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Woohoo .... I signed off with my Onc yesterday
It is nearly 8 years since my lump was discovered in Oct 2017, Biopsy in Dec, Surgery in mid Jan 2018 .... 4 weeks of radiation & just over 7 years of Hormone Suppressing tablets .... and I am now officially FINISHED with my treatment! I have officially been 'signed off' by my Onc! Back in 2018, I originally started with a male Onc - who didn't really have any interest in treating me - his first question was "Well, what are you here for?" (He hadn't even looked at my diagnosis/surgery/Radiation history!) Then he didn't believe me when I told him of my horrible side effects from the first AI that I was put on! So when he went on leave & I was lucky enough to see his Locum (a lovely Sth American Onc.) She immediately changed me to another AI (after a break of a few weeks) and 6 months later, to a third AI, that I then remained on for the next 7 years! I also swapped over to her at that appointment, and have been with her ever since - she was also my husband's Onc! So never be afraid to ask about changing from one AI to another if you are experiencing nasty side effects. And if you don't 'get on' with your Onc .... consider changing them too!!! 😉 It is SUCH a nice feeling! I thought I may become a bit emotional, but I was surprisingly cool, calm & collected!! My Onc even gave me a big hug & sent me on my way, wishing me all the best! She also said to Stay away from the Regional BreastScreen Buses and continue having my yearly mammogram and ultrasound at the facility that I've been attending for over 7 years now .... I have 100% faith in them. Their specialist Breast Cancer Ultrasound operator is the BEST - and I've been able to request her on all my visits so far & will continue to request her on my upcoming scans! hehe, I also had to confess to her that I had started weaning myself off the AIs from about Xmas .... as I was going to WA in May/June for a big Kayak Fishing Adventure ... and I wanted to be totally 'pain free' for that - and she said WELL DONE!! (Technically, I should have stopped taking them after 5 years, but I had requested to stay on a bit longer for the extra 18 months as 'backup'!) At the time, she said there was no medical proof to show that an extra 2 years would either benefit or hinder me - so said I could. So, I was not surprised when she was not at all concerned that I had finished a bit earlier. 🙂 (But I'd like to point out that you REALLY SHOULD discuss any change in taking your meds with your Onc before doing so!) I also left her with some information on the Otis Foundation, to pass on to the local Breast Care Nurse - Otis is a wonderful philanthropic organisation that organises the use of various Holiday Houses (donated by members of the public, many of whom have had family members with BC.) There are 'retreats' (as they are called) all around the country and they are made available from a few days to a week, to Breast Cancer patients for no fee. You just have to 'get there' and bring your food with you. All bedding etc is supplied. Some places are pet friendly - most aren't! You can also take family members and friends with you for the well deserved break. Your Onc/Breast Care Nurse/GP just needs to sign a form saying you are 'up to it'! Jump onto this site & check them out. There is usually a waiting period for some of the more popular ones (most are not available in school holidays) so the earlier you contact them to see if you can book one in ... the better! Give it a go! https://www.otisfoundation.org.au/donated-properties I also gave her a bunch of cards/brochures regarding a wonderful Victorian initiative (called Mending Casts) that runs 3 day Fly Fishing Retreats (once again at no cost) for women with Breast Cancer called Casting for Recovery.(They have recently extended it to women with ANY cancer!) They also have retreats for Men with Cancer too (called Reel Recovery.) Pretty well everyone running the program have been personally touched by cancer at one stage or another (by way of family members or friends) and they just love 'giving back' ... putting a smile on the dial - whether fish are caught, or not! You don't have to come from a fishing background to attend ... they supply all the equipment & show you how to use it (and fly casting is a gentle form of arm exercise too!).... and often there is a Look Good, Feel Better session as well (where you are shown how to use make-up effectively, and scarves to create a 'special look' whilst going thru/recovering from chemo) and a couple of chat groups, to discuss your journey so far - with those who've been thru it themselves, so they 'get it'!! They have a BC psychologist attending and also a couple of Paramedics who are qualified counsellors. I attended a retreat a couple of years back & it was just terrific. A few friends (and one husband) have also attended in the last 2 years and found it very therapeutic. I am still in touch with a few of the girls on my retreat! You don't have to live in Vic to attend ..... l drove down from NSW, visiting friends along the way, both down & back, so turned it into a 2 week road trip, fishing all along the way! Canberra has their own group ... but I think that Vic is the only other state doing the program just now. I would encourage everyone to 'give it a go' when you are well enough to attend!! All the info on the retreats can be found here. https://www.mendingcasts.org/casting-for-recovery-retreats-vic Even tho I've finished all my treatment, I'll still hang around on here .... 😉 Take care, & definitely consider checking out the above to 'retreats'!! Cos you DESERVE IT!
