Hi everyone
I had breast cancer 7 years ago and am finished treatment after straightforward diagnosis, treatment etc. My dear sister however, aged 50, has just started treatment having been diagnosed with occult cancer, so they could not find a primary. An enlarged lymph node was seen on a routine mammo and biopsied showing hormone receptive, her2 negative ductal breast cancer but despite MRI of breasts and CAT of torso, no primary so called occult. She has had axillary clearance and just started 6 cycles of FEC and would like to know if anyone else has similar diagnosis. She is too anxious to use forum herself so I am doing the posting. Anyone out there??
I’m sorry I can’t help you but I’m sure somebody else can. The only thing I can say is that when I did my nurses training occult was described as a word that means hidden.
An American friend of mine had a similar diagnosis way back in the mid nineties - 1996? Long time ago, anyway. She also had no signs of the primary breast cancer, but had enlarged lymph nodes with cells in them that were indicative of breast cancer. She had chemo and Tamox, as I remember, but no surgery or radiotherapy, and she’s still fine. But it must feel even more scary than usual to know there’s something there you can’t get rid of with surgery.
I had a similar experience, in that the only sign I had of any problem was a small mobile painless lump in my underarm. I had clear mammos, ultrasounds and scans, but a core biopsy showed the lump to be an enlarged lymph node containing ductal carcinoma cells.
Eventually I had an MRI scan which showed 3 suspicious lesions, one which turned out to be DCIS and the other two invasive ductals carcinomas, one of which was HER2 positive and the other ER and PR positive, all were TINY…3.5mm for the DCIS, 3mm and 6.5mm for the IDC’s. I had a mastectomy, axillary clearance (only the one gland I had discovered was affected), 4 x FEC, 4 x Taxotere, 15 radiotherapy treatments and am currently on Herceptin and taking Arimidex.
A cyber friend of mine had a truly occult breast cancer, just like your sister, and received no surgery, but had the same chemo and radiotherapy as I did. Her cancer was triple negative so no other treatment. I haven’t spoken to her in a while, but she was doing fine when I last heard. (She is in her 30’s)
Welcome to the forums. You are welcome to send in your query to our team of specialist nurses via our ‘Ask the nurse’ service which you can find under the ‘Support for you’ tab at the top of this page, alternatively, you can call our helpline on 0808 800 6000 which opens Mon-Fri 9am-5pm and Sat 9am-2pm for more information on ‘occult cancer’.
Dear Justme Lyn, Sandra and Lucy
Thank you so much for your responses, I will pass them onto my sis. It is reasuring to know that management has been similar for others. She has had first chemo now, bald but cheerful and about to have second one.
I have recently been diagnosed with occult lobular breast cancer, with 6 out of 18 lymph nodes involved. My treatment has been delayed due to the fact that I have caught cellulitis around the wound and across my chest from the lymph node removal. It is gradually receding after many weeks of tablets, infusions, and now injections. I have to wait until the infection clears before having a port put in. My treatment will consist of 6 fec, 18 herceptin, 4weeks of radio therapy, and 5yrs of hormone tablets. I’m worried that they haven’t suggested a mastectomy to be on the safe side as they don’t know if there is a primary. It is so difficult to find out anything about occult breast cancer. Does anybody know anything more than me. Would it be a good idea to get a second opinion.
Hi Annie, as your sister’s bc is also hormone receptive, I would assume that after her chemo finishes, she will be offered hormone therapy (there are leaflets about this on the main BCC site).
It can feel scary to not have surgery - I haven’t, for a different reason - but chemo and hormone therapy should deal with any cancer cells remaining after her axillary clearance.
My oncologist explained to me that chemotherapy can eradicate cancer cells that are too small to be seen using available screening processes. So even if you do have, somewhere in that breast, a few tiny cancer cells that cannot be seen, they can probably be eradicated by chemo.
However, there is no reason why you shouldn’t get a second opinion, and if you would prefer to have a mastectomy then surely your surgeon would abide by your wishes.
I’ve been a bit poorly to check on replies for a few days, but am quite reassured by your answer. Thank you for taking the time. I think I’ll get on with the chemo as soon as I can get rid of this cellulitis, and think about the question of mastectomy.
One thing you might query with your oncologist, is why you are having 6 FEC for your chemotherapy and no Taxotere. It’s my understanding that if you are HER2 positive and having Herceptin, you would generally be given one of the Taxane chemos,as well as FEC, as apparently Herceptin works better that way. I may be wrong, but it seems to me that most HER2 positive ladies are treated this way, myself included. I had 4FEC and 4Taxotere, radiotherapy, and am about to finish a year of Herceptin. I also take Arimidex.
And just to reassure you a little, a friend of mine,in her 30’s, who like you, had occult breast cancer, has kept her breast, had 4FEC 4Taxotere and radiotherapy. Her cancer was neither Her2 positive nor hormone receptive, so she has had no further treatment, but she remains well almost 4 years on.
Hope you feel better soon, and good luck with your treatment.
Hi Sheltered
I have had 6 weeks neo adjuvant chemo (3 FEC and 3 Docetaxol) I was offered gland removal or a mastecomy and recon at the same time - I chose the latter due to my family history. I had 7 glands removed of which 4 had the disease. I guess it’s true when they say nobodies cancer is the same and treatment differs. I am due to have 5 weeks radiotherapy as well and my cancer isn’t HER receptive.
You’re quite right. Everybody’s diagnosis and treatment and options are so different, it’s hard to know whether you’re getting the right treatment, or options. I keep wondering whether I should have insisted on a double mastectomy as at my age I don’t really mind not having breasts. But there is no history in my family at all of breast cancer. My pre op day at the hospital yesterday was a nightmare. Nobody knew what was happening, where anybody should be,nurses missing, equipment missing, not enough exam rooms etc. etc. etc. The thing I’m worried about now is that the junior doctor spoke about a PICC line and I definitely want a Port a Cath, so I’m trying to check that out before my op on wednesday. Oh well, I’ve had a lovely day today and three more free days before I’m in hospital again. And we’ve got each other to talk to. How many good days compared to bad days would you say you got out of your three weeks between chemo.
