Hi on Tuesday (18th June) I was diagnosed with right breast invasive grade 2 (NST) hormone receptor positive & HER 2 negative. Just wondered if anyone else has had this type & what treatments etc they received.
Hi @shelbylou81. So sorry that you find yourself here but great people on here will be a source of fantastic support. My diagnosis was the sane on December 18th last year but on left side. I would imagine you will have surgery then radiotherapy, followed by 5 to 10 years of endocrine therapy (to stop you producing oestrogen). Have they told you a surgery date yet? Good luck with everything x
Hi Thankyou for your reply. Yes I have a surgery date of the 23rd July but I feel really anxious as this is 5 weeks since diagnosis. My consultant has recommended that I have a lumpectomy followed by radiotherapy & they won’t know until after surgery if I will need chemotherapy. What surgery was you recommended to have? I have also got to go on hormone suppressant tablets too.
Hi
My diaognosis was the same as you but on the left side. I had a lumpectomy and slnb, I then had to have the rest of my lymph nodes removed as it was found to be in the two they removed at the first operation.
My first operation was four weeks after diagnosis then had to wait 4 weeks for those results then another 2 weeks for 2nd operation it then took another 5 weeks for those results. At this point I was offered the oncotypedx test to see whether I would benefit from chemo, it came back at 11 so I didn’t have it.
At this point I was referred to oncology and I had five days radiotherapy where they found a benign cyst on one of my kidneys at the Ct planning scan.
I am now on bone tablets for 3 years and letroxole for 10 years, yearly mammogram and bloods taking.
It took about 7-8 months to go through all this but I know every trust is different.
As you travel through this it really is a roller coaster with a lot of waiting at the top of it.
I wish you well and hope you get a smooth ride, the ladies & men on here will all be there to help and support you on it
Take care
Xx
Hi @shelbylou81 it’s understandable that you’re in a bit of shock but Er+ HER2- is the most common form of breast cancer with around 65-70% of people having the same diagnosis as you’ve had. So you can be reassured that the team treating you know exactly what they are doing as they are treating this cancer day in and day out.
I had a Grade 1 stage 1 Er+ HER2- diagnosis and I was told that I would have a lumpectomy, radiotherapy and endocrine tablets but that they couldn’t rule out chemotherapy until after surgery and the tumour had been analysed. So you’ve been told exactly what we all get told as the histology of the tumour cannot be accurately determined without extensive testing which can only be done when it has been taken out.
Try not to worry about the length of time that you have to wait for surgery. I waited six weeks and was reassured that Er+ cancers are slow growing so it is not running riot in your body whilst you wait. After surgery there will be another wait whilst all the testing is done. It’s frustrating but once the results are in, the treatment plan will be put in place and you can go forward positively towards a cancer-free life.
@chillout365
Thankyou for your messsge, it’s nice to hear other people’s experiences of what they’ve had treatment wise etc. it feels reassuring to know that your not the only person going through all of this x
@Tigress
Thankyou for your reply. It’s so overwhelming when you are told that you have cancer so there is always questions you have & this forum is great because it’s people who have all had the same experiences. It feels reassuring that so many people take their time out to help people through each stage of this. X
Couldn’t agree more on this. When I was first diagnosed with ER+ HER2-ve BC (in lymph nodes too), I was so overwhelmed with the types of BC. My consultant said to me “Yours is 8/8 for Estrogen and that’s amazing news!” It’s only now, after surgery and going into my last chemo in 2 weeks that I realise how right she was. Despite being Stage 3 due to the spread to nodes, the options to keep any rogue cancer cells that have escaped my surgery/chemo/radiotherapy, I will be having my ovaries removed to reduce estrogen load, taking tamoxifen to block cancer cells from absorbing estrogen and will also be given Abemaciclib to continue to attack any little buggers that have hung around. Despite being rife in my nodes, my prognosis will be over 90% for a 15 year survival which is insanely high. The prognosis for the general population at 43 to still be alive in 15 years is 95%.
My treatment has been:
Full mastectomy and node clearance
Chemo - ECT (Epirubicin and Cyclophosphamide x 3 and then Docetaxel x 3)
Radiotherapy - 3 weeks x daily (Mon-Fri) so 15 sessions
Elective Ovarian Removal
Tamoxifen forever
Abemaciclib for 2 years.
You’re in the overwhelming bit right now but it gets so much easier once there is a plan for you to follow!
Really ask questions about the surgery and whether a lumpectomy or mastectomy is best. I’m assuming from yours that you don’t have lymph node involvement? That would take node clearance off the list and maybe chemo too if you’re lucky! Chemo is, without a doubt, the hardest part of the entire thing.
Good luck and keep asking questions and researching. The more I go through this, the more I see the benefits of advocating for yourself xx
I had a similar diagnosis in March. I had a mastectomy as they also found pre cancerous cells as well as the invasive tumour. Mine was stage 3 as it was found in lymph nodes from biopsy and MRI scan. I’m now having EC then paclitaxel and radiotherapy. And hormone tablets after and Abemaciclib. @swk1981 Thank you for your encouraging response. I was told I was at high risk of recurrence but I didn’t ask for percentages as he asked me to think about it before and he can give me the answer. I decided not to know.
