Hi All,
I was initially diagnosed with dcis with a small amount of grade 1 invasive bc. I was relieved and despite going to very dark places I thought the lymph node biopsy would be negative - the nurse said it was very unlikely to have spread. My most pressing concern was the mastectomy and reconstruction etc…
Sadly today they’ve told me that they’ve found cancer in my lymph nodes. I presume they don’t know how many yet. They are referring me for a ct scan and I am absolutely tail spinning now. How can it be low grade, yet spread? This was all picked up via routine screening so I am totally symptom free.
Anyone else have this? Please send any messages of positivity. I am googling stage 4 cancer now as so far all the messages from the professionals have proved wrong. I am 51 with a 14 year old and 12 year old. Please help.
Hi Donna_51,
So sorry you find yourself here, I remember feeling quite traumatised after my diagnosis and similar to you I had a tumour and dcis and it had spread to my lymph nodes and so I had a CT scan. I got the all clear and there was no spread past the lymph nodes. I remember climbing the walls that week or 2 waiting for the scan then waiting for the results. I also googled stage 4 etc and had a lot of dark moments but for me it did get a lot better once I had a treatment plan in place and had started chemo. It is awful having to wait for the CT results so just be as kind to yourself as possible. Keeping my fingers and toes crossed you will get a clear CT scan result.
I also have a friend who 20 or so years ago had breast cancer, lymph nodes involvement, she had to have a mastectomy and chemo etc, she completely recovered and 20 years later is still cancer free!
Hope this is of some help.
Take care
Jenny
Thankyou Jenny - the whole process from the moment you get recalled after the standard mammogram is truly awful. It’s a waiting game and unfortunately, at every step I seem to be getting worse and worse news. You just about manage to get your head around breast cancer and having an operation (just) but then you get more bad news that means you have to go into an even darker place. I am absolutely convinced it’s spread… I just keep hearing more and more bad stuff and feel like it’s going to happen despite hearing positive stories from everyone else. Sorry - all too much. It’s awful but I’ve actually been thinking it would be easier to throw myself in front of incoming traffic rather than go through this and have my 2 boys go through it too.
Hi. Im sorry you find yourself here. I’m in a similar situation. I’ve had 1 tumour plus dcis removed and my sentinel lymph node was positive with a macrometastasis. I had 2nd op to remove all the lymph nodes. Now on the big pathology wait to see what’s next. I was told itvwas early stages,fully treatable and I’d need surgery,radio and tamoxifen. But now there’s all sorts of thibgs being mentioned including chemo. All we can do is wait and try not to worry. But it’s easier said than done. I’ve got 3 kids and I just keep telling myself that 1 year from now this will be over. Keep me posted and stay positive. Everyone on here is amazing and this disease is something we can conquer. X
Thank you for responding… this is all so awful.
Breast cancer not only spreads due to it’s own biology but also the biology of it’s surrounding tissue. So although one may have a lower grade, spread can and does quite frequently still occur. The good news is that because it’s grade 1, perhaps it made it to the lymph nodes but it’s very unlikely to have made it past it. And even if it has, it has an excellent chance of being controlled by medication for a very long time. It’s still slow growing and non-aggressive due to it’s personal biology.
Thank you - it’s just so hard trying to think positively when every time I’ve managed to think positively since this started, I’ve been knocked back down again.
The information gathering time is almost over and then you can start beating it back. This is by far the hardest time. I know it’s hard to stay positive but grade 1’s with lymph involvement have very similar if not the same long term prognosis of more aggressive cancers with no lymph node involvement. Treatment is very effective.
Hi Donna, I just wanted to say, you are not alone. I’m glad you found your way here. Together, let’s keep taking one breath after the other. Peace, Shaka
Hi Donna,
As has been said, waiting is extremely challenging, I guarantee you will feel better once you have a plan in place and are doing something against the C. You may also feel better on hearing my story:
I found a lump aged 38, it was C and had spread to my lymph nodes. It was grade 3 stage 2b. My children were 4 and 2. I didn’t think I would see them go to primary school. But I had surgery, chemo and 6 weeks of radiotherapy, then on to tamoxifen for 10 years. My children progressed through primary and secondary school, with us as a family not thinking about C all that often.
Then, when I was 50 came the sledgehammer of a secondaries diagnosis, the dreaded stage 4. My children by then were 15 and 13. I didn’t think I would see them do GCSEs let alone A levels, in my ignorance I thought it was a fairly immediate death sentence. But it isn’t. Treatments exist these days, which enable us to live quality lives for a long time. Here I am 5 years later, still working full time, university fees to pay- my children are 20 and 18.
So, whatever dark place you are in now, is somewhere we have all been, but there is light.
All the best
Kinden x
Thankyou so much for your post Kinden - I’ve been up all night worrying and thinking dark thoughts, obsessively looking at these pages/other cancer sites in the hope it might reassure me. Some does… some doesn’t. I’m trying hard not to think of the worst, but we do don’t we - especially as I’ve had more and more bad news every bloody time I go into the centre for results/meetings.
