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Positive Mammogram/negative ultrasound and dismissed

10 REPLIES 10
kate78
Member

Re: Positive Mammogram/negative ultrasound and dismissed

Thanks for your message Tili and I will definitely come back tomorrow evening with an update so if this ever happens to anyone again you can direct them to my post!

I am now booked in for an MRI tomorrow morning at 9:40 (I am in Australia) The ironic thing is I work for a Breast reconstructive Surgeon that is from the UK. He is working closely with a Breast surgeon (who just did my mother in laws mastectomy 🤦‍♀️) who has viewed my 2D and 3D mammogram this morning and said she can see exactly what they’re talking about but not to worry because the ultrasound didn’t show anything. I have heard so many stories where the ultrasound doesn’t show anything. I am told the MRI is the Rolls Royce of imaging and they always do them in the UK. They don’t offer them here unless you really push for it. If they can see it on that then hopefully they can biopsy it from that. I’m not scared of being told again that it’s cancer, i’m scared to be sent away with them not knowing. I hope I can provide you all with some feedback too as to my weird “mass” Take care and thank you so much for taking the time out of your day for yourself message. Reading real stories has made me feel a lot calmer. I’m not diagnosing myself, it’s just reassuring to hear i’m not alone xx 

Tili
Member

Re: Positive Mammogram/negative ultrasound and dismissed

Kate, thinking about you, hopefully the next next few days pass very quickly for you, take good care of yourself, wish I could take this pain away.

Lots of lovely ladies of this site are around for you, with good advice, however at the moment you have to wait for your next appointment, finger crossed for a good outcome.

Biggest hug Tili 🙏

kate78
Member

Re: Positive Mammogram/negative ultrasound and dismissed

Thanks so much for responding,

I go from hysterical laughter because I can’t believe the way it has all unfolded to thinking it’s a bad dream and someone who gave me that diagnosis has got it very wrong and if they have got it right then i’m also grateful i will know in a couple of days what i’m dealing with and can make a plan. I think it was the “you’ve got cancer” hold on “no you don’t” and we will see you in 12 months 🤦‍♀️ I am at the thought process now of taking each day as it comes and i’ve stopped googling! I will keep you all updated xx 

Jaybro
Member

Re: Positive Mammogram/negative ultrasound and dismissed

You’d be superhuman if you weren’t upset and angry. One thing I’ve learnt is to be honest about your feelings. Listen to them, don't bat them away and don't pretend for others. Cancerworld is not a place any of us wants to be in but the least we can do is be ourselves (even if that is a quivering wreck like I was for a while!). So channel that anger and admit to yourself that you’ve got it right or you’ve overreacted. Then deal with it. In theory, that’s it - gone. Theory 😉 xx

 

kate78
Member

Re: Positive Mammogram/negative ultrasound and dismissed

Thank you so much and I thought the same thing. Are they looking at the same persons scans?! 

They did however show me my first mammogram when i walked in to have the second diagnostic one. They were so informative. She said this is what we are looking at and we can see it very clearly from every angle. She then took the second mammogram and only took 3 photos, she said, as you can see Kate they have shown the exact same pictures so we know what we’re dealing with. I’m now wondering if they saw scar tissue and were just too embarrassed to say. I am very overwhelmed and confused so my heart goes out to everyone going through Breast Cancer. It’s a very confusing time and these forums are amazing because it’s doesn’t make you feel so alone x 

kate78
Member

Re: Positive Mammogram/negative ultrasound and dismissed

Jan,

Thank you for taking the time to reply to me and being so honest. I was so impressed at the speed they went with my appointments and testing and they were literally amazing. The fact that the doctor who also gave me the diagnosis then followed up with a private surgeon to make sure I got the MRI was also very caring. What an awful situation for them to also be in. The radiologist doing the ultrasound I have since been told is terrible but I can’t concentrate on that now. I am very grateful that I can go privately and have the MRI done so quickly. From what I have read some people wait months and your story is just so heartbreaking. It only takes that one person to go that extra mile like yours did and take the biopsy. I work for a reconstructive breast surgeon so I see and hear a lot of stories daily. I think that’s why I am so paranoid. They have seen something, they have felt something and were so confident they told me and then just dismissed me after the ultrasound. I have heard it is very hard to locate lobular on ultrasound so I am so glad they looked further into yours. I wish you all the very best and I will definitely update you as soon as I know anything because if I can just help one person to feel a bit more at ease like you have done with me, I have done my bit. I will try not to get upset and angry and take one test at a time. Again, thanks so much xx 

Jaybro
Member

Re: Positive Mammogram/negative ultrasound and dismissed

Hi Kate

A diagnosis of breast cancer in itself is very hard to take but being messed about makes it even harder, even when you have good support with you. However - and I’ll be blunt - this is how it is and most of it is unavoidable. Each diagnosis is unique. Much of it initially depends on the interpretation each one of the specialists will put on things. It’s only when things are whittled down to scientific specifics like histology and pathology lab tests that the certainties are revealed. And the machinery breaks down, because they are very delicate precision instruments. Patients who have radiotherapy could regale you with tales of waiting all morning because one machine is out of commission and everyone is affected!

It is quite common, unfortunately, for yes/no/maybe opinions to be expressed. If you are lucky, you will have sympathetic people taking you through the ramifications and keeping your sensitivities (meant in the best way) in mind. But, as you found, even though they managed to cram all that into one day (which is pretty impressive, even if it didn’t feel it) it is frightening and painful. I’ll tell you a bit about my experience:

I had 5 different diagnoses in 4 weeks. I took the private route, assuming it would be quicker and more tailored to my specific needs. It started with my GP saying she didn’t think I had anything to worry about as, although she could feel a lump between my ribs, she believed it was scar tissue from having a large fibroadenoma removed decades before. All I had were two unusual freckles that had suddenly appeared on my areola and a clear mammogram a few months before. The private breast consultant, when he came back from his holiday, expressed the same opinion, supported by the radiologist who said my ultrasound was clear. They did another mammogram and that too was clear. You can imagine my relief - my mum had bc twice. The consultant did a biopsy of the freckles thank god. The following week, he said he was stunned and sorry but I had breast cancer and gave me my options, nothing too radical.

