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Treatment for my breast cancer

I will begin my treatment if no cancer is found in the lymphs I am estrogen neg and am talking drugs to shrink the tumour Any one on this journey too Side effects please


  • [Deleted User][Deleted User] Posts: 53
    edited November 2018
    Welcome to the forum @annettester - thanks for joining us! 

    @Barbara, @JaneyB, @scribbler @Sunshinedaff
     Hope you don't mind me tagging you ladies, but you mentioned in the welcome thread that you've had experience with breast cancer - do you have any advice for someone around the start of treatment?

  • JaneyBJaneyB Posts: 8
    In 2010 I had a double mastectomy, chemo, herceptin and 10 years of tamoxifen. Regarding treatment you just have to go with the flow. On days between chemo when you feel bone weary, just sign up to Netflix and watch trashy movies and don’t feel guilty. Also losing your hair, which could be a possibility, is no big deal. It’s a shock at first but it doesn’t stop you going to the movies, having a nice meal with friends etc.  Other possible side effects such as sore mouth and feeling nausea  do.  The  herceptin had no side effects and the tamoxifen is bearable but does give most of us joint pain and hot flushes. One thing I wished I’d asked for earlier was a PIC line to stop them having to find a vein each chemo. I have very small veins and in the end I had one fitted because I had to have Herceptin infusions very three weeks for a year . I did have six months off work during chemo because I work with children and it was important that I avoided germs. Please ask if there’s anything specific you want to know.
    It is gruelling but you get through it. Xxx
  • BarbaraBarbara Posts: 9 ✭✭
    I personally don’t have experience myself with breast cancer but one of my girlfriends did, I looked after her for a short while unfortunately she passed away because in my opinion she did not listen to her Oncologists, and thought there was a better treatment either abroad or with a different surgeon.Having survived a very aggressive anal cancer, I did exactly what my Oncologist told me to do.
    i don’t think it goes down well with Oncologist if you don’t trust him.
    i had wonderful care had to fight myself but never gave up, as you can well imagine anal cancer is a horrible cancer to have. I am sure you know this but when you start with one oncologist you should if possible follow it through.
    i saw my girl friend run from one oncologist to another.
    Then she went to Germany, sadly it did not help but she survived thankfully ten years after being diagnosed. I wish she would of stayed with her first oncologist and she might very well been here today.  Breast cancer is very treatable today, 
    i know several people who were diagnosed and  sailed  through the treatments!! It’s like any Cancer tough but you will get through I promise 
    😊😊😊xx I went through everything hair loss sickness depression, but came out the other end, positive, friends to help and family it’s so good to chat at these times. Music Netflix etc........nature, please stay positive it works😘

  • SunshinedaffSunshinedaff Posts: 1,254 ✭✭✭✭✭
     Hi @annettester, I was diagnosed in 2015, I think the main thing is listen to your oncologist and the cancer nurses. They know what they are talking about. Hopefully you have a good team where you are. My GP said to me, go with the flow, it will be a whirlwind and it was. There is so much to take in. You didnt mention what the first treatment is, possibly chemo, so I will talk about that. You will likely have a few meetings with cancer nursing team, who will assess you if you are having chemo, for how your veins look, if necessary, they will put a picc line in, which is what I had. They will also go through possible side effects, depends on which drugs you have. They will check your bloods before each round. For me the worst thought was being sick, it terrified me, but I wasn't sick once, I took all the anti sickness drugs I could and they worked. You may have headaches, tell them because you have to be careful what you take. Constipation! Can be very painful. They can give you meds for that too! But also diaorreah!  Steroids! Ahgh would cry my eyes out before taking them! I really struggled with them. Your taste buds will do a runner.. just eat whatever you can tolerate. Try and keep fluids up, I really struggled again with this, to find something I could stomach having. It's trial and error really. My hair started to fall out two weeks into first round of chemo. Chunks! Not little bits like when you brush your hair, but handfuls. And it was very painful. I very quickly decided to shave it all off. Bobble hats and scarves. It was winter so I had great fun with Xmas hats. I wore them to hospital every time. 
    The cancer I had didn't reveal itself in mammograms or ultrasounds, it was only when they found it in my lymph nodes they knew it was there, just had to find it! I was started immediately on chemo, while at the same time having MRIs and CT scans and more ultrasound's until they found it. I thought I would lose weight on chemo  (must be a silver lining somewhere in this), but no..the opposite!! Haha. Seriously awful bone ache...cannot tell you how bad! Just take the pain meds they let you have. Depressions, worry and fear especially in the middle of the night. I didn't have Netflix etc, so Downton Abbey was a godsend, and any other dvd"s/ TV I could find. Anything that took my mind off stuff. I stopped work because I used to work with children and the risk of picking up infections was very high. This is just some info, hope it helps a little. I went on to have surgery and radiotherapy, so if this is planned for you, can chat further down the road. I know all of this sounds horrendous, but just take one day at a time, they soon add up, before you know it you will be out through the other side of this. Feel free to just come and shout HELP anytime, I am sure there will be many on here who will also be here to support you. 
  • SunshinedaffSunshinedaff Posts: 1,254 ✭✭✭✭✭
    emilyrose said:
    Welcome to the forum @annettester - thanks for joining us! 

    @Barbara, @JaneyB, @scribbler @Sunshinedaff
     Hope you don't mind me tagging you ladies, but you mentioned in the welcome thread that you've had experience with breast cancer - do you have any advice for someone around the start of treatment?

    Hi @annettester, sorry I mis-read your msg! Ignore everything I said about chemo, if that's not what you are having. The only drugs I have had are Tamoxifen and Letrozole after treatment. 
  • scribblerscribbler Posts: 6
    Hi @annettester!
    For one of my treatments they delayed surgery and the hormone therapy I was on (zoladex and anastrozole) did make one of the tumours disappear. I then had a WLE to get rid of the other tumour, followed by radiotherapy. Have never been on oestrogen-neg drugs, so can't advise on that, I am afraid. What I would advise is to get a second and even third opinion if you are not confident about what is being proposed. At various times I was told I was having a radical resection, chemo, etc, but I didn't have those in the end, as I found a surgeon I was confident in and she proposed less radical options. Gather as much info as you can and if you have others to go with you, ask their opinions, too, so that you feel comfortable with everything being said, as it can be overwhelming. Wishing you all the best.
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