I’ve not done this before but joined as I know how many times I searched my circumstances at diagnosis. I was just turned 40 at diagnosis and very large tumour sizes that I’d never seen before on any forum. Google is most definitely not your friend. Please listen to your experts instead. Targeted drugs and treatments have moved on so much since some of the stats you will read and you have a massive community to support you through. Best of luck and reach out if you need to others x
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@frazzledmcsazza @Kay0987 @hariboqueen I cannot thank you enough. I always have a crash after seeing my consultant as it’s so traumatic to see him. He is like a doom angel. He always starts by saying ‘Bad news…bad news…’ and my stomach falls out beneath me and hits the floor before even hearing what the bad news is. I wish someone could give him lessons in how to deliver information. I’m so phenomenally grateful to you for reaching me out and picking me up yesterday. You are like these loving arms that reach out from afar and give a big warm, soft hug on those days. Thanks for all the reassurance about what is possible now. I’ve slept well, I’m climbing back up again and I’m going to dye my roots this morning in defiance, even if I do lose it all in a few weeks time. That’s how much my fighting spirit has returned today!!
@hariboqueen I can’t tell you how much it means that you joined and posted when you haven’t before to give me some hope. It worked. Thank you.
Thank you all, you wonderful women.
Have a lovely weekend,
Sal
x
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Hi @hariboqueen
Welcome to the group. It can be quite scary joining an online forum if you’ve not before. The people on here are so friendly, helpful and kind. You can rant, share or just read. What every id best for you.
Remember that breast cancer now have nurses available online or by phone 0808 800 6000 if you want to ask a question or just chat.
Hope to hear from you again 
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If it’s possible you need to get rid of Mr. Doom. I mean WTF! That guy by himself without your diagnosis will cause PTSD.
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That’s the way I’m feeling right now @Kay0987 . I don’t think he likes to admit defeat, in that he has operated four times on my right breast now and cannot get the DCIS out. I am hoping that they hold fire on the mastectomy and I can go straight into my chemo and Herceptin treatment, and then I can switch to have somebody else do the mastectomy at the end of it all. I have sent all my Case notes and diagnosis letters to the Royal Marsden in Sutton for a second opinion. Also, and I don’t want to sound ageist, but it worries me that he started his medical training in 1976. I’m worried that some of his methods might be outdated. I understand that age also means experience, but I have lost faith in him now and find walking into his office nothing but traumatic.
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He needs to be retired. It’s not rocket science to know that you don’t start off telling your patient, “it’s bad news” when talking about cancer. Anyway I know your system works differently than our’s but yes, you should have had a mastectomy if you had wanted one by now. Four surgeries…I mean come on! That’s just ridiculous. Anyway I hope you get results quickly with your letters and I’m so sorry you’re going through this. Chances are it will still be allright in the end since herceptin and other immunotherapies for HER2+ are that good but still. This just isn’t proper care.
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@Kay0987 your messages are so encouraging that I have them on my positivity document which I read to counter his ‘bad news’!
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I’m glad. But truly HER2+ therapies are fantastic. You just need to get started on them.
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Hi guys
So I have my PET CT scan this Tue 30th Jan and my MRI scan on Wed 31st Jan. I am being discussed at the MDT meeting tomorrow to decide whether I should start treatment before the mastectomy now. 
Sal
x
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Will be thinking of you Sal xxx
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Oh @salbert I can’t begin to imagine your frustration at surgery no. 5 in prospect. Obviously I don’t know your whole story and situation, but my gut feeling is chemo & treatment next then come back for more surgery. From what I’ve gleaned, we HER2+ve ladies are often the best responders to chemo.
I’ve said on several occasions the ‘bedside manner’ of the surgeons can be wanting which I put down to them preferring their patients asleep (anaesthetised) than awake😂.
Be assured, in my experience, the oncologists are much easier and come across far more compassionately. I will be praying your experience is similar.
I do wonder too if you shouldn’t be asking a question of the hospital PALs service (Patient Advisory Liaison) - or as a minimum a pointed question to the BC nurses about how ‘normal’ 5 surgeries is. I appreciate you could do without having to do that on top of everything else.
If anyone wonders why I’m posting at this hour, I’m into week 3 of the hormone blocking tablets, Letrozole which I am advised to take for 10 years because I’m oestrogen +ve as well as HER2. The hot flushes, mood swings & sleepless nights are all flooding in! I know it’s worse in the first 3 months, so going to tough it out - that’s what I’ve spent a lifetime career telling other women to do!! Anyway only 9 years, 11 months & 1 week to go 
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Thanks @chellebelle How are you doing?
