Radiotherapy and Connective tissue disease / lupus

1. Hi binkey74 I have scleroderma (systemic sclerosis, also a connective tissue disease) and have been wondering and worrying about radiotherapy too. I’m slightly different to you in that I’m waiting to have my operation after the recent diagnosis. They’ve said I can choose between mastectomy and therefore probably no radio needed (so far they don’t think my lymph nodes are affected), or lumpectomy followed by radio. I’m scared having read first hand sclero patient accounts of bad burns, but I had a chat with a specialist sclero nurse 2 days ago and she doesn’t seem to think I’ll be affected any worse than anyone else. Still worried though and thinking I’ll choose a mastectomy just so I don’t hopefully have to go through it. Do you mean that having radiotherapy minimises lymphadema and complications? X

I opted for a mastectomy for the same reason to avoid radiotherapy.

Having spoken to an oncologist this week he feels it is better to opt for surgery in my case. Not that it would exclude radiotherapy if it was essential. But I would have to stop taking hydroxychloroquine which manages my disease and it it likely that it would trigger a flare up and have scarring .

All of which I am keen to avoid!

The surgery I need to have now is an axillary lymph node clearance and carries a higher risk of lymphodema and complocations with mobility than radiotherapy, but only slightly higher.

I had a goldilocks mastectomy and a symmetry breast reduction and have just about recovered now 4 weeks later.

I am pleased with the outcome, apart from the blinkin lymph nodes of course!

Good luck with your surgery which ever option you go for.