I’m so glad you managed to keep going through it all… treatments are sooo much better now so I’m sure you’ll be able to see much more of your children’s lives going forward xx
Hi - I’m so very sorry that you find yourself here. The anxiety whilst waiting for results etc. is so very hard. It’s very hard not to imagine the worst while waiting. I was 49 and my kids were 16 & 11. I was diagnosed Jan 22 with grade 2 ER+ / HER2-, that had spread to lymph nodes, which were biopsied at the same time, as I also had a lump in my armpit as well as my breast. I had a follow up CT scan which showed no further spread. I went on to have surgery, chemo, radio and now hormone treatment. All lymph nodes were removed with my initial surgery - and had spread to 3 out of 18.
Have they discussed a further plan with you yet? I found the nurses on the Breast Cancer now helpline very friendly and helpful, and talked through a couple of situations with me. I hope you get a date for your scan soon - and don’t have to wait too long for the results. Keep reaching out here for support too, we have all been in that dark place. Sending gentle hugs xx
Hi Donna - I was in a very similar position 25 years ago, although my BC was described as very aggressive at the time and my prognosis was poor. Only 2 lymph nodes were infected but many more were removed. By the end of the treatment (surgery, chemo, radiotherapy, hormone therapy for 10 years) my prognosis was good. Also this site, when describing the stages states “If your cancer is found in the lymph nodes under the arm but nowhere else in the body you do not have stage 4 breast cancer”. My cancer has returned now, so is stage 4 now, but I have seen my children grow up, get married and have their own children. But I do know people whose cancer has not returned. I wish you all the best and hope the CT scan gives you good news. You can phone MacMillan nurses and talk to them if you need to. Take care.
Thank you everyone 
“No stage in any of this will be as bad as these first few weeks and the waiting”. The radiologist who confirmed my cancer told me this as I left in tears. I was lucky to have my contrast CT done 2 days later and get the results on the same day but those two days were the worst experience of my entire life. It was like a knife to my heart each time my children said “Love you Mama!”
Mine was always in my nodes. That’s where I discovered it but the surgeon thought it was a cyst when I first saw her. Had mammogram and boom, it became cancer. Had ultrasound and boom, it was in my nodes. Had CT scan and no secondaries. All of a sudden I was grateful to ‘only’ have breast cancer. Had surgery and there were 7 affected nodes in total. Oncologist said to not even worry as 1 node can spread as much as 7 nodes so I’m trying not to worry.
People get secondaries without it in their nodes. We really don’t have the level of control that we think we do and cancer isn’t linear unfortunately either. Just hope for a nice clear CT scan and then the rest will follow and action will ease your nerves, I promise. The inertia and waiting is the worst thing on earth. If you can afford it, then go private on the CT to speed things up. Mine cost £650 on my insurance for a full body CT scan with contrast.
Go easy on yourself. All the processing you’re doing now will stand you in good stead for the journey ahead. It’s like the worlds worst epiphany! Xxx
Waiting is terrible and we are programmed at least I am, to think the worst. I would suggest you also get a breast MRI too but try and get it sooner than later. One thing I have learned is having more information at your appointment can give you reassurance and at times the onc team can wait until they see the outcome of one test before they do another. So ask them for this now.
I found surgery (bilateral mastectomy and node clearance surgery) easier than the waiting for results so once you have a plan you will feel way better. Think about the positives it’s still caught very early which is the main thing. I was like you no symptoms too and it is a shock to the system. Very best for your results. Xx
Waiting is so terrible and I’m sorry to hear you’re going through this.
I was in a similar situation myself. It’s quite common (that what I’ve heard) that BC spreads to the so called sentinel lymph node and stops there if you start the treatment. It doesn’t necessarily mean that it has started spreading everywhere (unless the CT scan says so) and it’s highly likely that you’re absolutely fine in this regard. Sentinel nodes are just the first ones that would pick up on any cancerous activity nearby.
Am I right in thinking that you are still waiting for the biopsy results? In my case, my sentinel node next to the cancerous breast was described as “active” (or something like that) during the ultrasound and the CT scan. However, when the biopsy results arrived, it was absolutely clean. Only the biopsy can tell the whole story and hopefully it will be a positive one for you!
Hi Everyone… I’ve had the CT scan (I went private in the end, luckily my husband has it via work and we realised all this was covered - nhs was talking about 3/4 weeks for appointment and results). Consultant just called and CT scan all clear. I never ever thought I’d be in a position when ‘just’ having a masectomy and full lymph node removal would be a good thing!!! I know this isn’t the end of anxiety and fear but coming from the v v dark place I’ve been in these last few days, I’m going with a bit of relief today. I actually smiled. Something Ive not done since Feb 29th when that recall letter landed on our doormat. Thankyou to everyone,
Oh I’m so, so glad, Donna, Yea! Let this feeling travel and light up your whole body because it is indeed a win. Now you can focus on the plan for treatment and with that comes a much needed sense of control. And even peace somewhat. Trials will still come but today is a good day 
@donna_51
Great news. Congrats on ‘just’ breast cancer. It blew my mind how fast I became grateful for that one!
If you’ve got private health care then you may find everything moves a LOT faster with it. I went from finding the lump to starting chemo within 6 weeks with all diagnostics, biopsies, CT scans, a full mastectomy and node clearance and a port insertion done in those 6 weeks. I’m very grateful for my insurance and being able to move so fast with it as my anxiety would have probably exploded even more by now otherwise x