Hey everyone, I’m 40 and I’ve recently been diagnosed with Occult Breast Cancer following what I thought was a pulled muscle in my armpit. Fast forward 2 months and after all the tests cancer cells found from biopsy of armpit lymph node but no primary has been found (MRI/CT scan) I’ve been told I will need 12 weekly sessions of chemo which feels very scary. I’m looking for anyone else newly diagnosed and anyone with Occult breast cancer as it feels very strange!
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Yes I had this. Nothing showed in my breast on either mammogram, CAT scans, MRI scan or PET scan. The lump under my arm was diagnosed as triple negative breast cancer. It’s a long story but in the end after chemo immunotherapy I had a mastectomy and lymph node clearance. Afterwards the pathology showed that the cancer in my lymph nodes had responded to treatment but was also a tumour bed in my breast that had been fully responsive to treatment and some intermediate dcis. Your treatment may be different depending on the type of breast cancer in the lymph nodes. Also they thought I had secondary breast cancer in my lungs so I had chemo immuno first. But the nodules in my lungs turned out to be benign. It is a very weird feeling to have a cancer in the breast that doesn’t show up at all but it can be successfully treated!
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Thank you for that information it’s really useful, I hope you don’t mind me asking but how long did your treatment go on for? (Obviously I know will be some differences) Are you now cancer free?
Hello! I was also diagnosed with occult breast cancer found in armpit node only. I’m 34 years old. I’m 8 weeks into my chemo so happy to answer any questions you have!! It’s hard to find much information about this type of breast cancer so happy to chat privately too if you wanted 
my plan is 12 weeks of taxol/carboplatin then 4 cycles of EC and I’m on immunotherapy along side as mines triple negative. Then I’m having surgery to the lymph nodes but they have said they aren’t going to do any surgery to my breast or radiotherapy but I’m going to question about the radiotherapy as a lot of research says to use this for occult.
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Hi. My treatment was back to front and upside down! So I had six months of chemo immunotherapy. Then I had a few months off whilst and I tried to decide what to do next! Then I finally decided to have a mastectomy and lymph node clearance. That was just over a year ago. I am currently cancer-free. 
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That’s amazing! I have just found out I’m HER2 positive so that has changed my treatment plan but it’s so encouraging that you are now cancer free!
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Hi, I was diagnosed with occult lobular cancer in June this year (ER-, PR+, HER2+). No imaging (mammogram, contrast mammogram, ultrasound, contrast mri or PET scan) has found the primary tumour. I found a lump in my armpit which turned out to be a lymph node that was cancerous. I’m almost half way through chemo (4 x EC/ 12 x taxol/carboplatin), then I’m told I’ll have lymph node clearance and then radiotherapy.
I’m worried about not being able to see it, and then not being sure that it’s gone. I’m also worried about knowing when (if) it comes back as there are no signs even now that show I have cancer other than the lymph node that I found. If anyone has had a mastectomy (it hasn’t been offered to me as I’m told research shows outcomes are no better with mastectomy for ILC) I’d be grateful for advice. I’m considering arguing my case for a mastectomy to be on the safe side.
Mel
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I was diagnosed with ER+ HR2+ stage 3 occult breast cancer over two years ago. They looked everywhere for the primary but could find nothing. I was told it might be too tiny to see or it was there but it had gone by itself or that it was never there at all except in my lymph nodes. Not enough people get OBC for them to know how to treat it. At no point did anyone discuss mastectomy with me. They used to do mastectomies for OBC on the assumption it must be in there somewhere but changed their minds some years ago. I had an Axillary Node Clearance then chemo, Herceptin and I’m taking Letrozole for 7 years. I turned down radiotherapy which was probably a stupid thing to do but I’m OK so far. I sometimes worry that it might still be in there and growing from “tiny” to something bigger but I’ve had two of my annual mammograms and all is well so far.
If you asked I’m sure they’d explain why they think a mastectomy would not be right for you.
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I know what you mean about worrying how you’d know you had it if/when it comes back. Lightning-like pains in the lymph nodes alerted me to something being wrong. Now that the lymph nodes have been removed how will I know? I also think perhaps my lymph nodes spring into action and fought off the cancer and now they’re not there to do it again.
Dear Magl
Thanks for sharing your story. I think part of the process I’ll go through this year will be working on the psychological aspects of having occult BC. I can imagine it’s the same for everyone, we just have the added ‘did they get it all’ question as we have no measure. I’ll have another conversation with my surgeon when the time comes - they’ve started me On chemo first to see how lymph node responds.
I’m really glad you’re doing so well x
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Hi, I have now completed all treatment and am waiting for MRI/mammogram appointment for hopefully a year cancer free. I didn’t have a Mastectomy and jst full clearance due to the exact reason you have been told and that is through private health care, my surgeon even said there is now research to say that removing lymph nodes is no more beneficial but not enough at the moment so I ended up having around 10 removed but everyone has different amounts of lymph nodes. It is hard getting your head round that there was no tumour- therapy helps!
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I’ve just checked and you’re absolutely right. When I was diagnosed and being treated and I was frantically googling to learn more about OBC there was no mention of this new minimalist approach. All of a sudden there are articles galore. It sounds a bit too minimalist to me.
I totally understand why it feels like that, however they go with the evidence and avoid unnecessary surgery, they said if I was adamant they would do it but I wasn’t and trusted my surgeon and oncologist. It was also in a discussion with my breast nurse when we were the less then 1% difference it can make. I know people (very few) who have gone both pathways. I did have radiotherapy as they explained that should kill off any potential left over cells but you can only have radio in a place once which before I had cancer I didn’t know!