Hi Lynn,  iam so pleased that your scans haven't shown any cancer.  Did the chemotherapy clear the cancer from your liver and bones completely? Xx

Hi Lynn,  that's amazing,  was it the docetaxel or the herceptin and pertuzumab that beat those cancer cells xx sorry to mither,  appreciate you replying xx

Hi, no worries, ask anything you want, I don't know for sure but I think it's the Herceptin that's the wonder drug, I know a lady in the same position as me and she has been having Herceptin only for the last 12 years and still doing well. I think Pertuzumab is relatively new and has only been available since 2012 and anyone diagnosed after then is given both . Take care Lynn

Thankyou lynn , 12 years is incredible , so good to know xx

Hi Lynn, 

I hope you don't mind me messaging but I've been reading through this thread and your diagnosis seems similar to my wife's journey so far. And was hoping you may be able to give some reassurance maybe. 

6 weeks ago she suddenly found a large lump on her right breast (I was suprised she only just noticed it with how big it is)

So they referred her, where she had 4 mammograms, an ultrasound and a biopsy.

A week later the results were back and confirmed it was Her2 positive breast cancer which has also spread to 2 lymph nodes. 

They told us the lump was 50mm x 48mm.

Last week she had bone and ct scans with an appointment with the oncologist in between. 

I asked the oncologist to predict a stage but because the scan results weren't back he could only go on the information he has. And he predicted t2 grade 3.

I asked him if he thinks it has spread anywhere else, he said he couldn't be sure until the results were back, but he looked at her blood test results and everything seemed fine. Calcium and ALP levels were the ones he emphasised were fine which would suggest it hasn't spread.

This is a positive I was trying to cling on to. 

However this past few weeks she has had a tight chest (could be anxiety) her upper back started hurting and now she is in agony with her lower back. 

I'm not sure if it is related, I'm hoping not, but she has convinced herself it has spread to her bones. 

Does any of this sound familiar with how you felt? 

Fast forward to today, she contacted the oncologists reception as she is concerned about her back, the reception told her the results were back but she couldn't discuss them. 

So she  got someone who is medically trained to call her back. Which they did and they said that the scans have picked up something, to do with bone density but the oncologist isn't happy with that (not sure why) and he was going to raise it at Wednesdays MDT meeting. 

Did they mention anything about your bone density when you were told it has spread to your bones? 

I guess I'm just looking for someone who has been through it who can reassure her that it's not all doom. 

She really isn't in a great place at the moment, and convinced herself that it has spread to her bones (because of the back pain) and the she isn't going to survive. 

Do any of her issues sound familiar to yours? 

And obviously you were told it has spread but you are still with us. That is a comfort to hear! Well done you! 

She starts her chemo on 21st, and personally I can't wait for it to start so it can start fighting it and hopefully beat it. The sooner the better! 

She is petrified and half the time I dont know what to say to make it feel better. And hopefully you're story gives her a bit of hope 

Stu x

Hi Stu, I'm sorry your wife is in the position as is having such a tough time. First of all, don't blame her for not noticing the tumour, neither did I and mine was 6cm when diagnosed.  I had pain which alerted me. I had a mammogram 2 years before, nothing picked up, but Her2+ is a very fast growing form of Breast cancer and by the time I started chemotherapy 5 weeks later it had grown to 9cm. It was in serveral lymph nodes. Subsequent scans showed it had spread to bones (spine,rib and pelvis) and 2 tumours in the liver. 

It really rang a bell when you mentioned back pain, this is exactly what I had while I was waiting to find out the scan resulst, I was in agony (upper and lower)and just couldn't find a comfortable way to sit. I was told by the nurse that it's very common and it is because although you don't realise it you are tensing up your muscles imagining all sorts which result in physical pain and she was absoulutely right, although my cancer had spread, I have never had any physical pain (apart from breast) from any of them and only knew they are or were there because they told me, once I knew what I was dealing with, although devastating the pain went. No, no one mentioned bone dentisy to me, but I do know nausea it a sign that it's in your bones because of the calcium released in the bloodstream, and I did have this. I don't know how old your wife is but Osteoporosis can cause bone density problems and is very common in women as they get older.