I asked about the clear ultrasound and he said they’d do another one but the nurse warned me that this radiologist was unpopular because patients thought he was inconsiderate. He was ‘brutal’ but he found two lumps, one between my ribs, one running from nipple to armpit. He did a sentinel node biopsy which showed not only did I have bc, but it had already spread to my lymph nodes. So nothing to worry about had now changed to needing a full mastectomy and a full axillary clearance where they found 19 of my 21 lymph nodes were infected. To cut a long story short, I had both types of cancer, lobular and ductal, one hormone positive and one triple negative. The full works had to be ‘thrown at it’ to use their expression so I transferred over to the NHS as the private oncologist worked in both and advised this. They were wonderful, way better than the private staff.

I’m not making this about me. I’m trying to show how specialists are human and diagnoses from scans are only as good as the people doing them. I did put in a complaint about the first radiologist, more concerned about keeping his patient happy than delving deep as he should have. In your case, it’s the conflicting opinions that are so shocking and the manner in which information is being given to you. A cancer diagnosis should always be delivered face to face by a consultant. You probably won’t get the results of the MRI immediately - radiologists are not meant to give opinions to patients - but the way this hospital worked on you last time, maybe you will be very fortunate and be told the same day. I hope there is a simple explanation but it may unfold slowly, as mine did. On the other hand, it may have a simpler explanation with a great outcome.

You may be angry at them and the conflicting opinions thrown at you and you are entitled to complain via the hospital’s PALS service, but people are fallible and breast cancer is not always easy to diagnose. You were seen remarkably quickly and they packed a lot into one appointment. That’s not how it usually works. Maybe they should have held back rather than expressing unsupported diagnoses. However, the picture is looking a lot better for you now, downgraded and possibly not even breast cancer - breast lesions have many causes and explanations that are not breast cancer and they are very common. Let’s hope you will be lucky. Remember that 60-90% of referrals turn out to be benign cases, not breast cancer.

Meantime, stay off Google - it is NOT a good source of information for people in the early stages of diagnosis and plays havoc with your emotions (because it has none). Maybe find ways to distract yourself, practise meditation, mindfulness, go running, bake - whatever works for you - and let’s hope for a good outcome for you. Keep us posted!

Wishing you all the best, and sorry for the rambling post,

Jan x

Tili
Member

Re: Positive Mammogram/negative ultrasound and dismissed

Dear Kate,

My heart goes out to you, can’t believe what I’m reading you need some advise, maybe a second option all these hours at the hospital, just wondering if notes have been mixed up with this outcome what’s going on.

Thinking of you, wishing you well. Please keep posting and let us know the outcome 

with love and biggest hug Tili 🙏🌈🙏🌈

Maybe give the nurses a call on this site this morning for a bit of reassurance 

 

 

 

 

 

 

 

kate78
Member

Re: Positive Mammogram/negative ultrasound and dismissed

Thanks so much for replying. It has been a huge roller coaster and i just want some clarity and answers now! Is this normal?! Bring on the MRI. Please tell me this gives me definite positive/negative results x 

scientistamafier
Member

Re: Positive Mammogram/negative ultrasound and dismissed

Wow! What a rollercoaster of a day you had. I hope the MRI scan can clarify what exactly is going on.

I wish you all the best

 

kate78
Member

Positive Mammogram/negative ultrasound and dismissed

I feel very fortunate that I have come across this forum and just looking for some support, similar stories and outcomes. Monday i was phoned from a mammogram screening clinic to say they had viewed a “mass” on my left breast that needed further investigation. I was then booked in urgently at the breast screening hospital Wednesday. I took a work colleague who is a specialist nurse consultant for support. I was taken through for a 3D mammogram and the radiologist asked if I would like to see the mass that was seen on the first lot of imagining. She showed me and it looked huge! it was however only 12mm. She then took only 3 pictures of my left breast. She said it could clearly be seen on the 3D and the doctors/radiologists would view. I waited about 4 hours and was then taken into a room with my friend and a breast physician. She didn’t mince her words, she said you have Breast Cancer and we are looking at a category 5. My friend questioned her on the likelihood of it being benign and she said you’re a nurse, it’s not. She then went through all of my referrals and the appointments she had made the next day for me to see a breast oncologist, surgeon, MRI referral and referral for counselling. She confirmed my GP and Breast surgeon and said they were good friends and she would phone and I would be well looked after. She then did a physical exam and said she could feel it and marked it for a core biopsy and ultrasound. Waited another two hours and then was called in a surgical room. my friend again was allowed to come. They had 4 other people in the room. The radiologist started the ultrasound, kept checking the mammogram and going over and over my breast. Said she couldn’t see anything and nothing was there. I was clear. Told me to get dressed and then said i should be lucky i don’t have cancer. She told me to have another mammogram in 12 months. I am absolutely shocked and confused. I then had a phone call from the surgeon the next day to say the physician had called her and She was organising an MRI. Which is Wednesday. The hospital didn’t do an MRI because the machine was broken! the referral says down graded to category 2 and query lesion. Can anyone give me any reassurance or had anything this disastrous happen? If you have read this far i’m very impressed!! Would love some kind of clarity that this is normal. How do you tell a patient they have cancer without a biopsy and then tell them they’re ok?