Pleomorphic-lobular-carcinoma-in-situ

Diagnosed with breast cancer Recently diagnosed with breast cancer
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I hope this finds you as well as you can be today :blush:

I am new to this site/app, so hi :wave:t2:

I was recalled from a routine mammogram. I followed with another mammogram, ultrasound and biopsy. My return visit they said I had 10mm of DCIS -intermediate, and which would require a wire-led wide excision, or in other terms - a wire-guided lumpectomy. My op would be a few weeks later, because I also have rheumatoid arthritis. My RA journey started around 9 years ago and it’s only this last year that we’ve found 3 meds (including 2 different injections) to keep it at bay.

I had to stop all my Rheumatoid Arthritis meds to have my operation. I am 3 weeks on from that now and recovering really well. I’m back to driving, long walks and getting my 60 basketball shots in each day. My wound has dissolvable stitches and glue. That’s all still in place. I am returning to work (primary school) Monday.

I had my call from my surgeon regarding my surgery outcome. It is now a different diagnosis. It is PLCIS (Pleomorphic lobular carcinoma in suti) which is treated in a similar way to a higher grade DCIS. They thought they were existing 10mm, but it turned out to be 35mm - that was a shock too! I understand that LCIS is it’s oppo.

I wish it wasn’t rare, and I wish it was all over. I have to see oncology next to arrange radiation. I have a rheumatology appointment booked for next week - booked in preparation to restart my RA meds; I’m a positive thinker :wink:Unfortunately, I’m thinking that I might have to hold off until after my radiation. Has anyone experienced radiation while on RA meds? My normal concoction is: Tocilizumab, Methotrexate and Sulfasalazine.

My bloods have recovered well after coming off my RA meds - wbc normal, Neutrophils normal and ALT the best it’s ever been for a long time at 24! I’m thinking that to recover well from radiation I might need to keep my bloods at a decent level. My joints are beginning to rebel a little, but not ridiculously yet.

Also, it’s my left breast. I hear radiation on that side isn’t the best. Do you have experience of that?

Any thoughts would be very much appreciated. I do understand that having RA and PLCIS is not a common combination, of course.

I was told that I don’t need hormonal treatment, but I’m not convinced about that, having read that this could be bilateral and I have more of a risk of things returning surreptitiously. As I have RA, my joints are already either/and sore/damaged. I could do without any more pain! I am postmenopausal (aged 61) and like to be forward thinking.

Thanks for taking time to read my lengthy post. :grin:

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Hi there, I have recently been diagnosed with high grade DCIS and Pleomorphic LCIS and classic LCIS. The surgeons were not terribly interested in the LCIS actually just in the DCIS which is a large area so mastectomy for me next week.

I also have Undifferentiated Connective Tissue Disease and Sjogrens with inflammatory arthritis, and ME/CFS so lots of autoimmune stuff going on.

I understood that if I was a candidate for lumpectomy then yes I would probably need radio too but with mastectomy I shouldn’t need it so your treatment plan sounds about right. Friends who have radio after lumpectomy haven’t found it too bad if that’s reassuring.

I am also worried about the other breast with LCIS but actually plan on asking for a second mastectomy on the ‘good’ breast at some point (well… if the first one goes well) as I would prefer symmetry and will worry otherwise.

I don’t really like the sound of hormone treatment either… but I think there are some predictive programmes that can look at your individual risk to see what difference they would make which might be helpful.

Anyway solidarity from someone on a similar path but great news that you have recovered so well.

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Hi,
Im sorry to hear that you are going through something similar. Good luck with your journey too. Have you had to stop any autoimmune meds before your operation too?

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Hi ,

I wonder how did you manage in long term, did you do chemotherapy?

Oncotype 31,same diagnosis, also RA since I was 35,now 46.

Off medication for 3 months before surgery.

Very low carb helps, no sugar,lots of supplements but the scary part is the cancer treatment.

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Hi,

I hope this finds you as well as you can be today :heart_exclamation:

I didn’t have chemo, nor have I had to take any other tablets etc. I had surgery, radiotherapy and that was it - thankfully.

It took a while for my ra meds to kick back in, after treatment, but they did - eventually. I have methotrexate (metoject) and a Tocilizumab injection - both weekly. They keep my ra at bay, mostly successfully, but I do flare every now and again.

I’m due for for 2nd yearly scan, since being diagnosed. Keeping everything :crossed_fingers:t2:

I hope your journey isn’t too bumpy :smiling_face_with_three_hearts:

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Thank you for your reply.

I have clear margins, lymph nodes ok,but being Pleomorphic Lobular Carcinoma chemotherapy was recommended.

I stopped Cimzia in February. Eating low carb and no sugar or sugary fruits helps rheumatoid arthritis, at least for now.

I wanted to know if chemotherapy was recommended for yourself as well and you decided to say no?! Because this is rare and aggressive apparently.

I paid privately for a test called Signatera, waiting for the results.

Thank you, again.

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Sorry to jump on this post…are you in the UK? Where did you have Signatera done, please? I’m finding it really tricky to locate somewhere to do it privately!

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Hi,

Sorry about the late reply, I don’t really go on this forum often.

I have researched myself and I found the manager for Europe’s email address and she gave me the details for Ireland, I live in Dublin. The cost was 3600 euros.

I can give you her email address if you would like and she will link you in with the hospitals that do it in UK

Mine is pleomorphic lobular carcinoma

apalazzotto@natera.com