Hello,
I wanted to get an overall feel for what treatment regimen people were recommended or taken w/ similar traits as mine. Here’s my info:
*Stage 2A (grade 2) IDC w/ 2.1cm as largest tumor (there are 2 known so far) but no lymph node involvement.
*Grade 2 DCIS w/ necrosis & calcifications, + my breast is full of high risk pre-cancerous type of tissue (ie, dense breasts, sclerosing adenosis, atypical hyperplasia, complex sclerosing lesion, columnar-altered ducts etc).
*ER+, PgR+, HER2-,
My treatment so far: lumpectomy on 6/20 but margins were positive so re-excision lumpectomy scheduled for 7/7 (tomorrow, yikes!!). I don’t know what happens if the margins come back positive again (I might insist on a double masectomy rather than another lumpectomy). I haven’t received my oncodx results back yet (should this week) but I was told at this point it’s most likely radiation but no chemo.
I was curious, for those w/ similar presentations as mine-
*what are your details re stage, grade, journey of treatment so far, etc
*what was recommended for your treatment?
I wish everyone love & good wishes on here!!!
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So i was Stage 1 but grade 3, 18mm tumour, dense breasts (tumour not detected on mammogram).
Oncotype back at 10 so no chemo.
Just finished 16x radiotherapy
On tamoxifen (hormone blocker), zoladex (ovary suppression), calcichew (high strength calcium/vitD) & due to start zometa infusions in Sept for bone health.
Hopefully your oncotype results are back soon and ypu can get your treatment plan agreed.
Good luck! X
Hi. Best of luck for tomorrow.
I have invasive lobular bc. Stage 2b, Grade 2. HER2 negative and ER/PR positive. Lymph nodes clear so far but having a senitel node biopsy.
3 areas of cancer total area 5.8cm so having a mastectomy and DIEP reconstruction this Thursday. They said I would very likely need radiotherapy but chemo will depend on oncotype result.
I was wondering when I would get the oncotype results? So nearly 3 weeks for you? Also when do they tell you if the margins were clear? And would they be able to test lymph nodes during the op do you know? I’m in Bucks UK.
Thanks for anything you can share and hope my comparison was helpful as it sounds similar other than the cancer type.
I’ll be thinking of you tomorrow x
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Thank you, cujo! I hope your treatment goes smoothly!
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Hi TiaMaria-
First off, good luck tomorrow!! You will feel so much better once surgery is over than you do right now, I bet ! At least that’s the way it was for me. To answer your questions, I got my onco-DX and my score was 11. My surgery was 6/20/25, then they held onto the tumor for their in-house pathology testing and told me they sent it off for onco-DX testing on 6/24. It took 12 days after that to get the results back in my portal online. For the pathology results (and news on margins), for the first surgery, I got those results back on 6/24 (this was over a weekend). I just had my second surgery on 7/7, it is now 7/9 and haven’t received results yet but maybe tomorrow ?? Yes, for my first lumpectomy the first time, they did take out 2 lymph nodes at that time, which I think is pretty standard. You should definitely ask before surgery tomorrow if you don’t know! I will be thinking lots about you and holding your hand there in spirit. It will be over before you know it. Please let me know how you’re doing !!
3 areas of cancer total area 5.8cm so having a mastectomy and DIEP reconstruction this Thursday. They said I would very likely need radiotherapy but chemo will depend on oncotype result.
I was wondering when I would get the oncotype results? So nearly 3 weeks for you? Also when do they tell you if the margins were clear? And would they be able to test lymph nodes during the op do you know? I’m in Bucks UK.
Hi Coleitt
Thank you so much for your message and encouraging words. Leaving home in half an hour. I’m starving already haha. Feeling very nervous so need to just get going now.
Thanks again. Hope all went well with your second surgery on 7th. How are you feeling? xx
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You’re probably in surgery right now ! I’m doing well actually and am expecting to go back to work next Saturday as long as I continue to heal as expected. Still waiting for results on whether they got all the cancer this time. Once you’re settled and up to it, let us know how you are doing !
