Sent home without the operation

Hello. I have had a 5mm lump turn up on the mammogram . Then the lump was w core biopsied and a week later I was told it is cancerous. Another week on I saw the consultant who said to operate 4 days later. She said they would put a wire in to locate the lump for the WLE and 4 nodes would be removed. But when I went in for the operation the new mammogram couldn’t locate the lump. A wire was put in where the lump should be but the consultant said she couldn’t operate as she couldn’t see where this lump is. So off I went home. I know I wil see the consultant again soon but…Anyone else had this happen?

Hi there Lurcher
welcome to the forums, sad you’ve had to join us but the people here are really great and you’ll get loads of support.
All I can say though is OUCH! What a palaver for you. I have not heard of this before, but it must be really awful for you. I hope that they get it all sorted out soon and that you know what exactly is happening. I’m sure there wil be heaps better replies than this, but thinking of you.
best regards
Ruth

I’m so sorry, lurcher. I hope they get back to you soon. That would be my nightmare. You show up, all ready to get rid of it, and then they send you home with it still there.

Hi Lurcher

Well I had a mark show up on a mammogram and had a core biopsy which showed surprisingly to everyone that it was cancerous. My consultant said it was very small and I had to have a WLE and 4 lymph nodes removed. He said that I would have to wait 3 and a half weeks for the operation as he wanted to work with the radiologist who found it. When the time came the radiologist was in fact away which meant a further delay but again he said he wanted to work with that radiologist as he knew where it was and any other radiologist would mean it was guess work. I felt it was a long time to wait for this operation but understood why. When I went in the radiologist found the mark again on the utrascan and put in the wire. Again I had a mammogram and it was difficult to picture as it was deep in to my chest wall, and the radiologist had difficulty finding it on the scan. But they did find it and the procedure went ahead and the results showed all had been taken out and the lymph glands were clear. All I need now is radiotherapy adn I have started Tamoxifen. So it might be worth checking that you have the same radiologist to find it again. Hope this might be of help, keep us posted and good luck.

Madeline

Many thanks for all the support! Thanks to Madeline as you seem to have the same type of diagnosis. My consultant said she would speak to the original radiologist and probably ask them to put the wire in as they have better equipment that her unit which sounds like what your surgeon did. Problem is the original radiologists are an hour and a quarter away from my local hospital. She has also talked about waiting two months for the lump to show up again.
Good to hear you have the nodes clear too. Did you have sentinal node biopsy? With this delay I wonder whether to ask for it again.
Thanks again for writing everyone.
Lurcher

Lurcher

I cant see why you would have to wait another 2 months for the lumpt o show up. I would insist on having the same radiographer. When my operation was cancelled the day before as the radiologist was away and it was cancelled for another 2 weeks, I wrote a letter to the Chief Executive and funnily enough they had me in the next week. As I understand it the national guidelines are that you are to be operated on within 4 weeksof diagnosis and this is what my consultant said. I would certainly persue this as it is cancer even if it is small. Sorry to be a bit clueless but I had 4 nodes removed - is that the same as sentinel node biopsy? I only had a core biopsy when I had the original recall. Hope this will be of help to you, hope you can write with good news.

Madeline

Lurcher - this is totally out of order. Wires are put in under ultrasound - I had this procedure done in April as my lump did not show on the mammogram but showed on an ultrasound and they then did a fine needle aspiration which was suspicious, hence decision to remove what was another cancer. Do let us know what happens.

Phew! Thanks so much for all of this to all of you- I thought I knew a lot but I am not clued up at all.
The latest is after I phoned the BC nurse at my local unit today and she said the consultant has spoken to the original unit that did the mammogram and biopsy. They are now saying to wait 3 MONTHS before the next mammogram to see if the lump has reappeared. Have the 3 cores they took out of the 5mm lump so broken it up they can’t see it? How wide is a core- 2mm?
I now think a lot about the consultant’s other offer which was a mastectomy- she didn’t recommend it as it ‘was too drastic’. But the BC nurse realised I was shocked at waiting so long so phoned back with an appointment to see the consultant on Tuesday 30th Oct. She also let slip about the ‘area of calcification’ which was never mentioned before.
Another question to anyone- do you know if they can tell grade/type of cancer from the core biopsy? I ask because when I phoned this site after I came out of hospital the woman I spoke to asked me this info. When I asked my local BC nurse- who is so helpful, phoning back etc- she said they don’t know this info until the lump is removed and tested including for receptors.
I do feel I am lurching around trying to get info.But this site has been fantastic.

I had a core biopsy. I was told I have invasive lobular cancer and it is grade 2. A day later the BC nurse told me on the phone that it is estrogen positive. I’m sure they know more, but you have to ask the “right” questions.

Good luck!

Hi Lurcher

A week after my core biopsy Iwas diagnosed with breast cancer and told that it was low grade and small. I feel for you having to wait 3 months. I would push to have the radiologist do ultrasound till they find it. Otherwise it seems that they are waiting for it to grow before they can see it. Obviously the only alternative sounds like if they cant find it they will have to take everything away to be sure. This was the prospect that faced me. I think you need to ask questions at your appointment and take someone with you if possible. Do keep in touch, I am sure they will do the best for you but you just have to be on the case I think.

