inflammatory breast disease possibly unknown primary?

[FHgirl]

Apologies for the confusing title.

Hello to you all.

I was diagnosed with MBC in October 2021 - unknown primary.mets in neck lymph nodes which then spread to bones and lungs. I'm on my 4th line of chemo - trodelvy. I will have a ct scan in a couple of weeks after I return from holiday.

a few weeks ago I noticed a rash and thickened skin on my right breast and GP gave me some cream which stopped the itch. I mentioned the rash to my oncologist who referred me to the breast surgeon. He did a punch biopsy and I will get results of this when I see my oncologist.he mentioned as he did the biopsy,there was a lot of fluid.

For some reason, I thought the rash was somehow the primary manifesting itself now. So even though I have stopped googling for all the secondary cancer stuff, I googled when i got home and managed to really upset myself. I think this is inflammatory breast disease and I'm struggling with why after 4 lots of different chemos this is now showing itself? If this is indeed what it is. However I think the rash came between 3rd and 4th chemo regimes so maybe it was responding to the others?

also I don't think they will operate and give me a mastectomy because of the mets - can I insist on one - I'm in the UK?

I know I'm probably getting ahead of myself but does anyone have experience where your primary was unknown until well into to your treatment regime. Or a diagnosis of inflammatory breast disease with secondary cancer.

Thank you.X

[USIrishcolleen]

FHgirl,

I think that you should calm your mind, the best that you are able. Googling things/self diagnosing, can really raise the anxiety level. I know it is easier said than done, but please try not to worry.

Take care,

Colleen

[FHgirl in reply to USIrishcolleen]

Thanks ColleenI'm calmer than I was before but I'm just curious to understand how 'common' it is for unknown primaries to eventually show themselves. My oncologist was never concerned that we didn't know the source of the primary.

Since the recent biopsy I haven't done any more googling and shall wait for the results.

Thank you.

[8576]

I have had a similar experience. I had a tumour in my left hip which turned out to be breast cancer of my left side. They said there was no use doing surgery until it became a problem some ten years later. Then the tumour broke through the skin and caused a fungating sore which would not heal. I had the entire breast removed as well as lymph nodes under the arm. The surgeon was excellent and was pretty sure she had got it all. While it has spread to my lungs it has never returned to the primary site. Hope this helps.

Cheers, June S.

[FHgirl in reply to 8576]

Hi June.I must admit I had read previously about fungating sores and thought this is what the rash might be.

I hope the spread to your lungs is stable and its good the cancer hasnt returned to the primary site.

I do trust my oncologist but as we all know waiting for scan/test results is hard.

Thanks for your input.

Salma

[8576]

Good advice from Colleen. Relax. You are in good hands and if you have doubts don't ever hesitate to get a second opinion. Best places to get info is from John Hopkins or Mayo clinic and your National Cancer centre. If it is happening they know about it.

Cheers, June S.

[Jobyash]

Hi, I’m very sorry to hear of your situation and I can understand your worry but best to wait for the results and work a way forward then. I have secondaries in my bones but I realised after the diagnosis three years ago that I had possibly had a second primary tumour in my other breast. This proved to be the case. They waited for my bone mets to stabilise on the treatment I was on and did carry out a mastectomy after I think it was 12 months (that was 18 months ago). I am sharing this because I don’t want you to think that they automatically don’t take this course of action because we have secondaries. I think they work on the best course of action in each case and never give up finding the best treatment. I hope this helps and I wish you all the very best. Xx

[Jobyash in reply to Jobyash]

PS I am in the UK too

[FHgirl in reply to Jobyash]

Hi Jobyash

That's good to know thank you.

My breast has got very itchy and angry now but it will be a couple of weeks before I see the oncologist for results. In the meantime I will be having a ct scan to see if my current treatment is working.

I hope your bone mets are still stable.

X

[Jobyash in reply to FHgirl]

Hi, my bones are currently stable, thank you for asking. I’m wishing you well for your journey and keeping my fingers crossed for your scan results. Take care Jo xx