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Hi Coleit
I’m finally home from surgery. The op itself is manageable. Difficult to walk so far but it’s not really pain it’s just heavy and tight all down the front. Can’t feel a thing on the boob and that’s all gone well.
What got me was the medication / anaesthetic and opioids. I am prone to fainting and kept passing out in the first few days. So lots of nausea too.
How did you get on with your results from your 2nd op. Praying it was clear for you xxx
So good to hear from you, tiamaria!
I’m glad to hear that the surgery is behind you and you’re not in pain. I am sad that you were passing out and nauseous! That’s the worst ! I hope you are starting to feel better from that. Did they take lymph nodes or give you an idea of when your onco-dx results will come back? Did you have a unilateral or double mastectomy, if you don’t mind my asking?
Unfortunately, for me, I got bad news this week and they were not able to remove all the cancer and DCIS with the second lumpectomy and couldn’t guarantee that they would be able to with a third attempt. Because I also have a lot of precancerous and high-risk tissue on the right side, my chance of reoccurrence is so high, that it looks like the best option is having a total mastectomy. So right now I’m just trying to process that and think about the options with that, which I have no idea what to do. The good thing about it is that I might not have to do chemo, radiation or even mammograms. Did they recommend to you that you needed radiation tho even with a mastectomy? When do you find out how many sessions?
Feel better!!!
Nicole
Hi Nicole.
Thanks for your message. I’m so sorry to hear you’ve had bad news this week. It’s an uphill struggle isn’t it. That’s what I felt - that at each next appointment the news was a little worse than before. I guess we have to go with the “all still treatable though” viewpoint, but as you say it’s a lot to process and I can imagine you’re pretty fed up by now after 2 ops.
I had a unilateral mastectomy with DIEP reconstruction. The lady next door had a double and seemed to be better than me as she didn’t have the sickness and fainting. We’re keeping in touch so I can ask her any questions.
They took 2 lymph nodes and he was hopeful they are ok 
. Find out next Friday ish.
They had suggested radiotherapy would be highly likely (invasive lobular bc) hence diep was the best option for me as radiotherapy tends to not work well for the implants they said.
It seems they will only request the Oncotype test if pathology shows the 3 areas of cancer are all connected. I’m suspecting so?! So not sure when they’d send that off.
I hope you come to a decision you are happy with. Let me know if you have any other questions. Take care xx
Hello! How are you recovering? Have you heard any updates, lymph node status, or onco-dx results ? I have a plastic surgery consult tomorrow.
Hi. It’s a slow one but I’m doing well thanks. I walked 5000 steps today (day 12) and 4000 past 2 days. Everything is sore but it’s manageable.
Plastics check Friday was all good. This coming Friday 25/7 I have a results appointment but not sure if that will include oncotype or not.
Hope your check up goes ok tomorrow. I’ll keep you posted after Friday x
Hi Nicole
Update is that my 3 areas are not connected. 2 are counted as 1 and another separate one.
This means that as the largest one is under 5cm and my lymph nodes are negative I don’t need radiotherapy.
They are still doing the oncotype test (maybe as belt and braces) which is only being sent off today and due to consultants well deserved holiday I have to wait until 19/8. BUT he said it is very unlikely (1 in 10) that I’ll need chemo so he is right.
All healing well, they are well chuffed (made me chuckle how pleased they look when seeing my battle torn body 
). I have seromas but they haven’t decided whether to do anything or leave them to sort themselves out!
How are you doing? x
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Hi Tia Maria!
That is all such great news !! I’m seriously so happy for you. My plastic surgery consult was rescheduled. They are saying they want to try a third lumpectomy with reconstruction. They can’t guarantee that will be enough. Worst case is that I still have positive margins and will need a fourth and final surgery. Aesthetically, I want to do that although I feel that the cancer will recur. I still have a plastic surgery and radiation consult next week to get more info for the decision but my surgery is scheduled for 9/8. Do you know what kind of hormone therapy they will put you on and when?
