Tamoxifen - any good news stories?
Hi all, I'm 54yo, just had a single mastectomy and my prognosis is looking good. Oncologist is just waiting for the Endopredict to return a result but is hedging towards Tamoxifen or similar. The more I read the more I'm stressing about taking any of these drugs (my mum was on it 40 years ago and from memory, it wasn't pretty). Are there any good news stories out there? or is it terrible for everyone? Thanks P
Cumulative Side Effects of Chemotherapy
Hi, I have had surgery for BC in left breast and lymph nodes which has been follwed by chemotherapy. I completed my last session last Tuesday and have found the side effects this time very intense. Apologies in advance for the topic, it is not pleasant.At first, Following my final infusion I was unable to go to the toilet and since then (after using coloxyl and prunelax) I have experienced 'urgency' and have had to rush to the toilet frequently. I feel nauseous and have had pain in my stomach. Until this cycle, side effects were unpleasant, peaking n the expected days, etc. but this has been been really brutal. Is this normal? I am so looking forward to things settling down and I am grateful for the excellent care that I am receiving from the amazing oncology team. In about three weeks I will commence radiotherapy which I will receive every week day for five and a half weeks then I will see my oncologist and go on hormone blockers for 5-7 years. I understand that the side effects of these are unpleasant but as I am well passed menopause I believe that this will not be as bad as if I were a younger woman. I am 69 and was working .5 in an academic position until my diagnosis. I know that I am not going back to that position, this experience has been life changing and I have noticed some cognitive changes. They are not 'severe' but I am nowhere near as sharp as I was. I am accepting that and just hope to recover. Is it normal to experience such intense side effects on the final round? Kind Regards, Anni
Taking collagen powder while on Tamoxifen
Wondering if anyone can help point me in the right direction? I am wanting to take a collagen powder supplement while taking Tamoxifen. I asked my oncologist and he suggested I check drug to drug interactions online but I am struggling to get a straight answer. Next time I see the pharmacist I will ask them but wanted to know if anyone has personal experience. Thank you
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.
Early breast cancer treatment decision
Hi everyone, I’d really appreciate hearing from others in a similar situation. I’m young, not (as) close to menopause, and recently had a lumpectomy for a 12 mm, grade 1, ER+/PR+ HER2- IDC. Margins were clear, and there was no lymph node involvement. My Ki-67 is low (10%), and I’ve been told I don’t need chemo. The surgeon noted there was no calcification and no need for PET-CT. No problematic genes. My doctor recommended both radiation and tamoxifen, but I’m feeling unsure. Looking at tools like Breast Predict for hormone therapy, the benefit to mortality risk is minimal (0.3% for 5 years, 0.7% for 10 yrs, 1.1% for 15yrs). I'm very healthy, exercise daily for years, healthy diet, don't drink or smoke. My breast are above average and their tissue is very dense. Women in my family have had rough menopause - incl. severe heart issues so I'm worried about the tamoxifen side effects, and I'm thinking an MRI (?) every 6 months is enough. Given how small and slow-growing the tumour was, and how low my recurrence risk seems to be, I’m struggling with whether I really need both/ either radiation and tamoxifen. I know they each reduce recurrence in different ways, but I’d love to hear from others who had similar pathology — especially other younger/pre-menopausal women - If you only did one (or neither), how did you make that decision? I'm meeting with the medical oncologist for the first time this Friday and keen to have an intelligent discussion that may challenge the conventional/ standard treatment. if you have any research to share - that would be wonderful! I'm grateful for any insights or personal stories you’re open to sharing — I’m feeling a bit stuck and trying to weigh peace of mind vs. quality of life. Thanks so much!Lower dose tamoxifen
I have taken tamoxifen 20mg for 6 years,I have now had a year off tamoxifen as I stopped taking due to side effects, my oncologist would like me to persist and start taking it again as I’m in my 40s and he considers this young. my surgeon said I could just take less,he said there has been research that says it may be as effective,or I suppose it’s better than not taking it, has anyone doctors been happy for them to take less tamoxifen than 20 mg? And if you take less have you noticed an improvement in the side effects? If so do yo take 5 mg or 10 mg a day?Tamoxifen taking it 10 years after surgery?
hi wondering if anyone is in similar situation? I had cancer 10 years ago & mastectomy. no chemo or radiation. Tamoxifen was discussed as an option. choice was mine as it was considered borderline. I didn't take tamoxifen due to side effects. Now 10 years on I need iodine mri's as remaining breast tissue is dense. options given are don't worry, 2nd mastectomy or take lower dose of tamoxifen rg 1/2 dose every 2nd day for 3 years. Is it unusual to take tamoxifen after 10 years? is it just a knee jerk reaction more for peace of mind? how bad are side effects on the lower dose? thanks
