Struggling with Tamoxifen side effects
Hi All , My name is Christine, I have been on Tamoxifen now for 2 years and have always struggled with the side effects of Tamoxifen...I get them all! I have had 1 breast removed after being diagnosed for a second time with breast cancer 2 years ago.The first time 10 years ago I underwent radiotherapy ... I'm 48 yrs old. I am struggling with: Hot flushes Aching legs Struggle to keep weight off no matter how much exercise i do moodiness loss of libido fuzzy headaches generally changed me to feeling crap daily Interrupted sleeping patterns Constantly going to toilet I have spoken to my doctor who suggested anti-depressants which helps with the hot flushes but i am reluctant to take them due to other side effects. I have suggested stopping Tamoxifen to my doctor who advised it would reduce my life span by 2-3%. I have a friend in a similar position as mine and she stopped them with no issues to date (8 years) and is urging me to stop. Does anyone suggest alternatives or make comment if stopping Tamoxifen is irresponsible? Any help or suggestions are much appreciated. It is really affecting my life, my personality, my thinking and made me a completey different person .. I was once strong physically, mentally and spiritually ......its also affecting my husband..anything he can take?..lol Christine xx
Tamoxifen - feeling down
I have been on Tamoxifen for a little over a month. Initially experienced period like cramps (I am 60 so forgot this feeling), tiredness & discharge which have subsided. For the last week my mood has been from being agitated to feeling low & sad then completely well balanced. Is this normal? How long will this last. Also should I just stop taking it? My cancer ended up being a grade 1 contained and all removed. I know I need to see my oncologist but wanted to know what others have done in a similar situation.
Hair loss
Sitting here with tears streaming cos my hair has started coming out in big clumps. I'm on day 19 since start of chemo so I've been expecting it but that doesn't make it any easier. I feel overwhelmed by this and more distressed than I did about my mastectomy. It feels like I've barely had time to process the diagnosis, and then the mastectomy, then chemo, and now this new big horrible thing. I know I need to phone my hairdresser to book to go in and have it all taken off, I know it's time. I just don't want to. I know it grows back and I have a wig and some head coverings already. But none of that makes me feel better. I just feel this big huge grief for the loss of my hair, my look, my identity, my appearance of seeming healthy. Thank you for reading this. I know there is a whole community of us warrior women out there experiencing similar challenges. I know my emotions are spiking right now and they will settle. I just needed to vent and put my feelings into words.
DC chemo reaction change to AC
Hi wanting to know if anyone had a bad reaction to their first chemo. Within 5 minutes so much so that they stopped the infusion and are changing my regime to AC. I can’t seem to find much about the differences between the two and hoping some bright person on here may know. It has really thrown me for a loop mentally as I was all prepared maybe a little too much research but that is how I roll. Now I just feel a little lost.
Refused mammogram because I had one six months ago
I had my annual mammogram in November 2019 where they found a small lump and biopsy revealed it was breast cancer. I had been having annual mammograms because my mum had breast cancer. December 2019 I had a lumpectomy and lymph nodes tested but the cancer had not spread. In January 2020 I had daily radiology treatment and no chemotherapy was required. My surgeon checkup requested I have a mammogram in November 2020 which was booked and a follow up appointment set for two weeks later May 2020 I had rib/chest pain and an mri was undertaken. It showed abnormalities in the breast so a mammogram was undertaken and all clear. The pain was probably due to the radiology treatment. November 2020 I attended foe my mammogram and the mamographer refused because I had one six months ago to do the mammogram and she left the room and rang my surgeon who allegedly agreed I should wait six month for my mammogram. I said I wanted to have the mammogram because I never felt the original lump and I wanted to celebrate 12 months of being breast cancer free. The mammographer was a bully and made me feel humiliated. I wanted to have my annual mammograms every November because this is the milestone of my journey. When the mammographer rang my surgeon she should have done it in the room with me and gave me the opportunity to discuss my feelings with the surgeon i cried the half an hour trip home and cancelled my surgeon appointment because I no longer trust him and are hurt how he didn’t consult me Since this episode I have advised my GP that he is no longer to discuss my case with the surgeon or my oncologist. I am devastated and said I will sue them if breast cancer is detected in my mammogram in six months which will be undertaken at another facility in another town because I can’t ever face that mammographer again My appointment had a referral and I was a full fee paying private patient and should have control of my care as it’s my body and I wasn’t concerned about the radiation that the mammographer said she was saving me from and I told her I had daily radiation treatment so I wasn’t worried about that Then I received a phone message from the breast care nurse saying she was returning my call when I didn’t even ring her i can’t ever go through the humiliation of attending a mammogram with the fear of being refused again so I will now be undertaking a double mastectomy by a surgeon in another town or MelbourneDown and depressed
Hello I started on tamoxifen for a few months and then was put on Letrozole after I had my ovaries removed. After 3 months I was taken off Letrozole due to severe side affects of joint and muscle pain I had a 3 month break which by the end of 3 months I was back to being able to go for walks, do stretches losing weight all the things they tell you to do to help reduce the risk of cancer coming back. I was then put on exemestane I took this for four months and even though the aches and pains were not as severe as the Letrozole they were increasing and happening often so have stopped taking the arimidex. I am now back on the tamoxifen and it’s been just over a month I have been able to go on my walks and do stretches, I have had really bad fatigue though and usually when this happens to me I go and sleep and would be ok the next day but this fatigue now lasts for days, I get depressed about this because I can not do anything and I am feeling very stressed out as I really don’t want to keep living like this for the next five years, I am trying to do all the right things to help my chances in surviving but the hormone blocking treatment would no doubt be the hardest part of my cancer journey for me ,,,, please someone tell me there is light at the end of the tunnel....
