5 months since diagnosis
Hi, I have posted a bit of my story here but thought I'd post a more complete summary here for posterity. I turned 50 in Jan24 and moved from Melbourne to Adelaide in Mar24. Shortly after arriving I got a letter from BreastscreenSA offering free screening and basically ignored it, Then I started a new job in Aug24 and there are BreastscreenSA flyers on the doors in the ladies' loo and those faces kept looking at me everyday so in Nov24 I buckled and book in for a screen in my lunchbreak. I was in and out in 10 minutes, it was a little uncomfortable but not painful. I thought nothing more of it until I got a call 3 weeks later saying after reviewing the images a spot had been noted and I should come in for enhanced imaging, ultra-sound and based on the outcome of those, possibly a biopsy. The appointment was booked in for 2 weeks later. I didn't tell anyone, partner included, and tried not to think about it. I was in the 'its probably nothing' phase. At the appointment I was shown the original mammogram images pointing out the bright spot in my right breast they thought looked suspect. It was small, quite high up and at the back away from the nipple. I had the 3D mammogram and based on that they went ahead with an ultra-sound. They showed me the same spot on the ultra-sound and recommended a biopsy. I went ahead. I had no choice at that point to tell my other half as I came out with a wedge shaped bruise and dressing on my boob I was not going to be able to explain away. I should also say that being a normally healthy person I hadn't bothered registering with a GP since relocating so I had to call around and settle for the only place that was accepting new patients and could do an appointment the next day. 4 days after the biopsy and 9 days before christmas, I went back to the BreastScreenSA assessment centre for my results. It wasn't good news, I had a ~6mm, Grade 2 IDC ER/PR + HER2 -, and very dense breast tissue. The nurse called the GP on my behalf to make an appointment for the next day for a referral for surgery. I was referred to the RAH and had my first appointment with the surgeon and met with the Breast Care nurse just under 2 weeks later, this was 30Dec. The surgeon talked me though the treatment plan. It was to be a lumpectomy with a sentinel node biopsy followed by a course of radiation therapy rounded out with 5 years on Tamoxifen. No chemo required. I'm sure I should have asked more questions about the treatment plan, but to be honest I was so relieved I wouldn't need chemo and he wasn't suggesting a mastectomy I just accepted what he was telling me. I had another ultrasound and they placed a carbon track for the surgeon to follow. I was also booked in for an MRI due to the density of my breast tissue to check for anything the mammogram and ultrasound may have missed. That happened 2 weeks later and thankfully I didn't have to wait long for the results, 2 days later I was told there was nothing else identified on the MRI so we would proceed with the treatment plan which meant surgery 2 weeks later on 30Jan. I had the surgery on the Thursday, up to this point I hadn't really been too emotional or anxious. I was taking each day as it came and going by the 'it is what it is' principle so I wasn't overthinking it. My partner was also determined not to let me give into anxiety and worry, we are both of the British stiff upper lip type, we rarely get over-emotional and the approach worked well. Until I walked into the operating theatre, lay on the bed and burst into tears! It just all became very real and I started sobbing, they asked me to confirm the procedure they were going to be doing, which I did, then all I remember is the nurse holding my hand telling me they would take good care of me and me blubbing 'I know'. Then I woke up in recovery and started crying again, this time with relief. I was in the hospital overnight, I had very little pain - probably due to the pain killers, and I was discharged the next morning. I was given a prescription for some strong painkillers but I didn't need them, I was able to manage with just paracetamol. I was back at work on the Tuesday. I only told 2 of my closest colleagues about my diagnosis, one I sit opposite so I felt it only fair to explain why I might seem 'a little distracted' and was having so many medical appointments. The other is a friend. The only issues I had in the days following surgery was difficulty sleeping as I had to sleep on my back rather than my side/front which I prefer and some swelling which turned out to be a seroma that was drained when the dressing was removed. The special little pillow I was given by the BC nurse was helpful for sleeping a little more comfortably too. I had my post-op follow-up 10 days after surgery and got the news that they had removed a 9mm tumor with clear margins and the lymph nodes were also clear, so no further surgery required. The dressing and stitches were removed and the seroma drained. I was given a prescription for Tamoxifen then too, with instructions to start them sometime after the radiation therapy was finished. Then it was all quiet after that for a few weeks, I was left to heal and I was feeling pretty good, I still had numbness in my underarm area but the swelling was coming down and the bruising fading. 5 weeks after surgery I had my first appointment with the radiation oncologist who explained I would be having 15 fractions over 3 weeks. The planning CT was scheduled the following week, I had my little tattoos and treatment started 2 weeks after that. Call me weird, but I actually rather enjoyed the daily ritual of going to the hospital for my little 10 minute lie down. I might have felt differently if it hadn't been so convenient. I can get to the hospital from home in less than 40 minutes and it is only 10 minutes from where I work, so travelling wasn't an issue and I was able to have the sessions scheduled either before work or during my lunch break. I had very few side effects from the radiation, the only one of note being my nipple itched like crazy, I used the sorbalene I was given and the nurse gave me some silicone dressings that really helped, anti-histamine worked wonders when the itchiness was at its worst. My only other side-effect from treatment so far is a little bit of cording in my right arm which is being managed with massage and exercise through a lymphoedema physio. That brings me right up to the present. The only visible signs are a single scar about 6cm long in the crease of my right breast just below my underarm that is smoothing out and fading nicely, and some residual discolouration from the radiation that is also fading. Yesterday I went to the pharmacy to fill the tamoxifen prescription and took the first tablet this morning. My next appointment is in early August. I'll post more if/when side effects of the tamoxifen kick-in. This the phase of treatment I have been most worried about. I feel well and would rather just leave the whole thing behind me. But I know I can't do that. It was dumb luck that I went for that first mammogram when I did, that the BC was picked up when it was, and was able to be treated to simply. I feel very lucky to have come this far with so little disruption to my life, knowing it could easily have been so much worse. This was a very long post so thank you for persevering if you are still reading, and thank you to all that post, reply and like the posts on this forum. I've read so many stories that just reinforce the gratitude I feel for the support that is their for us all as we travel this journey.