Hi Nicole
Thank you. Yes the results were better than any of us expected.
I will be on Anastrozole (I’m 58 post menopause). Not sure why this and not Leteozole etc. he said 5 years or 10 if I can tolerate it. I’m now looking at all the side effects and what I can try to do to counteract or help them. Just waiting for the chemo (or lack of ) confirmation. Score they start me on those.
Oh gosh so many ops for you you poor thing. Did you have a sizeable breast to begin with? I’m glad you’ve got another date in. I hope it’s a success this time.
With mine I think the 2 lumpectomies may have been an option but they had no way of knowing if there were minute cancer cells in between and one was so close to the mipple which is now gone so I’m safe. There wasn’t cancer between but I don’t regret what was done.
We also went for that DIEP option as they thought I’d need radiotherapy but now I don’t. I am still happy with the DIEP option though - or will be when I can recover. It’s very slow!
Keep me posted x
Tiamaria-how are you recovering? Have you started your anastrazole yet? During my consult with plastic surgery, I found out they couldn’t do reconstruction for my affected breast because it wouldn’t go well after radiation. So I am going ahead with a bilateral mastectomy with flat aesthetic closure. I will be interested to know what the results are to pathology after, I feel like there are probably more areas of cancer they don’t know about on both breasts. They said the MRI wasn’t picking up some of the cancer/DCIS which is why positive margins kept popping up, just that my entire breast had background enhancement. And my other breast also is full of background enhancement.
Hi Nicole.
Is your surgery today? Best of luck.
I am recovering slowly thank you. 4 weeks in and progress slowed a bit due to swelling of the breast. I had a seroma which they drained this week and now just sore due to lymph node biopsy I think. They said I was walking too much as it could increase the swelling so it feels like I’ve gone backwards. Just allowed to pop to the shops or around the house now. I ache more sitting around and walking helps to straighten you up.
Anyway the good news is that I got a call yesterday to confirm Oncotype result meant less than 1% benefit of chemo so I won’t be having it. So pleased with that as I can get on with recovery and drugs which I will be prescribed the week after next I think when consultant is back from holiday.
I really hope it all goes well for you and here to chat whenever you are ready. I hope that like me your pathology results are better than anticipated. Xxx
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Hello Tia Maria,
My surgery was actually rescheduled to 9/8. Ugh seromas- I had one of those that turned into an abscess. No fun!! It seems like everyone gets seromas with these surgeries. Did you have drains or no?
The closer the surgery approaches, the more nervous I’m getting. I hope I have made the right decision. Still adjusting. My mother in law is coming into town to be here. She had stage 3 breast cancer with a mastectomy so she knows what it’s like to go through this. I will definitely keep you updated on the final results. And hope you’re doing well !! No more seromas!!
Hi again
Sorry are you on American dates as in your op is 8th September? Confused as yesterday was 9/8 in UK dates 
I did have drains after surgery (2 on hip area and 1 on the reconstructed breast). They took 2 out on day 3 and the last hip one day 4.
I had the DIEP reconstruction due to possibility of radiotherapy. Guessing for other reasons that’s not an option for you?
Please try not to be too anxious. Easier said than done I know. When the time comes we just take it day by day with a lot of deep breaths! I haven’t needed much in the way of painkillers. It’s all just more uncomfortable than painful and a bit frustrating. Hoping I’m on the homeward stretch now but like most of us constantly worrying what’s normal and what’s cause for concern. Hard when you’re not medically trained!!
Hang in there and keep me posted. I looked up background enhancement which seemed to be a bit of a grey area? Mostly not cancerous it suggested but I guess with what you’ve had leaving a bit of doubt which is worrying for you. Hopefully all will be ok this time xx
Hello Tiamaria!
You’re right about the switched dates between UK and US! My surgery date has been changed though to September 10, and they decided to try a last attempt at a third lumpectomy. It’s actually been a nice little break in between surgeries where I can feel “normal” with working and exercising as much as I want. How are you doing?
-Nicole