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.

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. xxThe 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=healthAll the best for today xx big hugs coming from me xx

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.

UpdateSo it got a bit more serious 😥 the 2nd biospsy showed high grade DCIS at 6 o'clock. Because it was multifocal I uderwent a nipple sparing mastectomy and reconstruction on 10 Feb. There was a positive margin from the mastectomy so I'll require close monitoring but will not need any further treatment.I'm doing OK but the whole situation could have been handled so differently which would have avoided the major stress and anxiety I have suffered.My advice to anyone out there that is not happy or has concerns regarding their proposed treatment or diagnosis is to please seek a second opinion. Go with your gut instinct if it doesn't feel right then it probably isn't.A second opinion may save your life!

Dear AllyJay Thank you for your understanding, I don't get it either - I had all the correct scans and it was still missed! I thought that's why they put the marker to help the surgeon find the correct area of the breast. I could understand if he got the correct spot but the margins weren't clear and he needed to go in again but this is not the case with me.I'm going to contact my GP tomorrow and have a chat with him. I have a good relationship with my GP and hopefully he will tell me straight out if he thinks I should find another surgeon.

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

DCIS - Breast marker missed in initial surgery

53 Replies

Locksley
Member
5 years ago
@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 xxx
Anne65
Member
5 years ago
@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 xxxx
Zoffiel
Member
5 years ago
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. Mxx
AllyJay
Member
5 years ago
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.
arpie
Member
5 years ago
GO GIRL!! Well done @Reggie3 - on finding the strength to do that & all the best for the results from the core samples & the next lot of surgery. Terrific that you had all the support to help you through this! xx

All the best xx
FLClover
Member
5 years ago
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 ♥️
Afraser
Member
5 years ago
Well done! Confidence in your surgeon is pretty important - a longer process but worth it!
Reggie3
Member
5 years ago
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.
arpie
Member
5 years ago
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 xx
ChezaH
Member
5 years ago

Anne65 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

Good luck for today and a positive outcome hugs Cheryl xx

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