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.
Animation Deformity- Botox
Hi ladies, I have had a double mastectomy with immediate reconstructive surgery with implants under the pectoral muscle. I have developed breast animation deformity, with spasms and pain. I have read lots of medical articles that an option is to have Botox injected into the pec muscle to stop the spasms. I am wanting to know if anyone has had this treatment? And can recommend a specialist. I’m in Qld and having no luck trying to find a specialist who will do it. My plastic surgeon has recommended it but doesn’t know who would do it, and whether it would need to be done under ultrasound so to avoid puncturing the implants. Any help would be greatly appreciated. Thank you.
All Clear happy and healthy, BUT pre admission tomorrow for Mastectomy/Recon struggling mentally..
To say its been a tough week, has been an understatement even after a recurrence multiple surgeries and treatments over the past 6yrs. As much as I knew it was coming, I wasnt prepared for the call from Hospital for my pre-admission tomorrow. 19 months on from a lumpectomy, 13 months post chemo, happy, healthy reclaiming my life. The mental torture has been relentless this week, knowing I'm WELL but in light of a recurrence don't gamble Melinda, do a Mastectomy/Diep flap reconstruction. Even knowing deep down its the best thing I could do, I still struggle with the loss, the prevention, the surgery. Its always been my struggle getting to this decision now it is here, I don't feel any different, I'm still struggling with it. I can be honest, I'm scared, petrified of the actual surgery, the recovery, the loss, the end result. Struggling with feeling Im damned if I do, damned if I don't. Maybe I'll feel different once it's done? Ive looked at it every which way possible, and its just so mentally challenging when I know Im so well...the tears havent stopped. I will also be mostly alone through recovery as my kids are going to live with their Dad as its easier for them to get to Uni and my baby in VCE. Whilst its the right thing for me to do...am heartbroken to not have them with me loving and supporting me. My Partner lives an hour away, due to work and life will only be able to manage at different times. Another reminder of traveling this road nearly 7yrs without my Mum, lucky to have my Dad who wants to help but is 77. Inspite of all this, knowing how incredibly lucky am I really!!! how dare I be sad, upset, angry, so why do I struggle, don't know how to resolve this for myself?? I've always been proactive, positive and upbeat...hoping its purely the fear thats getting in the way...
Double mastectomy Tasmania
Hi Can anyone recommend a plastic surgeon for a double mastectomy and reconstruction in Tasmania? I’m yet to decide if I want a flap reconstruction or implants so ideally would like recommendations for surgeons that do both. Launceston is my closest town for surgery. I could also look to Melbourne but am aware it will likely be more costly. Thank you for any insight.
Radiotherapy after skin-sparing mastectomy & diep-flap-reconstruction?
Has anyone had radiotherapy done after their skin-sparing mastectomy & diep-flap reconstruction? Did it cause any issues with the breast flap? like hardening or shrinking? I had no lymph node involvement and had clear margins. It was decided in a team meeting with radio oncologist for me to have 5 weeks of radiation on the flap, due to younger age, size of lump (ILC-5cm) - although it was 2 bits lumped together into one and grade 2, pathology of the sample found focal-vascular-space-invasion, which hadn't spread anywhere outside the breast, but radio oncologist thought it could spread to lymph nodes in the future. Does this warrant radiation? I am on zoladex and ai. I have an appointment with the surgeon to discuss further but wanted to see if anyone has any suggestions or similar experience?
Federal petition for paramedical tattooist registration and increased Medicare rebate < 19th Feb2025
Please sign our petition before 19th February 2025. Link to petition https://tinyurl.com/zsy38u25 • The aim of this petition is to gather support for previvors (people who have had or are considering having preventative mastectomies) and breast cancer survivors who have undergone breast reconstruction after mastectomy and who would like to have intradermal colouration of nipple or areola or both (medical tattooing) by a Paramedical Tattooist with a good Medicare rebate. The petition will be given to Jenny Ware MP - Federal Member for Hughes, who is supportive of both issues, and she will be taking it to the Health Minister in early 2025 to lobby for change. You can also really add weight to your support, by emailing Your related Story to Ms Ware. Jenny.Ware.MP@aph.gov.au 𝙏𝙝𝙚 𝙜𝙧𝙚𝙖𝙩𝙚𝙨𝙩 𝙞𝙢𝙥𝙖𝙘𝙩 𝙝𝙖𝙥𝙥𝙚𝙣𝙨 𝙬𝙞𝙩𝙝 𝙥𝙚𝙧𝙨𝙤𝙣𝙖𝙡 𝙖𝙣𝙙 𝙚𝙢𝙤𝙩𝙞𝙫𝙚 𝙨𝙩𝙤𝙧𝙞𝙚𝙨. *Please advise in that email to Ms Ware , if you’d like your name to be redacted for privacy or not, when Jenny presents the summary of some case experiences , along with the petition numbers to the Health Minister. By participating in this petition, you are advocating for changes that could lead to better patient care and support for those affected by similar breast cancer reconstruction experiences, to include paramedical tattooists as part of the Medicare subsidy providers and a higher rebate. The petition is open until 19 Feb 2025. Please share this so we can get as many signatures as possible. Thank you! Petition link https://tinyurl.com/zsy38u25 • Earlier this year, the Australian Medicare system added a rebate of $191 for the intradermal colouration of the nipple or areola or both under MBS item 45546 for use only by medical