Jan, Mo and Pye,
thank you so much for your replies and advice... you really have been through the mill. This forum is great as you’re able to talk to people who have been there before. I suppose I was just a bit shell shocked at that appointment. You think you have it worked out in your head and then bang, the cancer bus hits again. I find I’m really good when I have information, no matter how bad it is. It’s the waiting that kills me. I knew I was impatient before but not to this extent 🤣
I hope the sun is shining wherever you are. Have a great Bank Holiday
Glad to hear your margins are clear, but sorry to hear that chemo may be on the table. Must be a shock to hear the tumor was so much bigger, I know mine was larger on the MRI than the ultrasound, but not by that degree.
Regarding chemo, my completely uneducated laymans suggestion is that when using the Predict tool, the larger the tumor size the higher the additional benefit of chemotherapy on survival rates. So if the benefit of chemo has gone from say 2% to 7% due to the tumor size then it would make sense they are now recommending chemo.
Hope the test results come back saying you don't need it though! All the best,
Hello Mel, I'm sorry you are in this position, such a difficult time. Jan has given you an excellent reply but just adding my experience. I totally agree with Jan about not googling things - but I do ask a lot of questions and my comments are based on what I've been told about my cancer. Bear in mind yours might be different. I've had breast cancer three times. First one just needed surgery and no more. My second, in 2017, showed as a grade 2 lump on the biopsy and they thought lump removal and radiotherapy would be enough, but after surgery they found it contained grade 3 cells as well. Having clear nodes is good news and I had a CT scan which showed no evidence of anything but I was told because grade 3 cells are more lively, if any had spread undetected there was a higher risk of them developing into cancer, which meant chemo was now on the cards as a precaution. I had the oncotype test to help decide because that looks at your specific cancer and gives a further result on how active any stray cells might be. My result was (just!) below the low risk line and I decided not to have chemo. It was a horrible difficult decision but my oncologist was really good, very patient and happy with my decision not to have it. Just to round off my story, last year I found lumps in the armpit back on the first side and had a full node clearance. Again there was no evidence of further spread but because it was in the nodes this time chemo was clearly recommended as a precaution and I went with it. Chemo was hard but "doable" and I'm very well now. Good luck with whatever you decide, listen to your team and maybe speak to the nurses on here, I have done a couple of times and they are brilliant if you want some extra independent reliable guidance. Love Mo xx
I’m so sorry you’ve found yourself in this situation. Sometimes it’s just hard to detect, it seems. If it’s any consolation, I had a clear mammogram. Even when I was referred with two curious and tiny spots on my areola and what might be a lump between my ribs (probably scar tissue from ancient surgery) nobody suspected breast cancer, not even the consultant. An ultrasound was also clear, I was a very naive bunny swanning in to my second appointment - I had a tumour, the biopsies on my nipples were both cancer so I’d need a partial mastectomy and radiotherapy or just a mastectomy. Next appointment after a much more thorough ultrasound and node biopsy, the news was worse; then worse again and, after a full mastectomy and sentinel biopsy, even worse - two Stage 3 tumours, one with no clear margins, 19 of the 21 lymph nodes cancerous, a skin outbreak....chemotherapy essential blah blah blah - I switched off into mental numbness.
All I can say is thank god for the skin outbreak or no one would ever have known. 18 months on, here I am, monoboobed, dealing with side effects BUT cancer-free since the surgery (Oct 2018) and all scans showing no evidence of spread despite the alarmIng signs. You use what I call the cancer language confidently - I chose to let that pass over me and handed myself over to their ministrations, trusting them to do what was necessary and right. I asked my questions later and was told it’s surprisingly common for the diagnosis to change as there’s only so much that can be revealed without invasive testing.
Whatever lies ahead for you, it’s all manageable. It sounds more scary than it is and society doesn’t help with its fearful and negative image of the disease (Though how you can put a positive spin on it, I don’t know lol). Most people now survive breast cancer and come out ‘smiling.’ Everyone reacts differently so ‘side effects’ mean something different each time. My advice would be to keep away from Google and ask your questions of your breast care nurse, call the nurses here (they are brilliant) or ask in the forums. The difference is that we humans can factor in the emotional element and use up to date Information. Google is full of alarming data that, as I learnt the hard way after a year of no questions, can scare the wits out of you without someone experienced to put them into your unique context.
While you’re waiting, focus on your mental wellbeing with meditation, mindfulness, running, whatever works for you. I found relaxation videos on YouTube an absolute boon. There will be a lot of waiting and heightened anxiety because of the risks posed by the pandemic but your team will do what is best for you. There really is no point in looking back because you can’t change anything (though I did demand my money back for the first ultrasound that failed to pick up anything!!). Trust your team. I wish you all the best, whatever lies ahead.
I got my results on Wednesday. Pre op the tumour was reported to be 19mm by ultrasound, 16mm by mammogram. Turns out it was 42mm and grade 3! Clear (just) margins and lymph node negative.The plan prior to surgery was simple. Radiotherapy and ten years of tamoxifen. My first oncologist appt has now been delayed by two weeks while they wait for Oncotype results. Chemotherapy is now a distinct possibility.
What I don’t understand is how the size was so wrong and why chemo if the margins and nodes are clear, what exactly would it be treating? Surely radiotherapy and tamoxifen would be enough?
Has anyone else been in a similar position?