I’m 57 and had a routine mammogram in July with no symptoms. After ultrasound and biopsy, I was told it was pre-invasive high grade DCIS and surgery plus 5 days of radiotherapy would be all that is needed. After my first surgery, 8mm cancer (grade 2) was found. I’ve now had second surgery to test sentinel lymph node and take more tissue. My cancer type is hormone negative but HR2 positive. I’m absolutely terrified it has gone to my lymph nodes or beyond. A 3 week wait for results and I’m imagining the worst… Every appointment I go to, the news just keeps getting worse. It’s now been 4.5 months since suspicious mammogram - all that time to spread. Can anyone in a similar situation offer me hope please?
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Hi Sarah,
I’m sorry to hear what you have been going through during the last 4.5 months. This is my first time writing anything on the forum. I cannot help with information for you, but did read your post and wanted to say that I hope you have family and/or friends to listen and give you support at this time and there’s so much help on here. Have you got a BCN you can call? I’m at the early stages of this rollercoaster, just having diagnosis of intermediate DCIS (I had no symptoms) and a wide local excision is in December.
I wish you all the best x
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Hi,
Sorry to read your post. I just wanted to reach out as I can understand what you are going through. I was diagnosed with intermediate grade DCIS in June after having an ‘exploratory surgery’ following 8 months of unexplained discharge from the nipple. I was breastfeeding when the symptoms first appeared and continued to do so (on the good breast) as I was told it was nothing to worry about and likely a growth in one of my ducts. So getting the news at the end of June was a huge shock. I had further surgery to get better margins in August, but results came back that it was more extensive than thought and I was recommended a mastectomy.
I just had the mastectomy 12 days ago with an immediate DIEP flap reconstruction. I also had my sentinel node removed. I now have the long and nervous wait to see if anything can be found in the lymph nodes and also whether there was any invasive cancer in my breast too. It’s not an easy thing waiting for results, but try and keep busy and also as someone else said, share your concerns and fears with family and friends. Unfortunately, cancer affects everyone around us too so it’s good to have their support. I wish you all the best with the results xx
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Thank you for replying. Yes I have a BC nurse but I also feel like Im being drip fed the info and they aren’t telling me everything. The HER2 positive is a huge worry from what I’ve read. I wish I could stay positive. I wish you all the best too… it’s not a nice place to be is it? xx
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Thank you for your reply. Yes the waiting is so very hard. I had one sentinel node removed too and can’t stop thinking about those results and ongoing treatment. Chemo already seems to be on the cards… You’re right about keeping busy. I’m trying but easier said than done. I wish you all the best on your journey. We all have to be strong. Take care xx
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do use the someone like me option Breast Cancer Now offers and also speak to a nurse ring the number on here take it one day at a time it’s a lot to process and do keep off doctor google, keep coming on here and reaching out, everyone’s got you 
do remember your team have seen it all before and your treatments are tailored specifically for you when your plans in place. Ask away on here about anything we will all reach out so you’ll never feel alone, this is your safe space to ask, rant, wobble and laugh and you will because this crazy ride will take you places you never imagined but everyone here gets it 
Shi xx
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Thank you so much xx
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Hi Sarah, this happened to me 3 years ago. My DCIS diagnosis needing a lumpectomy followed by radiotherapy changed when I got the results of my first surgery. My cancer was also HER2 positive but ER negative. My sentinel lymph node biopsy was clear but I was recommended chemotherapy, radiotherapy and herceptin injections to give me the best possible chance of the cancer not coming back. I was diagnosed originally in October 2019 but didn’t have my first lumpectomy until January 2020 (delays due to dental problems). The waiting around for results is tough. I just wanted to let you know that there is hope. I’m currently awaiting my 4th annual mammogram (clear so far).
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Hi Sarah,
I think it can feel like you’re being drip fed information partly I suppose because they cannot say much until results come back and as we go through tests, biopsy and any surgery tissue results. Lots of waiting, which so many people on the forum have said is one of the hardest things.
