? Misdiagnosed

Public Archive
1

Hi
My nipple started to change, invert, approximately 2 1/2 years ago, I went straight to me GP who suspected breast cancer and referred me urgently to hospital. I attended the hospital and had an examination and mammogram 3 days later. The mammogram was clear, i was 38years old, the Dr advised me that I has Duct Ectasia. Obviously, I was reassured and lived with this diagnosis for the last 2 years.

Recently, my nipped remained inverted, but I could feel a small lump and the skin felt thick next to where my nipple had inverted. I had read help pages on duct ectasia, which presents as breast cancer, and read that massage may help with the lump. I was massaging my breast about 4 weeks ago and thick dark grey discharge was seen.

I returned to my gp, who again suspected breast cancer, and I was referred to hospital urgently. I attended the hospital 4 days later. I had an examination, the doctor, said my lymph nodes are enlarged, I had a mammogram which was suspicious and I had ultrasound and 5 biposies taken, 3 from left breast and 2 from lymph nodes. I was told on the day and prior to any results of the biopsies, that they are 80% sure I have breast cancer.

I feel really angry that I may have not had duct ectasia but had breast cancer now for over two years. Has anyone been in this situation. Could it be something else. I have read that mammogram’s do not work as well in women under 40 as our breasts are dense, I feel I should have been given an ultrasound two years ago, as my nipple was clearly inverted and had changed. I am concerned that this has been in breast for over two years but also that it could of been there even longer before I was symptomatic with nipple inversion. I am concerned it’s spread to my bones.

I work full time (NHS), am married with two young children and have a very busy life. I feel like my whold body aches deeply most of the time, but I have put this down to doing so much all the time.

I feel quite well otherwise, would I be ill, if I have had breast cancer for over two years.

I have a consultant appointment on Wednesday, to talk about the results of the biopsies and treatment. Has anyone been told by doctors that they are 80% sure you have cancer and it wasn’t.

Thanks
Gillian.

2

Hi 1906gillian

I am very sorry that you are going through this worrying time. They obviously cannot be sure until they have all of the results from the biopsy. My bc was diagnosed at a one stop shop so I got the results on the day but different hospitals do it differently. I am sure other ladies will be on later to offer more advice and share their thought and experience. Please post again if you have more questions or of you just want to let off steam while waiting for results.

Take care debx

3

Hi Gillian

Welcome to the BCC forums where I am sure you will continue to receive lots of support from your fellow users, in addition, please do feel free to call our helpline on 0808 800 6000, the line is open weekdays 9-5 and Sat 9-2 (re-opens tomorrow after the B/H). Our helpliners are there to offer you a ‘listening ear’ where you can discuss and share your concerns in confidence.

Take care
Lucy

4

Hi Gillian

I’ve sent you a pm

Julia xx

5

Well I have just got my results.

Thank you to everyone who has answered questions for me and wished me well.

They have said it is cancer, oestrogen receptor positive, but they are still awaiting the results of the HER2 status. I have not been told what stage I have, they told me I have a 40mm cancer in the breast with cancer also positive in the lymph nodes. They have said it is a grade 2, this is different from stage apparently.

The consultant advised I will need a CT scan in the next few days, mastectomy in 2-3 weeks - he said he would not recommend that we try and keep the breast, removal of all the lymph nodes in the left underarm area, then 4 weeks later Chemo for 18 weeks (TAC - I think he said), then Radiotherapy, then 6 months later, reconstruction. At least I now know.

We are going to try to get a holiday abroad in before the operation, we are off to London tomorrow, taking the children to see the sights, so I’m keeping busy.

The consultant advised me that the team feel terrible for the original diagnosis and he said sorry, but he said he probably would have made the same diagnosis after looking back through the notes.

Hope all is well with you all
Gillian.

6

Hi Gillian,

I really do feel for you, not much of a consilation, i know.

You have really been through the mill, i was dx with idc and dcis 10 weeks ago, i had no problems what so ever with misdiagnosis, but can only imagine how you must be feeling. My husbands nephew is 30 and had just been diagnosed with testicular cancer, he was messed about for months before he was diagnosed, had a few m.r.i scans and saw numerous docs, who just kept making excuses for not really knowing what was wrong with him, he had a few different diagnosis, if he hadn’t made a nuisance of himself he would not have a clue.

He has just had surgery and an implant, but now has to wait for a scan to see if it has spread to other parts of his body, he first went to the docs in september last year.

He says he wants to put in a formal complaint but at the moment he has more things to worry about, like 3 children and a morgage.

I know i went a bit of track there, but had to get it of my chest.

I hope you get sorted real soon.

Take care, Sandrae x x x

7

hi gillian,

sorry to hear about your dx.I am 36 and was diagnosed in march. I had a mammogram which didn’t show up much of anything, but then had an ultrasound too, which did. Young womens breast tissue is dense so as far as i know, mammograms aren’t very useful which is why they do ultrasounds. We have no family history ( before me!) but because of me, my 2 sisters went for check ups and my elder sister who is 42 had mammogram and ultrasound and my younger sister who is 33 just had ultrasound. My friend who was 34 just had ultrasound and they said to her that they don’t do mammograms for under 35s as they don’t show much.

I think there are specific guidelines on which scans to use ( not entirely sure), but i would consider seeing a solicitor perhaps at some stage if you can face it. If you work for the nhs, you may well be in your union and could access their legal services to be put in touch with a good clinical negligence solicitor. it should not cost anything and you could do a lot of it over the phone.

Now i am worried i have worried you! Sorry if i have, pm me any time

Vickie
xxxx

8

Hi i had a similar thing i went to clinic in 07 with lump had all the test and biopsy told by the ultrascan that it was not normal then Dr said it was just a fatty lump and want to leave it a lone
went home and in 08 i went back as i had noticed bruise marks were lump was and i was dx with grade 2 3/17 lymph nodes infected i am just realising now as i have time to reflect on it all i should of insistited on a second opion and now i would advice anyone who is not sure to.
I send your my best wishes x
poppet

9

Hi Gillian,

Just wondered how you were. Haven’t seen any postings from you recently.

Dotty2 xx

10

Hi Gillian I have just been diagnosed with duct ectasia. My doctor is telling me not to worry
Cheers Debbie