Mum's breast cancer diagnosis

[hlc123]

Hi all

My Mum had a routine mammogram in March which detected high grade pre-cancerous cells. She was given the options of a mastectomy or lumpectomy and radiotherapy, she opted for the latter and had it done along with reconstruction just over 4 weeks ago. On friday she went for her dressings changed and they dropped the bombshell that she had a small area of Grade 3 cancer.
She and my Dad were not expecting the news and struggled to take it in, so today I have spoken with one of the Breast Cancer nurses (with my Mum's permission) who gave me the following info.

56mm ductal carcinoma in situ
1.6mm grade 3 breast cancer clear of margins
Dcis 0.5mm from anterior margin
Lymph nodes clear (0/3 – I presume they took 3 lymph nodes and all are clear as she said Lymph nodes clear then I said ‘oh that’s good news,’ and she said ‘Yes 0/3)
Er/pr negative
Her 2 positive
Treatment plan - Chemo/Herceptin/radio

Am I right in thinking that means 56mm of pre cancerous cells were removed and 1.6mm of that is actual cancer (Grade 3 - so aggressive).
They have removed it all?
And it has not spread to lymph nodes?

Any advice/info would be very much appreciated. She has been referred to oncology but not heard anything yet and not due to see her consultant until 12th August.

Thanks in advance

Oh what a horrible shock to get that news.

However, as far as a breast cancer diagnosis goes, it's definitely on the more positive side. No lymph node involvement is great news as it means that it is contained in the breast, and HER2 means she has an extra targeted therapy in Herceptin alongside chemo. Clear margins is good as well as it means they think they have removed it all.

Ductal Carcinoma in Situ is when it is still within the milk ducts. It's not 'pre-cancerous' as such but it's not properly in the breast yet either. 1.6mm is a very small area of cancer (unless it's 1.6cm which is also quite small)?

Chemo and Herceptin will be difficult at times, but her prognosis from what you have said is really good at this point and she will get through treatment and hopefully be ok. Sending

Thanks so much. Yes my parents were distraught on Friday, my Dad doesn't show his emotions but was in tears. I went with my Mum yesterday to have her dressings changed again and explained what happened on Friday to the nurse and when she checked my Mum's consultant was expecting her on Friday morning, but they never told my Mum! Then saw she was attending the dressings clinic so another Dr broke the news. It's good to know it's sounding ok as we have been terrified since Friday (my parents/sister were confused with grade/stage - we still haven't been told stage just Grade 3). Thanks so much for your reply.

At that size, with clear margins and no lymph node involvement that is Stage 1.

Grade 3 does sound scary as it's the most 'aggressive', but it basically means that it's not a slow growing cancer (I think some breast cancers in older women are very slow growing Grade 1) but a lot of breast cancers are grade 3 and it doesn't necessarily have any bearing on prognosis, particularly as it appears it has been found early and now been removed.

It can be helpful to write down any questions you have for your next appointment. It can be really difficult to take in at the time and also at appointments you might forget to ask things you wanted to know.

Hi there I am sorry about your mum.

The stage is usually determined by the size of the tumour and if it's spread to the lymph nodes or other parts of the body.

There is a cancer forum here on the General Health board so might be worth joining that?

I wish your mum all the best.

Hello - I'm sorry that this has happened to your mum and your family but don't panic. I'm currently having treatment for an almost identical BC and can reassure you, your mum & dad that it's a hard slog but it is not the end of the world.
It is excellent news that the lumpectomy had clear margins and that the lymph nodes are clear as this means that all of the tumour has been removed and it has been caught in time as it hasn't spread to any lymph nodes. The unfortunate bit is that the cancer is HER2+ but only because this does mean extra treatment and that chemo is unavoidable.

The best place to get medical information from is Macmillan and Cancer Research websites but there is also an excellent place here in the General Health section called Cancer Support. All of us have/or have had cancer or are awaiting results so there is virtually nothing that we don't know about the cancer journey. We are very supportive to sufferers and family alike so come and visit our page and you would be very welcome. You can ask for advice or vent or just have a read.

