I’ve just also been diagnosed with IDC. At stage 1. 11mm and 5mm areas. Op date 3 May. So will find out after that if this remains the same. sorry you also find yourself in this daunting new world. There are lots of very helpful ladies on here that will try and help with any questions. your not alone x
Sorry to hear you find yourself in here, there are lots of helpful tips etc, I myself was diagnosed stage 2 IDC 26mm in September 21. Currently going through active treatment x
I am a newbie on here too. I have IDC also with two grade 3 tumours both larger than 22mm. Whatever your cancer, stage and grade… it’s such a lot to take in. A mastectomy has removed my tumours and I’m now on a course of Chemotherapy. It definitely helps to ask lots of questions and start the right treatment plan.
who would of thought you find yourself talking to strangers over a horrible situation. I hope your treatment plans are going well. another week for my op then another long wait to find out outcome. It’s just soul destroying at this point x
Sorry you find yourself here on this forum, but be assured you'll get loads of support here if and when you need it.
I was diagnosed last September Stage 2 IDC, same as my Mum in 2001, even down to both of us being ER+, HER- hormone receptive. The one thing I keep holding on to is medical science, technology and surgical techniques have moved in leaps and bounds in the last 20 years since my Mum's surgery and treatment. 20 years ago, my Mum didn't have hormonal treatment to stop the cancer being fed the oestrogen, but had to go straight to a complete mastectomy of the breast including all of the axillary lymph nodes. She modified her diet to ensure she wasn't eating anything that produce foto-oestrogens as well, just to give herself the best chance she had. Her battle lasted 6 years with some pretty horrific chemo and radiotherapy. Unfortunately some of her cancer cells between diagnosis and surgery, without the hormonal treatment had escaped and had metasticised to much of her soft tissue and organs.
By contrast, my diagnosis immediately had me on tamoxifen to reduce oestrogen production (I was 53 at the time of diagnosis, so peri-menopausal anyway). My surgery was a lumpectomy and sentinel node removal (the nodes closest to the tumour). My cancer was also aggressive like my Mum's as it turned out, as at diagnosis was told 'it was caught early, so only the size of a large grain of rice' to 6 weeks later at surgery, went from 18mm to 30mm and had grown a little buddy behind it which was 12mm in size. Four lymph nodes that lit up with the blue dye closest to the tumour were removed and sent off for analysis at the lab. Result was all four had cancer cells, so went from Stage 2 to Stage 3 due to size of main tumour and it had already gone to lymph nodes. Surgery for axillary node clearance 4 weeks after first surgery to the day, and out of the remaining lymph nodes removed, only one had cancer. Sent for CT scan and found that all my organs and soft tissue had no sign of cancer (phew!) but there were some fuzzies on my spine. I'd had spinal surgery as a child for scoliosis so we had hoped that the fuzzies were just scarring from that surgery on the bone. A full body bone scan was ordered to confirm. Bone scan results showed areas 'consistent with' secondary breast cancer. Now classified Stage 4, but manageable. I've just finished my 'new normal' of the first 12-week cycle of a Zoledronic acid infusion at the beginning of treatment, daily Letrozole and 3 weeks on 1 week off of Palbociclib. Results last Wednesday from my oncologist, who was delighted to say that the CT scan taken week before last shows no evidence of progression, so the meds are doing their job. Patients I've met on this forum and others have been on this medication since it was released 5 years ago, so feeling confident going forward.
I am fortunately still very happily married to my husband of 30 years whom I promised to grow old with, and we have our 13yo son who I want to see grow up, so I have many reasons to keep going.
I hope for you that your have friends and family for support, and that once you have a plan mapped out with your surgeon, breast cancer care nurses and possibly an oncology team if it's needed post surgery, that you will also feel that confidence that you will get through this. I won't tell you to not be scared because it's horrid scary to start with but when you have a plan, you start to feel a bit more in control of things. If you have any questions, or just thoughts and feelings that you're experiencing and want to not feel alone in this, this is a safe place for you to ask/express them.
