From bad to worse, but getting better.
I remember writing in these forums when I first had early breast cancer. I’m back! I was diagnosed MBC last year in March. It’s been a crazy roller coaster! My original cancer was triple positive IBC. It came back in my liver only. It was riddled with them and some were huge. And just six weeks after my reconstruction, when I was “putting cancer behind me”. Anyway I had an amazing response to 3 months of THP and a holiday in Greece last year and they vanished. There was an unfortunate incident involving a hot water bottle that gave me third degree burns to my reconstructed breast. I also had to get a seroma drained ten times (it’s still there). In November I had two small tumours come back, progressing after just six weeks on HP. I went to USA and accessed a new treatment called histotripsy that blows up tumours using only sound. We blew them up and they were gone and I moved onto Enhertu. After six months we saw new progression so I went back to USA in June and blew up the biggest two, which had grown so fast (to 3cm from nothing in two months since a clear MRI). I still have a few in there but hopefully less aggressive ones. Now I am facing a situation where I have discovered I was not offered or given the first line treatment after chemotherapy, and now, I am not entitled to ever receive it on the PBS. I am self funding Perjeta for now but hoping my appeals to the PBS people and to others might help in getting it subsidised or under compassionate access. I feel I am being penalised for my oncologists “mistake”. The truth is I think he did it (called my cancer HER2 only and treated it as such to give me the best chance to access T-Dxd early in the piece I have also now been advised to consider Palbociclib based on the Patina results but this is also not on the PBS for my type of cancer. So somehow on top of the 150k I have spent on blowing up tumours I am expected to find another 100k per year for medicine? Or just accept inferior treatments? Life with MBC can be hard. This week I got an MRI that was interpreted as major progression. I cried I ran off to the hospital to fill the palbo prescription then came home and realised the lesions (extremely suspicious for metastatic progression) were actually the three treatment zones I had targeted (phew). So there are only babies that will hopefully now start shrinking from standard of care 15 months late and largely on me. I’m considering going to India for cheap palbo or back to California for more liver bombing. I never knew cancer would turn me into a jetsetter. I am also a mother of two girls 10 and 13. Keen to hang around as long as I can. Well that was a long story! I remember I got some good support here when I was going through it the first time. I’d love to meet others in the same boat in Melbourne.
Aries
I had a lumpectomy 4yrs ago and was told I didn't need radiation or chemo. Last yr the cancer returned and I had total removal of the nipple joined up with previous scar on left breast. I have been on Tamoxifen and had bad sweats bloated stomach sleeplessness and hot flushes. I changed to Letrozole and had same effects so tried the sister to it but can't think of the name. It's gotten so bad with restless legs as well I can't even look at it so dont take any of them. I'm 75 I know the risk and will seek further advice next wk. There was no quality of life for me during the 6 months I was taking these meds.
Early Access Program - Kisqali / Ribociclib for EBC
Hi there, My medical oncologist called me yesterday to discuss the issues with the current early access program for early BC and Kisqali / Ribociclib. Apparently, the current formulation contains very small quantities of 'nitrosamine' which have been shown in studies to potentially (in a very small number of cases) cause another cancer. The new formulation will not be available for a few months from the manufacturer. Has anyone else who is on Ribociclib had this discussion with their med onc / decided to pause the drug - or decided that the risks are OK and chosen to continue with the medication? Noting there is a BC conference in Berlin next week (my med onc is going but not presenting) and there are a number of sessions discussing CDK4/6 inhibitors for early BC with high likelihood of recurrence. Not sure also if this affects mets patients who are on Ribociclib already too? Just when I think I'm on a certain path things change ... again. Kelly (totally acknowledging personal choice etc - but keen to know what others have been told, and if anyone is OK to share, what they have decided to do).
Scanxiety - bone mineral density
Tl;Dr - it’s another 2 am freakout. I'm having a panic into the void. I'm 3 years on from my diagnosis of early breast cancer (hormone positive idc). I went for my routine bone mineral density scan yesterday, and now I'm really frightened. I could see the image as it was being taken, and there was one spot on my spine that seemed much lighter than the surrounding bone. I don't know what a normal scan looks like, but what I saw on the screen has scared the living bejeebers out of me. I’d crawl into bed and stay there waiting for the dreaded call, but I'm in a proper panic and can't sleep. Far out, I hate nights like this.DCIS Diagnosis (Breast Cancer 8yrs ago)
Moderator moved @cancer_warrior62 post from 'Activity' section to dedicated post in 'Newly Diagnosed': cancer_warrior62 Don’t know if this is the right place for this but I’m struggling each day as it gets closer to my surgery date. I had breast cancer 8 years ago, stage 2 her2 positive had a lumpectomy, did chemo- radiation- Herceptin and 5 years on Tamoxifen, then end of May this year at my routine mammogram they found I had cancer again in the same breast this time it’s DCIS but next week I’m booked in for a Double Mastectomy. It’s hit me harder this time round and I’m crying at the slightest thing even though I’m trying to stay as positive as possible and also joking around with family to lighten the mood about it but anything could trigger me off. I’m always wondering what I’ll look like after as I’m not going to do a reconstruction. I may later down the track in a few years depending how I feel and it’s too much for me to go through. Any advice would be appreciated.