I’m trying to stay positive, almost to try to make the results be okay! and I am keeping busy and preparing for Christmas because the WLE is a few days before. Take care and keep writing on here as knew info and suggestions may come along which might be helpful xx
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This is such a hopeful post - thank you so much for sharing. Did you have chemo and for how long? Do you remember the size of the tumour they found? Not helpful to compare I know… I just can’t help myself. It’s been over 4 months since my first suspicious mammogram too. All the best to you, sounds like you’ve beaten this! xx
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Thank you funnygirl, yes the waiting… it’s been never ending waiting since mid July! Feels like such a long time. I keep thinking, surely it could have spread everywhere by now?? Not helpful… Good luck to you for your WLE in December. Christmas has taken a back seat this year and we have 5 kids but they understand. I just can’t get in the mood! Maybe after Monday’s results. xx
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don’t let Christmas take a back seat whatever your results your still fabulous you don’t ever let it take your joy even if you end up in a tinsel wig (yes lots of us who did chemo through Christmas ended up with a tinsel wig or 3) still do Christmas Shi xx
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Yes, you’re right … thank you! xx
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Hi Sarah, Ive been on the same road as you. Was told had suspicious mass and calcification. What they could see on the mammogram they couldn’t pin point on the ultra sound scans so badically first biopthey were digging in the dark. 2 week wait for the results to be told calcification was not pre cancerous but they had to do more biopsies of the suspicious lump. 2nd lot of biopsies…done with the use of a brand new all singing all dancing scanner so they could take biopsies from exactly the correct places…came back that the calcification was in fact pre cancerous and there was a small tumour. Her2 positive. Was a bit of a shock but was told prognosis was good as caught early. Ive had a mastectomy and sentinal lymph node removal. Thankfully lymph nodes were clear. So…my treatment plan is 12 weeks of chemo, administered weekly, then 6 months of herceptin injections…all to help with preventing reccurence. Hang in there… they only want to get it right for you…and can i say, while you are waiting get to your dentist and ensure your mouth and teeth are tip top ad they need to be befire starting chemo. I was told this AFTER op and all appointments and it could really have delayed the start of treatment. I had to have a tooth extraction as it had infection. I was lucky to get an appointment so quickly. They should make everyone aware of this from the start! Good luck and stay strong. You got this. X
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Thank you Shi. Sorry for the late reply… I thought I had replied! It’s great to have somewhere to chat with others. Sarah xx
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Thank you Mandz. I have been told by BC nurse that I will prob have 6 months of chemo and Herceptin for 18 months!! Also radiotherapy. Seems a lot when my tumour was only 8mm and no lymph node involvement. What size was yours? I hate that this has taken over my life! Not googling any more but I do want to be informed… a fine line! All the best to you. When do you start chemo? xx
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Hi Sarah…that is a lot but im confident they know what they’re doing. There were 2 small tumours found when they removed my breast… im sure she said 2mm in diameter, which is small and no spread. Im guessing your treatment is longer due to the grade maybe? You should call your breast nurse and ask? I have my first oncology appointment on 20th December… I’m guessing I’ll be told then when i start treatment. Stay strong lovely…no spread to lymph nodes is a relief…sending lots of positivity your way. Xx
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I am having similar follow up treatment after a lumpectomy in the summer. I think of it as belt and braces. They’ve removed the cancer but the chemo just catches any rogue cells that managed to slip past your lymph nodes. Similarly the radiotherapy gets rid of any that managed to be just outside the area of surgery.
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Hi Mandz, my tumour that was hiding was 8mm and grade 2. The BC nurse said the chemo for her2 positive has now become ‘gentler’ whatever that means! My oncology appt is 20th December too. Good luck with your treatment. Thank goodness Christmas is a bit of a distraction! xx
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I hope everything goes well for you… I just need to trust the system I guess! I can’t help thinking that my original diagnosis and treatment was pre-invasive DCIS and 5 days of radiotherapy! If only… xxx
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