It's perfectly natural for her to think the worse, It's an horrendous time, wating for results, her world has been turned upside down and it's one of the dreadful things that happens to other people.

I really hope the cancer hasn't spread.  Although I was scared I couldn't wait to start the treatment 

and felt I was doing something positive. I had a really rapid response and that large breast tumour is no longer detectable (neither are the others). 

I wish you and your wife all the luck in the world, I'm afraid nothing you say will probably make any difference at the moment but your support is so important. 

I hope this helps, if you have any further questions please feel free to contact me. 

Take care. Regards Lynn

Thanks for your reply Lynn. 

Her back pain comes and goes, seems to go altogether or help with ibropofen, thankfully she's had none today, is that relatable?

She's had no nausea at all either which I'm hoping is a good sign. 

She's also had a good day mentally by keeping busy. 

They did the biopsy on 19th June, and diagnosed on 26th June.

The last meeting was with the oncologist (on 6th July) and he said based on the information he had at that time, was that the lump was 5cmx5cm, Her+ and had spread to 2 lymph nodes.

He looked at the blood test results (which were done on 26th June) and nothing was out of the ordinary. Nothing had flagged up as an abnormal reading. 

So we are now 4 weeks on from the initial biopsy, almost 3 weeks on from when the blood test was done.

And it will be 5 weeks on by the time chemo starts on 21st July. 

Hopefully not much has changed in that time. 

I noticed you were diagnosed 6 years ago and that it was secondary? What does that mean for you? And how are you in general? Also what stage are/were you if you don't mind me asking?

They haven't staged her yet, I don't think they do until after the operation from what I understand. 

But he said based on the information he had before the scans was that he predicted it was T2 Grade 3.

My wife is 37 so I'm not sure what the bone density means for her. 

They are having an MDT meeting tomorrow so we should find out for sure tomorrow hopefully. 

She may be along on here at some point i think it will do her good to speak with people who have been through it and fought it and see some positives and hope. 

Regards

Stu 

Well, apparently they had the MDT today now that they have the full results. 

My wife purposely freed herself up to be at home and around people for when they eventually call. 

Only for a *** up with the covid swab she did yesterday, she had a phone call today to go and do it again even though she did it yesterday.

So off she went to do this and sods law the oncologist calls her when she's out on her own. 

He asked is she with anyone, she replied no, but just tell me, she was just sick of the wait and wanted to know. 

He proceeded to tell her the news we had been dreading. 

That it has spread to her thorax, and has a shadow on her liver and is stage 4.

To say we are absolutely devastated is a massive understatement. 

I have no idea how we are going to deal with this news as it is utterly morbid. 

I also have no idea what this means for her future and how long this can be prolonged for if at all. 

He is setting up a face to face meeting with us to discuss this..i believe. 

I am just in total shock and have no idea how I am going to cope. 

Thanks for listening 

Hello Avfcstu

I'm sorry to hear that your wife has had this news today. It's understandable that you're both feeling in shock at the moment and wondering what the future holds. 

I wanted to try and put you in touch with one of our lovely members here [@Denise1977]‍ . Denise is 42 and has been living with stage 4 breast cancer for just over a year now. I remembered that she posted recently that she has been well enough to return to work and is doing well on treatment. I've tagged her into this post so hopefully she'll pop by to say Hello! and share some insights with you. 

I'm also going to suggest that you give our team of nurses a call ahead of your wifes appointment with the Consultant. I'm sure that they will be able to give you some advice and information about the kind of things that may be discussed and what types of questions you may want to ask. You can call them on 0808 800 4040, Monday to Friday 9am to 5pm. 

I hope this helps. I know that this is very difficult time for you but please don't feel that you are totally alone. I know that the community here will step up and support you as much as they can if you keep posting. 

Best wishes, 
Jenn
Cancer Chat moderator