SUFFERING STOPPING HORMONE TREATMENT FOR MENOPAUSE

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  • JJM
    JJM Member Posts: 7
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    @iserbrown I can't believe that none of the doctors who've seen me have ever mentioned that dense breast tissue means that there's an increased risk of breast cancer. Even if they hadn't suggested additional testing, I would've looked into it myself if I'd known. I thought that I was relatively safe because I'd breastfed my twins for a year (and was told this would lower my chances of getting BC), plus I've been getting annual screening.
  • JJM
    JJM Member Posts: 7
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    @JodieMaree I thought that I'd sent a message back to you, but I don't see it posted, so maybe I didn't do it right. HSC boy finishes Monday. Other one (who doesn't know about BC), finishes November 9 as he is doing the International Baccalaureate. My surgery is November 7 (Melbourne Cup Day - eek). A friend will take my IB boy from Nov 7-9 and I'll say that I need to be with my Mum for a couple of days. On a positive note, my twins turn 18 on Wednesday. :-) I hope that your daughter went well in her exams! 
  • arpie
    arpie Member Posts: 7,667
    edited October 2023
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    @JodieMaree .... just put '@' in front of the name you want to tag (no spaes) - Sometimes it may bring up a few to choose from .... Make sure you choose the 'right name' ads there are lots of 'very similar' names .... ;) 

    That's great the pressure has been taken off you now your family knows - the pressure of 'not telling' is debilitating.  Then again, I told my nearest & dearest - I didn't even tell extended family members until 12 months later ...  I also set up an email 'update' that went out every 2 weeks, so I didn't have to keep repeating the story.

    Some people do a private Facebook Page & only invite those they want, on it .... or set up a 'blog' online, for updates.

    take care & all the best xx

  • Cindi
    Cindi Member Posts: 134
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    Oh JJM, I ALSO have dense breasts and had NO idea that that makes you more likely to get breast cancer, that's so unfair, why on earth don't doctors know of this and warn their patients like us, especially when my doctor knew I'd been on HRT for ages.

    I also breast fed my son for a long time, in fact 2 years, but obviously this made no difference.

    All they have to do is give us ultra sounds as well, AND WARN US!! so we don't have HRT .
    it's really wrong isn't it  :(
  • marg16
    marg16 Member Posts: 7
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    @JodieMaree it's hard telling those closest to you and watch them go through that shock "process". However it can be a relief too. I'm weaning myself off my HRT and will go on non hormone treatment. For me it was not the night sweats but the lack of sleep, tears and sadness that took over. Keep in touch with your GP as to how you are feeling and coping. All the best 🙂
  • Locksley
    Locksley Member Posts: 938
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    @JodieMaree @JJM sorry to see you both here in the club no_one wants to join.   I'm 3 years down the road from active treatment.    I was also on hrt for menopause for a couple of years.  My symptoms were really bad.  I was dripping in perspiration.  I showered 3 times a day.  I couldn't stop crying and said to gp I can't function like this.  I work.   

    Hrt solved these issues.   Was taken off them after 2 years and then along the way diagnosed with bc.  I said to the surgeon did I do this to myself.  He said we can never know but thats in the past so we move forward.   He said to me if you weren't on hrt what would your quality of life been like for the last 2 years.  I replied shit so I moved forward in my brain and did all the treatment they suggested.

    Wish you both well.   Lots if ladies here have wonderful knowledge they share.  
  • JodieMaree
    JodieMaree Member Posts: 14
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    @JJM I have no idea what I am doing on here lol. Hope your boys do well on their exams as well. Daughter is quietly optimistic as there were no “oh no, I didn’t study this” moments. All the best for your surgery. Will be thinking of you. 

    @marg16 It was heartbreaking watching the shock on the kids faces. They are being very positive which is good. The hormone replacement made a world of difference to me, happier all round, less irritable, no hot flushes, no night sweats, felt like my old self again. Went back to the doctor and have been put on a mild antidepressant (which was offered as well as well as hormone replacement) wasn’t keen to take an antidepressant if I wasn’t depressed, but it’s on par with the hormone treatment as far stopping all the menopause symptoms and it’s only been a week so far. First few days were a struggle, but good now. 

    @Locksley I really wish this club that no one want to join didn’t need to exist. I’ve been told the tumour would have been there before I started hrt five months ago, but I had the same thought “have I made it worse?”  As you said, it’s in the past, we need to move forward. 

