Forum Discussion
DCIS - Breast marker missed in initial surgery
Hello,
I was recently diagnosed with intermediate grade DCIS left breast presenting as a stellate lesion (1.4cm), apparently the usual presentation is calcifications. I had a wide local incision just before Christmas to have it removed. The surgery went well and I was very happy with the incision/surgery (done by a private breast cancer specialist). The scans I had before surgery were mammogram, ultrasound and an MRI. A breast marker was implanted at the time of the biopsy with Breast Screen.
I went back to see the specialist last week and the pathology was showing that there was no breast marker in the tissue removed and also no DCIS in the pathology sample. He sent me for another mammogram, that was very uncomfortable I must say on a breast that has just had surgery!
Long story short the recent mammogram showed that the breast marker and DCIS wasn't removed at surgery it had been missed, I'm booked in for the exact same procedure all over again this Thursday.
I'm so upset that I have to go through another general and have the surgery all over again, plus I've been a mess just waiting for the results the first time around. That's been the worst part of this whole journey so far. I've spoken to the specialist about my concerns but I'm not really satisfied with his explanation.
Also this is my second time dealing with cancer 23 years ago I went through surgery/chemotherapy and had to have an emergency hysterectomy. Going through this journey all over again is bringing up a lot of bad memories.
Has anyone else been in this situation? I'm just feeling so deflated atm.
I was recently diagnosed with intermediate grade DCIS left breast presenting as a stellate lesion (1.4cm), apparently the usual presentation is calcifications. I had a wide local incision just before Christmas to have it removed. The surgery went well and I was very happy with the incision/surgery (done by a private breast cancer specialist). The scans I had before surgery were mammogram, ultrasound and an MRI. A breast marker was implanted at the time of the biopsy with Breast Screen.
I went back to see the specialist last week and the pathology was showing that there was no breast marker in the tissue removed and also no DCIS in the pathology sample. He sent me for another mammogram, that was very uncomfortable I must say on a breast that has just had surgery!
Long story short the recent mammogram showed that the breast marker and DCIS wasn't removed at surgery it had been missed, I'm booked in for the exact same procedure all over again this Thursday.
I'm so upset that I have to go through another general and have the surgery all over again, plus I've been a mess just waiting for the results the first time around. That's been the worst part of this whole journey so far. I've spoken to the specialist about my concerns but I'm not really satisfied with his explanation.
Also this is my second time dealing with cancer 23 years ago I went through surgery/chemotherapy and had to have an emergency hysterectomy. Going through this journey all over again is bringing up a lot of bad memories.
Has anyone else been in this situation? I'm just feeling so deflated atm.
53 Replies
- will be thinking of you later this week - let’s hope you get it all out this time. Make sure you get copy of all your records too so if you need to lodge any queries you have the Evidence .
- Hi @Reggie3 I feel awful for you as this is completely unacceptable. I totally agree with all of the suggestions given and I am so happy you have touched base with your more reliable medical team. I know you will be feeling hesitant about having this surgeon again, but I agree that you need to get the procedure done without any more cost or waiting involved. Remember that the pathology is going to put your mind at ease - there are other checks and balances going on to ensure your surgery is a success. On Thursday night it will all be done and then you can take up the fight in relation to any money he may want to charge. I would like to think that there is absolutely not a single cent that leaves your pocket. Take care M x
- Update - so I went and saw my GP this afternoon, he could not understand either why the DCIS and marker were missed, in his words 'highly unusual'. He did say that I should have surgery on Thursday with the same surgeon, given that I was diagnosed in late November time is ticking by and it is best to have it removed ASAP. My GP has recommended a lot of women to this surgeon and none have had any issues. If I go with another surgeon it could be another month away before I have the surgery and I would need to start the process all over again :-( Financially I can not afford to go private with someone else and pay another gap fee.
I have spoken with a BCNA nurse, ACT Breast care nurse and also a cancer psychologist this morning. All are saying to me that it is a very unusual occurrence and agree that something is not right with the situation. I will be asking some serious questions after the surgery is completed of the surgeon, but at this point in time the most important thing to do is to have it removed.
Thank you everyone for your advice and support. - Thank you Emma17 you have given me the confidence to stand up for myself. Good on you for firing one of your treatment team. Sorry you had to go through that, it's hard enough as it is, but so not satisfactory when you have to address those sorts of concerns it just adds more stress.
- @Reggie3 Your gut instinct that 'something is not adding up' is key. We're not Subject Matter Experts (SMEs) like our doctors but we have common sense and life experience. When we sense discordance and that 1+1=3, that means something's wrong. It's our gut instinct. Go with it.
Discordance and skirting the truth ultimately exposed my treatment team and I fired one of them by letter with cc: to the others and a copy to my GP for his/her records. - Dear FLClover
I live in Canberra and thank you for your advice and concern also, it makes me feel so much better to know that you guys also think something is wrong with this terrible situation I'm now in. - Dear Caz1,
Thank you so much for your comments, yes he did say that he uses u/s during surgery, something is not adding up. - I agree @Emma17. He should also pay the hospital bill, the theatre bill, the anaesthetist's bill, the pathology from the "surgery) bill, the bill for any repeat procedure that may still be needed to PLACE THE FINE NEEDLE that this Y chromasomically disabled individual so obviously doesn't "think" oxymoronic statement there....one needs a brain to think you need to have. He should be told (via the courts...and his bank manager) that next time he has to do this on some other poor unsuspecting soul...his penis will not shorten or lessen in girth, and neither will his testicles shrivel up like sultanas and fall off if he does so. Sorry for the sarcasm, but I feel so angry on your behalf. This nightmare descends like an atomic bomb into your life, and this F***wit turns it into a cluster bomb. The additional stress, pain anxiety and wait is the last thing you need. I wish I could give you a hug but here's an electronic one instead... (huggg). Ally Jay.
- @Reggie3 You have the right to receive a copy of your medical records. This includes correspondence between doctors.
When you see your GP today, ask for a copy of all documents from your surgeon to the GP. This will include the surgeon's letters documenting your pre-op and post-op appointments. Likewise contact your surgeon's office and request a copy of your full record including your signed consent forms. Understandably the records from your surgeon will include some duplicates of documents you obtain from your GP.
Very importantly, you must get a copy of your Operation Report. This is the surgeon's description of the operation. It will be in your surgeon's records and he will have lodged a copy with the hospital. If your GP did not receive a copy and it is not included with your surgeon's documents, it can be obtained from your hospital. You have the right to receive this document.
Your surgeon's post-op explanations are fanciful and his abject failure and the impact on you is a travesty. My opinion is if you do not return to him, you should not be be out-of-pocket for his failed operation and he should issue a refund. You paid $2,500 for, literally, nothing. - Oh @Reggie3 🤦🏼♀️🤦🏼♀️.
You poor, poor thing. Believe me, you are so not alone in thinking this is wrong, and if anything you are being under dramatic. I would also ask for a refund, and immediately seek a second opinion. This is just not good enough. And you’re right, because of him now you need to be exposed to GA again so soon. Not fair and not ok!!! You paid for a service, didn’t get it, didn’t get a proper explanation in writing as to why you didn’t get it...I’d be suing this guy.Btw, where do you live? It might be a good idea to leave him a nice little review to prevent more poor women going through the same thing. Just completely unacceptable. And second time round too.So sorry darl, really. Hope your app with your GP goes well today and it sorts out quickly. Just remember your rights ♥️♥️
