Feeling scared and worried. Today my partner has had her pathology results following right breast mastectomy. She has invasive lobular carcinoma. Pre op the size of the cancer was
58mm. The results shared today - two tumors attached to each other total area 200mm. Clear margins achieved - one huge sigh of relief. The two lymph nodes removed both tested positive for cancer. We are back on Friday for full lymph node removal. I pray that there is no further lymph node involvement.
I’m looking for some positivity, has anyone else had such a large amount of cancer and lymph node involvement and come out the other side. My mind is spiralling, it’s been a lot to process today. Tomorrow, new day, positivity to resume.
Hi @desrev2015, I had a similar experience. Pre-surgery, my tumour size was 20mm, and lymph nodes looked clear, so stage 1. After surgery, it was updated to 120mm (!) and the two sentinel nodes were positive, now stage 3. I was rushed to a PET scan. It was the worst time of my life, worse than the original diagnosis. PET scan was clear, biggest relief of my live. I then had lymph node clearance, and of the remaining 8 nodes, one had micromets, but the others were clear. Big relief again. I then had chemo, radiation, and now on hormone blockers and target therapy. My active treatment was in 2023 and I coped really well. No sign of recurrence and my quality of life has been excellent. I’m here if you want to talk. Will be thinking of you and you partner and hoping for the best possible results.
Thank you so much for replying. We still can’t get our head around the vast difference in size post surgery. My partner copes by attending each appointment, listening to what is said and then takes direction. She wants to know as little as possible. She doesn’t really want to talk about it and I respect that is her coping mechanism. What imaging did you have pre surgery? I wonder if we should ask for a PET scan too. It worries me that despite removing the cancer, and achieving clear margins that the chance of spread and micro cells around the body is high. CT was performed pre surgery and was clear so I’m hanging onto this. We just want treatment to start, to zap the pants off what might be remaining. I am pleased you are doing well - I am sure it hasn’t been an easy journey. I recognise that mindset plays a huge part, and for the majority of the time we drive positive thoughts. However, yesterday I felt floored a little. I know it’s not me battling this awful disease physically, but I am riding on a few carriages behind. I just wish I could take it all away x
Hi, mine is slightly different as my tumor went from 25mm to 16mm, lymph nodes looked okay but actually we’re both positive with one micro and one macro mets, I had full axillary clearance of which the remaining 6 nodes were clear. I didn’t have any scans before my surgery, I went on to have oncotype test and then radiotherapy back in 23/24. I’m now on Letrozole for ten years but mine was ductal and not lobular so not sure what difference it can make, try not jump ahead of yourself and just wait until you get the next set of results.
Try to take it one day at a time and any questions please ask on here, everyone is super helpful and will know what you are both going through at the moment.
Hi im in a similar position. Pre surgery scans and breast mri showed 2 tumours measuring 23mm and 9mm and lymph nodes looked clear, mixed lobular and ductal. Post surgery histology showed a large lobular tumour joining up the 2 smaller lesions so it was documented as 92mm of invasive cancer with all 3 lymph nodes testing positive. I then had a CT scan which was clear aside from some tiny liver spots they think are benign cysts. Now waiting for liver mri results so still feeling stressed and anxious. Have full axillary clearance booked and told will now need chemo (oncotype was low so originally thought chemo wouldn’t be required). So im still very much in the thick of it like your partner and it has all been a huge shock and really knocked me emotionally. Can’t offer wise words but sending solidarity xxx
I completely understand the sheer anxiety, I think everyone feels better (or so I’ve read) when they know exactly what’s what. Stace my partner wants to know as little as possible, where I have researched what I can. ILC does like to hide when scanned - nevertheless I didn’t expect to hear such a huge difference in size.
Our consultant called on Friday, we are back this Friday coming for the remaining lymph nodes to be removed. Once these are tested we will know exactly what’s next. He did say to expect an aggressive treatment plan. We had scans pre surgery, no spread confirmed. It’s makes me think that considering our journey started on the 27/7 (first mammogram) - 4/8 MRI and CT plus biopsy - results 7/8 - op 22/8 - now further op, we should perhaps ask for another scan, I’m terrified it’s spread! It’s hard to remain rational in a situation where you have absolutely no control.
How are you coping, try to take one appointment at a time and deal with what is in front of you only. We are keeping as busy as we can (a new puppy has kept us occupied). It’s frightening and crap and unfair. However, talking helps. Happy to keep chatting. When is your op? And were you scanned pre surgery?
It sounds like they’ve moved a lot faster with your partner than they have with me. My initial breast clinic appt was 23rd june. Surgery was 28th July. Full axillary clearance booked for 22nd September. I’ve not yet met an oncologist. It all feels painfully slow and I’ve really struggled with my mental health and high anxiety throughout. Now taking metazipine for anxiety which is really helping xx
Hi @desrev2015 I didn’t have a CT scan initially. If your partner already had one, it probably does the same job as the PET scan I had. It is wonderful news that it was clear. Things seem to be progressing really fast. Where are you based? I’m in East Kent and everything took ages. Ages. Anxiety through the roof. I was very happy when the days to have surgery and start chemo arrived. The weeks of waiting were definitely worse than the actual recovery from mastectomy and 5 months of chemo! x
We were back with the consultant yesterday. He confirmed all cancer from the breast has been removed. There were multiple tumors on top of the larger ones mentioned above.