Newbie
Hi, I'm Barbara. I started my BC journey on 7th May. I had a lumpectomy for the removal of 44mm lump with 5 satellites on 4th June and then a further anxcillery clearance on 16th June. 9 of 15 lymph nodes were cancerous. Have started the chemo journey and I will finish off December or January with Radiation therapy. I had a clear mammogram in March 2019. By May 2020 I had a fast growing cancer that had spread to my lymph nodes. I am reasonably healthy and being over 50 do all the right health checks. There is no BC in my family. I never saw this coming, but yet here I am. My prognosis is good as my pet scan has shown no further cancer. I am lucky and appreciate my life all the more. But I do have issues around talking about BC so this is why I am reaching out to you beautiful people who understand how difficult, lonely and devastating this disease is, made worse by Covid. Anyway best wishes to everyone 💕Home from Surgery
Hi, I'm home now (yesterday) and it's over. On the morning of my mastectomy surgery (Monday 18 May) I was feeling quite anxious but trying to remain positive at the same time. The staff were lovely but I found not as friendly as my first lot of treatment for wide local excision with nodes removal or perhaps it was me with more major surgery to have and super aware of everything around me! In recovery I had quite a bit of pain they had trouble getting me to a pain free point. Then taken back to a room to stay overnight. I was advised to peek at my scar as soon as possible and not to avoid looking as I would feel worse if I delayed looking. I could see a line of stitches when I looked down through my gown and thought well that's it! Snoozed in and out a bit with some pain relief. But didn't sleep much through the night. Doctors and Nurses saw me on Tuesday morning and asked how I felt and said they would perhaps look at sending me home on Wednesday and I could stay Tuesday night and sort out the pain relief issues. Nurse said to have a shower and see if this made me feel better. Well being a bigger girl getting dressed and undressed in front of a stranger is something I have struggled with. I married my first boyfriend! Young female Nurse was lovely and said she would help me. Being an independent person and sometimes stubborn I said I would try myself. Managed to get undressed - not easy I tell you. Someone needs to invent Velcro undies so I don't have to bend down to remove undies. I managed to fling them off around the room avoiding looking at myself. I turned the water on. Put my heavy drain tube bottles on the floor. Turned the water on and looked in the mirror. Well the sobs came loud and hard. The running water didn't drown them out as I had hoped. I knew I had to let it all out so I could deal with it and move on. Lovely nurse called out. Are you crying. I said nooooo. Sobbed louder. She said it's OK if you are, are you crying and I said yesssss. She said do you want a hand. God no, because now I was a hideous deformed beast! Stayed in the shower a long time and was ready to attack anyone who said it's time to get out. Someone else would like some hot water! Took a long time drying myself and put my brain back into gear with well - bad boob gone, want to live. It will heal. The hardest thing now was how do I get my legs through my undies! Wrapped myself in a towel and asked the nurse for some help. She was lovely. Wishing I had packed a lipstick because I wanted a bit of colour of my face. Nurse said I would feel better after breakfast. Had a few bites of breakfast and then threw it all up. Waste of a good shower. Got cleaned up again and had black tea and savoy biscuits
Reconstruction, revision and drains
Hello, I had my tissue expander swapped over to an implant in July however my surgeon has advised I may need revision surgery on Monday as necrosis (dead skin) has formed around the incision and the implant is now exposed. The revision will prevent any infection. As I have an important appointment next Friday that can't be changed, I want to make sure I will be able to make it. During the surgery in July, my drain tubes were in for over a week before they were removed. Has anyone had revision surgery before and did you need drain tubes? I'm hoping the surgeon will tell me tomorrow that drain tubes won't be required this time.. Fingers crossed! Thanks Emma
