I’m new to this site and have joined for support.
My mum who is 51 has been diagnosed with invasive ductal cancer (21mm invasive and 30mm non-invasive, grade 3). She’s had a bilateral mastectomy. Her sentinel node biopsy has shown 3/3 positive. She’s having full clearance soon. Has anybody else had the same diagnosis? Does anybody know the likelihood that it has spread to the rest of the nodes? I’m trying to support her and my dad but am trying to be realistic. My mum has been told she will have chemo and herceptin for a yr. Also maybe radiotherapy if large number of nodes affected. Any info would be gratefully received.
I am sorry to read about your Mum’s recent diagnosis and am sure this must be a difficult time for you, you have to come to the right place for support and information.
In addition to your fellow users experiences and support I am posting a link to our ‘Newly diagnosed’ publication which you and your Mum may find helpful, you can order a copy via this link:
I was diagnosed 2 years ago yesterday. I was Grade 3 with 2 nodes positive. I was also HER+ and hormone negative.
I had a mastectomy, followed by 6 FEC-T chemo, 25 radiotherapy sessions and 1 yr of Herceptin. It seemed like forever, but the last herceptin was in March this year.
I am 56 years old with 3 grown up children. It is hard, but do able. Take each day as it comes. It will come to an end. Good luck you sound like a wonderful daughter. My oldest daughter was amazing and so strong, we did manage to have some lighter moments during it all. My only advice, don’t look too far ahead and don’t get too upset with everything, there are things you can do or take for nearly all the side effects your mum will have.
Try to find enjoyable things to do on her better days and there will be better days as well as bad days. The good times will help her through the bad days.
Hello Jen,
Sorry you have to visit this place, but it’s a really good one for help, information and support. I can’t answer your questions precisely, as my diagnosis was a bit different from your Mum. I had an enormous (8cm) tumour so had my chemo before surgery, which shrank it a lot, but I still had a mastectmomy. Mine was Grade 3 and I had 3 nodes involved, determined on full axilary clearance. I am a few years younger than your Mum but close enough I guess. There are a lot of grade 3 girls on here, many several years post diagnosis and doing fine.
You ask about spread through the nodes. Everyone is a bit different, some people have only one ‘sentinel node’ and other people have up to three, a few don’t have any. Before surgery I knew I had one node involved (seen on ultrasound) and only found out it was three afterwards. You will find many people with various degrees of node involvement all on here.
After my diagnosis, I had scans to see if there was any further spread, and thankfully there wasn’t. They did a bone scan and a CT scan to check my organs. These scans are painless. The scans help them choose the best treatment options.
I had six rounds of chemo before my surgery and then 25 zaps of radiotherapy. I am on Tamoxifen because my cancer is slightly different from your mum’s. A year of herceptin is normal for her kind of cancer, and again loads of people here can help you with that.
Your mum will be very glad of yout support - but make sure you get some too. Quite a lot of daughters (and a few sons) post on here, so look out for them too.
Hope all goes as well as it can for you and your mum.
Hi Jen, you are clearly doing all the right things by seeking information and support to help you support your mum - you sound a lovely daughter. I am 47 and have just finished a lot of my main treatment for much the same diagnosis back in January last year. My diagnosis sounds very similar to your mum’s. Mine was Grade 3, bilateral mastectomy, all lymph glands removed to find 6 affected. I then had chemotherapy followed by radiotherapy which finished last Friday and am on Herceptin number 6 - will finish that next April - and am on Tamoxifen tablets for 5 years. It was all very distressing to start with and scary but all the doctors, nurses etc. will guide your mum kindly and supportively through every step of the way so that, at the point which I’m at now, I can truthfully say that I don’t know where the time has gone. I was dreading chemo and there were times where I felt pretty lousy but it was very short-lived and quickly forgotten now I’m out the other side. Tell your mum it’s a bit like childbirth - painful to start but quickly forgotten and well worth it! I had bone scans and organ scans as your mum is bound to have and they were all clear. Please tell her to try just to take one day, one appointment at a time and not to worry too much - easier said than done, I know. But absolutely honestly she may not suffer too much with her treatment. Everyone is different I know, but people have been really surprised when they’ve seen me and said they had no idea I was undergoing treatment (a very good wig and carrying on wearing make-up and feeling proud of myself helped). Your mum will look back in a few months and realise that it is manageable, particularly with such a supportive family. Lots of love to you and your mum and best of luck.
Fliss x
It’s a bad time at the moment and it’s all very scary. It does get better - honestly.
I had 3 out of 24 nodes affected and also had chemo etc. I was 56 when dx and it was a really scary time. Chemo isn’t nice but you do get through it. Just batten down the hatches and get it over with.
I’m now over 3 years out from dx and feeling fine. Life does change though. You re-assess your priorities. So family comes out top!
Your Mum will value your interest as I did, and will come out the other side as YOUR MUM.
I’m not in the same diagnosis group, but do have a friend at work who had serious node involvement (numbers in the high teens I think), large tumour and had chemo before surgery to shrink it, had WLE then mastectomy, and is absolutely fine 6 years post diagnosis. Not sure what her grade was though.
S
Hi I was 50 when dx with grade 3 18mm no node involvement, had wle with snb in jan this year. Had 6 lots of fec followed by 15 rads & 5 years of hormone treatment(post men). Tell your mum it is doable, hard but you do get through it, I finished rads last week & am going on hols next fri then back to work a week later. It now seems like a life time ago that I started this, with support she will be able to do this, what a lovely daughter she has to think about finding out as much as you can for her. best wishes to you both xx
Jen, the beginning of all of this is the most acute phase for you, when all the fears and terrors are at their worst. I’m not saying things miraculously turn easy, but you kind of get used to it, if that makes any sense. And judging by the number of people on these forums who are busy working hard at getting through it, that should help you realise that it really is manageable, and in the darkest moments there is always someone to talk to, and a place to ask questions.
You are very welcome on the forums, feel free to ask any questions you might think of - THERE IS NO SUCH THING AS A SILLY QUESTION, so if you think of something that’s bothering you, or even just that you’re curious about, go right ahead and ask.
The number of nodes involved isn’t a particularly accurate indication of “seriousness”, they tend to pay more attention to scans. If there’s node involvement that just means that the nodes have done their job and filtered out the cancer cells, so it’s still seen as “primary”. You’ll get used to the terminology (sadly, we have all had to) but for now, just you being there and interested and willing to give support will matter so much for your mum. She will probably also be feeling worried for you and your dad, so make a point of letting her know that you will be supporting each other. That was certainly my biggest worry, how my family would cope with it all (there seemed to be so much support available for me but very little for them) so knowing that you have found a source of support will be a big comfort to her.
