I just do not understand

Hello,

I am posting on behalf of my mum. She was diagnosed with Invasive BC at the beginning of the month and they think it is possibly stage 3. She did not find a lump and it was picked up in a mammogram. Does this mean that it could be quite advanced if for example it had 3 years to develop?

I am so worried about her. It is all I have thought about since she was diagnosed. I am trying to do as much research as I can.

I am very concerned with the care she has received so far for the following reasons. Firstly, apparently the doctor had tears in her eyes when she gave mum the news. To me this is very unprofessional for someone who deals with these situations day in and out. Secondly, I would have that thought that they would have had a clearer picture of her diagnosis by this stage. She has had lots of tests and a biopsy and is having a WLE this week. Surely that should have an idea about the stage by now and should they not be able to tell the grade from the biopsy? Dad says to me that is not happy that we had to wait 3 weeks for her surgery and worries that it has spread in this time.

After she has had the surgery, do you think we will have the full diagnosis for sure?

She is not the sort of person to take about her feelings. I want to be there for her but have not done a very good job yet. I did not know what to say. My dad seems to think the best way is to district her and be upbeat but I worry that she feels that we are just ignoring the matter.

Is anyone else dealing with stage 3? Is there a possibility it could even be stage 4?

Many thanks for your help

Hi, I’m so sorry to hear about your mum, and the way you are feeling is perfectly understandable. The wait for results/surgery etc is by far the hardest time for all of us - those of us with breast cancer, and all our friends and family members.

Even aggressive cancers are relatively slow growing - many take years before they are detectable - that doesn’t mean that they will necessarily have spread anywhere else in this time. Also, the wait between diagnosis and surgery is very normal - my mastectomy was five weeks after diagnosis, and although my tumour was Grade 3, and therefore aggressive, it hadn’t grown during those weeks.

Biopsies are not always accurate - which is why they will not have given your mother a firm stage as yet. The grade can often be ascertained from biopsy sample - but many women on here have had their grades upped after surgery - what started out as apparently a grade 1 or 2 cancer has turned out to be grade 3 when the full tumour has been biopsied - and this may well be why they have not given a definite answer as yet. Better in some ways to wait, and be certain, than to say that the news is not as good as at first hoped - if, indeed, it is worse.

From my own experience, I had a 3.2cm tumour in my left breast, and the u/s showed suspicious node - but the node biopsy was negative for cancer cells. However, post mastectomy and axillary clearance, I did have a cancerous node, and there were cancerous cells in the capsule surround it - the ultrasound was right. Biopsies only take a tiny sample - and although can confirm the presence of cancer cells, will not completely rule out cancer if the biopsy appears ok - and this is where an experienced radiographer and surgeon come in.

As for professionalism - I would much rather have a consultant who cared, deeply, for their patients than one for whom we were all just ‘case studies’ - the tears in her eyes may have been empathy, may have been a cold or allergy - but in any case, if it was through sorrow at the news, then I’d be more reassured that this consultant would move heaven and earth to help my mother.

You will have the full diagnosis post surgery - your mother may have to wait a week for results, or may know sooner - a week is perfectly normal. Be aware, too, that your mother is the one who has the right to know - you and your father are, of course, involved - but it is up to your mum what she wishes to know, and perhaps there are things that she would rather not have to deal with yet - including grade and staging. After all, ‘knowing’ will not make any difference to initial treatment, and perhaps she would rather take it one step at a time at the moment - we are all very different in how we react.

As for being there for your mum - when you don’t have the words, a hug and kiss say far more anyhow. Distracting her and being upbeat is possibly more helpful for your father, than it is for your mother - but remember that he has to deal with his own emotions too. Just tell your mum that you love her, and you’re there for her, and sneak her a hug every now and again. I can’t imagine that she can really think of anything else at the moment, so even if she is not talking about her feelings, acknowledging that she will be in turmoil is important.

Good luck - to all of you. This is so tough - but the waiting is the absolute hardest part. Once your mother has a plan of action, as it were, things will become easier - no matter what the diagnosis entails.

