I posted a couple of weeks ago as I was/am as anxious as you sounded in August. How are you now? Where are you with your treatment?
I have TNBC diagnosed March '19, neo adjuvant chemo x 6, clear CT end of June, lumpectomy and SNB 28th Aug, recon & axillary clearance 19th Sept (good clear margins achieved), then 2 Carboplatin.
My 3rd Carbo was put on hold due to low cell count a week before Christmas and at the same time, 12 wks after surgery & clear margins, I found another tumour, same breast. My anxiety was/is off the wall.
On 24th Dec my US & biopsy confirmed a new cancer and I then had another CT with clear results New Years Eve.
So......I've now started rads, 3rd of 15 today, pre-op 7th Feb and then mastectomy and Diep recon soon after. This tumour started out at around 1.3mm, so small, but it is growing fast and I'm finding it hard to keep a lid on the panic I'm feeling now. I'm terrified it's spreading because it came so quick and it's growing so quick. I'm waiting to speak to my BCN tomorrow for some reassurance, but I get it, I understand your pain and I'm sending you huge hugs and all my best wishes for some positive outcomes.
Yes, I am seeing the OC on Thursday for the follow up from the US and the MRI for the "benign liver" lesion the CT radiologist described it as. I am just feeling like they're going to tell me "Bad news. Its not benign after all" due to all of the dreadful follow ups and bad news appts.
I have written to my BCN 3 times over the weekend begging for her to get back to me about the "few sub cm nodes found" on the CT scan report just some idea of what that means.
I have come to this mindset
This is technically reoccurrence (I think?) albeit VERY early so it can be handled with during my current treatment which is much better than them finding it on the one yearly follow up mammogram. I asked the CT radiologist if it was a new cancer and he said "yes"
By new I meant "new and separate to the original one removed because I still had margins to come out from that one so I knew there was diseased tissue still in my breast.
I am wondering has it grown from the remaining margins or is it new and separate to the original tumour. But he did say "yes" when I asked if it was new so Im assuming its an unrelated tumour.
Honestly, I am thinking of having both breasts removed and implants. I dont ever want to have to go through chemo again. I am doubtful I will be strong enough to bounce back after this 6 rounds its been brutal so far.
Anyway, thank you xxx
It sounds like you are experiencing a few more twists and turns on the bc rollercoaster than many of us do.
Do you have a follow up appointment with your oncologist soon to discuss the latest position? This would be the best time to ask all the questions you have, including about the nodes (radiographers always mention everything they spot on scans, even if it's not related to bc). (I was once told I was highly suspicious of METS in the bone following a nuclear bone scan....a number of scans later it turned out to be old fractured ribs I never realised I had so you really need to speak to someone who can interpret the findings and that's the onc).
It sounds like they are being really thorough, which is a good, even though going through all the scans is understandably very stressful, particularly while waiting for results and subsequently awaiting full clarity via the oncologist.
Stick with it, take each day as it comes, try to take short walks, listen to the birds singing etc. Have faith that the medics are being thorough and write down all your q's ready for when you next see the oncologist.
(now 5 years on and visiting the forum to give back)
Firstly - Thank you for anyone who can reply to this I appreciate it. Im in a dark place.
T2N1M0 / E+ P- HER2- Grade 3
I was diagnosed with "early detection" a 24mm lump in May with the one "borderline" sized node testing as normal.
I had the lumpectomy in June and follow up in July which revealed it was actually 42mm (not 24m) and the one node turned out positive after all so I would need more margins (more surgery) an auxiliary node clearance and they booked me in for just over a month later. I wasn't happy with the waiting time.
Long story short, we started chemo first with a view to doing the surgery later. I had already decided for a mastectomy over another lumpectomy as I just want peace of mind and so get it all out and done with at 4cm tumour size in my mind.
I had my first round of chemo 5th August. Was in bedroom curtains closed for 8 days and nights. Had to go A&E for morphine intravenous due to the pain I felt in my legs and lower back (sacrum) I was writhing in bed crying out in pain and falling asleep when it faded now and again.
I went through all of the painkillers all the way up to liquid morphine and none helped other than the intravenous morphine which gave me 12 hours peace.
So not the best chemo experience but I got through the other side on day 9 to 12 I felt better, stronger, more me. I was so high with the sense of relief and achievement despite knowing I would have to do it again.
My oncologist wanted to "grade me" and sent me for a Torso CT scan 2 weeks ago. My BCN read the CT scan report over the phone to me (following being sent an appt in the post for a liver MRI which nobody had warned me about and me going mental with anxiety) and she said the CT had shown:
1 benign hemangioma on my liver - (Need MRI to confirm)
a few sub cm lymph nodes (which are too small to be described as effected by cancer but then why mention them at all?)
1 area of thickened tissue in my breast - Need ultrasound
1 small area of fatty cells to chest wall - no more investigation.
Yesterday was the ultrasound.
I assumed it was the margins that needed to be removed, I was told it was just for preparation of the surgery after chemo so they can see exactly where I am at before chemo starts to work.
But it turns out I have 1 or possibly 2 less than 1cm tumours that are new and separate to the tumour already removed in June. These I assume were not visible when I had mammograms and ultrasounds in May and have popped up since then which is just 3 months. I dont know much other than one MAY be a cyst but the other is cancer, new and less than 1cm in size. They took biopsies and I was told I would need a mastectomy now for sure.
They did NOT go anywhere near my armpit and I asked "Not checking the nodes?" and she replied "No its just this area in your breast" (Is that a good thing? That they weren't looking at the nodes?)
The CT Radiologist was present as the senior ultrasound person performed the ultrasound because she could not identify exactly what she was supposed to be looking for so after 35 minutes of trying to find this "mass" that was found on the CT scan she literally had to call up the CT radiologist who requested the ultrasound so he could stand with her and verify which area he was referring to. He told me it was new cancer and I would need a mastectomy now which again, I am ok about.
BUT - This new cancer has broken me.
I understand in the bigger picture these new cancers probably wont change anything in terms of my recovery or treatment and that the CT scan did not show secondaries which I am grateful for. But its broken me.
To know NEW cancer is growing in me after a lumpectomy in June and starting chemo 2 weeks ago on top of the follow up from Hell after the "early diagnosis"
I feel like its growing faster than I or the treatment can catch up with..
I feel like Im beaten...
Im just clinging to the fact they never looked at my lymph nodes at all but I WISH I had just asked the CT man "Are my lymph nodes not a concern then?" because I can only assume that as they never looked at them but then why mention them in the report in the first place?