New bc diagnosis at 35 Her2-ve

Yesterday I was diagnosed with her2 negative bc in my right breast
At 35 I was shocked but expected it given the visit to the breast clinic the week before with two ultrasounds ,Two mammograms and a biopsy
Awaiting mri next to see if it has spread before treatment
Also has a blood test for mutated genes ?
All very confusing scared and blank at the same time
My poor daughter is just about to sit her exam prelims
AnywY wanted to say hi and connect to the forum x

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Hello there @alphawhiskey35

Ah I’m so sorry to hear of your news . It will be difficult for you to get your head around at present especially as you are still waiting for tests and results ( which is awful - many people on here think that’s the worst part ) . There are resources on the main site which would help you to find out about the gene mutation - I know a bit about this but not enough to explain properly . I think your best course of action might be to ring the helpline on Monday - if you can talk it through I think they might be able to clarify some things and advise you re your family.

If you find that you do have a gene mutation you could start a post with it in the title - there are some very knowledgeable people who might respond , or search other posts .

Hang in there and try to treat tomorrow ( today now ) as a day off - no tests today , no results today , no phonecalls or letters . Try to do something nice with family or friends - you won’t be able to forget about it but taking a day at a time will help you get through . I found that I really struggled in the evenings but finding moments of joy and peace at other times during the day gave me something to hold onto. Yoga , mindfulness and exercise can all help .

Sending love
Joanne. X

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That might be an idea thanks for replying
It is worrying waiting to know what you are dealing with
I found the wait after the biopsy hard I am just trying to stay positive In the meantime for the mri
I have been told it could be a two week wait for the mri x

I was also diagnosed this week and also now waiting on an MRI - they also said it could take two weeks. It feels SO long to wait!! I’m guessing there will be a wait after that as well to get the results?!? I just want to get on with it now.

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I hope you don’t have to wait long . If you have a contact number and you live nearby / are able to get there at short notice you could ring up and offer to take a cancellation .

Joanne. X

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Hi Charlie it’s hard to wrap your head around with all the information isn’t it
I’m in Scotland and they have said I can call and see if there is a cancellation each day
Xx

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Thanks Joanne I plan on contacting them although I have been reassured that nothing sinister will happen that fast xxx

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Hi Alphawhiskey35. I am also playing the waiting game. I have had some good days where I have been really focused on the ‘now’ and just keeping myself busy and other days where the waiting has got to me. It’s a horrible rollercoaster of emotions and everyone on here seems to be able to relate to this. What I have found reassuring is how everyone also says this is the worst bit and, once you get your treatment plan, it makes things more manageable. I have my fingers crossed that you will hear about your MRI soon.

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Hi Triah
I got a date for the 1st of dec for an mri
I like yourself have been trying to keep busy as there is nothing else for it at the moment
Night time is the worst but I find I try fill my day so I fall asleep with ease lol well that’s my strategy for now
Have you heard anything xx

Hi @alphawhiskey35,

Welcome to the forum, I hope you find it a comforting and helpful place. As you will have already seen from other responses it is a really supportive community.

I’m really sorry to hear about your diagnosis. If you ever need to talk to someone please know that our nurses are here for you any time, here on the forum on the Ask our Nurses your questions or over the phone 0808 800 6000.

Sending our love,

Alice :heart:

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Glad you’ve got a date for the MRI. I had mine finally this Wednesday so I’m now all done for tests.
I’m not sure if you’ve had an MRI before but I was a bit taken a back how long it was. I thought I’d be in and out within an hour but they needed to do contrasting so a cannula was fitted and then I was in the machine for over 30 mins! It was fine, just quite uncomfortable as you’re lying on your front with your boobs in holes and face down. Make sure you say yes to the music otherwise it’s very boring!!!

I’m now waiting for my results appointment from the second biopsy and MRI - they’ve said it will be 2-3 weeks - again!

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Hi alphawhiskey. I just saw you have the date for your MRI, that’s good. I have now got my treatment plan and am having surgery later this week. It is a real relief when things finally start happening. I hope things get moving for you soon too. I feel like a part of me is still reeling from all that waiting… I’ve never known anything like it. Absolute emotional torture! I know I’ll be playing the waiting game again after surgery, waiting for pathology results but, at least I’ll feel like some action has been taken, unlike the waiting of those early weeks! Lots of people told me here that it feels a little easier once you get your treatment plan and they were right. I hope that gives you some reassurance…

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Hi Charlie
Glad that wait is out the way for you in to the next I hope it isn’t as long as stated
My cancer nurse has said that she will phone me with the results of my mri on Friday the 5th after a mdt meeting and I may also require a second look ultrasound
Thanks for the tip about the music I will be taking them up on that offer now lol xx

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Hi Triah
That’s fab that you now have a plan and surgery has been scheduled
Can I ask how long was it between the mri and surgery ?
At the moment I feel like I am wishing the week away trying to remain content and in the moment but my mind slips sometimes
Will be thinking of you on surgery day x

Hi ladies,

I too am in the waiting period. Had my MRI last Tuesday and meeting my consultant on wed to discuss results and hopefully get treatment plan and date for surgery. It’s tough waiting but I found the wait for biopsy results and diagnosis was pure hell. I’m trying to get myself as organised as possible for Christmas, not knowing if I’ll be recovering from surgery or having chemo or what the heck will be happening over the next few weeks. Hope you all get treatment plan soon and we are all on the road to recovery. Xxx

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Hi Clare
This is the exact way I feel I keep asking and trying to plan when I’m reality I can’t
My nurse has said they don’t know wether they will do chemo first or surgery and everything depends on the mri
They waiting is torture along side the questions I’m your head that no one can answer
Hoping for a plan quickly for you xx

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Clare81, i have done exactly the same re Christmas, not knowing what to expect in the coming weeks…i guess it’s kind of doing what IS in your control, when everything else feels out of your control…

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Thank you alphawhiskey. I think everyone’s experience will be different and will depend on a number of things, including waiting times in your area. I was 3 weeks between biopsy and diagnosis, 12 more days until MRI, then another week until results. At results appointment, i had to have another ultrasound and then was given my surgery date for 10 days later. To compare this with people i know in different postcode areas (and with different types of BC), one friend had her results and had surgery the following day and another had a month between results and surgery… so i think it depends on so many things…i guess this reply isn’t particularly helpful but I think it’s probably better than giving you expectations of how it will be when your experience could be very different…

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Hi Triah and alphawhiskey,

Yes, the not knowing is hell, waiting and wondering. All ive wanted these past 2 weeks is my treatment plan, but now, the night before my consultation… Im terrified of what that plan might be and how soon it will start. Obviously, I want to get started ASAP but the reality of it is very scary too. I suppose my head is all over the place tonight :upside_down_face:. My youngest is turning 11 next week and have a party booked for him, so hoping im not in surgery that day. Even saying that I dont even know if I will get surgery first or chemotherapy. My MRI results will determine that I suppose.

Will fill you in on my plan once I get it. Perhaps we will all travel a similar road. I hope the wait passes quickly for you ladies. Xxx

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Hi Triah thanks for sharing your insight into your journey at the min and yes I can imagine having a plan in place after will settle things
Clare I seem to be in the same boat as you atm hope all goes well tomorrow
I know what you mean you want to know but worries what that might look like for you I am the same !
My daughter starts her pre lim exams tomorrow and trying to keep a calm household for her in the mean time while my head is running way ahead
Fingers crossed for you for tomorrow xxx

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