Just diagnosed MBC - occult. Relieved

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Hi all, I’m actually quite pleased to have found you all. I’ve spent the last 2 months seeking a primary cancer to my liver & spinal secondary cancers. Mammogram & MRI of breasts clear. Lymph node biopsy showed nothing & recently had a liver biopsy, and the little blighters were there from my breast. Not sure yet what type as the nurse didn’t understand the pathology. 

Anyone here with occult bc as primary?

Tbh my feelings at the moment are ones of relief. It’s been hell waiting.

  • Hi  

    I'm sorry to read that you've been diagnosed with secondary breast cancer, but I do understand the relief in at least having a diagnosis. Hopefully, your consultant will now be in a position to be able to treat it.

    I haven't had occult breast cancer but noticed that your post hadn't had any replies yet. I've done a search in the group and found  posted a fortnight ago about having this as a primary. I've 'tagged' her into my reply and hope that she'll pop on to share her experiences with you.

    While you're waiting for her to reply, it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    x

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  • Hi Islabobs

    i was diagnosed in November with non invasive breast cancer but due to the size of it my only option was a mastectomy. They did the mastectomy in December and a sentinel lymph node biopsy at the same time and said they were expecting them to be clear due to it being non invasive. I went back in January for a check up and the results of the biopsy. The biopsy of the breast they couldn’t find any invasive cancer but unfortunately cancer was found in 1 of the lymph nodes and they said that there must be invasive cancer somewhere but they can’t find it. I now have an appointment with an oncologist on the 14th February to discuss further treatment. I hope your doing ok xx

  • Thank you. Staffsgirl has replied but I think her situation is similar although the opposite problem as they found the primary cause & believe there are secondaries but can’t find them. With mine, the secondaries alerted them to the fact that I had cancer elsewhere. Have filled in my profile now & will respond to Staffsgirl. 

    Thank you for helping.

  • Dear Staffsgirl, 

    thank you for responding. Do they think that it might not have travelled beyond the lymph node. Is that a possibility?

    I have the opposite problem. I had liver and back pain & lesions which led them to believe there was another primary cancer somewhere. They strongly believed it was breast but I have had 2 clear Mammograms, clearly CTs & MRI as well as clear armpit biopsy. However a liver biopsy has confirmed it is breast cancer. I have yet to receive the full breakdown of what type etc.

    It sounds like we are 2 sides of the same coin. How you get some answers soon x

  • Have I misunderstood? Are they saying they are looking for another breast cancer in addition to your non-invasive one?

  • Hi Islabobs

    they think it must be in the breast I had removed but they just can’t find it. I haven’t had any Ct or mri scans just the mammogram. I’m going to speak to the oncologist on Tuesday and ask about scans. I have been told I will need radiotherapy to my chest wall and my left armpit. It’s a bit scary with them not finding any invasive cancer. 

  • Staffsgirl, Yes it sounds like MRI/CT is the way to go. The waiting is horrible. I’ve had long waits between each investigation. Let us know how you get on.

  • Hi Islabobs

    the oncologist phoned the day I was meant to see him to save me going to the hospital. They have decided to hold off on radiotherapy and I have got to have another operation they are going to do an axilla lymph node clearance on the 2nd March to see if anymore lymph nodes have cancer in. 
    hope your doing ok