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.
Work/grief/sadness
Hi all, apologies if this has already been discussed but I couldn’t find anything elsewhere. I’m 46, had a right mastectomy (Diep flap) and left reduction in early December for stage 2 invasive lobular carcinoma. My recovery went really well, no pain whatsoever. I still have another procedure to alter the flap and then have nipple tattooing but have to wait until later in the year. Started on Tamoxifen in Jan. I went back to work at the start of March and since then have felt the wheels come off a bit. I went back on reduced hours but in a different role to what I usually do (but just as busy!) 3 weeks in I was feeling overwhelmed and crying at the drop of a hat. This role was only to cover someone else and when I asked for more time on reduced hours/duties I was given yet another new role which is totally unfamiliar to me. Consequently I ended up leaving work early this morning as I was in tears. I think because my recovery went so well I hadn’t properly processed everything that had happened before (diagnosis to surgery was pretty quick). And work seems to have triggered a huge reaction that I didn’t expect. It feels like the reality of all this has hit all at once and I’m on a huge emotional rollercoaster. I am seeing a counsellor and she’s been amazing. Plus I’ve started acupuncture. I’m so used to be busy and I used to love it but at the moment, I just don’t have the capacity for it. Has anyone else had a similar experience?
Completing Hormone Therapy
I was wondering what others experiences have been completing hormone therapy for early breast cancer? I have another year of tamoxifen to go and wondering what to expect in terms of follow up once it is completed. I underwent a bilateral mastectomy and DIEP reconstruction. I haven't had chemo or radiotherapy.
Tamoxifen after Hysterectomy
Hi All, haven’t been on for a while but haven’t forgotten what a great source of support and advice you all are. I’m 3 years and 3 months out of treatment. - LS mastectomy and tamoxifen. I am due to have mitral valve replacement within the next few months but I’m unfortunately having to undergo a hysterectomy beforehand due to heavy periods (warfarin will not be my friend otherwise) I’m wondering if I’ll still need to take tamoxifen after my hysterectomy? ( I know I need to come off it prior to both surgeries) and … long term …. What are alternatives to HRT to prevent memory loss/ osteoporosis/ turning into a seething beeyatch? anyhoo. Lots of loves to all of you. Many thanks in advance for any enlightening comments you can give me ❤️❤️❤️ xxx
Counselling support & depression on Tamoxifen
Hi! I have been cancer free for 3 years and have noticed recently that I’m getting bouts of really bad depression and think it is before I have my period. Is anyone else dealing with this whilst on Tamoxifen?? Also, whilst going through treatment, I just went through the motions until I got through it all, worked throughout everything until it all went back to “normal” and now I think I need to seek counselling this all, as I don’t think I ever gave a chance for myself to process everything. Has anyone else seen a counsellor post cancer and how did you go about it? Are there any specific services?? Thanks!The tears are driving me mad
Hello i am 4 year survivor and have been on tamoxifen the four years. i am fed up with flushes, feeling like utter crap, NO libido (can’t remember what intimacy with my husband feels like) mood swings and generally just over life. unfortunately I also have rheumatoid arthritis and type 1 diabetes so completely over medications. i am considering stopping the tamoxifen. Haven’t spoken with the Oncologist about this and don’t intend on doing so. I am making the choice for me and my sanity. i cannot remember what a good uninterrupted sleep is like. I am at the point of if the cancer comes back so be it. Can anyone please tell me if there is anything I should be concerned about from just stopping tamoxifen. Thanks
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.
Choosing between tamoxifen, zoladex or no treatment at all...
Hi all, I'm new to this forum but not new to BC. I was diagnosed in May last year, had a lumpectomy, sentinel lymph node biopsy, radiation and started tamoxifen a year ago. However I suffered terrible side effects and was given the choice of zoladex as an alternative to it. I have not been on tamoxifen since may this year and have enjoyed a much better quality of life. With zoladex I've been told that osteoporosis and early menopause would result, which doesn't sound great either. I'm really torn about what to do. Is there anyone who has decided to leave it up to fate and not take any treatments at all? Is that an insane choice to make? Any insight or personal opinions welcome. Thank you so much!life after tamoxifen
Hi All, This is my first time posting. I was one of those that coped better trying to forget about breast cancer. I had a breast removed, chemo, radiation and currently in my 6th year of Tamoxifen. (It was originally prescribed for 5 years then almost flippantly my surgeon said lets make it 10 years). Tamoxifen has completely eradicated my sex drive although when I do get going I really enjoy it, but, enjoyable as it is I never orgasm. I guess my questions are, has anybody been on Tamoxifen for a long period and then finished? Does your sex drive and more importantly do orgasms go back to normal?