How can I cope with Tamoxifen for another 4 years?

Hello, can anybody help me? 

I was diagnosed in January 2020 with stage 2 invasive mixed ductal and lobular breast cancer in my right breast, following a lumpectomy and lymph node removal back in February 2020 and Radiotherapy in April 2020, I commenced taking Tamoxifen in May.  I thought I was doing okay and coping with the hot flushes and odd headache now and then which wasn't too bad and learning to carry a hand held fan around helped, however over the last 2-3 weeks, the hot flushes are getting worse! throughout the day and night I get them and I feel like I’m going to explode like a volcano with red hot hands, feet, face and boiling inside and with broken sleep now every night and a banging headache every morning it’s starting to get me down and I have no idea who to turn to? My local GP seems uninterested, I never hear from anybody at the breast clinic (and too be honest never did throughout my treatments which was surprising after seeing adverts saying how much people care and support you) and the last checkup telephone call I received from an oncologist was in September after my radiotherapy treatment finished in May.  I work full time and start the day dragging myself to the shower at 6am with blurred vision and head banging and if I’m lucky by 4pm my head starts to ease but if I’m unlucky (most days now) by 4pm I am falling asleep and feel dizzy and dog tired. Is this really my life for the next 4 years?

  • Hi there ..

    That's really rough and not to have back up is extra hard .. then this lock down .. it's all a bit overwhelming... all I can say is personal to me, and everyone has to make their own decisions... 

    I did it for nearly two years... till life got so tough with aches and pains on top of my arthritis etc ... I had no life ... so did my homework .. the percentage of non reacurance from tamoxifen l was told was really low ... I was told about 3% ... on weighing everything up ... I chose to stop it, slowly over a few weeks .

    Personally for me, it was the right decision ... and slowly got back to my old "normal aches and pains" that I could manage ...

    But others have minimal side effects ... so ask questions ... weigh this up .. and whatever you decide .. it's your choice... don't look back ... and know what you do, is right for you ... Chrissie...

  • Hello w31end,

                         the reality is that cancer carries the label of enemy,and chemo lays claim to be being friend,but as such comes with harsh effects.As Chriss points out,it is a difficult personal choice to carry the treatment on,and there are not really any other options.in my case continuation dictated my life for a good number of years and destroyed or permanently damaged several of my bodies functions,but l am here today leading a very full life coping well with the impositions,which l am sure would not have been the case without chemo/radio.l am now reaping the gains after having put my life on hold for five years.The term rock and a hard place is well suited for what is an unyielding situation.l think you should contact your medical team should you lean toward cessation,and evaluate their response before any final decision,and then as Chriss points out remember going forward that no decision will or ever has been taken with hindsight.

                                                                                  good luck with your struggles,its not easy,

                                                                                                                                                  David

                                                   

                                   

  • Hi Chriss,

     

    Thank you for taking the time to respond, it's truly a minefield trying to decide whether to carry on or stop isn't it. I was hoping that something would be available to counter the effects and reduce them however the more I research today the more it's appears it's put up with it or gamble without it.

     

    It sounds like you have made a good decision for yourself and I'm so torn as I feel that I have to keep taking it for my family and my Son so they know I am not giving up but it's not really a case of giving up is it either! What a mess it feels right now. I'm 47 with a 20 year old Son. 
     

    I will definitely take your advice and do more homework - thank you so much and please stay safe and well xx

  • Hi Gruntifen,

     

    Thank you for your response. It's great to hear that I'm not going crazy with what I'm experiencing and I have a lot of thinking to do.

     

    While recovering at home I can cope with the side effects, however being back at work now is truly painstaking with early mornings, 2 hour commutes and late evenings all on top of no sleep, but please don't misunderstand me, I am so very grateful to be alive and that's what keeps me drudging along at the minute.  
     

    I will try again to contact somebody from the team I first met and see if I can get some clear guidance but I now realise the choice will be mine to make and what a choice! 
     

    Stay safe and well xx