Ready for a mammoth read???? This is going to be a hard one to post. But my husband is pleading with to seek help and talk to someone. He described me as angry. And I am. I was diagnosed with hormone related DCIS in July of this year. On the one hand it feels pathetic being angry and upset as it's almost like it's not really cancer. On the other hand I'm so upset and angry and feel it could all have been preventable. There is a family history of early menopause. (Gran 35, mum 39, me and my sister about 35/36). My gran had BC in her 70s. My mum was on HRT for 20 years and was diagnosed with breast cancer about 13 years ago (late 50s)and underwent a double mastectomy. Her consultant told her (off the record of course) that it was the HRT and for me & my sister to NEVER take it. So 10 years after battling menopausal symptoms I plead with my GP for help as nothing was working anymore. I was referred to a specialist menopause clinic. They assured me again and again that they were the professionals and HRT was fine for me. A few months later after my annual mammogram I'm called back for another. Then a biopsy. Then surgery. Following surgery it was confirmed I had DCIS. Not at any point did anyone state it was hormone related. I had another surgery. More was found. Still not told. Only when I was being discharged to the oncologist and they mentioned tamoxifen that I mentioned my prescription charges are going to be huge. They asked why. I reminded them of my HRT and then panic set in. Remove immediately!!! So I've had my radiotherapy treatments. But all I can think is I could have it in my other breast cos I carried on taking it long after I should be stopped. Angry thst I shouldn't have been on HRT in the first place. Annoyed with the lack of support from my employers. Lost all self worth. Zero confidence. Avoiding family and friends.
Hi Nic1972 welcome to the forum and so glad that you have reached out. I hope it helped to get that out and into print sometimes that can be quite healing in a strange sort of way.
Is this hormone related because it sounds like it isnt but that might just be the way I am reading your post?
Like you I went into an early menopause at 40 and got breast Cancer at 59 but had never had HRT work that one out? It seems to be such a random thing and as far as I know the jury is out on the links to HRT and Breast Cancer although if there is any question about Hormone related breast Cancer then any oestrogen products are a big no no.
I was on vaginal Oestrogen before my diagnosis and had to stop that immediately as mine was hormone receptive but OMG how I have suffered since then. However thats another story.
Its ok to feel angry and shout at the world and why not, but will it take away what has happened or not ? Thats maybe the question to ask because all that anger is taking energy away from you recovering and getting past this beast and not letting the Cancer win.
Please keep in touch and shout and scream as much as you like thats what we are here for and we are with you every step of the way.
Meantime Im sending some huge big hugs your way for now. xxxxx
What is a Community Champion?
Yes it is hormone related. That is a big reason for my anger as I feel I wouldn't be in the position I am if I had not been patronized into taking HRT. It's messing with people's health. And to then not to be told to stop taking it as soon as it was diagnosed! I'm terrified it's in my other breast - that it will have had time to develop whilst all the focus and attention was on getting removed from my other one.
I'm just not the confident, fun person I was before all this. I'm just so introverted, unsure, anxious and defensive now.
Hi Nic1972 I get where you are coming from and certainly judging by all that is available now re this ,then yes I agree that it should probably have been stopped at the time of diagnosis which is usually what happens as far as I am aware.
I also accept that this is how this has left you feeling and little wonder given what you are saying.
Im wondering if you feel that maybe you should raise a complaint/concern about this or not?
Im not sure what to say except that we are here for you and anytime that you want to talk if it helps we are here to listen.
Sending more hugs your way. xxxxx
it's okay to be angry
and it is good to get it off your chest, no pun intended and all that but your husband is right in that you need a vent for all your frustration and it shouldn't have to be him, and that's good, that's him being considerate. He clearly wants to support you and feels he can't be the good cop and the bad cop.
We're here for you, we've had our panic moments and our sad moments and our dark depressing moments, it's a grieving process.
