Breast cancer..but not in the breast.

ditsydo 28 days ago

4 replies
392 subscribers
292 views

Hi I am new here. About 3to4 months ago I found myself on a new journey, not one I would have particularly chosen.

i went to my Dr with a lump under my arm, I was referred to the hospital very quickly and had a scan and biopsy, the result was I had CUP ( Cancer with Unknown Primary) which has been classed as breast cancer. I am taking one Letrozole a day, chemotherapy was ruled out as I also have it behind my sternum which makes it too close to the heart. They were waiting to see if the Letrozole would shrink the cancer. About three weeks ago I found another lump about three inches up from where my thigh joins the torso. As I had appointment booked with the Dr at the hospital I didn’t rush to let them know. I saw the hospital Dr last week, I am now back to having blood test, CT scan on Sunday week, also a biopsy. I have had many MRI and CT scans, plus Dexa scan,and now I feel I am back where I started going through exactly the same as previously. I have just got on with life, I walk at least 3miles a day, I have been away with my son for a few days, try to keep life as normal as possible, live in my own so doing all the normal things regarding looking after myself.
This second lump seems to have hit me like a ton of bricks…I won’t know if it is connected to the ‘breast cancer’ or whether it’s a new cancer until after biopsy, and see the Dr later in October. Has anyone else been diagnosed with CUP please, if so are you on Letrozole and if so is it working for you?

thanks for reading this.

Irishgirl16 27 days ago

Hi, I'm one of the champions here in this group and whilst I don't have the experience you are looking for, I wanted to acknowledge your post. I am sure it's very difficult not knowing, so I hope you get some answers and a way forward soon. Best wishes

Mazzamo 27 days ago

Have they told you subtype of the tumour in breast? Is it neuroendocrine?

Neuroendocrine seldom appears as a primary in the breast. It’s usually a secondary with an unknown primary elsewhere.

Just going through this myself. Lots of imaging trying to establish where the other tumour is.

keep us posted and stay strong. I’m 75 and my baseline health is poor. Not easy.

Take care

ditsydo 27 days ago in reply to Irishgirl16

Hello, Thank you Irishgirl very kind of you acknowledging my post…appreciated.

ditsydo 27 days ago in reply to Mazzamo

Hi, They have diagnosed it as adenocarcinoma. I was just very surprised that it is actually under my arm, then after scans they said it was also behind my sternum, but diagnosed as breast cancer.

A couple of weeks ago I found another lump just above the thigh joint, told the consultant last week, off for another CT scan Sunday week, had blood tests and apparently will have to have another biopsy, then back with consultant on 24th October. I did ask if it was connected to the adenocarcinoma, they won't know until scan and biopsy done.
It’s the waiting, and not knowing that gets to me.

I am sorry to hear you are going through this as well. Are they still looking for your primary?They are unable to find mine, apparently it can be so small that they may never find it!
Do keep in touch and let me know if they get any further with it.

Thank you for replying.

Just so you don’t think I am not going to reply to you, I only come on to the net in the evening, if I have been out all day sometimes I don’t get on..but I will always reply eventually.

More from this forum

Breast cancer..but not in the breast.