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Julez1958

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Joined 5 years ago

1396 Posts1108 LikesLikes received

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Re: Extent of numbness following double mastectomy
HiWinter I had double mastectomy and DIEP flap reconstruction 4 years ago. initially I had hardly any feeling but over time a bit has come back.
21 days ago Place Surgery
62Views
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0Comments
Re: New diagnosis metastatic breast cancer
HiGerry2 I suggestion you ask to join the private group on here “Living with Metastatic breast cancer.” The secret is in the name “ living” - women are living many more years these days with metastatic breast cancer and new treatments are coming on line all the time. Take care.
1 month ago Place Metastatic breast cancer
103Views
1like
0Comments
Re: How Do you decide what treatment when there are so many options?
HiCaptnK I always ask my medical team “ what would you do if it was you or if it was your mum “? There is a lot of good resources on this website and the online forum a great source of advice. Take care.
1 month ago Place Early breast cancer
102Views
3likes
0Comments
Re: Being flat chested :(
Hiannette This is a very personal decision and as my breast cancer surgeon said to me when I was considering breast reconstruction “ there is no right or wrong answer, only what is right for you“. I had double mastectomy and DIEP flap reconstruction and was very happy with my decision. Many are happy with implants . And many remaining flat. The private groups recommended above should help you make a decision as will talking to your medical team .
1 month ago Place Living with breast cancer
70Views
3likes
2Comments
Re: Radiation
HiButch I had 28 sessions of radiotherapy and used strata X it cost money but was very effective - I only had a bit of pinkness towards the end - I had to send away for it to the US.
1 month ago Place DCIS
97Views
1like
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Re: Stage 4 breast cancer
HiGerry2 I would encourage you to join the private group on here “ Living with metastatic breast cancer”. The name says it all - increasing numbers of women are “ living” with stage 4 breast cancer for many years. There are so many different treatments now and lots of clinical trials and research so the future is a lot brighter than it was. What city / town are you in ?If you add that to your profile you may get more targeted advice from others on here, Do you have a McGrath nurse ?They are a great source of comfort and information for stage 4 patients. Please know that on here you can ask any question and vert away and it is a place of non judgmental support. Take care .
1 month ago Place Metastatic breast cancer
60Views
4likes
0Comments
Re: Cost of breast reconstruction
Hieberk I am late to this discussion but can confirm what others have said, even with private health fund my out of pocket expenses were very high - I had double mastectomy and DIEP reconstruction - had a top breast cancer surgeon and plastic surgeon . Both surgeons operate in the public system as well but I would have had a long wait for the reconstruction and also there would be no guarantee those surgeons would do the operation . Its complex surgery and I had the money but it is a tough call.
2 months ago Place Breast reconstruction
145Views
1like
0Comments
Re: ER/PR+ HER2- invasive lobular
HiPamQld The decision to have a double mastectomy is a very personal one but that is the decision I made even though I had no family history of breast cancer. I had DIEP reconstruction using my tummy fat - big surgery and recovery but I don’t regret it. My story with photos is on the choosing breast reconstruction private group , there are many other stories on there and photos I found very helpful , so ask to join that group if you are thinking along those lines. Best wishes and feel free to post on here with any questions or just a vent as we all “ get it” even though our experiences will all be a little different.
3 months ago Place Early breast cancer
46Views
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1Comment
Re: DIEP reconstruction or going flat
Hijudith0861 I had double mastectomy and DIEP flap reconstruction a few years ago and my story with photos is in the choosing breast reconstruction private group, I was large breasted (DD) so for me going flat seemed like a bridge too far - I did take the opportunity to go down to C cup though. I was very happy with my decision even though it was a big surgery and recovery and it was costly as I had it in the private system . The decision is extremely personal and as my breast surgeon said “ there is no right or wrong answer - only what is right for you”. Take care and all the best with whatever you decide.
4 months ago Place Early breast cancer
60Views
3likes
0Comments
Re: Hospital
Hi although I had my treatment in the private system ( St Vincent’s private Darlinghurst Sydney) the surgeons I had also operation the public system. Main issue for me was I wanted DiEP flap reconstruction after a double mastectomy and didn’t want to wait . i know lots of ladies who had their treatment at St Vincent’s here in Sydney and were very happy, All the best .
4 months ago Place Early breast cancer
129Views
2likes
0Comments

Groups

Living with metastatic breast cancer
This is group for people living with metastatic breast cancer (also called stage 4, secondary or advanced breast cancer). This is a safe, understanding space to connect with others who truly get what it’s like to hear the words that you are living with metastatic breast cancer. Together, we offer each other strength, compassion, hope encouragement and a place to talk openly—whatever you're facing.
Choosing breast reconstruction
PRIVATE GROUP. Choosing breast reconstruction after single or double mastectomy can feel overwhelming, and deeply personal. This group is here to connect you through others' stories and images. Please respect everyone’s privacy—do not copy or share content outside this space. Information is based on personal experience and is not medical advice; always consult your healthcare team for guidance. ⚠️CONTENT WARNING⚠️ Members may share photos of breast surgeries. These images or discussions may be distressing or triggering for some. If you need support, please contact the BCNA Helpline - we are here for you.
Invasive Lobular Cancer (ILC)
This group is for anyone diagnosed with invasive lobular breast cancer (ILC), which begins in the milk-producing lobules and accounts for around 10% of invasive breast cancers (US statistics). Connect with others, share experiences, and access peer support from people who understand the unique aspects of an ILC diagnosis.
Let's talk: vaginas, menopause & me
PRIVATE GROUP. This group is a safe, supportive space to talk about sexual health and emotional wellbeing during and after breast cancer. We discuss topics like menopause, vaginal dryness, pain during sex, UTIs, and changes in libido, and share ideas and products that may help. Whether you're navigating intimacy with a partner or reconnecting with yourself, you're not alone here. This is a place for open, respectful conversations and shared understanding.