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

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
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
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
ChezaH
Member
5 years ago

Reggie3 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.

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 xx
Caz1
Member
5 years ago
@Reggie3
Well done gurrrl....a truly gutsy and tough decision. I think we have all breathed a sigh of relief that you won’t let that person near your precious body!
Go you!
Hope you are feeling ok. Sending hugs
Caz x
Dory65
Member
5 years ago
I'm impressed @Reggie3. Good for you. <3
Sister
Member
5 years ago
@reggie3 I've just caught up with this post and feel absolutely sick for you over what you've had to go through. We need to be our own advocates but it is so hard when you're in such turmoil. I am very pleased to read that your care team took up on your behalf and organised a second opinion. You need to be able to trust your medical team as they literally hold your life in their hands and you were never going to be able to have confidence in that surgeon - I can't believe that he would go in a second time without proper checks. The bastard should be hung out to dry. No doubt so impressed with himself that he can't believe anyone would question him.

And I know that you have faith in your GP but seriously, this should indicate second thoughts in referring anyone else to the dickhead.

Take care and look forward to a better outcome.
Reggie3
Member
5 years ago
Update

So 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!
lrb_03
Member
5 years ago
@Reggie3 I'm so sorry this has happened to you.
Sending a message to your inbox
FLClover
Member
5 years ago
I’m so glad it’s over @Reggie3! And no more treatment, woohoo 🥳😊.
What happened to you, happened to me too. I feel exactly the same - all that extremely unnecessary stress and anxiety could have been completely avoided if my first bugger of a surgeon had handled things differently too. It’s just so unfair to have to go through all that, when it should be the opposite.
And yes, everyone needs to know that second opinions are perfectly fine and normal, even recommended in situations like these, and especially when your instinct tells you to, because our instinct always knows best 👌🏻.
Good on you ☺️♥️

Forum Discussion

DCIS - Breast marker missed in initial surgery

53 Replies

Recent Discussions

Newly diagnosed

Brie321

Wound care after lumpectomy

Tamoxifen + irregular periods.

So confused, scared and teary