Primary occult breast cancer - anyone else??

Hi Sara,

I'm sorry that you find yourself here but welcome.  I haven't heard of occult breast cancer but can understand what it is from your description.  Basically the lymph nodes are reacting to something in your breast that they cannot see.  My BC is something similar in that I found a lump in my armpit which was a lymph gland reacting to something in my boob.  They could not pick up a primary tumour on the mammogram but could on the Ultrasound, measuring about 10mm but hiding well.  Thank goodness for that lymph gland! 

Your chemo will be sorting out a lot and shrinking/killing what is there in both your lymphs and breast.  It is very treatable at this stage but there's no getting away from the fact that the treatment itself can be gruelling.  Our treatment plans sound very similar.  I am on my 2nd lot of FEC-T of 6, then I will be due an op (hopefully lumpectomy if the chemo does it's job and node removal) then RT.  Do go back to your team if the nausea is really wiping you out as they can give you different drugs that might work better for you.  It is very debilitating, isn't it?  Don't feel bad about feeling down - it is totally natural!  It is a feck of a shock to find out you have cancer.  Can other people help with your son?  Don't feel bad about that or the teaching.  Do what you can, when you can.  People will understand. 

You are not alone as you have now found friends here.

All the best and take care,

Linda xx

Hi Sara,

I don't find myself with the same diagnosis as you have. But I do find myself often with the same feelings as you have. I think these feelings will go with every single group on this website. No matter which cancer you are battling with or whether it is you or a carer.

On the plus side you have posted and you will get many great pieces of advice. I was in teaching until retirement and I used to tell staff to bring back a 'golden nugget' from any training they went on. If you read some of the threads on this site you will find many many golden nuggets to help you.

And if you don't; this is an excellent place to lose or find 'the plot., No one is judgemental here and everyone is a great listener. Read on

Good luck and take care. And do remember asking for help makes everyone feel like they are achieving something towards your recovery.

Leolady aka Lindsay now post op 24hrs and known to gallop in a Miranda style to surgery (hope that made you giggle)

Hi Sara08. I have occult breast cancer too. No tumour was found in my breast either despite a mammogram, an ultrasound, a CT scan and an MRI. A swollen lymph node was spotted though which a biopsy proved to be cancerous. I had surgery on 2nd October to remove underarm nodes. 11 were removed and 5 had cancer in them but I don’t know the size of any. I have just had the 3rd of 6 Fec this week. I’m not having Fec-T because of my age ( 70’S).  After chemo I’ve to get Letrozole and Bisphosonates. 

Many thanks for your comments. Your words echo those of my friend who has been through this a few years ago. Some days it’s just hard to hang on to the positives! Hopefully today will be a better day. 

Thanks for your reply. Sounds very similar to me except the treatment is different. I’m on chemo first, then due for surgery and RT. It’s the latest change of chemo that’s floored me but I’m hanging in there trying to remind myself that it’s temporary and I’ll have finished all treatment by the summer! I don’t know what will happen after that but Tamoxifen has been mentioned. Hope your chemo goes ok. 

I think it sounds like your doing really well. Id ask docs about meds to stop the nausea. One lady on here said they teally work with her. One day you will get back to normal maybe think about that when you get down. You can have hope for the future. How disabled is your son? Im disabled too. Best of luck x

Hi Sara, I've not got occult breast cancer but invasive ductal cancer of the left breast! The similar thing is that I didn' have a lump in the breast initially, I first found a lump in my armpit which was painful and having been told it was nothing to worry about by the gp I left it for a few months and then noticed a small lump in my breast which then turned out to be cancer and in turn they said there was lymph node involvement in my armpit! So in a way similar in that the lymph nodes were doing their job to catch the sneaky disease! I was diagnosed on 24th November and 11th December I had left mastectomy for the lump which was 23mm and removal of all lymph nodes 10 out of 30 were positive! I'm  now due to start chemotherapy on Tuesday next week which scares me the most as the surgery I found quite do -able! We are all in this together and I'm here if you need to talk along with all these other lovely ladies! Deb xx

Hi Deb09. I have occult breast cancer as  I’ve already mentioned on this thread but what worries me is the small number of lymph nodes that were taken out during the axillary clearance I had compared to the much larger number that others like yourself seem to have had taken out. I worry that some cancerous ones may have been left in. I got a very flippant answer from the oncologist when I questioned him why only 11 had been removed to which he replied that I was the only person he’d heard asking why so few when he’s usually asked why so many. That was his sole answer.

Hi, when I asked the surgeon told me that everyone has different amounts of lymph nodes from anything from 5 in some people to 42 in others! I had 10 affected and I had a total of 30! So in my case he removed all, did you ask how many you had in total as to how many he removed? My breast care nurse was well clued up on my operation too so maybe if your concerned I'd just give the breast care nurse a call but I'm sure if there was any chance of risk they would have removed all that were necessary, I'm a stress head though so I would be the same and id definately just to ease your mind ask them the question xx

I had 15, of which 1 was positive. What happens is, they remove the whole fat pad in a clearance which is then dissected in the lab to separate out the nodes. And yes, we all have a different amount.

xx