I was in denial for weeks. I just didn't believe it could happen to me. Then the shock, which was weird because it was delayed. Then the sadness and remorse. Then the anger. I was so incredibly angry, especially at one of the nurses who told me I wasn't an 'urgent' case because I 'only' had DCIS. I 'only' needed a mastectomy ... and everyone was smiling when they told me, talk about head ****.
Then the post surgery showed the more sinister Her2+++ and it was back to the glum faces and the tilted heads. Fast track to staging scans which thankfully showed no spread.
People say it's like a roller coaster, for me it was a vertical drop.
My first routine mammogram in 2015 was reported as 'clear' but I felt unwell, and continued to pester my GP but since all the tests I'd had showed nothing he ushered me away, to contemplate the menopause and all its lovely symptoms as my new 'normal'
So I booked a private screen and voila there it was.
Of course i'm angry, who wouldn't be, I've been let down by a system that caters to the masses not the individual .
shout, rant, rave
and actually I'm still here, and now I have rediscovered a bit of my former 'fun' self.
I should be able to post a pic of me on the beach in Faliraki ...
although I'm not sure how to do that post this upgrade ...
real life success stories to remind you that people do survive breast cancer
God I think I would've completely flipped my lid if that happened to me. Jesus.
Nic, I recognise that despairing anger. I too took HRT as sat dripping like a tap in important meetings (I was a headteacher at the time) was not a good look. And boy did it improve my life. No dripping tap and SLEEP. I went through peri menopause and menopause. The bleeping lot. But HRT was my saviour.
Fast forward 2015 my first brush with DCIS and I said NO to RT. So guess what I am here again and 3 ops, chemo and RT done. With an all clear
If I look back at HRT and refusing RT the only person I hurt is me. I shout at me. Cry at me. Berate me. I don't change anything. I didn't stop the cancer the 1st or 2nd time.
Hoping me sharing this as someone who is older and apparently wiser will help you.
What I would strongly suggest is seek help if it becomes overwhelming. Call here and the helpline. Find a local Maggie's Centre. Ask the GP. Counselling can provide you with a lot of relief from the angst or give you strategies to cope. I know back in the day I got counselling from my union (another source of help) all to do with crabby aggressive people and not cancer. But I have used those skills for the cancer crap.
Be gentle with your self.... Hindsight is an amazing science
What is a Community Champion? How to add to you profile Life is like a boxing match, defeat is declared not when you fall ..... But when you refuse to stand up again ....... So, I get knocked down but I get up again. x
Thank you. I think I am going to have to seek out some counselling of some sort as seem to be on self destruct with my mental health.
I can't add anything to the wise words of everyone else who has posted in relation to your anger and angst -except to say that I was constantly thinking that if it is in one breast what's to stop it being anywhere else? I though that for a year post diagnosis and was equally convinced that it would have come back - my annual mammogram in June was clear and my smear test just before was clear too. My mindset has now changed. I realise there's no point worrying about what if's, just get on and hope for the best and then it makes it a little easier to live life. Good for you in making the decision to see some counselling. I. like Leolady had counselling years ago (unrelated to cancer), but the skills you learn do stand you in good stead to deal with what life throws at you.
The main thing I wanted to pick up on was that you said your prescription charges would be huge when they mentioned tamoxifen. I'm hoping you have been told that you get free prescriptions. Any long term treatment for cancer entitles you to free prescriptions. Tamoxifen is within that category and you just need to get your doctor to sign a form to confirm this to get your free prescription card. Each time you collect your prescription (once you've registered the card with your chemist) you just tick the box on the back of the prescription form.
Call Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm if you need to speak to someone. It's free from mobiles and landlines.
how about finding someone local to you to have a good old rant and rave with ?
I found a few people local to me and have made some new friends.
Initially it was a friend of my daughters mother, she'd been diagnosed 6 months before me and we had much better discussions because we'd both been through it. There's nothing quite like it for a good vent.
I'm in Bedfordshire, known for the romantic rolling hills of the Shanks and McKewan waste disposal site and the Yarls Wood detention centre, oh and Luton Airport, obviously.
It has some good bits too ...
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