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Tamoxifen

mulberrys
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I just wondered if anybody else has experienced this I had BC just over 5 years ago and have been taking Tamoxifen for all this time.  Unfortunately my cancer  has come back and was told to come straight off of tamoxifen as clearly did not work for me ! Because of the cancer returning I had to have scans to check of cancer had spread resulting in ultra sound scan as cysts has shown up on my overies luckily they were benign but hadent realised that this is another side effect of Tamoxifen ! I am not sure what they are going to put me in next as was on Letrozole before but had to come off as affected my bones ! Very confused at the moment x

 

  • Hi again mulberrys,

    I'm sorry you hadn't received a reply to either of your posts. Again, do discuss any questions you have specifically about your treatment with your doctor.

    Otherwise, hopefully if there are any others here with similar experience then they'll be along soon.

    I hope you're able to find out more soon - wishing you all the best,

    Ben
    Cancer Chat Moderator

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    Hi Mulberrys,

    Welcome to our forum, although I'm so sorry to hear about your recurrence.

    I have had 2 bouts of breast cancer too, but mine came back within just a year. Eleven years ago I had a lumpectomy followed by Tamoxifen. A year later I found another lump in the same breast and had a double mastectomy followed by Letrozole for 6 years. Like you, I was told to stop the Tamoxifen immediately, as it hadn't worked for me.

    I did have a lot of joint problems with Letrozole and ended up having to get both knees replaced. I stopped taking Letrozole in July 2017, but I am still here, which for me is testament to its' effectiveness.

    All treatments carry similar side-effects, but some people seem to sail through better on one drug than another. I do hope that you can find a compromise.

    It is great news that your cysts are benign - that must be a tremendous relief. Is this the return of the original cancer or is it a new cancer?

    Do please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Hi Jolamine thank you for your reply.  It's so difficult making decisions about what to do I actually thought my Consultant would suggest a mastectomy but he said that he could do the lumpectomy as the tumour was small 16 mm even though in same breast.  Was it your decision to choose double mastectomy? Of course now waiting for results and praying now no more surgery as this

    would then make me think should have gone for mastectomy in the first place ! Anyway my decision was made it will then be the oncologist decision about chemo I know radiotherapy for 3 weeks not sure if chemo is something they would always do as a second time.  Sorry to ramble on just it was such a shock after the 5 years clear after being checked only 6 months before.  I am glad you are now doing so well

    as I am sure must have been a horrendous time for you. 

    it was a new cancer in top of breast.

    Maryx 

  • Offline in reply to mulberrys

     

    Hi Mary,

    I had also discovered a large lump in my left breast which turned out to be clear. However, my first surgeon refused to test this lump, so I refused to have radiotherapy as advised. I felt that there was no point in treating one breast whilst ignoring the other. As a result of my stance, we had a Mexican standoff for 11 months, until he referred me to see the surgeon in charge of surgeons in this area. This gentleman was so different. He felt my lump and immediately sent me for a mammogram, ultrasound and biopsy. By this time I had lost all faith in my original surgeon, so when the second consultant offered to take over my care I jumped at the opportunity, even though it is much further for me to travel.

    When my third lump was diagnosed as cancer, I wanted to ensure that I took everything away. That first year was just horrendous and, I didn't want a repeat of it. I asked my new surgeon whether or not he would advise a double mastectomy and he agreed immediately.

    Is your second cancer the same type as the original one and, have they told you what grade it is? I also have cysts on my ovary, but this has never troubled me.

    Kind regards,

    Jolamine xx

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