I was diagnosed with grade 1 IDC BC ER/PR + HER2 negative with a lump measuring 15mm, in september. Ultrasound showed no lymph nodes involvment.
I have had my lumpectomy 4 weeks ago and was advised that it was a grade 2 IDC 20mm and same ER/PR and HER2. Thankfully my surgeon got clear margins but 3 or of 5 sentinel lmph nodes showed a few cancer cells in them. I am just worrying so much of spread. Every pain or niggle in my body I feel is due to cancer through my body I had my bone scan on Tuesday and waiting for CT and will get my genetic results in 4 weeks.
Does anyone know if its likely that it has spread to distant organs? I know it’s a impossible question to answer
I’m clinging on to the fact there was only a gew cancer cells in 3 and not 5 and my surgeon said I was in a grey area for chemo due to the risks against the type of cancer I have. I just keep reading that everyones sentinel nodes here all clear even with more aggressive cancers and worru mine is grade 2 and in 3 nodes
Hi d84, I was was confirmed as stage 2 with clear lumpectomy margins. However, they found cells in first lymph node. I also panicked a bit at this as I worried it had spread big time. I was reassured that as the 2nd nodes was clear it would unlikely to have spread. I was given 5 doses of radiotherapy and put on tamoxifen. I had my first annual follow up in April and no evidence of recurrence.
Sorry you’ve had to join us in this club. I was in a similar position, grade 2 with an 11mm lump, with 3 positive nodes out of 6 discovered after surgery - a huge shock. I then had a CT and bone scan to check for spread and at the time my surgeon said he wasn’t expecting it to show up anything, not that that really helped my huge anxiety at the time but fortunately he was right. Sending love xx
Hi Pollyann, thanks for sending a reply as much as it is horrible knowing many are in the same situation its reassuring that I’m not the only one with this diagnosis after surgery as I just feel like these positive nodes was just like a death sentence just all so scary and surreal at the moment.
Hi Poorlyboob, my surgeon said something similar about the 2 other sentinel nodes being negative but she wasn’t sure where in the sequence they were so was hard to say if this meant no other spread.
All so new just now and constant waiting for results. Amazing the amount of stress it give you
So pleaaed to hear you are doing well, that’s really brilliant!!
I know, the waiting is the hardest, but it definitely helps to know there are many others who have had node involvement and are still doing well years on. Xx
My BC tumour profile was IDC Grade 2, ER/PR+, HER- and I had 1 of 4 nodes that came back positive with some extra nodal deposits in the fat. I had a mastectomy as my tumour was multi-focal.
The steps after that for me were to have an abdomen thorax pelvis CT with a similar wait to you for results & the MDT meeting outcome before I was able to get results. So can understand your anxiety, the way I got around this was to keep myself busy with other things as much as possible.
When the results came back clear, I was given the option to either have Axilliary Dissection Surgery for Lymph node clearance or to be referred to Oncology to discuss other treatment options. I decided to have the surgery as I wanted to know if there were more nodes involved due to the extra nodal deposit that was mentioned in my pathology report and thereby have my oncology treatment to be more targeted.
No further positive nodes were found, I then had a OncoType DX test to determine Chemo benefit, but due to the low score it wasn’t recommended. I thereafter had Chest-wall radiotherapy and am now on endocrine treatment for 5-10 years. My 2 year anniversary is coming up in a couple of months.
You are still at the early stages of your treatment journey, so try and be easy on yourself while you wait. There were so many waiting steps during my journey that I can’t even recall them all.
Firstly, i am sorry to hear your news. It sounds like you’re getting excellent care as you’ve had a bone scan and ct scheduled. Many of us don’t get those as routine. These scans should rule out spread.
You didn’t mention whether the sentinel nodes were isolated cancer cells, micrometastases or macrometastases. This will make a difference to your nexr treatment plan. If the cancer in nodes is greater than 2mm, it is a macrometastasis. They might do an axillary clearance. But for less than 2mn, they might use radiotherapy and endocrine therapy. Genetic testing like oncotype dx will determine the plan too.
I had 1 positive sentinel node and it was 4mm. I had the axillary clearance and 1 more positive node was found out of 15. I did end up having chemo because lymph positive cancer is often blasted with chemo, especially in premenopausal women.
My surgeon didn’t mention the type of cells in my noses just that it was small microscopic traces so im hoping it is micromets. The MDT recommendation is saying possibily axillary clearance after chemotherapy should chemo be a treatment option as they have said I can go for rhe OPTIMA trial.
Its scary but in a way i am grateful to get scans. My father in law has stage 4 cancer and at first had his kidney removed but didnt get any scans just chemo but if they did they would have found he had a brain tumour and lung mets. Thankfully he is still doing well.
Great to hear you are doing well following your diagnosis
I have got the MDT recommendation which is chemo, optima trial and axillary nodes clearance following chemo.
Just all so much to take it but in July when i first went to my GP i’d never have thought I would manage this far and I have so I will continue to get through all this too. Some days are better than others.
Lovely to be able to be on a forum like this and know you’re not alone when sometimes it’s so easy to feel like you are.
I was diagnosed with bilateral breast cancer following a routine mammogram three years ago.
Had lumpectomies but node involvement was found one side so had node clearance followed by chemo and radiotherapy. Now on Anastrozole as I’m post menopause.
It turned out 11 of 17 nodes had cancer cells.
Sorry to hear of your diagnosis. Yes it is all very frightening and every little twinge rings alarm bells but we’re here telling the story. X
Just wanted to add a few information points which I gathered while I was going through my treatment journey.
The optima trial was mentioned to me during the stage I was waiting for my axilla node clearance surgery results as well. I did a search for it online, if you’re interested in understanding what it involves you can watch the short easy to understand explanation video available here.
So based on what you have mentioned above it sounds like you are being offered Axillary clearance surgery and after that possibly the option to join the Optima trial (it’s a randomised control trial) - which may or may not result in you having Chemo depending on which control arm you fall under.
For me after my CT scan came back clear & the axillary node clearance was also clear, my oncologist discussed next steps, & explained that that Optima trial was typically only recommended for those with a larger number of affected lymph nodes, & that as I only had 1 positive out of 25 she wouldn’t recommend it for me, but did say she would like for me to have the OncoType DX test to determine if there would be Chemo benefit. There are also the premenopausal vs postmenopausal risk factors, along with other tumour pathology related factors, genetic factors (BRCA) that may affect the recommendations being made too, so it is very much a individualised treatment plan.
Regarding the point of macro mets vs. micro mets in the lymph nodes, according to the NICE guidelines axillary clearance surgery (ALND) won’t be offered unless its macromets.
Hopefully the above information helps you along the way, to ask any questions you need to, in order to make the decisions that are right for you.
I had my bone scan on Tuesday and waiting for CT and will get my genetic results in 4 weeks.