Madeline

Hi Lurcher
I was dx with dcis at the end of Dec ( 2nd time around 1st one 8 years ago) a needle marker was put in on the day of my op, 2nd Jan. I woke up after the op knowing something was wrong as the bandage was over the wrong part of my breast, middle not on the left side. Told a week later no clear margins (surprise, surprise), so back again, again further tissue removed, this time told clear margins, only to find another tumour 2 days later! I ended up with a bilateral mastectomy at the end of march, my cancer grade 3, triple neg.
It was only when going through my notes with my bcn i had a look at the mammo of the needle marker that i realised that they had put this next to a tumour & had not covered the dcis. I was never told about the tumour before surgery & they had ample time to as i was the last on the list.
All in all it took over three months for all of this in which time two tumours had formed, my advise is as above take someone with you and question everything, it is your life they are playing with & they have a duty to give you the best possible care.
Take care
Louise xx

I have read all your really useful letters. Marylou- how very awful for you. Why can’t we be trusted with the information about our own condition? I will definitely be asking lots of questions on Tuesday.

ScottishHoosier-you were given all that info from just the biopsy!! It is what I have asked for but not been told. So they do know the receptors even from the biopsy. This is all so very useful- thank you.

Maisey/Madeline- thanks too. This has really given me a huge boost and I feel very ready to ask the questions and insist on answers.

And Olivia- thanks for that firm note -again it is what I need and to feel I am not being pushy but it is what I have to know in order to make decisions.
I will let you all know what happens Tuesday. At the moment I am writing out questions to ask. I need to have the answers to decide whether I can wait even 6 more weeks but will ask firmly for another mammogram back at the original site. At my current site they can’t find the lump on mammogram or ultrasound- but the the original people couldn’t find it on ultrasound either I think ( though this is another question to ask).

Thanks to everyone- you are such a support!
Lurcher xxx

When i finally went in to hospital for my operation, during the morning you go and see the radiologist who with the help of the ultrasound finds the offending mark and inserts a wire to the area so that when you finally go down later for the operation the surgeon knows exactly where it is as it is marked. No I am not wishing to alarm you as this procedure is stressful uncomfortable but honestly not painful at all. Anyway, I am telling you this because when my radiologist did this, he found the mark and then decided he did not like his chair so went and got another one. So when he started again he could not find the mark again and took some time to find it. After that I went for mammogarm with wire in place, no pain I can assure you, but again it did not come out properly as it was so close to chest wall, so I had more mammograms pushing myself further in and they got it. The surgeon works from the wire that the radiologist has placed and mammograms. What I am trying to say is that may be it is difficult for them to find your original lump but they have said it is cancer and it is still there and they must just keep trying to find it. I think it is very important that you get the original radiologist that did the biopsy. The fact that the lump is so small probably means that there is no panic, at least that is what I thought but I know that once you know you have something like this you just want it out. And you should do. I hope you are able to go with someone and get some answers. I know we are all different, and it is quite probable that you will have good explanation for everything, but I do feel that if they think you are questioning it puts them on their toes - I could be wrong. At the end of the day I have been very happy with my teams professionalism and very impressed with eveything so far apart from the dealy in my operation. Do keep in touch. I feel sure you will have the strength and get the answers you need to put your mind at rest a little.

Madeline

Thanks Madeline- this sounds like what I had done in the hospital. I was taken down to the mammography room and the wire inserted where they thought the lump should be from the mammograms taken at the other hospital… But at that site they have a better machine which had ‘axes’ The doctor talked the radiologists through. I heard her say, ’ Starting at zero axes, ladies’. But at my local hospital it was really from the photos they had that they put the wire in and the mammogram was taken to show the surgeon where to go. As you said, the whole thing is painless. I don’t mind mammograms just the awful positions you are pushed into to get to the lump.
I could tell they weren’t happy as the Dr who put the wire in went off to see my consultant. Meanwhile I went back to the ward to wait to have the op. There was another lady in there who had had her wire in before me and she had gone down to the theatre. Half an hour later the consultant came and said she couldn’t operate as she wasn’t sure where the lump is.Needles in haystacks was also said and funnily enough she said for the second time that this (the lump) might never have caused me any problems. Does it sound like low grade DCIS? Ah well, I do hope to get all the answers soon. Reading others’ experiences makes me feel I have had very fast treatment up to now- I would have had the operation within 10 days- others seem to wait weeks for just the biopsy result.

Lurcher

So, I finally get to know what I have- it is invasive ‘tubular’ cancer. This is not DCIS or LCIS and I will be getting another mammogram in 6 weeks time which will be 11 weeks after the biopsy. Problems causing the op to be cancelled could be bleeding or bruising when biopsy taken or that the biopsy has broken the original 5mm lump into such fragments that can’t be determined by the mammogram. My consultant repeats herself saying the cancer might never have caused me trouble. I could live with it 40 years and it might not do anything.
The pathologist has suggested it is Grade 1 but again it could be Grade 3, and it is oestrogen receptive so I will get Tamoxifen when the lump is removed. Why can’t I have rads and Tamoxifen now? They aren’t as good as when the lump is removed she said. What happens if the next mammogram fails to detect the lump? We think again she said. So far I am not going down the mastectomy route- but it may still come to that.
Thanks again for everyone’s support. I asked loads of Q’s today and she has said anytime I want to go back to ask more I can.
Lurcher