Misdiagnosis - should they have done a biopsy?

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Hello,

I was diagnosed with ER+ breast cancer in April, which had spread to my lymph nodes and metastasised to my bones. The tumor was 6x3x3cm, and the oncologist thinks it might have been there for around three years.

One of the things which is concerning me is that I had been for a mammogram and ultrasound the previous November, after finding a lump. The breast specialist confessed that he was “confused” by the lump, but he diagnosed it as multiple cysts and as non-cancerous.

The hospital said it had reviewed the scans and that it didn’t think anything had been missed on the scans. However, nobody has explained why a tumor might be mistaken for, or concealed behind, cysts.

What I am wondering is how the specialist and radiographer could possibly have missed such a big tumor and whether they should have carried out more tests at the time? I expected they would take a biopsy or at least run tests on the fluid they extracted from the cyst, but they didn’t.

One of the reasons I am so worried about this is that the specialist is also the breast surgeon at the hospital, and the one who is supposed to be doing surgery now the tumor has been reduced. Besides the misdiagnosis, we have found him difficult to deal with for a number of reasons, and I would prefer somebody else to do the surgery. This hospital was taken to task about missed diagnoses some years ago and we don’t feel at all confident.

I would very much appreciate any information anybody could give me.

Thank you.

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I havent any advice, however just wanted to say that I’m sorry this has happened to you. You can chose a different hospital for your treatment if you are in an area that has several convenient locations. I was misdiagnosed, or rather under diagnosed, ĺ I know how upsetting this is. I went to PALS to get things put right. You could email them your questions for the team treating you.

Hope all goes swimmingly for the rest of your treatment. X

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Distressed to read your post and can well understand your anxiety. The only thing I can say is that I would not want a surgeon operating on me whom I dont trust. You have a right to ask for a different surgeon and I think I would do so. Wishing you success.

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Hi,
I’m sorry you are having to go through this. I had something similar when I felt my BC had been missed in previous mammograms and I’d had numerous cysts which I was told were nothing to worry about.

When I was diagnosed with BC when calcification was found on my next mammogram I asked questions. One of the responses I received was that the unit had had better and more advanced scanners put in!

My BC was assessed as an interval cancer which is one that appears in between screening, so this can happen. That being said, I asked for all my images to be re-read by another Trust and this was done too.

If you don’t have an empathy with the surgeon you can absolutely ask to see someone else. At my BC unit there were several oncoplastic breast surgeons and we could see whoever we wanted. Always advocate for yourself.

Good luck x

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@blueparakeet so sorry to hear of your diagnosis and the way you have been treated.

As @bluesatsuma has said think of complaining or going to PALS. If it’s happened to you it will probably happen to someone else and they won’t change if they don’t know. You could ask to have a second opinion with a different surgeon who you may have a better relationship with, which is important.

Within the hospital they should have looked at your previous scans and the ones now and compare them to see if they could have spotted the cancer before. I went in April 2022 with issues in my left boob and they diagnosed duct ectasia (scratchy of the milk ducts, happens with age!). I had an ultrasound but no mammogram. I was 53 and due my 3 yearly check with Breast Test Wales but Covid delayed it. The surgeon said I’d be having within a couple of months but it was over a year later. In the meantime, I found a lump in April 2024 and it was cancer. MRI to size it found another tumour in the right boob. I queried whether my first lump could have been diagnosed the previous year and was assured they would have gone back and looked. I heard nothing more so assumed they hadn’t found anything. Thinking as I write this, would they have an actually told me if there was something or did they just do it for their own learning? I think I’ll ask next time I see the breast care nurse.

I wish you the best with all your treatment.

These links may be helpful as you have secondary in your bones.

  • Secondary breast cancer is full of uncertainties. But you can count onLiving with Secondary Breast Cancer to be there for you, no matter what. You’ll be able to talk, listen and learn with people who understand the challenges that secondary breast cancer brings. Our groups are open to people with a secondary diagnosis. Monthly sessions, facilitated by a therapist, are held in a variety of locations across the UK and online. Find a group. And if you are 45 or under? Our Younger Women with Secondaries Together events provide information and support
  • LiveChat: Open to people with a secondary diagnosis. A private chat room where you can talk to others in a similar situation.

:smiling_face_with_three_hearts:

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Hi blueparakeet

Thanks for posting on our forum

We hope to be able to respond to you tomorrow.

In the meantime our helpline is open from 9am tomorrow.

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Lisa

Ask Our Nurses service co-ordinator

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Hi,
I can only add that there is something called interval reporting for those people who are diagnosed between their mammograms. The films are reviewed to see if anything was missed.
On the subject of your consultant, if you don’t feel comfortable with them, ask to change
It’s perfectly acceptable to do this. I immediately changed consultant after the news of my BC was broken to me in a truly appalling way.
My unit has Macmillan navigators and I just emailed and asked to change, it wasn’t questioned.
Good luck xxx

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Hi blueparakeet

Thanks for posting

It sounds like a difficult time for you. It’s natural to wonder if your cancer might have been diagnosed sooner and it’s understandable that you have lost confidence in your treatment team because of this.

Breast imaging such as mammograms and ultrasound will not always identify cancer. Breast ultrasound can help to show if a lump is fluid filled or solid. A breast cyst is a fluid filled lump and fluid may be drawn off if the lump is large or painful. Fluid is usually only sent for testing if it looks unusual, for example if it’s blood stained. . On the other hand, a solid lump identified on ultrasound would usually require a biopsy to confirm a diagnosis

At times like this, it’s important that you feel you have a good relationship with the healthcare professionals looking after you. This helps you talk over all of your care, treatment and concerns in an open and safe way. Many people decide to explore transferring their care to another specialist or treatment team because of difficulties in communication and loss of trust.

It sounds as though you would prefer to have your care transferred to a different breast surgeon. You can ask if there is another breast surgeon that can oversee your care at your hospital as mentioned by @Frances55. Your breast care nurse, or if you are in England the Patient Advice and Liaison Service (PALS) department at your hospital, will tell you how to do this. See the links below for who to speak to if you live in one the other UK countries. If there is no other breast surgeon at your treatment hospital, you can ask your GP or your current treatment team about having your care transferred to another hospital.

If you have your surgery with a surgeon at your current hospital, you might still wish to consider asking for a second opinion at a different hospital for them to review your mammograms and ultrasounds. However, if you do transfer your care to another hospital, you can ask that they do this.

As mentioned by @bluesatsuma and @naughty_boob you may want to make a complaint if you are unable to resolve your concerns. Here is information about how to raise care concerns in the relevant UK country England, Scotland, Wales, Northern Ireland.

We have support services for people with secondary breast cancer (cancer that has spread from the breast to another part of the body such as the bones) that you may want to consider.

In addition, you may find it helpful to speak to one of us in more detail about what has happened. You are welcome to call our helpline if you would like to do this or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK - prefix 18001).

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Best wishes

Eve

Breast Care Nurse

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