Craig Jordan - the 'father of Tamoxifen' and anti-oestrogens has passed away
Craig Jordan (who discovered Selective Estrogen Receptor Modulators (SERMs) and developed breakthrough breast cancer treatments), died June 9, 2024, at his home in Houston, sadly from renal cell carcinoma. He was 76 years old. He was born in the USA but went to the UK as a child & did all of his medical training in the UK but eventually relocated to the USA, where he died. An interesting write up on him, here - apparently Tamoxifen was initially used as contraception (but in fact, it increased fertility!) He applied it to blocking oestrogen in women with breast cancer - and it has been used ever since. https://www.mdanderson.org/newsroom/md-anderson-celebrates-the-life-and-legacy-of-v-craig-jordan-PhD.h00-159698334.html And info from Wikipedia: https://en.wikipedia.org/wiki/V._Craig_JordanTamoxifen
Well woo hoo is what I say! I had seen on the news last weekend that some drugs had been reduced in their end price to us the patients. Well to my surprise I needed to pick up my next pack of Tamoxifen (Sandoz brand) and instead of the usual $38.50 today's price was $19.50!! Woo hoo!! I hope that translates to other drugs that we all have to purchase
Tamoxifen version 4 and a fantastic week
Like a bad movie that should never have had a sequel let alone 3, here goes round 4. i've had another little Tamoxiholiday after getting into quite a serious funk a couple of weeks ago. This time I have ditched everything, the drugs, the drugs to counteract the side effects of the drugs, all the vitamins and supplements as well. I didn't really think they were doing anything anyway after 10 months of taking them. Each time I go off it, the side effects give a little and take a bit longer to kick back in. This time after two weeks, they ALL GAVE UP. I have had the best week ever since D Day. That's right, no hot flushes for a week. No foggy brain. A week of no aches and pains, no creaking clicking joints, no funky mood swings, no hot doona dance (and that was not in a good way either) :smile: Sleep, glorious, unbroken sleep and, even a bit of mojo coming back. :wink: I went for a decent trail ride up through the mountains on my horse and was not crippled the next day. The only thing that didn't return quite as well as it has been previously is my short term memory, which is somewhat disturbing but it's not terribly bad. I've been on a bit of a high actually. So, so good to feel normal again. Kind of like a good drug you want more of :blush: So I am really dragging my feet on popping that pill again. The best thing is that I have been able to do some serious, clear headed thinking and soul searching. I have decided this will be the last time. If I can't get it under control there won't be a version 5. I am content with this decision and am not prepared to spend 10 yrs feeling like a moody, teary, achy, no mojo, foggy space cadet for an extra 6% maybe. If it comes back will I blame myself? I have heard and read of too many recurrences even after doing all the right things for years so I don't think so. I would never have known either way. Quite frankly given the amount of spread that was already there I think I'm going to be pretty lucky if it doesn't reappear even with the drugs. Let's hope the chemo did it's job. That's not meant to sound negative of morbid just realistic. My onc has handed the reins over to me and I am to call him if I want to try any of the other drugs. Apart from that "see you in 6 months". I think he's given up LOL Anyhoo all that being said I really do want to do everything that has been recommended. I am hoping going into it feeling this good in mind and body, and armed with some tips and ammo from my new found friend in the UK , it will get sorted. I am off to have a glass of wine. (ok, it's the third one) So cheers to giving version 4 an absolute red hot crack and slapping this bitch into submission. Thanks you for listening once again lovelies. xoxoxoxo Theme song for the day................White Snake.................Here I go again.
Last round of chemo today
Last round of chemo today and I'm feeling nervous . I feel like the chemo has been my safeguard for three months. My friends all sent me congratulation messages this morning but I'm nott feeling it. Its so terrifying. I will now continue with herceptin and commence Tamoxifen in a few weeks. Im now concerned about the side effects with tamoxifen.Tamoxifen supply trouble
Howdy all, Well who woulda thought I would be complaining about not being able to get this drug. LOl Ok, well not the drug itself but the Novladex D brand. As it is the only brand that does not make me want to jump off the nearest bridge I'd be loathe to change...actually I just wouldn't, I've tried the others and they all stink for me. Not sure what the status is in the rest of the country but Brisbane and Ipswich seem to be pretty short on supply with back orders not expected until June/July. I spent yesterday morning on the phone ringing around after my 4 local pharmacies could not supply. About 20 phone calls later I tracked some down about 30k's away and they were nice enough to dispense one of the repeats as well. They wouldn't allow three lots at once though :neutral: So if this is your brand you may want to check out the availabilty sooner than later. xoxoxoxxo
Hormone therapy, it will be ok. :)
I have done 2 years of Tamoxifen and I lasted 3 months of Letrozole. In all that time I have been unable to work and have been too lethargic to do much at all. Yes I was one of the few who had pretty bad side effects and it was really getting me down. I was thinking is this my whole life now? This aching body, is it permanent? Well I have gone off the Letrozole for three weeks. Only a couple of days in to it but I have energy! The aches are gone! I feel fan-flaming-tastic! I am gonna be ok. <3
