I was diagnosed with a 4.4cm, grade 3 tumour in the upper, outer area of my right breast. My hormone markers were ER+ and PR+ (8/8). During examination, ultrasounds, mammograms and MRI with contrast, there was no indication of lymph node involvement.
I had surgery on 29th October. A round block mammoplasty with SLNB.
My breast is recovering well. I’m only 43 but it looks extremely perky compared to my left! I’ve got cording in my armpit which is slowing my recovery down.
Anyway, I got my surgery results yesterday and my surgeon got clear margins so it was a successful surgery.
However, from the SLNB, two nodes were removed and cancer was found in one and precancerous cells in the other. I was so focused on the breast surgery and had lulled myself into a false sense of security about the lymph nodes because there had been zero indication that they were involved. This news has surprised me more than the initial diagnosis.
My treatment plan was always going to involve chemo. And that hasn’t changed. I’m going to need surgery after chemo now to remove the majority of my lymph nodes.
I’m not worried about another surgery. I’m worried that the cancer spread to my lymph nodes.
I’ve been told it’s still classed as early breast cancer so they’re not requesting a CT scan. But I’m starting to catastrophise. I’m so worried that this f**king cancer has got into the lymphatic system and is now deposited all over my body. I can’t stop worrying about it spreading and becoming secondary cancer.
Hello, I’m still waiting for my results from mastectomy and lymph removal in 9th Oct. It must be a shock. I’m also concerned I’ve not have any other test/ scans. I am so sorry you are going through this. I completely get the worry, my team are not great but I’ve phoned the helpline here and that’s been really helpful. Big hugs to you. Keep reaching out
How you are feeling is completely normal, I think we’ve all felt the same who have lymph node involvement if it helps ease your worries had mastectomy with full node clearance in October 4out of 17 nodes were positive I had a ct scan following results and it was all fine I felt exactly as you did before I got the results. Chemo next… bring it on! I want my life back xx
@emilyxxx do you have a start date for chemo yet? I’m just waiting for an appointment to meet the oncologist now. I’ve been told I should get that appointment within the next 2-3 weeks. But chemo is likely going to start in the new year.
I had a stage 1 diagnosis before my surgery and I had come to terms with all that was ahead of me, I was definitely getting chemo due to HER2+. However 2 nodes were removed during my lumpectomy and 1/2 was cancerous. I was definitely thrown by being upgraded to a stage 2 diagnosis and a bit stressed similar to you about spread all round my body. However, it is definitely still early cancer.
I think it is totally normal to be worried when things seem to be changing but we need to try take each day at a time x
@bally8 You’ve hit the nail on the head. It’s because something has changed and that’s a new uncertainty for me. Where are you up to in your treatment journey now?
I just had my lumpectomy surgery last week and currently going through fertility preservation before I start chemo. My first oncology appointment is next week so I think I will know after that my chemo regime and start date.
@sheraldo yeh it’s been a while, I’ve literally had no appointments since I left the hospital after my mastectomy on10th Oct . I don’t know why there’s a hold up or what’s going on. It’s kind of lulled me into the “is this really happening” mindset and also isolating because I can’t deal with people asking me what’s happening
@bally8 I’m waiting on an appointment with my oncologist. They said it should be in the next 2-3 weeks. They also said it will likely be the new year before I actually get to start chemo.
@marg1 Would you consider ringing your breast care nurse? That seems like an unusually long time to wait for results.
With regards to people asking you what’s happening; it’s lovely that people show concern but it can be draining having to talk about it. Especially when you’re in the dark yourself.
Same story here, also 43 at diagnosis, 40mm tumour, no indication of cancer in nodes from imaging, but turned out to be in 4/20. However, I was offered a CT before chemo once it was confirmed to be present in my nodes. It identified some suspicious bits and bobs, which they followed up again after chemo to see if they’d changed (they hadn’t), and I had a third CT this week as a final check.
Hi, @sheraldo it was expected that I only had 1 lymph node involved so I had a sentinel node removal & lumpectomy last month. The histology results showed 5/7 nodes removed were involved which surprised everyone. My surgeon was amazing & requested a CT scan straight away and I got the results the next day. Thankfully it was clear.
I’ve just had all my lymph nodes removed now & more margins removed ref lumpectomy & waiting for the results.
@sheraldo well my clinic don’t have specific nurses allocated but I have a general line which I call every week and am told the same thing each week that they are not yet back.
My team are also not great … I emailed a week ago a list of questions and I have rung … no one gets back to me
When we have cancer we should get better support from the breast nurses and I feel I can’t complain as I don’t want to upset them looking after me for now
@marg1 and @blue3 I’m genuinely sorry to hear the experience you’re having with your breast care team.
I had lengthy delays getting access to the NHS, from getting the initial GP appointment to the first appointment at the breast clinic (6 weeks). That’s why I had my investigation and diagnosis done privately.
But my breast care team have been really good. If I need to speak to my breast care nurse, I have a number for my breast care nurse that I ring and I leave a voicemail. I was dubious at first but she always phones me back.
Is it possible for your G.P. to refer you for a scan? Maybe if you get a face to face appointment and explain how you feel and how it’s impacting your mental health they will refer you. I wish you all the best. , X.
The waiting is the worst - it will get easier when you have your treatment plan, I promise.
Remember, your MDT team only meet once a week on average, if anyone is off or if there is an emergency it can really set things back. However, I would give your breast cancer nurse an email or phone, just in case they need a jig.
But, & I can’t emphasize this enough, they will have you & they will see you through this.
Chemo is not always as bad as you’d imagine (I was tired & went bald, but only for 3 months…..had my 3rd haircut today), radiotherapy is alright as long as you do your exercises & there is amazing medication coming aboard all the time & the side effects are getting gentler - I’m starting something that has only just been passed in Scotland in January to stop specific protein cells dividing, to prevent spread ( I had very similar case to you).
Everyone says to fight cancer, but actually it’s a very passive thing for us - you just have to trust that the medics do their thing. But you do have to chase it & self manage a bit, but that’s the same as everything in life.
In the meantime, my advice is to think how you can build up your resilience & preparing with prehabilitation……I don’t think they tell you the necessity of this enough. I did a lot of yoga, strength building, online relaxation stuff, walks, seeing friends (to offload) & getting my comfies together. But if I had my time back, I would have gone to the gym a bit more - muscle loss is not great.
Hi, I’m kind of opposite to you in some ways as I had lumpectomy in inner upper left breast 3 weeks ago. I’m 49. My ultrasound and ct scan showed enlarged sentinel lymph nodes, and I could feel pain in them. I was anxious about them. I wasn’t as worried about the breast lump as it is what it is. The results are lymph nodes completely clear but the lump had gone into the muscle and he had to remove some muscle and the margins were tight. That is the bit I’m worried about now, particularly as the wound has started to get oozy.
Im sorry you’re going through this, I felt that very same way, that it was possibly all through my body. I think the last person to comment is right, take back control, do your exercises as much as you can, try some t’ai chi or qi gong for breast cancer, try not to let it all run riot in your mind. All the very best
X.