Help, please

[Barbara17]

Hello, lupie friends. I haven’t been on the site much over the summer as I’m sorry to say I was diagnosed with breast cancer in August. However the good news is that the tumour was very small, 8mm, and has now been removed by a lumpectomy. Today I got the good news that all the cancer has been removed however the surgeon has given me Tamoxifen tablets and made an appointment for me to see the oncologist next week to start a short course of radiotherapy. He doesn’t ‘think’ the tablets will trigger my SCLE however I’m sceptical with my history of drug induced flares. It was terbinafine that started all my problems. I’m hoping there is someone here who has been through this and can offer me advice? I’ve left a message with my dermie today to see what she has to say about it all as we all know the different specialties do not talk to each other. But first hand experience from another SCLE sufferer would be very helpful. Thanks, everyone.

[weathervane]

Hi Barbara, sorry to hear you are go through this , glad to hear that things were picked up quickly.

Last year I had a lumpectomy and a 5day course of intense radiotherapy and im taking Anastrozole for 5 years . It was a journey, i had to stop rituximab for a year because of it which meant i did flare , swollen joints and lymph nodes, and awful fatigue. Im getting back on course again .

I don’t think the Anastrozole caused any of the problems, i think it was having to come off treatment , the oncologists are very good, your drugs can be changed if necessary to fine an alternative that suits.

Im also on the breast cancer site on healthunlocked which is another form of support.

I hope all goes well for you and the treatment suits you ok , take care and stay safe xx

[Barbara17 in reply to weathervane]

Thanks for your help and sharing your story. It’s all a bit of a minefield, isn’t it?

[weathervane in reply to Barbara17]

I think it’s important to discuss your options with your rheumy and oncology and trust them to work out the best plan for you individually. I agree though, it is a minefield and you do have to weigh up what you can put up with xx

[Spotty-ewe]

Hi Barbara, I’m SO sorry to hear your bad news, but thank goodness it was a small tumour and that it has been successfully removed by a lumpectomy. I’m afraid I can’t offer first hand experience to help you but my sister who was in her mid-sixties when she went through the same as you, when she was living in Edinburgh, never looked back. Now in her early 80s she lives in Melbourne and still kayaks, cycles and walks and puts me to shame. Although she doesn’t have SLE she is still an inspiration and can give us all hope. I pray your treatment goes well and that you don’t encounter a drug reaction.🙏🏻 I also had a terrible e action to Terbinafine as you know so I can fully understand your anxiety. Hoping the dermie reassures you and that you get through all this without any adverse reactions.🙏🏻 Keep us posted with your progress Barbara. Thinking of you. Big hugs. 💕🤗🙏🏻😘🤞🍀xx

[Barbara17]

Thanks for your kind words, Spotty. Edinburgh has a wonderful cancer centre and everyone was so positive I didn’t feel worried. But they are not lupus specialists and I do need reassurance before I take any new tablets. I hope everything is well with you. 😘

[Spotty-ewe in reply to Barbara17]

Yes, I know what you mean. Lupus makes everything different. Have you tried your rheumatology dept for reassurance? Or perhaps your pharmacist? They are supposed to know about our conditions and drug reactions so might be able to reassure. I hope you get the help you need soon. 🙏🏻

Apart from the usual ups and downs with SLE I’m not bad thanks Barbara but have had a problem with my lower back for a few months now. I’ve just completed a course of physio which hasn’t helped so will be seeing the physio again next Thursday. So frustrating when it stops normal activity. 😫But I mustn’t complain there are always folk much worse off. Take care Barbara and let us know how you get on. 🤗😘🙏🏻xx

[Barbara17 in reply to Spotty-ewe]

I hope today’s physio visit has made a difference. Although it will probably feel worse before it’s better!

I’m a wee bit further on. A nurse I know has spoken to a rheumatologist and she says it’s unlikely to cause a flare. So that’s reassuring. I’ll let you know how things go and hope you feel better soon 😘

[Spotty-ewe in reply to Barbara17]

So pleased to hear a nurse has been able to reassure you Barbara after speaking to a Rheumy. Yes, please do let me know how you get on.

Thank you for remembering my appt today and thinking of me. She didn’t do anything with me today except watch me do the exercises she’d given me to make sure I’d been doing them properly. She said my technique was good but told me to stop them as they are clearly doing no good. She has referred me to the physio dept at the hospital but warned me there is a 7 month waiting list. 😳

I’ve decided to try a new therapy called KORE therapy which is a blend of Western and Eastern assessment and treatment techniques which a friend at Bannatynes recommended. I’ll give it a go and see if it helps. I contacted the therapist this afternoon to see if she can offer me an appt next week. Fingers crossed.🤞

Good luck with the Tamoxifen and let me know how it goes. I’ll be thinking of you. 🤗😘🙏🏻🤞🍀xx