Thank you to everyone who has replied, we really appreciate it

Wishing your mum well.

Thank you. I hope you are doing ok, I have heard the treatment as being described as brutal. Wishing you all the best.

I was diagnosed with breast cancer last June and 13 months on Im pretty much back to normal.

I had a lumpectomy in August, chemo Oct-Feb and then radiotherapy in March. I'm HER2 so have been having Herceptin injections every three weeks.

I found Breast Cancer Now and the Macmillan forums a great help. Chemo was hard but I managed it. Your mum will need a lot of support emotionally.

Breast cancer Now have forums for the month you start chemo which was a great support to chat to other people online who are going through the same thing as you.

I hope your mum gets on ok

I had an almost identical breast cancer 3 years ago.
They take a sample of 3 lymph nodes to test. If they are clear the cancer hasn't spread.
The grade of the cancer depends on the analysis of the material. Mine was very aggressive so high grade but also tiny.
HER2 positive cancers used to be the biggest killers but the drug herceptin has transformed that. Herceptin is only licensed to be given alongside chemo, so some patients who might not otherwise have needed chemo have to have it in order to get the herceptin.

I had lumpectomy first like your mum and then 12 weeks of weekly chemo (Paclitaxel). Three weeks of radiotherapy. Herceptin was supposed to be every 3 weeks for a year but it was stopped at 6 months because of pandemic. There has been research showing outcomes of 6 months herceptin as good as 12.
Plus it can damage the heart. They will do regular heart scans to check for this.

The chemo is by a mile the hardest part. If she had surgery first she may well get the same chemo as I did. Others have a 3 weekly cycle.

I don't know how old you are but my DC were 21/23 when I was diagnosed. I was very keen that they didn't make any decisions based around me, I wanted them to carry on their lives as normal. They were great. I didn't need or ask for their help apart from a couple of times when I needed lifts to hospital. There are many, many hospital trips but most I could drive myself. I couldn't drive to the chemo though because of the drugs given alongside it so I needed to be dropped off and picked up.

Your mum might be concerned about hair loss. People react differently. I saw it as a minor inconvenience and I refused to try the cold cap on the grounds that a) it doesn't always work and b) it prolongs the time in hospital. I felt pressured to try it and to care more about my hair. Once I made it clear what my feelings were the family were great. I wanted to be able to be at home unselfconciously without having to wear wigs or hats in the house.

Thanks for the replies, I really appreciate you sharing your experiences. I am 39 and my children are 15, 10 and 7 and adore their Nan, my youngest especially x

Hello @hlc123 just wondering how your mum got on?

@Lookingfortheanswers Hi, thanks for asking. My Mum completed chemo in December (3 x EC, 3 x Dox) and had radiotherapy at the start of the year. She is still having Herceptin injections every 3 weeks until November (will be 18 in total) and her first mammogram since diagnosis was ok. Her hair has grown back well and apart from tiredness and collapsed veins in her arm/ hand, she is doing well. Are you going through similar? x

That's fantastic news. It sounds like a long and tiresome journey for your mum but thank goodness her latest mammogram was clear and she is still with you all.
8 years ago my mum had breast cancer and it was 'aggressive stage 3'. It had spread to her lymph nodes in one armpit but that was all. She had 6 months of chemo, surgery & radio and it was like it never happened.
48 hours ago she told me it's back and in her spine & liver. Of course I'm down an online rabbit hole now, fearing the worst. She is 57 and I can't bear it but am trying to be strong for her and like you, my three children who adore her. They are 12, 7, 5.
I know it will get her in the end but am praying for a few more years of keeping the tumours at bay.
Sending love to you and hopefully your mum's will be gone for good come the end of the year x

@Lookingfortheanswers I am so sorry to read about your Mum's diagnosis. Does she have a treatment plan yet? Sending lots of love to you and your family x