Wife recently diagnosed with HER 2 positive breast cancer

Hi all, 

Apologies in advance for the essay. 

I don't normally do this kind of thing, but I feel it may help finding people to talk to in a similar position, for help and advice.

My wife is 38 and never normally checks her breasts, however whilst in the shower about 6 weeks ago she noticed a large lump in her right breast. 

She called the gp the following day who referred her. 

About 2 weeks later she had an appointment where she had 4 mammograms, an ultrasound, and a biopsy, the consultant told her she suspects its breast cancer. 

After a week of worry, hoping to be told it was just a cyst or something. We were called back for the results. 

As soon as 3 of them came in, I knew it was bad news, it doesn't take 3 people to tell you everything is OK after all. 

They confirmed it is cancer and they are still waiting on hormone results to come back, she also said she doesn't suspect it has spread (not sure how she can say that when she hasn't had further scans/results) 

Yesterday morning she had a bone scan, and in the afternoon we had an appointment with the oncologist, who told us the hormone results had come back and she has tested Her2 positive.

And that 2 of her lymph nodes have tested positive also.

She has a ct scan on Thursday. 

Still the big questions on my mind are:

Has it spread elsewhere? 

If so how bad? 

Is it cureable?

I understand they can't possibly tell me until the scan results are in but still, right now that's all I want to know.

Every little ache and pain she is getting we are worried it's a sign it has spread, she has a pain in her chest and back. 

I'm hoping it's just anxiety. Have any of you experienced this? Are there any tell tale signs that is has? Or is it just a case or wait and see what the scan results say? 

I asked the oncologist if he could predict a stage at the moment, and he said based on all the facts he has right now he said T2 Grade 3.

(still don't fully understand this) 

He added the lump is 50mm by 48mm

He also asked if she'd had a blood test, which she has, and he brought the results up on his screen. 

He looked at them and said there is nothing flagged up in red on there (which I took as a positive) 

He said something about if it had spread to the bones the calcium would read high and something about ALP?

But he said all of her bloods were normal. 

The things that worry me (but are also kind of a good thing) is how they are now steam rollering everything. 

Literally the day after we have now had dates for covid test, pre assessment, a line being fitted, and chemo starting (21st July) which will be 6 sessions 21 days apart.

Is that something to be concerned about? Are they concerned about something hence why they are steam rollering it all? Or is it just general procedure for this type of cancer?

Are there people on here with this specific type of cancer who can offer any help or advice?

Is it a common type of cancer? Is it a cureable type of cancer? 

She is petrified about all the treatment and especially losing her hair. 

When asked what her initial thoughts were regarding lumpectomy/mastectomy/reconstruction she feels more swayed for a double mastectomy, mainly incase it spreads down the line. 

Luckily her employer has been fantastic. 

She is currently working from home due to covid but they've told her not to worry about work, however I feel it may help her mentally to take her mind of things, and keep her mind active if she does what she can when she feels up to it. Obviously though I don't know how she's likely to feel during chemo. 

Does anyone have any other tips? Excersize? Diets? 

We have 2 young girls, and a really supportive family, she obviously has her up and down moments but I find she's at her best when keeping busy, or we see people, I don't know if it's just a bit of normality and taking her mind off things. I try to be positive but end up scrolling through Google for answers and end up depressing myself. I'd rather hear it from people who are actually going through it right here right now not scientific stuff from 2 years ago in America which is what Google seems to throw up lol. 

Thanks for reading, I'm hoping I can meet people in a similar situation but I can honestly say I empathise with every single one of you going through this horrible disease and I hope you are all coping as best you can x

  • Hello Avfcstu, 

    A very warm welcome to our forum - your wife is clearly so very lucky to have you by her side and there is no doubt just from reading your message that you will be a great source of support for her after her diagnosis. It's great too that she has such a supportive family and keeping busy and distracted while waiting to find out more is always a good strategy and will make her feel better. She is very lucky too to have such supportive employers at a time when their support will be I am sure very much appreciated. You are absolutely right though - Google is definitely not a reliable source of information and will often as you have noticed throw up links to various unscientific and outdated websites. It is best to stick to sites you trust and Cancer Research UK for example has detailed information on this page on breast cancer including a section here explaining staging, types and grades. 

    I think you will indeed need to wait now to have some definite clarity on everything on these all important scan results. Hopefully it won't be long now until you find out more. 

    You have come to the right place to meet others who have had a similar diagnosis and I hope they will be along and share their experiences with you. I had a little look for you on the forum and found for example this thread by [@VikkiPlum]‍ who was also diagnosed with HER2 positive breast cancer and you will notice other members who replied who also had a similar diagnosis, as for example [@bea_bea]‍. If you click on 'search forum' in the blue banner at the top and type in the keywords 'HER2 positive breast cancer' you will be able to see other threads on the subject that may be relevant to you and don't hesitate to respond to those you want to engage with.

    I thought I would also leave you our cancer nurses's helpline details. Feel free to ring them - you or your wife - if you have any questions or wanted to talk things through with them. You can get in touch with them on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

    Keep us updated on how things go for your wife - we are keeping everything crossed for her results! 

    We're all here for you anytime you need to chat. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Thankyou for your reply.

     

    Her state of mind isn't in a great place at the moment. 

     

    She is suffering with a really bad back. Again I don't know if its something related or whether it is (hopefully) just a case of either anxiety or a pulled muscle or something like that.

     

    Today hasn't been great I've been trying to get her to call her breast cancer nurse for some reassurance about this pain. Hoping they would tell her it's not related. 

     

    She hasn't been able to get through to her however she called the oncologists receptionist. 

     

    They informed her that the results from scans are back. And it has picked something up but as she isn't medically trained to discuss this she got someone to call her back.

    Which they did. They didn't reveal anything as such but mentioned its picked something up to do with her bone density. 

    And that the oncologist is going to question this at Wednesdays MDT meeting and give her a call afterwards. 

     

    Does anyone know what this mean? 

     

    She has now convinced herself it has spread to her bones and that it is going to be bad news. 

     

    Can anyone offer any reassurances? Or what this news may mean? 

    As I have no idea. 

     

    I am still clinging on to the fact that the oncologist when her looked at her blood test results said that nothing was flagging up to suggest it has spread anywhere and that her calcium and ALP levels were fine. 

    He said usually they flag up with patients that have had it spread. 

    And also she has had this back pain (maybe not as bad) before these blood tests were done 

     

    Stu