Forum Discussion

HonuKaha26's avatar
HonuKaha26
Member
21 days ago

Newly Diagnosed

Hi everyone, I was diagnosed on the 12 May with Invasive ductal Carcinoma ER + PR+ and HER 2 negative.  I'm still getting my head  around the situation. I stopped all forms of hormone therapy,  for menopause when I was told about my diagnosis and am now experiencing more menopause symptoms, hot flushes, night sweats, lack of sleep,  and aching joints. 

I've met with the surgeon this week and have decided to have a lumpectomy. I'm now waiting on a surgery date. I've collected my hormone blocking medication Tamoxifen and am planning to start this weekend.

I'm worried about the side effects that I might experience and how it might affect my work as a disability support next week.

anxiety
invasive ductal carcinoma

6 Replies

  • Moomincorn's avatar
    Moomincorn
    Member
    20 days ago

    HonuKaha26​ I'm sorry to hear of your diagnosis. It can be really confusing trying to make sense of it all over the few first weeks and months.

    Have you met with a medical oncologist to receive your Tamoxifen prescription? I'm wondering because your steps are different to what I had. I had surgeries first, then radiation, then started Tamoxifen. 

    I have read that some types of medications have to be paused for surgery so if your surgery is soon (did it get classified as being required in 30 days?) then I myself would be double-checking with the medical team about the need to start Tamoxifen before surgery unless they've already given you reasons to start it. One of the potential side effects of Tamoxifen is blood clots. 

    No one can be sure of the side effects that each person will have or the extent of them. Tamoxifen can mimic menopausal symptoms and I would suggest discussing your current symptoms pre-Tamoxifen with your medical oncologist so that they can be monitored. There are options available if the side effects are too much.

    For me personally, the first week of Tamoxifen was fine, then I had about a month of many and intense side effects, then over the next month they eased off.   How long this lasts is anyone's guess but if they start getting worse then I'll speak to my medical oncologist again.

    This BCNA article might provide some more information for you: Side effects of hormone-blocking therapy

    Hopefully some other people will chime in, especially if they did begin Tamoxifen before surgery, to provide their experiences.

    All the best with your surgery.  

    • HonuKaha26's avatar
      HonuKaha26
      Member
      20 days ago

      Moomincorn​ Thank you for your information.  Yes, I met with the surgeon, and we discussed my treatment plan. The surgeon does want my surgery to happen within the next four weeks, but her surgerical list is currently fully booked, so she is now consulting with another surgeon colleague to confirm a date for my surgery.  As I want to have the surgery in the public hospital system.

       So because of having to wait for confirmation of a surgery date and my pathology results, we have decided to start the Tamoxifen medication now.  She has advised that if I have any issues to contact her.  

      I guess my concern is am I going to feeling sick/nausea during the day as I work with NDIS clients in the community everyday and don't have alot of leave due to only being with the company for a short time. 

      Thank you again for your support.

       

      • Moomincorn's avatar
        Moomincorn
        Member
        20 days ago

        HonuKaha26​ I’m glad to hear that there’s been discussion about starting the Tamoxifen (I am an over-worrier at times!).

        As for nausea or feeling sick, it’s one of those unknowns. I felt a little queasy a few times but whether that was Tamoxifen or something else was impossible to tell. I have a little box of salty crackers and nuts to nibble on at work which was sufficient to help me feel better. 

        If you do find you’re experiencing side effects I’ve heard it can help to change the time of day you take the medication. 

  • Dijana's avatar
    Dijana
    Member
    17 days ago

    Hi HonuKaha26​ 

    I had stage 1 ER and PR + invasive cancer and DCIS in my left breast. I chose double mastectomy and started Tamoxifen in February. I was on HRT patches and ovestin vaginal cream which I had to stop when I was diagnosed. I have had no side effects of Tamoxifen. I am now taking Vagifem vaginal pessaries. My life is back to normal. I know I am lucky but it might be like that for you too. PS I also work in disability.

  • HonuKaha26's avatar
    HonuKaha26
    Member
    17 days ago

    Hi Dijana

    Thank you, I'm glad to hear your life is back to normal and you had no side effects.  I hope that I'm lucky like you.  I decided to take the medication in the evening and so far I'm doing ok and haven't had any nausea .

  • madamcaptain76's avatar
    madamcaptain76
    Member
    16 days ago

    I was just diagnosed last Thursday. I went for a routine mammogram at the end of April (my first one) and I was called back for further tests which was last Tuesday. I had another mammogram where an abnormality was detected in my left breast so I needed a punch needle biopsy and an ultrasound. Then I got the results on Thursday and I was totally shocked when I found out I had breast cancer. Luckily it was caught early. I saw a breast surgeon yesterday and I  found out I've got a hormone receptor-positive breast cancer. Grade 2 cancer and stage 1. I'm booked in for surgery next week for a lumpectomy and some lymph nodes will be removed. Then 4 weeks of radiation treatment after that. Hopefully I won't need chemo because there's no signs of the cancer spreading to my lymph nodes but I won't know for sure until after surgery. 

    I'm still trying to come to terms with having breast cancer. I  never thought it would ever happen to me. I have a good support network of family and friends as well as an amazing partner who has been so supportive too. I don't think I could have coped without him! I'm a bit more settled now that a plan is in place for the next step of treatment and I know I've got a journey ahead of me. I'm planning on seeing the doctor to set up a mental health plan and to seek out professional counselling. I also want to join a support group for people with breast cancer which I'm in the process of arranging.