Occult Breast Cancer?

JRose10

I'm posting this here because I don't know where else to post it and because I'm stage III)

 I have occult breast cancer. My symptoms presented in my axillary nodes. I had mammograms, ultrasounds, xrays, CT scans, MRI's and bone scans but they couldn't find the primary source. I was then presented with two options, further testing to try and find the primary or mastectomy to see if it could be found that way. By now it was 2 months since I'd found the lump in my armpit and nearly a month from my dx. I opted for a mastectomy (right side) knowing there was a possilibity that the primary would not be found in the breast because I knew the cancer was in the nodes and wanted to get my treatment underway.

In August I had radical mastecomy (ironically, on my birthday - I call it my rebirth day) and sure enough, they were unable to find the primary in the breast. I did have 15 involved nodes though.

So, I've got stage III ER-, PR- Her2+ occult breast cancer.

Does anyone out there have any experience with occult breast cancer? I avoid googling - too much contradicting info out there.

Karina121293

Dear Rose, sorry you haven't found anyone with the same dx yet. This is what I found on this site. They are old posts, but you may as well PM the members and get some information.

Good luck. 

http://community.breastcancer.org/forum/5/topic/737731?page=1#idx_3

kathleen1966

This is not the first time I have read of Her2+ cancer showing up in the nodes first.  I am sorry you are in this very frustrating situation.  I hope you hear from someone else who has had a similar issue and is done with treatment and can give you lots of good advice! 

angelsister

Hi jrose, this must be really difficult to deal with, im so sorry. No one ever referred to my sisters bc as occult but hers was diagnosed from bc cells in her bone marrow biopsy. She'd had mammo and mri and no one could see anything. I read that ILC doesnt always 'set up camp in the breast but marches out single file' which is a scarey thought. I was just wondering if this is how you can get node involvement and not find a primary? I hope you're treatment is underway and that others are along soon who can give you more info. Best wishes x

edited to add they did finally identify a <1 cm area in her breast but after chemo it completely disappeared.

ma111

Jrose10,

I used to be occult tumor.

In 2009 I also found a soft spot in my right axillia. MRI, PET, CT, Mammogram, nothing showed anything but nodes, no primary found. The bx of the nodes in my arm pit came back breast cancer. I started chemo 2 weeks later then had axillary clearance and rads. One and a half years later a rash and skin changes appeared. The bx and appearance came back inflammatory breast cancer.

It's rare but happens. I think it just plain sucks because the diagnosis is so far into the cancer. Watch carefully for a rash and insist on bx if you see something. I have read that inflammatory will do that. It's aggressive and spreads before it will grow in the breast. Since you had a mastectomy, maybe you wont develop a rash. I had radiation on the side effected and got a rash.

I wish you all the best!

JRose10

Thanks everyone.

ma111 - the reason I opted for the mastectomy even though by that time they suspected they wouldn't find the primary was because I was hoping to 'nip it in the bud'.

ma111

I think you made the correct decision. I also read that they don't find the tumor with mastectomy, however, they would not have been able to find mine.

MSSWISS

hallo, I have been googling occult breast cancer and saw your entry on line. I have exactly the same diagnosis as you but my enlarged node ONLY showed up on a routine mamo as it was so deep so thank goodness I had that checked.Had all my nodes out (36) under arm and 6 had cancerous cells but after every scan imaginable there was no evidence of cancer other than in the nodes. I*;ve had 11 cycles of chemo, with scalp cooling, which worked (thankfully) and 25 days radiation to right breast which is still 2 cup sizes bigger now!! Got multiple pulmonary emboli due to chemo (Blood clots on lungs) which wasn't great so now Im on Warfarin......Now, im on Herceptin for a year. As far as Im; concerned, my nodes did exactly what they should be doing. i.e. the floating cells from my breast regressed to the nodes and got stuck there. They have now all been removed, my body has had a chemo wash out and cancer is destroyed........

Anonymous

Wow, I never heard of this type of BC.

I found this article.

Click here: Axillary node metastases with occult primary breast cancer

cs13

Hi JRose,

I have occult BC, as well. It presented in the nodes, only 2 positive luckily. It is therefore stage 2. I had 4 mammograms, 4 U/S, breast MRI, Pet Scan, nothing showed up. I am doing chem now. One of the nodes was 3 cm. I am ER +, though which is supposed to be a better outcome.