DCIS - Breast marker missed in initial surgery

Dear @Reggie3

Best wishes for today, and a good outcome. 

@Reggie3 WOW! Your story has blown my mind! You poor thing. i cant imagine how you must be feeling & my heart goes out to you. My diagnosis/treatment is very similar to yours but mine worked!! You should be like me now!. I had aggressive DCIS, left breast, 3 years ago & had a lumpectomy to remove it. My operation went so well with clear margins & I only ended up having 3 weeks of rad treatment following the surgery. i went private like you & had an amazing surgeon & I didnt have to pay anything! I also had a hook line put in. 
I do hope today goes well. Your surgeon should be laying out the red carpet for you. I will be thinking of you today & sending love, thoughts & prayers to you. Stay strong & know we are all thinking of you xxxx

Well, that all totally sucks, @Reggie3.

I, too, had a couple of surgical 'fails' in the early days of my treatment. If nothing else, it quickly disabused me of any romantic notions that the medical profession are either infallible or entirely ethical.

In the end all my kicking and screaming did little to reverse the damage or even obtain an apology (they stick together like shit to a blanket) but it did have one positive effect; it made me very prepared and willing to question anything about my treatment that didn't seem right. I've learned when to make a complaint and how to deliver it.

I've been accused of being adversarial and combative and my files have big red stickers inside them. Good. If I dig my heels in, ask for further information or question someone's competency, I've got past experience on my side and it is much more difficult to fob me off. And I have rarely been wrong--some of the shit that has happened to me in public hospitals would curl your hair. Constant vigilance is tiring, but it is the reality of our mutual obligations in an increasingly overstretched and sadly unmonitored system.  

That's not what any of us want when we get thrown into the great BC mincer, but like any negative experience you can gain strength and conviction from it. 

Chase the dude down if you have the energy, but be prepared for some less than satisfactory responses. Take some comfort that butcher boy will be having his own personal stress attack about this--that's assuming he is not completely invested in his own God complex in which case you can only hope to increase the amount of paperwork he has to deal with. MXX

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 👌🏻👌🏻.

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

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.

Hi @Reggie3
Thinking of you in this awful situation.     Wishing you all the best for Thursday.   Sending hugs xxx

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.

@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. 

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.