Benign then malignant

busterbuster Member Posts: 10
Hi all. My story is a little different. I went for a mamogram just to do the right thing. I am 52yrs. I had a mamogram and ultrasound and the radiologist reported very specifically carcinoma and was so sure came in straight after ultrasound and told me to go to gp the next day. I did she sent me for ultrasound biopsy which came back benign. I went to a surgeon who was not happy with strong mixed findings who sought another opinion from a top radiologist. I was then sent for tomography mamogram  (3d) and stereotactic biopsy ($1400) and had another 9 samples taken. Came back benign but really really odd and suspicious but still benign. Had surgery two weeks ago all low grade cancer. Had two tumours out. One cancerous one benign but nasty. I thought i was having the lump out which I could not feel and that was the end. Nope! Went to oncologist monday who said I need to go on hormone therapy as it was estrogen positive and go to another radio oncologist to start radiation. I feel like I have already been through the mill with so many tests. Now I read about the side effects of drugs and I dont like what I am in for. It has all come as a bit of a shock. As i was on hrt for 7 years and came off my menopause status is not known until I get blood tests results tonight. Just thought I would share as I am in this kinda void. People say your ok its out but to me that is only the start. I went in thinking it was benign to begin with now i have all this ahead of me. Its alot to take in emotionally. The support with my journey kit and bra and pillow etc has been amazing but never in my wildest dreams thought I would need any of it. So wrong! Thanks rant over xx

Comments

  • AfraserAfraser MelbourneMember Posts: 988
    Glad that you feel supported, of course it's a shock. But it sounds like your medical team have been thorough and are taking the right actions. Reactions to drugs and treatment vary a lot, and it's hard to know how you will react until you start. Main thing is to ask questions (if you have someone to be with you in appointments and take notes, it's a help), try and take one step at a time as your imagination may take you places you may never need to go, and remember lots of us get through this. Very best wishes. 
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,174
    Hi @buster1 what a shock to be told one thing then another... Like Afraser said you sound like your team is very thorough which is a great thing .... Hate to imagine if they were not!!

    Do you have a breast Care Nurse 
    https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx

    I was 52 when diagnosed and I had bilateral mastectomy and chemo and rads and I am here NED (no evidence of Disease) 5 years later. 

    Take a breathe and relax tonight they have the phone in line open until 9pm if you feel you need to chat to someone ...

    A reminder that the BCNA helpline is available this evening until 9 pm. We have a Cancer Nurse and Member services officer available to take your calls until 9 pm tonight EDST.  If you have any questions or concerns please don't hesitate to call us.  
    Our helpline provides free, confidential information, support and referral as required. Helpline hours are Monday, Wednesday & Friday 9.00 am to 5.00 pm and Tuesday & Thursday 9.00 am to 9.00 pm EDST.

    Sorry you have need to join us but we are a really supportive bunch who get it.... 

    SoldierCrab

  • primekprimek Broken HillMember Posts: 3,308
    What a difficult time you've had and keep getting surprises.
    But amongst that is some fantastic news.
    Slow growing cancer not requiring chemo.  :)
    Lumpectomy and radiotherapy...not fabulous but standard care.
    Hormone supressant...1 pill a day...easy peasy.  Yes it can have side effects but it doesn't mean it will.

    So a shock yes to now be told it's cancer.  But how fantastic you had it out and not left it.

    Its okay to feel overwhelmed and have tears. It's scary. Let the tears and fears flow. We are here to help as we can. 
    Kath x

  • melclaritymelclarity Member Posts: 2,465
    @buster1 im so sorry to hear your story. I went through similar in 2011 my 1st diagnosis. Mammo and ultrasound were suspicious,  biopsy benign...then lumpectomy and dcis radiation and tamoxifen for 4 years. I have always found biopsies an absolute waste of time. They are never correct and half the time they dont get the spot. Only definitive pathology is from a lumpectomy.  Its taken me 6yrs and 2 diagnosis biopsies,  lumpectomies, radiation then 4yrs later chemo and Aromasin now as tamoxifen didnt work and doesn't in third of cases. I know what i will and wont do now but only through the experience.  

