DCIS - Breast marker missed in initial surgery
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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. MXX12 -
@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 xxxx5 -
Good luck for today and a positive outcome hugs Cheryl xxAnne65 said:@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
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Yes - the whole situation totally sucks.
OMG - you've been thru the mill, @Reggie3
I hope that your surgery goes well today and that you make a good recovery. I also hope the waiting for THIS lot of pathology isn't too bad for you, as the waiting really sucks too. xx
The ladies have pretty well covered all aspects of what should happen from here (even with humour - good to see you got a laugh out of some of the comments too!) His behaviour and the outcome of the initial surgery is totally unacceptable.
When you feel up to it, I also believe you should put in a formal complaint to the appropriate authority in Canberra, so that it is 'on record' and is reviewed by an independent group - https://hrc.act.gov.au/health/
https://hrc.act.gov.au/complaints/make-a-complaint-about-a-service/?Service=health
All the best for today xx big hugs coming from me xx8 -
Update
So I sacked my surgeon I just couldn't stomach the thought of him coming anywhere near my body. I cancelled today's surgery. Told him bluntly in writing that I was unhappy with the standard of care I received, got a fluffy response!
I got a second opinion and have just come home from a further ultrasound and biospsy from a different area on the left breast at 6 o'clock x seven core samples, this should have been done before initial surgery like OMG! I go back to new specialist early next week he is so lovely and really looking out for me and thorough.
The pathology results from today will determine the surgery treatment plan. I must commend the breast cancer care nurses for organising the second opinion and supporting me at the appointment. I am also so grateful for the BCNA nurse counsellor for her support and advice. And finally all of you for your kind words, support and encouragement to stand up for myself I couldn't have done this without you.
The saga continues I will be pursuing the legal route when I have a bit more energy and have sorted my health.
This isn't the end of this journey unfortunately so I'll keep you all posted.12 -
Well done! Confidence in your surgeon is pretty important - a longer process but worth it!5
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Oh @Reggie3 that’s fantastic!! I’m so happy you did that!! It’s one of the hardest things to do in a situation like this, but you did it! I’m glad you found that strength in you and used it, to fight for YOU! 💪🏻♥️♥️. Very nice of the nurses to support you too 👏🏻👏🏻.Now just focus on getting the cancer out successfully with your new surgeon, and healing. You have all the evidence you need, so don’t worry about that. I hope you’re feeling a lot better and treating yourself to something nice today ♥️6
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Good for you @Reggie3. I'm so relieved, for your own peace of mind, that you have given this oxygen thief the flick. I'm quite sure that had you gone ahead today with the surgery, it would always be in the back of your mind (did he really get it right this time round). Your health and life are far more important than this buffoon's ego and I'm so pleased that you have taken this stance. I wish you continuing good care as you continue, and I hope that you recover, both physically and emotionally.8
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Good on you. Onwards from here.
I think your story is really important reading for anyone who has any doubts about the people who hold our lives in their hands. It's great that you got support from the nurses, it can make a tremendous difference. Mxx6 -
@Reggie3 So proud of you. You have made the right decision as having faith in your surgeon is SO important as you will continue to be monitored by them for years to come. I bet you feel relieved & empowered to have done it & it just goes to show how strong you are. Keep ticking off the boxes & we are all here to help you anyway we can. As I said earlier, my diagnosis was very similar to yours so if i can help in any way, reach out to me. So happy you have found support with the breast care nurses & BCNA. They are amazing & we all owe so much to them for their dedication & care. Good luck with your new surgeon. Sounds like you have a good one this time! Strength & love to you xxxx4
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@Reggie3 Congratulations on making this decision. You must feel so empowered. Sometimes we really don't know how strong we are. You are an inspiration. Fantastic you had such wonderful support from your Breast Care Nurses. Take time to heal after your surgery. I am sure the legal outcome will be in your favour as well. BCNA Network really is such a wonderful caring supportive environment. Sending you love and hugs xxx4
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Well done, it takes guts to do this, and I agree you cannot go through this with somebody that you don't trust and has already mucked up the first go. Wishing you well with your new surgeon hugs Cheryl xxReggie3 said:Update
So I sacked my surgeon I just couldn't stomach the thought of him coming anywhere near my body. I cancelled today's surgery. Told him bluntly in writing that I was unhappy with the standard of care I received, got a fluffy response!
I got a second opinion and have just come home from a further ultrasound and biospsy from a different area on the left breast at 6 o'clock x seven core samples, this should have been done before initial surgery like OMG! I go back to new specialist early next week he is so lovely and really looking out for me and thorough.
The pathology results from today will determine the surgery treatment plan. I must commend the breast cancer care nurses for organising the second opinion and supporting me at the appointment. I am also so grateful for the BCNA nurse counsellor for her support and advice. And finally all of you for your kind words, support and encouragement to stand up for myself I couldn't have done this without you.
The saga continues I will be pursuing the legal route when I have a bit more energy and have sorted my health.
This isn't the end of this journey unfortunately so I'll keep you all posted.
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