The waiting is the hardest part, as it leaves you with your thoughts which as humans, we tend to go to dark places when confronted with a diagnosis like this, but please know you will get through this. Your breast cancer care nurses are there for you as well - use them. I was always hesitant to call them thinking there are others out there who had a greater need than me, but I was encouraged to call them whenever I had a question and they assured me that I was not interrupting their day, promptly answered my question/s or went away, got the answer/s from the surgeon and came back to me. I would sometimes make an appointment to go in to see them to just talk about my concerns or thoughts and they're so caring and there to support you. That's a true calling to be there in our darkest hours. Macmillan nurses are similarly there for you too so please use these wonderful resources that are there for you to access. Maggies is also another amazing place to go to for support and know where we're all coming from, and they, like Macmillan, will support partners and family members as they too emotionally and mentally process your diagnosis to find out how best to support you as well. They've all been a God send to my husband and our son, as well as me. Use them.
Praying that you'll be on this road quickly to get the support and attention you need to get through this.
Thank you for sharing your experience, I wish you all the very best with everything.
It makes be feel really grateful that whist there are similarities, size age etc there are also differences, I think the reason my diagnosis didn’t change was due to the fact that somehow my cancer had not spread to the lymph nodes and the margins were also clear. it is amazing the progression in cancer treatment especially over the last 20 years especially with the reoccurrence risk now being able to be determined, which will certainly help longer term. I am not sure what the next steps entirely will be but know some bio meds will also be required, in fact I will ask about that when I next meet my nurse.
@Army try not to think negatively, thinking positive helped me before my surgery (sxm Nov 21). Through surgery they saw the true extent of what they initially thought was stage 2 DCIS, my pathology reports showed 26mm invasive with 9mm lymph node involvment, and 57mm DCIS, it'd basically taken my whole breast so I have no choice but to have chemo and radio, thankfully I have only 3 cycles of chemo left then I wait a few weeks before I then have 3 weeks of radio.
Having a positive mindset from the beginning has definitely helped me as I was misdiagnosed for 5 months. The out is positive though so nothing will break my mindset, I still have down days of course but I won't know if there is any cell spikes etc until I finish chemo as they think they got everything during the sxm and snb.
Hopefully the chemo is and will do its job at stopping any more cells from growing.
I wish you all the best for your surgery and will keep my fingers crossed that it's good news xx
Thank you so much for this Tizzy. I do believe in a good mindset will help you through. I Think my mind is not knowing if it’s travelled else where as I have a very tickly cough. I do have mild bronchiectasis so this could be a flare up but your mind wanders. I Will deal with as best as I cam with a positive outlook once I have results with any treatment plan. Just the not knowing is the hardest
5 months misdiagnosed is shocking I hope your getting through your treatment plan ok now did you have lumpectomy or mastectomy was your initial diagnosis lymph node clear
how can they get that do wrong I’m so glad you sound a positive person as I do believe it helps my aunt had a double mastectomy 15 year ago and she is going great my mum had a lumpectomy 5 year ago and she is also doing well
@Army, when I first went to the hospital about the lump the Dr at the time just did an ultrasound and said it's clear it's obviously just a gland or cyst (my youngest is nearly 3 so hadn't breastfed for over 8 mths at this point) so I believed what they said, I only went back to the doctors as myself and my partner noticed it had changed and I could where it was, but again the gp was dismissive (there's an ongoing investigation into my case as my surgeon isn't happy it was missed) they had a chance to catch it sooner, I'm jist glad it is still classed as early stage. My surgeon mentioned a lumpectomy but I opted for a sxm as I was worried (due to family history) that it was bigger then thought, my consultant says it was the best decision I could have chose given what they found as i would have had to go back into theatre for a sxm anyway as they wouldnt have got clear margins. He's wanting me to have a reconstruction once I've finished all active treatment. We thought lymph node involvment as on the ultrasound it showed 1 was inflamed x
