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
- 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. - 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
- 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 .
- Good luck @Reggie3, it will go well on Thursday. But as it was mentioned above, definitely ask for a copy of the operation report of both surgeries for your record, so you can enquire what went wrong first time round and have the evidence if you need it.The fact your GP sends all his/her patients to him doesn’t mean anything. Mine assured me the surgeon she recommended for me was great and she also sends all her patients there. Until after my mastectomies, when things also started to not add up and gut instinct was going crazy in warning me against him. I changed surgeons and turned out my instinct was right all along, even though I’m not an SME, as also mentioned above. I’ll be telling my GP to start sending her patients to my wonderful new surgeon from now on 👌🏻.Keep us updated ♥️
- @Reggie3 you poor thing, I can’t imagine going through that. I have moved from Brisbane to Canberra after my DCIS surgery and radiotherapy in July. I had 2 markers, one from previous calcification and the DCIS marker, Ihad the fine wire and was advised after surgery that after pathologist- during surgery cleared for closure, then got back to say they needed to take more out to ensure margins clear. My female surgeon was very specific about what was done and redone under general anaesthesia and in one surgery....I am bewildered that this could happen to you. If GP has agreed I would still be asking lots of questions of surgeon before surgery and take someone with you to take notes of procedure this time.Please take care and be kind to yourself ...DCIS diagnosis is a lot without what you endured. I certainly would be seeking more information and consulting independent opinion. Recovery is hard enough. A big virtual hug for a healthy outcome.
- Hi again @Reggie3,
For some of us, myself included, being assertive in person, in a case like this, is a challenge. If it were me, I would send a registered, carefully considered letter, which would require an official explanation in writing. Just having a conversation with the surgeon does not cut it. - Hi @Reggie3
Thinking of you in this awful situation. Wishing you all the best for Thursday. Sending hugs xxx - Louise64 thanks for your comments, I'm so frightened that firstly they get the correct tissue and that if the margins aren't clear this time around then I will have to have a third surgery. I did go back to the specialist last week for a chat but probably didn't ask the right questions. I took my daughter along to the appointment and she felt that he skirted around them. I have had friends who have used this specialist and have been very happy with the results. It's obvious something seriously went wrong with my surgery and I will be seeking legal advice (medical negligence surgical error) when I finish my treatment with him.
I will be asking for the hospital reports and all relevant paperwork when I get confirmation from the pathology that they have got the DCIS. If I had time on my side I would be getting a second opinion and changing specialists, Canberra is a small place and the breast surgeons know each other. I was told that they would probably be reluctant to take me on and clean up someone else's mess. I would assume it would be in his best interest this time around to get it right!
I will give everybody an update on 22 January when I go back to see him for the results from the surgery scheduled for this Thursday. - Reggie3 said: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.
Good luck with your second surgery, sending hugs for a better outcome, and also I agree to look further into it after the surgery and you recover to have the strength to go further. xx Cheryl - It is in his best interest @Reggie3 so let’s hope he does it right this time!! It’s a bit sad that things need to be like this in small cities, and even sometimes in big ones, where other surgeons don’t want to interfere even though we’re talking about saving a life! Im glad you’re taking this further once pathology confirms it’s gone. You def need it gone ASAP.
@Dory65 great idea about the letter!! I’m planning on doing same thing with my first surgeon, but only as constructive feedback. I just changed my surgeons and he got the gist after a while, as I also wasn’t strong enough back then to face him. Actually maybe I was, but I was also quite angry, and he was very stubborn and wouldn’t listen in person, so written form is great 👌🏻👌🏻.