@suedot These are very good points. I’ve written them down and have just called my MacMillan nurse team. It went straight to answerphone so I will keep trying and if I can’t speak to someone I will leave a voicemail in good time for the meeting which is 3:30pm. I am going to push hard now for treatment before mastectomy. I am definitely going to ask how normal my crazy amount of surgeries is. The fact that my GP friend and medical Professor friends have both now told me it is essential that I get a second opinion, speaks volumes. He just doesn’t listen and his manner seems to have changed towards me with each unsuccessful op.
Anyway, at least another weekend is out of the way and things are happening this week. And now I shall try phoning the nurses again.
Love to you all,
Sal
xx
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@suedot Just the 9 years, 11 months and 1 week, is it? Isn’t it awful when you have to take your own advice!! 
Getting older sucks. Thinking of you. XXX
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I feel you for just 11 days into Letrozole and lack of sleep and 5/6 hot flushes/surges in the night are debilitating. Some nights I wake up and the heat will not disperse for hours. I fling the duvet off, walk on cold tiles, put a very cold cotton sheet on me which then sucks up the heat and becomes unbearable. I take Zopiclone a couple of nights a week, which allows me to either sleep through some flushes or I can get back to sleep quicker. Husband is sleeping in another room as he did through chemotherapy because I don’t want to disturb his sleep as well.
I even did a clinical hypnotherapy course with Penny Brohn but when the heat comes I’m so overwhelmed by it I can’t follow the steps they advised. It felt lovely doing the course when I wasn’t having the flushes.
You can’t help feeling that periods, childbirth and hot flushes are major design faults!! I have Zopiclone and at the moment I couldn’t live without it. I say well done to you @naughty_boob for only taking it a couple of nights a week.
Before this, I never fully understood the Warrior Women thing. I do now. I really do now.
XX
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Hey,
I was diagnosed last July and just found this group… I’ve had chemo/
lumpectomy/snb and get results on 12th.
I’ve got ER+, HER2+ early stage grade 3. Most days I still wake up and think ‘have I really got BC?!’. Then I think, be hopeful…
I cry a lot, I laugh a lot and am trying to see this as an opportunity to change my life for the better, to embrace the slow speed that life goes at these days.
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Hello @bearcat1 - welcome
It’s mad, isn’t it. Then again, in the UK, 1 in 7 women will get BC so maybe it isn’t so mad. Just a total bummer that we have to be in that 14.29%. (Yes, I googled that, I’m crap at maths!)
It’s a rollercoaster of emotions. I do the same as you. I cry, I panic, I deny, I chill out completely sometimes and then I get cross. I never was that calm emotionally and add the cold turkey HRT into the mix, well, it’s a miracle I’m still married!
As you may have gathered, I’ve had a few bad days since Thursday (my consultant triggers me) but today I’ve turned a corner. I suddenly had the sense that all would be well and I went for a walk listening to Eckhart Tolle: Essential Teachings. I love his book ‘The Power of Now’ and realised I needed to tap back into that today. It really worked and I got very present and relaxed on my walk. Somebody told me to make myself my project. It’s good advice and it seems that is how you are viewing it. What a great outlook, to see it as an opportunity to change your life for the better. I have also made some very positive changes and today, as I walked with the wise words of Eckhart entering my soul, I found myself going slower and slower until I stopped and sat on a bench by a stream and actually saw a dormouse. It was truly magical. Until my BC diagnosis my life was manic. I never stopped. I love that you see this as an opportunity. PLEASE STAY!! 
Love Sal
x
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Hi @bearcat1
Welcome to the group.
I know what you mean about ‘is this really happening to me?’. I e had surgery, chemotherapy and radiotherapy. On my last radiotherapy I got quite teary and they asked why, I said I still,can’t believe this is happening to me. I found the lump on 2 April 2023, so nearly 10 months ago!
Let us know how you get on on the 12th.
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Yes, do let us know how you get on. We like to keep up with everyone.
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@salbert good luck for tomorrow and Wednesday. Loved your dormouse story. Having a few mental wobbles this week as I am between treatments and that has led to more thinking time rather than the heads down get through it attitude of chemo. Agree with a lot of posters including yourself. Trying to enjoy the small things and not think too far ahead.
@suedot I hope you manage to cling onto ‘the first three months are worst’. I had a lot of hot flushes at the start of chemo (was also on phesgo for hormones) it is less pronounced now. Get a few hot flushes but nothing compared to a few months ago. I hope it improves for you too.
@bearcat1 welcome to the group. I know what you mean. It still feel unreal to me that I am going through this. Maybe that is our brains protecting us to some degree. I too am trying to work out what I want to change to make life more joyful more frequently. Although the fact I can barely walk around the block without being exhausted might delay any grand plans for a month or two.
Love to all.
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