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Occult Tumours

6 REPLIES 6
Guest user
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Re: Occult Tumours

Sorry to join this so late but have only just registered. I was diagnosed in 2011 (wle/slnb/chemo/radio/letrozole) and imaging problems lead to an agreement that I receive annual MRIs. The first was clear then the second (July this year) showed a malignant area. It was a 55mm occult tumour which hadn't shown on 3 mammos, 1 ultrasound and 2 MRIs I had to have a mastectomy and also decided to have a risk reducing mastectomy on the other side. So glad I made that decision although it turned out my risk is far greater from malignacy in the axilla fat tissue which indicates a likelihood of distant disease. I start chemo tomorrow followed by radio. My concern now is the possibility of distant occult tumours despite clear bone and CT scans.
Guest user
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Re: Occult Tumours

Hi S hope all goes well with your surgery when it happens! Hope there's nothing lurking when you have it done, occult wise. Big surgery, but I think you are doing the wise thing. I feel like my saftey net is gone with no imaging and life is waiting for the other shoe to fall. Only 2 weeks since double mx so will give myself time to see this a different way, maybe just a bit negative right now.xev
southpool
Member

Re: Occult Tumours

Post
my onc told me occult tumours are rare but not unusual enough to make me famous!! There is very little research as a result so I think they just treat the same as non occult. I am at a large teaching hospital & they reckon they see approx 1 a year and nothing they see has made them change the protocol. It is scary though so a happy with my decision to have risk reducing surgery.
S x

Guest user
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Re: Occult Tumours

Hi S, thanks so much for reply. Occult tumours are pretty scary, you are being wise reducing your potential risk. I lived in Northumberland at first diagnoses 04, and was given MRI imaging due to 2nd tumour being occult. I thought this would be the case when I moved here, but have been refused this as an option. I can no longer have mammo, due to double mx. Yet I have just had another tumour on the first mx site, 27mm, despite being examined every six months. I feel like I have no saftey net. I understand there are protocols for treatment and investigations but sometimes individuals don't fit these. If I could afford private imaging I would do that, otherwise I just have to live with waiting for the other boot to fall. Hearing from you though, means I am not the only one doing that. I have never met anyone else with occult tumours, thank you for replying! Po. X
southpool
Member

Re: Occult Tumours

Hi
i had an occult tumour but slightly different to your experience. Found a lump under my arm & mammo, ultrasound, MRI & CT failed to find anything in my breast. Opted for mx & pathology found 2mm DCIS & lots of papillon but no invasive lump. 4 lymph were affected 1 4cm & 2 with micro mets. My hospital also say no CT scans just mammo & physical exam. I have no faith in this so have decided to have risk reducing mx on my right side. It may seem a bit drastic but psychologically it is better for me.

mammos seem standard procedure.
s x

Jo_BCC
Member

Re: Occult Tumours

Hi Post

Welcome to the BCC discussion forums. While you are waiting for replies from your fellow forum users could I suggest that you give the helpline here a ring and have a chat with the staff about your concerns, they're here to support you. Calls are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2

Take Care.

Jo, Facilitator

Guest user
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Occult Tumours

First diagnosed 2004, WLE, didn't get margins so on to mastectmy/reconstruction with lymph clearance. Second tumour found at pathology, called occult as it didn't show on imaging. Second diagnoses Mar 2013, tumours in remaining breast and reconstructed side. Again some of the four tumours did not show on imaging, mammo, ultrasound. My question is, has anyone else had this experiance? My surgeon is refusing any imaging in future, saying its not needed, palpation (feelin) for lumps is all that's required. Since I had 27mm tumour in previous reconstructed side,I worry that's not enough. Tumour was found on CT scan, which was done by plastics team for adhesions, not by surgeon. Probably saved my life, ssurge breast surgeon denies I need imaging in future. Anyone have similar problems.?