thank you Jan for your help and support. I am not where you are atm but we are all in this together. I am a newbie on here but I hope I can give support and loving help to those who need it. x
What a joyous name to use on the forum. I wish I’d had such imagination! I’m sorry you’re here but I can answer both questions from my experience. So here’s my experience (I dislike the word ‘journey.’)
I took myself off to the GP because I notice two small raised freckles on my areola. I never thought of breast cancer but my mother had had it twice so it seemed sensible to check. My GP was perplexed but not worried but she found a lump between my ribs, underneath a scar from surgery 30 years before (a fibroadenoma). She decided it was scar tissue but, because she hadn’t seen a symptom like this before, she referred me on. The breast consultant was equally not concerned about either and an ultrasound revealed nothing (I already had a clear mammogram). (Diagnosis 1) He decided the do biopsies on the freckles “just in case”.
Biopsies revealed cancer. Consultant “shocked”. I could have a partial mastectomy and radiotherapy or a full mastectomy as this cancer must come from somewhere. (Diagnosis 2) Another mammogram and another ultrasound with a different radiologist (ouch). He found two tumours, the original ‘scar tissue’ and another under the nipple so he did a sentinel node biopsy.
Diagnosis 3: I would need a full mastectomy and radiotherapy.
Diagnosis 4: sentinel biopsy revealed 3/3 samples infected. I would also need full axillary clearance and probably chemotherapy.
Diagnosis 5 followed surgery: 19/21 nodes removed were infected. The tumours were different cancers. Some margins were limited. Chemotherapy was essential.
So I went from nothing to worry about to a lot to worry about. THEN I had my CT scan (an area of concern in my centre chest lymph nodes - sorted by chemo - and no spread elsewhere.
After that, I had a bone scan (no spread) and later an MRI (no spread). Thank heavens for lymph nodes.
My region doesn’t deal in grades, only stages, but I went from stage 1 to stage 3 (upper end) in 3 weeks. I went from options to no options in 3 weeks. That’s when I thought Dammit (ruder actually) there’s nothing I can do about this except do as I’m told. I mentally switched off, asked as few questions as I could and got through chemo and radiotherapy, with a bout of neutropoenic sepsis thrown in for fun. I’ve been cancer free since surgery (October 2018) and declared NED (No Evidence of Disease) January 2019. I am a walking talking mass of side effects but I don’t worry about recurrence - statistics are pretty meaningless in reality.
The fact is, you’re not unlucky at all. Their thoroughness means you’ll get the most appropriate and effective treatment now for the cancer cells that have been revealed. If you’d had treatment for stage 1 bc, eventually things could be much much worse. If my GP had stuck with “I’ve not seen anything like this before” or if my consultant had stuck with the first ultrasound diagnosis, I’d be living happily right now but then find, come routine mammogram, I had stage 4 bc. Ifs don’t matter. To use a cliché, it is what it is.
I hope I don’t sound harsh or unsympathetic. My heart goes out to you and I hope that your treatment goes well for you but you are cancer-free now - whatever lies ahead is to make sure it stays like that. It’s not an easy ride but it’s all manageable. Meantime, take good care of yourself, particularly anxiety, stress and sleep. There’s loads of advice and support out there to help you (please don’t google anything about cancer - it’s disastrous, believe me) and, as Evie says, you’ve found the right place.
All the best, Jan xx
Hi Sunnyplus - a big welcome to this lovely forum, and hope that you will find it supportive and helpful as you go through treatment and recovery.
I’m not sure I can help with your specific question, but I hope others will be along. Or you may like to call or message the lovely nurses on here - their phone number is at the top of the page, or you can start a topic on the ask a nurse section. Have you tried calling your own breast care nurse at the hospital? And when is your next appointment with your surgeon/doctor? Maybe write down a list of questions you would like to have answered, so you don’t forget anything.
I am not medical, but I think it is only when they do the operation that they can get the full picture of what is going on, rather than from a small biopsy. I have read various other stories On here about people whose diagnosis has changed once they had the operation.
I hope that helps a little, but do follow up with your team. Some people want answers, others don’t want to know very much - it is very personal. And please keep chatting on here with any other questions too, nothing is too big or small and everyone on here just “gets it” without you needing to explain.
Big hugs, Evie xx
In early Sept I was told I got BC when having a mammogram and ultrasonic scan. 2 biopsy taken. A week later, a breast consultant called me to confirm the diagnose (an early stage BC, 22mm, G1, no sign of lymph nodes involvement). I was recommended to have an operation first. I asked if I can have any other tests before my operation such as a CT scan to confirm no spreading to other parts of my body. I was refused. Has anyone with an early stage BC been given any further tests before operation?
I had a mastectomy (my choice) about 4 weeks ago. I was shocked by the post operation results - 34mm (bigger), G3 (higher), one of 3 lymph nodes shows micormets. I understand that the initial biopsy may not be fully accurate, but is it unusual for the jump from G1 to G3? Has anyone else ever been in this unexpected situation?
Feeling really unlucky recently. I'm glad to find this forum. Hello, everyone. My first post.