    Hang in there it will get better. Hugs Melinda 
  • busterbuster Member Posts: 10
    Hi ladies. Thank you for all your help. Excellent advise all @melclarity what is aromasin? Is that a post menopause drug. My bloods came back and I am slap bang in the middle of menopause so onc is going to put me on Letrozole. Is that the same? I had a look at the side effects yucky! I skipped side effects with menopause because I was on HRT. Loved it! I asked the surgeon was the cancer caused by me taking HRT for 7 years and the pathology came back No! Lucky otherwise I would be blaming myself for the cancer. Like everyone else just unlucky. So next week radiation!
  • busterbuster Member Posts: 10
    Sorry @melclarity I looked it up (could have in the first place) idiot me! Yes it is the same as Letrozole just a different brand. How long have you been on it? Do you have side effects? I am border line with taking hormone therapy. He said if I didnt take it chances are it will come back. If I did take I have a 25% of it coming back. I want to be covered after radiation but if the side effects are debilitating I may rethink. I start it in Jan.
  • melclaritymelclarity Member Posts: 2,465
    @buster yes unfortunately chemo threw me into a violent unnatural menopause LOL, literally came on in the middle of infusions...have learnt to live with it. Ohhh thats good news about the HRT and honestly, there's no blame to be at all. It has zero to do with anything, and I mean anything, diet, alcohol, exercise none of it...there are no common denominators in any of it. Theyve said they are minority studies in all areas....none of it caused it. I had none of these"denominators" and I got it twice" as do so many others that live healthy lives.

    I was on Tamoxifen 4yrs then 2nd diagnosis threw me into menopause and was put on Arimidex, the side effects were difficult on that, so he trialed me off it for 6 weeks and I kept a diary. I went back on it at the end, but the reality was I was not in pain when I was off it. So he switched me to Aromasin about April I think, so 8 months now, I saw him the other day. Actually find it just the same as Arimidex but learnt to put up with it, as my Surgeon said taking it reduces my risk by about 50% so no contest LOL. The side effects are annoying, I wouldn't say it stops me doing anything really. I'm just slower and achier, cannot run and walking, exercise is difficult but I can manage to do a little.

    After having a recurrence and having done all the right things, radiation and tamoxifen for 4yrs and it still came back...I think is why I choose to stay on it because in all honesty I dont trust without it as Tamoxifen stops working in 1/3 of cases. I'm also on Prolia injections due to bad bone density again from chemo, but it gives an added protection believe it or not for Breast Cancer. Odd LOL. 

    Melinda xo
  • busterbuster Member Posts: 10
    @melclarity what hell. Have you tried high doses of magnesium for the aches? You can even have an uptake of magnesium from soaking your feet or bathing in radox or epsom salts as it is taken in via the skin. I am going back on mega magnesium from ethical nutrients as I dance and it stopped my aching legs and this one is powerful. I have researched it alot and some cancer patients also swear by it. Anything natural to stop the joint pain. Thanks for your advice. It gives me more clarity xx Jill
  • melclaritymelclarity Member Posts: 2,465
    @buster LOL yes I've been on magnesium for nearly 2 years :D I take it powdered in water daily, I also have magnesium spray. Magnesium is the No. 1 that everyone should be taking as it services over 300 enzymes in the body at a cell level, and so rejuvenates from there up. It helps alot but doesnt combat the bone aches ive been left with from neuropathy in my feet, or the entire feet pain which is in line with all of these medications unfortunately. 

    I use Bioceuticals Ultra Muscleze Energy - it has alot of different ingredients but was the closest I could find that matched the one I got originally at the naturopath and cheaper. :)


    x Melinda
  • busterbuster Member Posts: 10
    Omg how similar! You are the closest in breast cancer to mine too however you have gone a couple of years ahead of me. I would have been devistated if I was on tamoxifen only to find out it returned it returned and had to have chemo. You have done so well. I know you just have to soldier on but bloody hell! Also I was thinking  you were like going on a drip to bring on labour BAM going into menopause which would not have been pleasant rather than slowly slowly getting used to it but I cheated that and took HRT lol the things we do to keep sane!
  • melclaritymelclarity Member Posts: 2,465
    Hahaha! ohhh don't know how I'm laughing but thank goodness I really am now, its all a memory. I dont know how I did it either it was a very dark time in my life. Oh forgot to mention that I put on 6kg through Chemo and thanks to menopause and meds I still got it...hahahaha and laugh oh laugh I must because nothing works to shift it. Its the one remnant of the whole thing that shits me really ha! Yes I was induced with my first so I know how BAM it goes haha!! You will get through it all and give the pills a go theyre annoying more than anything. Always come here for a chat, so many lovely ladies with so much experience and support. Just ask anything and always an answer of sorts lol.

    Hugs Melinda xo
  • busterbuster Member Posts: 10
    And so radiation begins. I am hoping that as I have a break xmas day and boxing day it will give me a 4 day break as the weekend is before hence help any side effects. 
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