Questions for your surgeon/medical team when diagnosed - ILC based but also relate to other BC types
This document has a huge number of questions that you may like go over - and put to your Surgeon, Onc, and/or Medical team at some stage of your diagnosis and treatment ..... Altho it is based on those with Invasive Lobular Cancer (ILC) .... many of these questions also relate 100% to all BC Types .... the more questions you ask, the more you understand your diagnosis. Go thru them and see if any may relate to you. If some questions specifically refer to ILC - you could replace ILC with 'your' BC type ..... and see if you'd like to put any of them to your own medical team? https://lobularbreastcancer.org/wp-content/uploads/2023/03/Questions_for_My_Doctor_FINAL_-2023.03.21.pdf
More information about Elle MacPherson's breast cancer treatment
For anyone who wants to know more about why Elle may have decided not to have chemotherapy. https://theconversation.com/elle-macphersons-breast-cancer-when-the-media-reports-on-celebrity-cancer-are-we-really-getting-the-whole-story-238231
Free BCNA Information Forum in Murray Bridge, SA
We are heading to Murray Bridge, South Australia as part of our national Information Forum series. We are bringing leading experts to the local community to provide insights on a range of breast cancer topics. We extend an invitation to anyone located in or around Murray Bridge to join us on Wednesday 6 March for this fantastic day full of information and getting to connect with others in the area! This event will be both in-person and online. The Information Forum is for anyone who has recently been diagnosed with breast cancer, who may be living with or after a breast cancer diagnosis and supporters. Register here! We are excited to announce a leading cancer psychologist from South Australia will be joining us. With more presenters to be announced soon! Dr Charlotte Tottman, Clinical Psychologist Dr Tottman specialises in the treatment of cancer-related distress. Charlotte consults privately treating cancer patients and their family members and carers. Charlotte has her own cancer story. Several years after establishing her private practice in psycho oncology, she herself was diagnosed with breast cancer. If you are unable to attend in person, you can still join us online! When registering, select ‘Information Forum – Attending Virtually’. The online session will be delivered via Zoom, and you will receive the access link one day before the event. There will be two simultaneous information sessions throughout the day – one for people with early breast cancer and one for people with metastatic breast cancer. Please register for the session you would like to attend. Event details: Date: Wednesday 6 March Time: 9.00am for 9.30am start – 3.00pm Refreshments will be served on arrival from 9.00am and a light lunch will be provided. Location: Bridgeport Hotel, 2 Bridge St, Murray Bridge Registration: https://www.eventbrite.com.au/e/bcna-murray-bridge-information-forum-2024-registration-779739320297 RSVP: Please RSVP by Wednesday February 28 If you have any questions, please email events@bcna.org.au or comment below.
It’s Just DCIS, the words of the BCN leaving me feeling like a fraud
It’s like 3 in the morning and as usual the words the BCN has said to me more than once has left me feeling like I’m a fraud and I don’t have the right to say I had breast cancer. Yes I know it could have been a lot worse, while going through this process my surgeon was pushing as long as the cancer had not got of the duct it was just DCIS, then the pathology came back and she told me that it was a 3cm with 3 areas of micro invasion, the results also show they’re double negative and high grade. I needed to go back in for my surgery. I call my BCN as she told me to so she could go over the results again with me, it’s just DCIS don’t worry about the micro invasion it’s not like there’s a lot it’s just DCIS, so now I’m confused the surgeon is pushing for more tests, so MRI shows another 1.5cm area that was missed in the lumpectomy, sentinel node and other nodes are clear. But my surgeon has decided she still wants to take the sentinel node, after discussion it is decided that I will have a SMX and SNB, everyone supports my decision, well almost. Was told not to see a plastic surgeon just yet as I would more than likely still need radiation. well good news results came back they got it all, she was finally happy with the margins. We all got together and it’s decided no one wants to see you no further treatment no oncologist (she did tell me at first appt that cancer is over treated), drainage good, it can be removed see you in 6 months. My husband asked me to speak to the BCN as he was concerned that they had changed there minds on radiation, so I called was, the answer if want to waste your money and go see someone you can it’s just DCIS, says the BCN Since then if I’ve had an issue something wasn’t settling down, pain I would call, I had such bad pain under my scar area was struggling to wear the post surgery bra, so call my BCN it was just DCIS massage the area, you could come in and we can have a look at it if it doesn’t settle, but it’s normal. Anyway spoke to my GP was sent for X-ray then CT scan, turns out the pain is being caused from my ligaments the soft connective part of my ribs are calcifying on that side so it causes pain with pressure. I don’t bother calling with concerns the few times I did was enough, as getting a response at times took days and a couple attempts to reach out. over 3 months later and I haven’t been and got fitted for a bra and prosthesis because of swelling that flares up on my side where the drain was swells still and gets very tender and having something on there is to much at times I feel like I have a golf ball size swelling in my armpit, but I keep on massaging. Has anyone else had this experience, I was told I had breast cancer but I don’t say it as I feel like a fraud for saying it as the words of my BCN keeps coming back at me “It’s just DCIS”.
recovering from double mastectomy with Bella's help!
So I had my double mastectomy recently with expanders put in at the same time (photos to follow in 'Choosing breast reconstruction' when I am a bit further along) for reconstruction and when they examined the breast tissue afterwards they found more DCIS, 10cm in total and I was small breasted! and in the other breast which was a prophylactic mastectomy they found lobular cancer so thank goodness I had the double mastectomy. The operation went very well and the Doctors and Nurses were brilliant. This made me laugh :) . My husband took this picture of me and my Poodle Bella sleeping after coming home from the hospital. She stole my lovely Zonta cushion given to me in hospital after my second lumpectomy and much appreciated since <3. I was in hospital for a week in the end after the double mastectomy waiting for one of the drains to ease up. Being diagnosed with breast cancer feels like living in a nightmare so I hope this makes you smile and sending love and strength to all you lovely ladies and men in your breast cancer journey :* <3 xxx
Query
I had DCIS last September, it was removed, but no lymph glands removed. No radiation treatment was said to be needed as it was caught early. I now have a sore spot on my side sort of under where your bra band goes around your body on the opposite breast. Had an ex-ray last week showed up normal but I am going for a U/S on Monday to make sure there is nothing hiding on my rib wall. Today I have started to get these tingle, tremor feeling in my left breast, they happen every few minutes. I would just like to know if anyone else has had these sensations it's just like an eyelid flicker. Thanks in advance.