Sophie xxx

Hi Joana,
Just wanted to echo Sophie’s very wise words. (Which brought a tear to my eyes, I must confess) The waiting for results is the absolute pits,but has to be endured, unfortunately because the Consultant cannot say for sure about grade or whatever at this stage, as Sophie said. However, you sound as if you will be of good support to your Mum (and Dad) whatever Mum may get told. From a mother’s point of view the worst thing for me was actually telling my Sons, worse than telling the rest of my family, so it might be that your Mum will need to give you details in her own time, as I certaily did.
I am sure having a daughter will be of great comfort to her, my Sons are great, but I think daughters must be closer still to their Mums?
Heather.xx

Hi Sophie,

Many thanks for your helpful advice. It is good to know that it is unlikely to have grown in this time. My father and I are both like to be in control so this situation is the hardest as I feel quite helpless. Do you think I should ask her to tell me when she gets the results or wait for her to tell me?

How are you doing now? Best wishes X

Many thanks Sophie for your comments and helful advice. I am sorry to hear that you have been through all of that. How are you doing now? x

Hi Joana

I strongly suggest you take a look at the information booklets on this site, particularly the ones aimed at those who are newly diagnosed, and there’s also one for families of BC patients. (Don’t overdo the googling though, there are a lot of sites out there that are sensationalist, inaccurate and bordering on dangerous. Stick to reputable UK sites such as this one, Macmillan, Cancer Research, that kind of thing, if you feel the need to google.)

I think you might have got a bit confused about what you’ve been told. As far as I understand it, they don’t tell you STAGE before surgery, but can tell you GRADE. So I suspect she has GRADE 3, rather than STAGE 3. One of the booklets I mentioned goes into a bit more detail about what grade and stage mean, so start there if you want to find out a bit more.

I also go with what Sophie and Heather have said.

You might also find it helpful to call the Helpline (number at the top of the page) as they are very good at practical suggestions and unbiased information.

Finally I wish your mum and all her lovely family the strength to get through the surgery and, more difficult, the waiting for results. The waiting room is the worst place to be, as the others have said. It is horrible to be faced with this disease, but it gets easier to deal with once you know the treatment plan.

Your job, as a family member, is perhaps even harder than ours as the person suffering from the disease, because it is so difficult to know how best to support your mum. But I think Sophie’s got it right, and hugs and the little things really matter. You might find you can have a quiet chat with your mum to let her know you’re there for her and to see if she can tell you what support she wants from you, but be prepared for her not to be able to tell you, and for her needs to change.

Do tell your mum about this site too, she will be made very welcome, as will you.

CM
x

Joana, huge hug to you - you are lovely to ask how I’m doing when you’re struggling with all this cr*p at the mo! In all honesty, I’m doing fine. I’ve had my mastectomy and node clearance, and I’ll have my third dose of chemo this Friday - and will then be halfway through the chemo, which is unreal, it really has gone fast. I then will prob. have to have radiotherapy, as there wasn’t enough of a clear margin after my mastectomy (and that IS unlucky - I’d hoped to avoid rads, but really because it means trekking to Southampton every day, not because the treatment is tough!).

Most of the time I feel absolutely fine, almost guilty because I’m not at work… but I work in a school, so too much risk of catching something whilst immunity is low from chemo. I am more tired than usual, and don’t sleep particularly well - but I have four children aged between 16 and 6, and I am somehow managing to keep them clean(ish) and fed, and to school on time - so it can’t be that bad!!!

The thought of surgery and chemo was much, much worse than the reality of it all - which is why I truly mean that the waiting is by far the toughest part. We women are tough, you know - we can lose bits of our bodies, our hair, our dignity (!) and still keep on smiling… most of the time… and if we have relatives and friends around us to lean on, just occasionally, the journey becomes that much easier.

I’d tell your mum you would really like to know her results/treatment options etc, if she would care to share with you - and offer to go along with her to any appointment you can make - for moral support and to take notes if needed. I’m sure she will share with you, and I know you’ll be a fantastic support to her.

Do let us know how you get on, I’ll be thinking of you all.

Sophie xx

Thanks Sophie and all for your advice and providing perspective from a mothers point of view. It is helpful to understand what is best for her when I am sure my judgement is clouded by wanting to try and manage the situation.

You are such amazing ladies with such great strength to deal with everything that you are going through, looking after your families and still come here to provide further support for others. Truely an inspiration.

Best wishes for the rads Sophie. Thinking of you, sounds like you have been through the worst so fingeres crossed for the rest of your treatment. Thanks all X