The lymph nodes x 2 had overspill - I am sure there is a medical term but I can’t remember what it was
Op this week as suggested, on Friday. Once healed straight into treatment. I feel a bit more reassured. In fact I burst into tears during the appointment. We’ve had such a lot on with family members also being in hospital, new job, puppy, and juggling life in general.
When is your pre op? How are you keeping occupied.
We are based in Northampton, luckily we are covered privately so things have moved at pace which we are grateful for.
It’s great to hear the positives from your journey, what were your hardest parts? Any tips during chemo and radio that you can share? Stace is going to cold cap in the hope of keeping as much hair as possible. However I hear some people really struggle - we will at least try.
We were back with the consultant yesterday, he is confident that despite the sheer amount of cancer, he has removed it and gained clear margins. There was lymph node involvement x 2 and both had spilled over with cancer. This made my mind race, but it can happen and more than I initially thought.
Surgery Friday, then onto treatment. I pray the remaining lymph nodes are clear.
We’ve been to the theatre this evening and both spoke of how life feels so upside down. Like we are floating and we can see a road ahead. We remain positive and do all we can to keep upbeat.
Hi @desrev2015 , I had a lumpectomy with lymph node clearance in June. Pre op, I had two lesions very close to each other - one was 30mm and the other was 18mm - and approx. 5 lymph nodes. Surgery went well, I had reconstruction at the same time. At post op, I found out the 30mm was actually 77mm and the smaller one was about 30mm. I also had 23 lymph nodes removed and 8 of them were cancerous. I ended up having 140mm x 150mm of my breast removed. I’ve come out the other side and my recovery, although hard at the beginning (plus we had that awful heatwave the first week after my surgery), I’m doing really well. I did the exercises as instructed and have full movement back. I’m now waiting to go onto chemotherapy.
I’m here if you need a chat. Thinking of you and your partner, and hoping it all goes well xx
I had ductal cancer. 24mm - but 6 out of 17 nodes had cancer. I had surgery, chemo, radiotherapy.
That was 12 years ago now. My underarm is still a little stiff from scar tissue, so definitely try to keep moving your arm and do the exercises. But I came through even after it had spread so extensively. Good luck and I hope this brings a glimmer of positivity into your day, it can all work fine in the end.
Hello @desrev2015 I’m sorry your partner is going through this. I had lobular BC in 2024, I was diagnosed in the October and 3 weeks later had a mastecomy. It has been missed on numerous scans for over a year. I had 3 tumors that came to 10.5cm and 1 lymph nodes removed. I had a CT and PET scan after surgery once they had the biology back so I would push for a PET, better to get full scans for peace of mind I feel. Have everything that it’s not in any more lymph nodes, and hope the treatment goes well, here if you have any questions.
How is your partner doing after the axillary clearance? I hope she is well. I have mine on Tuesday and feeling very nervous. I sailed through the first surgery, barely any pain and was active and able to go for walks almost immediately. It all feels completely fully recovered now 6 weeks later and im so disappointed to need further surgery and in particular a full clearance xx
Morning, they kept her in overnight as her surgery was later in the day. She said the pain is a lot better than the mastectomy. She was groggy and tired. I’m heading back shortly to bring her home. From what she said it’s a smoother ride than the breast removal as she struggled with the pain for 2 days. Her biggest gripe is having a drain again Will you be staying in? Sending you well wishes. Keep me posted.
So pleased to hear she is doing well, thats fantastic news! I bet you cannot wait to get her home. Time for some well deserved r&r.
I had a mammoplasty on the affected breast and a reduction to the other breast last surgery, I didn’t have a mastectomy. Plus the sentinel node removal. I didn’t need a drain but they said I’ll have one this time. Very nervous for it. Im on the morning list so im hoping to get home same day. Will be another thing crossed off the list.
Wishing you both all the best, and really hope she continues with a smooth recovery
Hi, sorry for taking so long to reply! I moved to private after my initial surgeries as well. Things progressed much quicker. I had 16 rounds of chemo and wore the cold cap in all of them! I found it very bearable. Unpleasant, but not painful. I kept 60% of my hair with no obvious bald patches, so it felt like a big win! So definitely worth a try. I also kept working (from home), which was a good distraction. And going for walks every day really helped! xx
Don’t worry too much about the drain, it’s more that it’s in the way! The ward gave us a cross body drain bag, which helps massively. Made out of fabric - saves carrying the drain by hand. I’d recommend one.
Another hurdle complete, once the results of the lymph nodes come in I imagine we will be straight into treatment. It all feels surreal, our life just stopped spinning. And the dreaded c word lingers in everything we do. We have bad days and good days - and a new puppy to shower with love. He absolutely distracts us.
Do you have any indication of your treatment plan? Take care xx
16 rounds, wow how did you find it? How long did each session take? Stace has opted to have chemo at home.
We now have a puppy to keep us on our toes and we have purchased a touring caravan. That way we go away - even if only 30 mins away it’ll be good for Stace.
If you had any top tips what would they be?
You are now firmly on the other side I assume, embracing life and all the small things we perhaps take for granted. Go you! x
xxx
that it’s not in any more lymph nodes, and hope the treatment goes well, here if you have any questions.
Will you be staying in? Sending you well wishes. Keep me posted.