@swk1981
Thankyou for sharing your diagnosis/ treatment plan with me. They said the scan of my armpit looked clear so don’t believe it to be in my lymph nodes so hopefully that’s a positive. I’m trying to be as positive as I can but it’s also causing me a lot of anxiety too. I have 3 children that are 21, 19 & 12 so I just worry about them & how they will process what’s happening etc. it’s so much more than just the diagnosis it’s the impact is also has on the wider family too x
@rosa1
Thankyou for sharing your diagnosis/treatment plan with me. Wishing you all the best going forward x
I’m the same with 3 kids (15, 13, 9) and we waited until we knew the plan of action and then told them. To be fair to them, they’ve coped better than we ever expected. In a lot of ways they’ve thrived. Everyone in my family has because we’ve all got a new perspective on life and not much really matters or can stress us out. The kids have found a level of connection that I’m not sure they’d have found for decades because we’ve had to pull together so much. The whole journey is hideous in many ways BUT it has kicked out some of the most precious upsides to us all too. Now that I’m starting to come out the other side, I’m not sure I would trade it as we’re all happier and calmer and more positive than we’ve ever been. Xxx
Big respect to you for this reply @swk1981. Finding the good out of the bad is so hard to do but so worthwhile when it’s been done. I think your point about potential survival is so important too. At the early stage of diagnosis as @shelbylou81 is, it’s so easy to think of it as having “the big C” which, for many, is equivalent to a death sentence. Breast cancer is not that at all. Firstly, breasts are not organs so people do not die of a primary breast cancer. Preventing spread to organs or bone marrow is the basis of treatment. So once treatment starts, you will be doing everything that the medical specialists believe is necessary to stop recurrence. Survival rates are up in the 90%s (the remaining percentages die of other things) for primary breast cancer so, whilst it will be a shock for your kids that their beloved Mum has cancer, it is important to be as positive as you can because there are very high odds that you will get through this and out the other side.
Hi again @shelbylou81. I had a lumpectomy and slnd about 5 weeks after diagnosis. It was scary as i hadnt ever had an operation but it was fine and pain free. It was in my lymph nodes and they hadnt got clear margins on the tumour either, so had node clearance and a cavity shave and since then a third op to do a second cavity shave. Now waiting for results to see if I’m needing a masectomy or onto chemo. I have 3 kids too, who are 9, 11 and 15. They’ve coped brilliantly so far. Like @swk1981 says, there have been positives out of this too. I have more perspective on life and as a family we’re tighter. We’ve been more spontaneous and spent more time together too. Sending you and courage x
Hi shelbylou81. I had a similar diagnosis in Nov/Dec 2023, but in addition to a G2 tumour in the right, I had 3 smaller tumours in the left. I was given letrozole hormone therapy tablets in Nov 2023 whilst further investigations took place. By the time I had surgery in March 2024, the letrozole had significantly reduced the size of the tumours. I had a lumpectomy with a sentinel node biopsy on the right and a mastectomy with a sentinel node biopsy (snb) on the left. When looking at your options, talk to/get information from as many sources as you can, ideally someone who has gone through it and can really talk about what it is like - although everyone is affected differently, physically and emotionally. My lumpectomy was relatively straightforward compared to the mastectomy. The drain from the mastectomy side was taken out because I couldn’t handle it emotionally (blood in a tube coming out from me), but this may have caused or increased the fluid build up I had. I also had an infection on the right lumpectomy side at the site of the snb and have a lump of scar tissue as a result; I’m told that this will decrease in time. I had 5 days preventative radiotherapy on the remaining breast, right side; apart from a little redness, discomfort, this was OK. I don’t mourn the loss of the breast on the mastectomy side, but no-one told me that I would feel hard areas - as no breast tissue and ribs underneath! Knowledge is good - but can be overwhelming - keep talking to people.
@albertina
Thankyou so much for taking the time to share your diagnosis/ treatment with me. I really hope you are feeling a lot better now. I am going to get a 2nd opinion just to talk through all the options again & to try & work out what’s best for me. Take care & thankyou again.
I know I was diagnosed with Her2 had lumpectomy on left side, thought it was going to be radiotherapy but then once got results didn’t think was in lymph nodes but was in 1, wanted rest of lymph nodes out found in 1 more. So had 3 lots Fec & 3 lots of Docetaxel every 3 wks with a year of herceptin every 3wks & 10yrs of tamoxifen, I’m still here after 13yrs!! I’m not going to admit was quite hard but I’m so grateful to all the consultants & medical staff. From then until now all treatment changes so fast because now I’ve heard when get herceptin it’s through injection, at the start it’s like a dark hole for a while but when you get going with treatment it will eventually pass, so everyone stay strong you can do this.x
Hi Shelbylou81
I had a lumpectomy and SNB on 8th June, got my results on Friday. Stage 2a grade 1 IDC, unfortunately it was in 1 out of 6 lymph nodes. Clear margins so no more surgery e
They have said chemotherapy is up to me! As there was only a 1 1% benefit on the Predict, the risks may outweig h the benefit. Although I have 1 node involvement, the grade is low
19 sessions of Radiotherapy and hormone therapy for 5 years.
I feel relieved knowing my results, the waiting and not knowing is torture.
I am not out of the woods yet and have some decisions to make regarding adjuvant therapy.
Hope this helps, sending
Well done you!!! So pleased for you wish I was at that point of my journey xx surgery due 3rd July double mastectomies xxx
Hi, it sounds like we’re pretty much had the same stage. I was diagnosed on 17th June with provisional stage 1 Invasive Lobular Carcinoma. The surgeon recommended a single mastectomy (right side) as it’s a biggish tumour and I have small breasts, so just getting my head around that. Like you, the couldn’t see anything in my lymph nodes on the scans. It’s all such a rollercoaster isn’t it, and so many uncertainties. But there is so much to be positive about and thankful for when it’s early stage. I have 14 year old twins who are handling all of this amazingly. As someone else has said, treatments are so much better nowadays, and I’m hanging onto that!