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katym
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Joined 2 years ago
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Re: BYO Cold Cap?
Thank you for your comments! @arpie - I know - I feel like the evidence is there that the cold caps work. They're not exactly new technology. I would 100% try if I could. This attitude from the nurse is pretty on par with my ongoing experience at this hospital, so I am not surprised. @unicorn3 - thank you for this insight. I have looked into the frozen caps but I don't know how one would keep it at the right temperature - surely it begins to warm up once on the head and thus isn't really stable. Plus this hospital say that no-one is allowed to sit with you during the infusion so I don't know if it is really an option for me. @Blossom1961 - this is amazing! Thanks for this tip I am going to ask! I would do this in a heartbeat.89Views1like0CommentsBYO Cold Cap?
Hi all, I have just found out that my hospital (Monash) doesn’t offer the cold cap for chemo. The breast care nurse I spoke to was very disparaging of them, saying there was no evidence they worked, which surprises me as they seem relatively common in better hospitals. She said the only option was to BYO frozen caps in an esky - has anyone here tried this? Was it successful? How do you keep the caps cold enough?Re: Changing hospitals - how is it done?
Thanks both for the replies. I am in Bayside Melbourne and am thinking of trying to transfer to Peter Mac. Thanks @terrianne - I have made an appointment with my GP. I am glad you were able to change before treatment started -that’s my worry that it will be hard or very slow to move somewhere else at this point. @arpie thank for you reply too. To your question, no, I went for a second opinion from a surgeon outside Monash and he said that he wouldn’t recommend further surgery, although there will always be question marks over what they’ve done so far. At this stage I would have a breakdown if they went back for a third go.50Views0likes0CommentsChanging hospitals - how is it done?
Hi, I am currently being treated for breast cancer at Monash Health. I have had enough. I have had two surgeries with ‘unexpected’ poor outcomes (the type of situation where the doctors keep saying ‘well this doesn’t normally happen’ - except it’s now happened twice). I am now two weeks post my second surgery with an open and infected surgical wound and no follow up appointment for another two weeks because their breast clinic is busy and am being suggested to just see my GP in the meantime. I am so upset about my care and want to change hospitals before I start oncology. Has anyone done this? How is it done? I don’t have private hospital insurance.257Views0likes3CommentsRe: My ALND was a bust..
Thanks for the reply @Mareealso. Yes I think that they are commonly marked during a sentinal node biopsy. I still wonder if anyone has had a cancerous lymph node marked pre-surgery (a node known positive after a pre-surgery biopsy) who has been recommended for a full clearance. It seems like this is what should have, but didn't, happen in my case. But maybe they just don't do it as a routine thing.39Views0likes0CommentsMy ALND was a bust..
Hi everyone, this is my first time posting. I discovered my lump in late May while breastfeeding my bub, and am now two weeks post surgery for hormone positive breast cancer. Not the clogged duct I had originally assumed it was. It’s been an awful shock, as I know everyone will understand. So, I have just had a lumpectomy, a LICAP reconstruction on the boob, and level 2 axillary clearance. I’m looking for advice from those who have had an axillary lymph node dissection. I just had my post-op and it was a real mixed bag. Breast cancer out with clear margins (great) BUT seven nodes removed and … none cancerous. While that sounds like great news the problem is that they had biopsied one suspicious node prior to surgery and it had come back positive. So it appears that this positive node was missed. I’m now headed for a second surgery. My question is - for those of you who have undergone ALND- is it normal that they didn’t mark my positive node in any way so they knew where it was during the biopsy or prior to surgery? The doctors are saying they will mark it for the second surgery with magseed and it seems completely ridiculous to me that this wasn’t done initially, when my breast tumor (which was palpable so very obvious) was marked during biopsy. It just seems very slap dash to presume you don’t need to mark as you’re taking everything out anyway. I am wondering whether not marking or targeting when a clearance is planned is just normal procedure and I should just roll with this situation, or whether my hospital or perhaps the surgeon has not done something they probably should have ie mark the cancerous node. I have an appointment on Friday with the surgeon, and I feel knowing others experiences prior to that conversation will give me some peace of mind, or perhaps the gumption to at least push for a second biopsy alongside the magseed. I want to be really sure this time that they are targeting and marking the right node before I go for another surgery. Any shared experiences or thoughts from those who have walked this road ahead of me is appreciated. You are all so brave. This whole situation is very frightening.267Views0likes2Comments
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Young women & breast cancer
This group is for young women affected by breast cancer. In the context of breast cancer treatment, ‘young’ usually refers to women who are pre-menopausal. Here, you can connect with others who understand the unique challenges that come with a diagnosis at a younger age. We talk about things like fertility, pregnancy, early menopause, ovarian suppression, relationships, and the emotional impact of treatment and recovery. Whether you're newly diagnosed or further along in your journey, this is a safe space to ask questions, share experiences, and support one another. You are not alone during this uncertain and overwhelming time.