    Thank you everyone for all the advice. Much appreciated 🥰
  • marg16
    marg16 Member Posts: 7
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    Thanks @JodieMaree 🙂
    It is hard telling family and helping them deal with or accept the diagnosis. Only told family and a couple of close friends at this stage and obviously work.  That is great advice about the antidepressant.  I'm going to see surgeon this week for post mastectomy appointment and see what that brings and will ask about non hormone menopause treatment. 
    I did find the Charlotte episode I webinar that was suggested very helpful and I also have a daily journal to record how I'm feeling. It helps get it all out of my head. 😀
    Got dressed today with drain bag, got partner to put up my hair , put some make up on and went for a coffee, felt a bit more normal 😀
  • Cindi
    Cindi Member Posts: 134
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    Hi,
    Just wondering if restless leg syndrome is a part of menopause symptoms? anyone had this along with the horrible hot flushes?
    Thanks
  • JodieMaree
    JodieMaree Member Posts: 14
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    UPDATE

    Hello. Surgery was a month ago now. Everything went well, surgeon removed tumour and one lymph node which showed no trace of cancer. Unfortunately at the one week checkup I was advised that pathology found cancer cells in the node and on the outside of the node. Radiology commences next week which will be targeting the whole side of my chest and underarm. 

    Back working part time instead of full time this past week. Physically I feel fine, numbness under my arm and alongside my ribcage from nerve damage which just feels weird (unless I do some weeding like I did today and then it hurts) and shooting pains in my nipple started this week. What’s the go with that? Mentally I’m just burnt out and exhausted. I was alternating between tears and anger today and I just don’t even want to think about Christmas, which is my favourite time of the year. 

    Anyone know how to make the font size larger on an iPad? Hope my spelling is okay as I can hardly see this to read it 😂 
  • arpie
    arpie Member Posts: 7,667
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    Bummer @JodieMaree - so sorry to hear it was in one node ....  hopefully, your radiation will mop up any of the randoms xx.  Keep an eye on the colour of your skin after rads .... let your Rads team know if there is anything concerning you, specially if the skin blisters or 'breaks down'.  Keep the moisturisers up to it after each treatment.  

    5 years later & my underarm is still a tad numb ..... the shooting pains around your nipple are quiet normal - I had that too.  But my nipple was actually 'removed' and the surgery done 'thru the hole' before sewing it back on again ..... it is probably just nerve endings trying to 'reconnect' again ... and may take a while to do so xx

    Is your iPad an Apple or an Android?  If it is an Apple - just hold down the 'Control' Key and then hit the '+' key and it should increase the size of the font.  

    Alternating between tears & anger is totally normal reactions to what you are going thru xx   Give our Helpline a bell tomorrow on 1800500258 and chat with someone - I really believe it will help you understand what is going on - both physically and mentally xx

    I hope you can get some of that Xmas Spirit back - difficult tho it may seem just now 

    take care xx
  • Blossom1961
    Blossom1961 Member Posts: 2,394
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    ipad - put two fingers on it and stretch them away from each other whilst touching screen. I do this all the time by accident and end up with a huge font.

    Shooting pains - I had these in my arm from damaged nerves. Massage helps a bit and heat pads.

    Start singing carols and dancing around. It will bring that Christmas joy back and help you put the awfulness aside.

    Sending big hugs
  • JodieMaree
    JodieMaree Member Posts: 14
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    @arpie and @Blossom1961 Thank you for your kind words. I’ve already started moisturing, hoping for my skin to be in the best condition before starting radiation. Having a rest day today as I just can’t concentrate and would only be thinking on Tuesday when I’m back in the office “where is xyz? “Why did I do that?”l I’ve spent the morning in the garden pottering around. Feel a bit better now and about to have a cup of tea and watch some Christmas movies. 
  • cactusk
    cactusk Member Posts: 58
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    @JodieMaree hello,
    just read this thread. I too stopped my HRT upon hearing my diagnosis - and boy, the peri menopausal symptoms have returned!
     My GP, at the suggestion of my radio oncologist, is looking to refer me to a menopause clinic at the same hospital that I’m having treatment at. I’m hoping they can do something.
    my surgery is almost 3 weeks ago now- I had 2 nodes removed & both were cancerous, I’m waiting to hear back from the US to see if chemo will happen , otherwise I’ll start radio early in the New year.
    i’ve taken notes from this thread & will ask my doctors - every time I read a different page here I find out something that can potentially help. It makes me just that little bit stronger knowing there’s somewhere i can share & learn & know what I’m feeling is what others feel too.
    absolute best of luck for your radio therapy 
    kelly