Reduction of non affected breast, mastectomy on left breast
Hi, I had a consult with a plastic surgeon yesterday to discuss options post mastectomy on my left breast for ILC, two tumours so unable to preserve the breast. I’m not interested in a reconstruction ( at this stage). He suggested I could have a breast reduction on the right side as I’m an E cup so would make it less lopsided ( bring it down to a C cup) Interested to know if many of you have opted for this? It certainly appeals to me as a ( hopefully) solution. I’m an active 70 year so just want to get on with it! I have to make a decision asap ( no pressure!) as my surgery is on October 3rd. thanks in anticipation. Liz
Heavy lifting after surgery
Hi all Im 17 days post bilateral mastectomy and recon. I have a 3 yr old and a 1 year old. My husband is doing all the lifting etc but today I forgot myself and picked up my 3 year old. I instantly remembered and went to sit down with her. Im not in any pain and nothing on the outside seems to be affected. has anyone done this and if so, what signs do I need to watch out for with messing up recovery? thank you
Cost of breast reconstruction
Hi, I had a mastectomy 2 years ago and am looking at reconstruction, my breast specialist referred me to a plastic surgeon. His quote has come in where I will be $16000 out of pocket after medicare and private health rebate. I think this is really quite costly. Should I go back to my specialist and ask for a referral to another plastic surgeon or is this the going rate?DIEP fails in surgery
Hi everyone, just wondering if any one went in for a Double DIEP surgery and because there were complications had to have a double TRAM instead? My surgeon is saying if I start with a DIEP I have to be accepting of the possibilty of TRAM flaps. Plus, he tells me, only 20% of DIEPS are successful??? Help, so confused Jodie
Radiation Therapy Omission
Hello, I have been informed by a radiation oncologist that I am at a increased risk of developing radiation-induced fibrosis (RIF) from radiation therapy (RT) due to my having a connective tissue disorder. Following research around this I am currently weighing-up the risks and examining my options. I find the decision-making around this challenging and would like to invite members to share their experiences with: Decision-making around RT omission Experiences with RT omission Experiences with RIF e.g. immediate and late-onset effects Please include as much detail as possible. All comments are appreciated. Thank you, 🌷KlioAnxious wait
Hi all, I’ve been waiting since end of June for a surgery date (they originally only found DCIS in my right breast). Last week the surgeon told me they’ve also found mixed DCIS/LCIS invasive triple positive 8mm lesion as well on my last biopsy. I’ve finally been booked in for surgery 15 October which is still 4 weeks away. I’m an anxious wreck and so scared it is going to spread in that time. Each day I feel weaker and more depressed. I’m wondering if others have been in same situation and what they did. I’m already accessing counselling, meds and exercise. My fear feels so real and overwhelming. thanks for your support 🙏🏽
Left sided mastectomy. Bras?
So next week I will be having a left sided mastectomy. So will be flat on one side - post surgical - and the other side I'm a DD cup. What do I wear afterwards? Do I wear a bra with an insert it in? How long before I can do that? Like weeks? I imagine I'll have to be careful of what's there rubbing it? But I guess I'll have dressings on the scar? I won't be doing any reconstruction at this time. Probably do that down the track once my health is better. What sort of bras do I buy? And where is the best place to buy them? HELP?!! Therese
Burnt out DCIS
Hello! I was diagnosed with high grade DCIS in my left breast in 2024 and opted for a mastectomy on that side. Pathology later showed it had started to become invasive (just barely, but still). My sister passed away from metastatic breast cancer in 2022, and my dad from bowel cancer in 2004, and both had roller-coaster journeys with treatment, so I wanted it out, with what to me felt like the least amount of fuss. I recently had my 1 year check up and they have found 'burnt out' DCIS in my remaining breast. The little information I have found on this says that it is DCIS that has regressed or resolved itself. In my initial chat with the Dr we discussed that given my history, having another mastectomy was the way to go - that we could do further investigation but that there was a high chance it would come back and lumpectomys would kind of be chipping away at one breast - whereas a mastectomy would eliminate risk altogether (I know this isn't 100% but you know what I mean). I've just had a phone call from my surgeon, while we try and find a date for the surgery, who reiterated that we haven't definitely found cancer in the right breast - there are calcifications that weren't there 12 months ago and this 'burnt out' patch, and he wanted to check I was OK with this decision still. I reiterated that I was but now that I'm off the phone am starting to second guess my decision! My gut still says mastectomy - both my dad and my sister died from aggressive cancers in their 40s - and my priority is not giving it a chance to take root in my body. But now I have the niggling feeling that maybe I should watch and wait for a while and see what changes. DCIS obviously isnt guaranteed to progress further, but I can't find enough information about what 'burnt out' actually means longer term. Has anyone had experience with 'burnt out' DCIS and can tell me more about it? Or have any other advice about making a decision?