Occult breast cancer- how can you ever trust another scan?

The trouble in such a situation is that while you could trust a positive result, which nobody wants to see, you are right that a negative may not be reliable. I think you should bring this up with your consultant and ask them to tell you how they intend to verify a negative. I would still do the scan though, just to be sure there is nothing visible.

Hi Historywoman I do feel the same as you, although I am afraid I don't have any answers to dealing with the scanxiety, apart from talking to a breast care nurse for reassurance. My BC was also occult on mammogram and the MRI didn't pick up cancer in the lymph nodes either, therefore I am afraid I don't really trust scans. I just have a mammogram on the remaining breast every 12 months. Do you have a yearly MRI?  I have asked multiple times for an ultrasound on both the remaining breast and on the mastectomy side for reassurance due to my history, but this has never been agreed. Each time I have been told that they will only ultrasound if you find a lump - I thought prevention was key?! Besides paying privately for an ultrasound every year (I am considering that) I don't know what to do. The reason my BC wasn't found earlier was partly due to clear mammograms giving false reassurance. Having said all this, I absolutely don't want to worry anyone reading this because we have to go with expert advice and I know I am one of the exceptions rather than the rule. Good luck for your MRI. x 

Thank you PictureThis2. Yes what’s happened to us is unusual. I had my first national programme mammogram- all clear - in September 2019. Then from Aug 2020 when I took my running bra off to see a weird scab on my right nipple, the story took several months to unfold. At the breast clinic I had a high resolution mammogram and ultrasound- nothing to be seen. I had a 2cm lump and I was put on review. On my next visit I think it had changed and the surgeon had a stand up row with the radiology consultant about giving me a needle biopsy. She was very grumpy with me but at the end said ‘we wouldn’t normally pick this up but because HE has insisted we look at this particular area, I can see some subtle changes’ (not really very reassuring about ultrasound generally!). 

My lymph nodes still looked normal and continued to do so on MRI. I asked the Breast Nurse how common it was to have correlation between MRI and sentinel lymph node biopsy and she said usually quite high. Not in my case. I went from stage 1 to stage 3 with a 6cm tumour, 2/3 of lymph nodes positive and also signs of extra capsular escape. Oh and an upgrade - from grade to grade 3. All after an initial clinic letter that said “if nothing changes I’m confident we can discharge this lady at her review next month’.

I’ve got an oncology psychologist and we have been working on the trust thing. I’d happily pay for private imgaging if it offered better chances of accuracy. I’m sorry about your experience and can relate to it. Having a falsely assuring scan is absolutely rubbish xx

Thanks Historywoman. It sounds like you have had a tough time of it and I can relate to the shock of finding that a 'clear' scan was not actually clear at all. I am sorry you had to go through all that. I still struggle to understand how my cancer somehow remained invisible to all that powerful diagnostic technology when the lump was very obvious to touch! I am small as well - it wasn't as if there was anywhere for it to hide! I do think an alternative regime of scans or something should be in place for people with very dense tissue who have a history of occult cancer. The oncology psychologist sounds good! I hope things work out for you and wish you all the best with everything. x

Hi Historywoman,

A private mammogram/scan is no reassurance, I had 2 routine mammos that I paid privately for after a bad experience in the NHS also thinking it would give me a better service, it didn't they reported my calcifications as benign when they were not, so its no guarantee. 

Thanks @peterawake. The only thing I could trust now is a biopsy. I do sympathise. I had calcifications on both breasts which I was told at ultrasound were benign. Obviously subsequent events proved that was not the case in my R breast. I do wonder if I should have asked about biopsy of L one. Anyway it’s itching like crazy in the last 24 hours, so I may be about to put that to the test. Hoping it’s just letrozole side effect, but I have a call out to breast nurse 

Hi Historywoman,

Would you mind me asking from them doing an ultrasound on you and stating benign calcifications, when did you actually find out the calcifications weren't benign ie what was the length of time between? 

Hi Historywoman. I understand your anxiety. I had a lump identified with my routine mamogram 3 years ago. I had an ultrasound scan and they decided it was benign. Three years later the same lump was identified and they decided a bioosy  was required. The consultant carrying out the biopsy expressed surprise that no biopsy had been done three years before. The lump was cancerous and had tripled in size. I too no longer have faith in the scanning process and the decisions made.

I've just been for my first yearly mammogram following BC. I asked about other scans because my lump didn't show up at all in the mammogram when I was first diagnosed, even though it was almost 4 cm. I had found a lump so I was also sent for ultrasound and had biopsies, and then later an MRI.

The person this week said I should call my BCN to see if they would send me for an MRI. She said it was unusual to have two occult breast cancers but mine wasn't occult, it was because I have dense breast tissue that mammogram didn't detect it. 

I did speak to the BCN about it about 6 months ago and she said I should be regularly checking myself and any worries at all, I should get checked out. She said the mammogram is just a catch all. 

It has made me not that worried about the mammogram results as I'm assuming it won't show anything regardless!

I haven't called BCN yet, but I may call for advice. 

Sorry peterawake just catching up. 7 weeks for biopsy confirmation. A month after the statement about the calcifications being benign I was reviewed in clinic. This was when surgeon insisted on biopsy and had row with radiology. 3 wereks after that, results