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.
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....
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
Tears in the Dark.
Last night, My Wonder Woman Shield got laid down. I took the suit of Armour I have been wearing since the day I found out I had Breast Cancer in February and I smashed down the wall I had built around myself for protection and unleashed the ocean of tears that been closed up inside. In the quietness of the night, I howled and gasped for breath as the heaving wave came crashing around me. Why, did it happen last night? Simply, the fear, the worry, the unknown and frightened woman I have hid away needed to let go and accept for the moment, I had done all I could and it was okay to feel the fear. I cried on and off for hours, whether awake or in my sleep - I just cried and cried. This morning, I dressed, ate breakfast ,swallowed my first dose of pre meds and went to the Chemo Clinic with my Husband at my side to begin my first round of Paclitaxel. (Due to some complications from surgery - they switched me to 12 cycles of Taxel then the 4 x 2 double doses to give my white cells a boost - hopefully). I got greeted, walked into the inner sanctum of the Chemo Ward, asked to choose a chair - next thing the fucking fear, reality, shock hit me and I took off, out the door, gasping for breath and crying looking for the exit. That really shook me to the core - that need to run! Holy shit, never in my life have I run when faced with adversity. I have always stood there and fought even I could fight no more! Not today - I wanted to bolt, run, hide, never face anything again! it took my husband, my breast care nurse, two oncologist nurses to guide me inside, place me in the seat and soothe me back to the Lois they have come to know - The Warrior Woman. They let me weep, while i told them of my shame at my behaviour, the loss of face before the other brave souls within the room who had witness me bolting for the hills at high speed....then told me it was time. The fight was over, I sat there and accepted there was no where to go but to sit quietly and let Chemo and the Chemicals, play their tunes and fight my battle for me. Just like to point out - that there a song through my head, I normally play this song, when I am feeling overwhelmed and do not have the place to scream out loud. It is a song called "Stranglehold" by Ted Nugent. That played over and over as they put the cannula in, turn on the drugs and I felt it begin to flow throughout me. I did have a reaction to the dose - almost within minutes. Shortness of breath and a flushed red face hit me. Holy shit was i bloody frightened. Next thing I had a swarm of staff around me. Gentleness prevailed, not one bit of hysteria emanated from them. That helped me so much - the calmness, methodical protocols they applied and I was given a 20 minute break before they halved the dose and I was able to go ahead and finish the dose. I must admit the Phenergan helped and I fell asleep for the next 1,.5 hours before being gently woken with "Lois, Darling - you have finished your first cycle - Congratulations!" I burst into tears of pure utter relief and joy! As the night has begin to come now, I feel a sense of peace prevailing. I still have had the odd moment of bursting into tears over anything and everything but that is okay! The confidence and hard core Bitch will once again pick up her sword and Armour and come out to fight but just not today. Wonder Woman is having a rest. Lois has bought herself a nice packet of Phenergan and for the first time in 2 weeks, she is going to knock herself out tonight and sleep! Sorry it is a long post - I never could just write two lines! Just like to point out I am a novelist..lol So - I will finish this post with one song you will know - "Let it Go, Let it Go!" Love to you all and Big Hugs. Lois ( who did not know she possesses the talent to sprint 100 metres to no where - in a nanosecond)
Vulnerability
Hi all, I'm almost finished my radiotherapy treatment, 17 sessions done and only 3 to go.. hooray! So relieved and happy to be near the end. You would think by now I would be getting used to the routine wouldn't you but hmm anyway.. At my original planning appointment in the CT I couldn't shake the feeling of vulnerability I felt. Eventually I became overwhelmed and I ended up crying (not sobbing, just tears kept pouring out of my eyes) which made it very difficult to do my deep inspiratory breathing as I couldn't breath through my nose! I think it was the combination of being naked and exposed from the waist up & having my arms fixed above me whilst several people were very close to my boobs, touching, measuring etc. I've never felt this at any of my other appointments or treatments - I was even fine in the MRI scanner. I have always been a very private person so I guess this is a major part of it. For the most part, I have been able to just get on with things each radiotherapy session since, and at least they are faster than the planning appointment. However, today after the RTs left the room they took much longer to start the machine & I was left lying there for what seemed like ages with no-one telling me what was going on. Then when it was finally all done & they came back in, one of them started giving me advice about my breathing and said that I seemed to be moving my back too much (although no-one had said this throughout the session). He did this all whilst not having told me they were finished so I was still lying there in that naked vulnerable position, then he finally took the breathing monitor off my chest so I could cover myself up. I apologised to him then as I was leaving I could hear him talking about me to his colleague and how he'd re-explained how I should breathe. So, to cut a long story short I've spent the afternoon being very emotional about the whole experience again.. annoyed that I still don't seem to be breathing correctly and feeling unable to shake the feeling of vulnerability even after all this time of exposing my breasts. I know I have so much to be grateful for - I'm so lucky to still have my own breasts, plus radiotherapy is one of the 'easier' treatments but I just cant wait till its all over, thankfully I'm nearly there.An Oncologist with Breast Cancer - what she has learned from her own treatment ....
Along with the 'must read' Liz O'Riordan's blog (she is a UK breast surgeon who had 2 bouts of Breast Cancer) who writes candidly about her own diagnosis, surgery, chemo, tabs & treatment overall .... http://liz.oriordan.co.uk/ Here is another good read - this time by an Oncologist who also has breast cancer & had chemo in the lead up to her surgery. Like Liz, she found that what she had been telling her patients with treatment was not really 'what happens' in reality. https://www.theguardian.com/healthcare-network/2018/jun/07/oncologist-breast-cancer-chemotherapy
So frustrated and anxious!!!
Hi BC sisters, sorry but please let me vent it out. I was originally diagnosed BC (between stage 2-3 right breast, had a mastectomy, chemo, and radio) 5 years ago, and 10 days ago I had an annual checkup. The sonographer (very nice girl) found a suspicious thing on my one of lymph nodes near my right side collar bone. She consulted the doctor at the imaging/pathology place and told me that I should be contacted by my oncologist to have biopsy. I waited a couple of days but no contact so I was getting a bit optimistic about it; however, I contacted my oncologist just in case. Turned out (I don't know what happened and who is responsible but), they somehow slipped away my case!!!! By the time I contacted the imaging/pathology company to book biopsy, they were all booked out so I have to travel further to have biopsy and wait another 10 days.... And my appointment with my oncologist now has to be delayed as well because the result from biopsy will not be on time. Total of 3 weeks I have to wait till I know what is actually going on!! I know that I live in a regional area (Tasmania) but still feel a bit neglected.... Now I am very anxious and angry. 😖 BC sisters, sorry for complaining but I am frustrated😫