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.
DCIS and. travel insurance
Hi all, after another DCIS bout and single mastectomy earlier this year I’m planning on a bit of travel. When trying to fill in travel insurance health questionnaires has anyone experience with what you put in for DCIS. There are a number of choices when you put in breast. Thanks in advance. Jen
Double mastectomy and immediate reconstruction
Hi all, new member of this exclusive club nobody wants to be a part of! Just found out the lump in my right breast is cancer 5 days ago. I’m 43 and considered young for cancer (how nice… been a while since I’ve been called young 😅) I am still in shock so have gone into plan mode. I Still don’t know what stage type or grade yet but scheduled for a breast MRI and biopsy tomorrow. My question is if anyone has ever been through Peter Mac as either a public or private patient? What was the experience like? How long was the wait for surgery and reconstruction? I’m not sure if my private will cover all costs of surgery as my surgeon (who operates privately) so far says I’m a candidate for a double mastectomy but is waiting on biopsy report and MRI. Ideally I am leaning towards an immediate DIEP reconstruction. Anyone had that before? Thank you 🙏
Mastectomy /post surgery pillow
Hi all, I have a brand new mastectomy pillow that I found really helpful that is basically as new. I would be really happy to post it to anyone that is about to have surgery at no cost. I just can’t bear to throw it away and would be happy for it to help someone else! Just dm me with your address if you would like it. I’ve attached some photos x
Mastectomy/Diep flap reconstruction - What to prepare for
Hello, I am heading into hospital shortly for a Mastectomy with a DIEP flap reconstruction at same time. I am starting to prepare everything now, ie stocking freezer, ensuring I have everything at home ready and staying to look at what to pack for my stay in hospital (5 days). My Plastic Surgery has asked that I bring in post op bra and if I have spanx or similar bring that in. The bra was no issue I got ones from Kmart and Berlei. In terms of compression pants, I am at a lose. So much on the market, Any recommendations, do I go for underwear type, shorts or just stomach ones. I would be grateful for any tips.Going flat after implant rapture
Hi All I had a bilateral mastectomy 8 years ago with expanders and silicone implants (aged 48 at that time). Here I am 8 yrs on and find I have had a implant rapture and now have silicone in my axillary, clavicle and chest lymph nodes. Rapture likely 12 mths ago due to spread of silicone, that is why its called a silent rapture. I had the mastectomy to not live in fear of getting breast cancer (as my mother had it twice) and I had a young son. Here I am now living in fear of what the silicone toll will take. Have received advice and can do reconstruction but would need to use flap under arm area as well as implants as the skin is thin due to expanders from first reconstruction for a swap out or I am thinking go flat. Going flat will prevent the fear of further possibly of another rapture and more silicone in my system. If I had have been told 8 yrs ago I could have the mastectomy to prevent cancer but they cant reconstruct I would have still had the mastectomy so I am coming to terms with the flat chest option. Has anyone on this forum had reconstruction with implants then gone flat later? Any advice, regrets, experience with prostheses double breasts at all?
DCIS - Mastectomy - Recon - clear for two years....now potentially something else
My situation in a brief paragraph: At 50 years of age, I was diagnosed with DCIS in my left breast. I opted for a bilateral mastectomy and recon. Sentinel nodes were clear. No radio or chemo required. That was almost two years ago. Apart from now suffering all the typical effects and symptoms of menopause due to no HRT, I've been blessed with a dream run and fantastic road to full recovery from BC. Completely grateful and thankful for the team and support I've had around me. The latest situation is that I've just been for my second annual post BC ultrasound with a view to reducing visits with my surgeon from three monthly to annually. I was looking forward to kissing cancer goodbye!! However, the sonographer has found an inflamed and vascular looking lymph node in my right armpit (opposite side to original BC diagnosis). It was explained to me that this can be due to a number of reasons: fighting off an infection, breathing in smoke, recent flu vaccinations or, at worst, something more sinister like cancer. My surgeon reviewed this and wants another ultrasound in three months to check on it and if need be, will biopsy then....I have a sick feeling about this. Since I don't feel like I'm fighting an infection, I haven't breathed in smoke lately & my flu vax was done 10 weeks ago in the opposite arm .... I am feeling extremely anxious that cancer has returned and that it's found a spot in my right armpit to grow and spread. A three month wait to see if this is or isn't the case seems like absolute torture and a return to 'the waiting game' that only cancer sufferers know. I'm sure that most of you reading this post can relate to the worry of 'the wait' when you have that initial cancer diagnosis. The awful feeling of being out of control and the unknown picture of what's up ahead. Sleeplessness has returned. Constantly thinking about it has returned. The worry has returned. I have back and neck pain that I'm sure is due to the stress, but am naturally concerned it's cancer returned. Since my mastectomy and recon, I've been able to put all of that aside - until now. Has anyone here experienced a vascular anomaly with their lymph nodes post having BC and recon? If so, what was it attributed to? How was it handled by your team? Should I be asking for a lymph biopsy or intervention earlier than waiting three months or am I worrying unnecessarily? I'd be grateful for any thoughts, honest advice or similar experiences & decisions that anyone can offer.
Compass (ABC) The Breast Decision - NOW - should be on iView soon
Sun 18th May - Compass: The Breast Decision - now available to watch on ABC iView https://iview.abc.net.au/video/RN2411H008S00 BCNA was 'shown' in one segment. Charlotte Tottman is interviewed re her own decision on choosing to go flat and how her breasts were very important in her sex life with her husband - but they'd 'done their job' on raising her 4 children .... Yes, She misses them - but in her words, she looks in the mirror every morning for 5 secs and says she 'is not too shabby'. She encourages women to look at themselves every day for 5 secs - and to also share their scars with their partners & even their children, so that they are 'a part' of the recovery.Do 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.
Experience with suction/negative pressure dressings
So last Thursday I had a bilateral "Goldilocks" mastectomy - it's Tuesday now, so today is the fifth day post-op. I had three nights in hospital and was discharged on Sunday, and every day has felt like a battle with these dressings. It's a system called Prevena that puts a foam layer over the sutures, and then a plastic dressing over that so that the attached pump can then apply a gentle vacuum. Even in hospital, every day has brought patches to the edges to try and maintain a seal. It holds if I'm sitting down but the moment I stand up, the pump goes off, and I hear a little whistle from a new leak somewhere in the dressing. It's getting pretty frustrating - I can't shower without it going off and even just doing a wash at the basin triggers leaks. And forget going for 'gentle walks' - I want to, but not if the dressing's going to leak the whole damn way. I'm due to have them removed on 9 December, so six more days with them. If I thought I was happy to have drains removed, that'll probably be nothing compared to the joy of getting rid of these dressings. Has anyone else had experience with suction/negative pressure dressings like this?
