to discuss options on the 10th June. My breast dr said the surgeon will recommend a mastectomy due to the large area of DCIS. Possibly chemo, radio and hormone therapy. They are also talking about what I want to do with my eggs. I am so scared, and I am not sleeping. I am only 34 years old without children. I don't know what to do, do I stay here in Australia and undergo the treatment recommended and stay near the hospital with the mother of a friend (who has also had breast cancer and has said she is more than happy to support me through required treatment). I love my life here that I have built over the past 5 years, and I love my job. I am scared I will lose my job with the next few months of treatment coming up (very little can be done remotely), my visa is tied to my job. I may get deported mid way through treatment? I dont know? I know I should speak to an immigration lawyer but I am already inundated with administration from cancer. My family back home are very supportive and will support whichever decision I make. They and I am also wary of the health care system back at home (which isn't in great shape). If I go home, I will take all my diagnosis letters and scans, but I will still have to start this process again from the start and basically be told twice I have cancer and they want to chop my breast off. I wont be able to get a job due to appointments and treatment, and wont be entitled to benefits as I haven't paid tax in my home country for 5 years. Its not just cancer anymore, I am not scared of the cancer as such as my whole life here being ripped away from under my feet. Sorry for the long post. I just don't know what to do for the best. Either way, I need to stay here until I have the full picture and know what the surgeon wants to do.266Views0likes8CommentsPartial Breast Radiotherapy
Hello 👋 community I was diagnosed with breast cancer, and while it has been surgically removed, I’m now entering the next phase of treatment. I would like to know if anyone has experience with partial radiotherapy and what side effects—both short-term and long-term—you may have encountered. I'm feeling a bit anxious about this process.245Views1like10CommentsCardio-Oncology and Chest Irradiation
I highly recommend this recording- Cardio-Oncology for Hodgkin Lymphoma Survivors https://youtu.be/lyf6ZtDgkVM?si=84qAfUtTpM5I6-Vz Although the presentation focuses on cardiovascular disease risk in survivors of Hodgkin Lymphoma, the information is relevant to anyone who has received radiation to the chest.Avoiding radiotherapy
Hi, are there any community members here that have avoided radiotherapy and then regretted it later? or vice versa. I had a very small pre cancer, which was non-invasive and I'm in my 40s. I am anxious about radiotherapy (long term effects) and though its the standard treatment (because the precancer was high grade), I am not totally comfortable with it, but perhaps that is normal? Any insights appreciated.536Views1like14Comments