practitioners and MBS item 82228 for use only by nurse practitioners. I would like to see the integration of qualified and regulated Paramedical Tattooists into the Australian Medicare system. By including these highly trained professionals, we can ensure that high standards of aesthetically pleasing and artistically rendered medical tattoos, such as 3D nipples, are achieved. This can significantly enhance the quality of life and mental health outcomes for patients compared to the results often seen with hospital-performed tattoos where most haven’t been given adequate training to perform to an acceptable standard and comfortably execute such an important closure of someone’s breast cancer experience, leading to negative psychological and emotional outcomes. • Current costing of medical tattooing of both areolas and nipples is between $1200-$1600, the current Medicare rebate $191. • If men were diagnosed in the same numbers that women are this would have been changed a long time ago! The following information is an extract from Pink Lotus Australia - Disadvantages of tattoos done by Nurses & Doctors with inadequate training. 1. Limited Artistic Freedom: Medical tattoos may lack the artistic finesse and customisation available with paramedical tattooing, resulting in less natural-looking results. 2. Suboptimal Ink Healing: Due to differences in technique and equipment, medical tattoos may exhibit poorer ink retention and fading over time compared to those performed by highly trained paramedical tattooists. 3. Insufficient Training: Medical staff may not have specialised training or experience in cosmetic tattooing techniques, potentially leading to subpar outcomes and patient dissatisfaction. 4. Lack of Tailored Care: Paramedical tattooists offer personalised solutions tailored to each patient's unique needs, whereas medical tattoos may follow a standardised approach that does not account for individual variations in skin texture, scarring, and color matching. 5. Limited Information and Aftercare: Patients may receive less comprehensive information and aftercare guidance from medical staff compared to paramedical tattooists, potentially affecting the healing process and long-term satisfaction with the results. Regards Sam & Kristen PS I have pinned this post on Facebook for Sutherland Shire Breast Cancer Support Group public page for easy sharing. https://www.facebook.com/sutherlandshirebreastcancersupportgroup/ and it is on insta @ssbcsg @Mez_BCNA FYI
Private or Public?
Hi everyone, I'm a newly diagnosed in my late 30's. my cancer is invasive grade 1 in one breast. I have private health insurance but the out of pocket costs of the plastic surgeon and aneastetic would be around 14k which is a big figure for me. I'm told if I go private, I can have the surgery as soon as 2 weeks but the puclic system may take upto 6 week. my question is how urgent is the surgery, will a month difference matter? Also I'm choosing to do a double mastectomy to reduce the risk of cancer in my other breast. I'm slim and don't have much fat for reconstruction, implant would be the best solution forward for me. Has people who have gone with implant reconstruction in public system been happy with the result? how does the after treatments look for them? Any public hospital that you recommend in Victoria for the surgery and reconstruction? will the result of the reconstruction be any different if I'm in public vs private? I will be staying upto 3 days in the hospital due to implant reconstruction so really having a shared or private room is not a big factor here. Can anyone who has gone through this privately or publically contact me please?
Insulting and Judgmental Comments
Something I was not prepared for post breast reconstruction, are the judgmental comments the scar on my belly is attracting. I have been undergoing abdominal ultrasounds to try and figure out the problems I am having with my period. The ultrasound people keep referring to the scar on my belly as a "tummy tuck". I've even been asked "why have you had a tummy tuck?" I have a lot of scars on my body. I am proud of every one of them. They are proof of all the crap I have been through with Hodgkin's lymphoma and breast cancer. None of these scars attract the same judgment and comments as the one on my belly. I have not had a tummy tuck! I had a bilateral skin sparing mastectomy and DIEP flap reconstruction! I was in surgery for 9 hours! I was in hospital for 7 days! I was off work for 10 weeks! I chose to undergo this surgery to remove breast cancer and reduce the risk of recurrence and death!!!!!! I was so SCARED going into that surgery!! This was no FUCKING tummy tuck!!!!!!!!!!!!!!!!!!!!!!!Negative impact of radiation on Flap (autologous) reconstruction??
Hi all, will have mastectomy in a couple of months time, am considering to have an immediate breast reconstruction (IBC) using my own tissues/ flap (autologous). Unfortunately, I will have a series of radiation after the IBC. I am worried the radiotherapy will kill/destroy/ causing complications on the flaps. I did some research at my end. However the comments were conflicting. Therefore would appreciate your advice. Please..no advice is too silly. Thanks heaps!
One is BIGGER than the other!
Hi I had an early diagnosis and lumpectomy, chemo, radiation and follow up treatment of right breast in 2003 (aged 45 years). As I've aged, my treated breast is shrinking and shrinking and shrinking and is now very obviously a different size to my left breast. 1 Has anyone else experience this? 2 Do you think it would be considered 'medically necessary' surgery if I wanted a reconstruction for health fund purposes? Appreciate any feedback - thank you so much.