An In Depth article on BC Recurrence - what to look for - well worth a read
The article (below) is a 'must read' .... I've attached a PDF of it as well, so you can download it too. http://www.melbournebreastcancersurgery.com.au/breast-cancer-recurrence.html?fbclid=IwAR3HS79ElQjVbGpDuHUU538J-cm9RfZZ1qZ8vO-3Xc4u87SWilz--wGvxa0 There is a specific link to Invasive Lobular Breast Cancer, within the article. https://www.verywellhealth.com/invasive-lobular-carcinoma-ilc-breast-cancer-430623 It is written by Melbourne-based Dr Jane O'Brien ... who is a specialist breast cancer and oncoplastic surgeon who specialises in surgery for breast cancer and prophylactic/preventive surgery for high risk individuals. Her area of special interest is in “oncoplastic” breast surgery, aimed at maximising the cosmetic result following breast conservation surgery for breast cancer using advanced surgical techniques, and nipple- sparing mastectomy and reconstruction, both in the preventive setting and as treatment for cancer. Jane completed her medical training in 1985, graduating from the University of Melbourne. Following advanced surgical training at St Vincent’s Hospital, Melbourne which she completed in 1994, she undertook a two year breast surgical fellowship in Melbourne and Edinburgh, Scotland. She then worked as a consultant breast surgeon in the United Kingdom for a period of eight years at a number of world class, internationally renown breast units. During her time in the UK Jane gained extensive experience in breast reconstructive techniques, and used this experience on her return home to become one of the first breast surgeons in Australia to enthusiastically embrace the fledgling subspecialty of oncoplastic surgery, which was at that time still in it’s infancy. Following her return to Melbourne, Jane in 2005 established the Epworth Breast Service. She held a public hospital appointment as a specialist breast surgeon at the Peter MacCallum Cancer Centre from 2004-2013 and at Breastscreen Victoria from 2005-2017. In 2017, Jane relocated her breast practice to St Vincent’s Private Hospital East Melbourne, establishing The Breast Centre at St Vincent’s Hospital East Melbourne. Jane has a particular interest in the treatment of breast cancer in younger women and genetic breast cancers, and in the organization and delivery of multidisciplinary breast cancer care. Jane’s main area of surgical expertise is “oncoplastic” breast surgery, aimed at maximising the cosmetic result following breast conservation surgery for breast cancer using advanced surgical techniques and also nipple-sparing mastectomy and reconstruction, both in the preventive setting and as treatment for breast cancer.
So its back, breast cancer 2.0 - thanks so much
so after a fabulous dry July Campine raising funds, I got my results from the double biopsy today (this morning) - from an earlier ultra sound after they the new medical team picked up some extra bumps they felt from a physical exam earlier on, post lumpectomy in Jan where I was told all gone, clear margins , nothing in the lymph nodes all clear there too. HAHAHA nope lets try a different result result, a false negative was given at that time back in Jan 2023, as my new medical team have now confirmed that there's still cancer sitting in the lymph nodes from the 1st time - so where to now, another pet ct scan, another MRI, back to theatre to removal these lymph nodes and coming home with a drain, This bit is new to me, as 1st time around I didn't have a drain. What can I expect with a drain? Can I drive? Can I wash my hair? I know that may sound silly, like clearly going back to swimming will be out for a bit and yoga class, Can the bag sit in the side strap of ones bra? Thankfully I'm keeping my breast ( as this point in time) last op was a lumpectomy so that was a plus, I know others don't get that choice. Just a bit mad, like here we go again, I was 6 months post breast cancer surgery and on the home stretch to my 1st year of being cancer free to my mammogram of 1 year post breast cancer, but nope, do not go pass go, do not collect $200, no get out of jail card for you!
Here I go again!
Hi there. Newbie to this online group. I had my first diagnosis in 2006 at 46. A grade 3 ductal cancer for which I had a lumpectomy, radiation and hormone blockers. I had Tamoxifen until developed uterine polyps (3yrs) and then switched to Arimidex (another 5 yrs). My maternal aunt had BC first in her mid 30’s and then late 50’s before she died of mets in her mid 60’s. I’d had annual mammograms since 40 because of my family history but have no genetic markers. All going well until my last mammogram which showed another BC in the same breast. This time a lobular cancer. Luckily very small and no spread but still devastating. I’ve had another lumpectomy- because I would not speak the M word! I’m now recovering from that and have started hormone blockers - again. I can’t have radiation again in the same side - which I’m thankful for - and I don’t need chemo - again very grateful. However I feel my surgeon would prefer me to have had a mastectomy ( that word I will not speak of!). I see home again in a few months and I’m thinking this is what he will recommend to keep me safe. At least I’ve had time to get my head around this and find out more about it - I just didn’t feel I could make that decision in the days between my biopsy results and surgery. Anyway I’ve been reading lots of posts here and finding out more each day. I have a bit more knowledge under my belt from my previous experience and in some ways that makes it worse! I worry about the impact of hormone blockers on my long term health and my ability to keep fit and keep the weight under control. And I’m concerned about a reconstruction and how long the recovery will be. One of the worst things about the past few weeks is that we had to cancel a much anticipated overseas trip. We haven’t travelled since 2019 so we are keen to get back travelling but not to be! I keep saying to our kids I’m not sure how many good travel years we have left and there’s so much still to see! ��🤣Two different types of breast cancer
In 2019 I was diagnosed with Triple negative breast cancer in the left breast and had a masectomy and chemo. In 2022 I was diagnosed with hormonal breast cancer in the right breast and had the second masectomy. I have been on Tomoxifin for 5 months but stopped taking it after speaking with my Oncologist. I had so many side effects. I am post menopausal i would love to hear from others who have had the two types of cancer. Also from others who encountered Tomoxifin side effects such as nausea, dizziness and depression.
