Lupus

[Derek70]

Has anyone else dealt with EPI or breast cancer with lupus?

[LalSD]

MTCT: Mixed Connective Tissue Disease I think.

[SLS2103]

I had breast cancer in 2016, but the lupus diagnosis didn't come until 2022. Sorry I can't help - unless there's anything specific?

Sarah

[Minnie2000]

Hi Derek 70, I was diagnosed with breast cancer in 2021. I had an oestrogen positive ductal invasive breast cancer. I had 2 surgeries (as the first one didn't get everything) followed by radiotherapy and now receive hormone treatment. They were concerned about the radiotherapy due to my lupus but decided the advantages outweighed the risks. I did burn very quickly and had bad tissue break down at the time. Although I only had my sentinel lymph nodes removed I suffered from lymphoedema afterwards which I was at a higher risk of due to my lupus.

[michaellasmith Administrator]

Hi Derek70,

I have attached a link below to the John Hopkins Lupus Center that you may find useful:

hopkinslupus.org/lupus-info....

If you need advice or just a chat, you can contact our helpline on 01708 731251, which is open 9am until 5pm, Monday to Friday.

Warmest regards,

Michaella 😊

[Veronica23]

Hi Derek70,

I had BC in 2019- stages 2 invasive oestrogen positive. I had two surgeries plus a lymph node clearance, extended radiotherapy to the breast and collar bone. Afterwards, I had lymphoedema. My skin still feels itchy and sore on my back to this day.

I have adjuvant therapy injections for ten years. My lupus has remained active since radiotherapy. My joints ache terribly with swelling in the ankles in fingers and knee, hair loss and fatigue.. I have intermittent DEPO steroid injections which relieve the pain in the joints. I have tried Mycopholate Mycophenolic acid without success.

I was diagnosed in May 2023 with DCIS high grade in the left breast and have recently had a mastectomy, reconstruction and sentinal node biopsy.

[Veronica23 in reply to Veronica23]

I did forget to add, that whilst I was offered both chemo and radiotherapy treatment for stage 2 invasive breast cancer in 2019, I had to undergo several appointments and tests to see if I was fit and well enough (49 with sickle-Cell disease). I managed just one round of chemo before I had a major sickle cell chest crises with heart and kidney failure. I ended ventilated for two weeks in ICU. I must note that I've never had such a severe crisis in all my life. My lumpectomy X2 with nodel clearance was delayed for several months whilst I recovered to a level fit enough for surgery. Then followed two rounds (12 weeks) of radiotherapy in which my breast and back looked dark and burned. Lymphodemia followed for several months.

I remained cancer free for three years. This time around, I have had a mastectomy and am awaiting the pathology results to see if radiotherapy is necessary. Fingers crossed 🫣