Not been on here for a while. Was diagnosed with breast cancer last November, so because of family history, I've had a mastectomy.
I'm now due to have chemotherapy to start next week.
Has anyone else had breast cancer/chemotherapy and ongoing. If so, how have you dealt with the treatments, Lupus and also importantly, the limited contact and medical services due to covid.
Comments and advice appreciated.
I am so sorry that you are having to go through all this. I can only offer you a little reassurance. A friend of ours has Lymphoma and was mid way through chemotherapy when they contracted Covid. The response of the hospital was amazing. Antivirals were couriered over that day and they have made a complete recovery, as in a few days with only cold like symptoms. I think the main take away is that when we are really up against it the NHS can be fantastic and in this case came up trumps. I hope this gives you a greater sense of peace. Wishing you all the very best.xx
Thanks for your reply. At the moment, I have a lot going on. I also had eye surgery last week, following up from a retina detachment. I've been in hospital before Christmas and I didn't have much confidence in the treatment I received, that isn't taking anything away from the NHS, I think it's the way this hospital and staff do things.
I won't be getting any help at home particularly during the day if I feel unwell, so I just feel I need more information on why I'm getting this chemotherapy (cancer was fully removed) and can it be postponed, just until I get some good sight back.
Anxiety and stress isn't a good thing to be feeling with Lupus so I just need a break from operations and treatments that aren't necessarily urgent at this time.
Hi awareness 75 sorry I can’t offer any advice but just wanted to say I’m so sorry you’ve have been through all this on top of having Lupus it’s no easy task - Wishing you all the very best for your chemo xx
I am so sorry that you have been through such a rough time. I have no advice but just wanted to wish you the very best of luck xxx
Hi , i have Sjögren’s and i had a lumpectomy in June followed by radiotherapy. It was all a bit of a surprise as there was no obvious lump , it was picked up on a ct angiogram for another issue. The radiotherapy was a bit exhausted but it was in a specialised unit so I didn’t have to go to main hospital and everything felt very safe . I have had some pain with the scar and have developed a Seroma which isn’t a major issue. My treatment for Sjögren’s has been delayed for a year because of all of this , i just started again on Wednesday , so immune system will be compromised , i try to be very careful and my 3 sons and husband have been great and are very careful as well .
The specialist nurses are amazing and are there to give advice, and check ups if necessary. Macmillan are also there to give advice and support .
I haven’t had the chemo therapy so I can’t give advice on that , do reach out to the specialist staff to speak to them about your worries and to find out what support could be available for you .
My thoughts are with you going though all of this 🙏🏼🙏🏼🙏🏼🙏🏼.
Ps also check out Mybreast cancer community
I have radiotherapy and hormone to come down the line. Just wish it wasn't chemo. They gave my sister quite a few rounds of it, but it didn't improve her health. It just deteriorated her, when she died 20 months ago.I have a chemo chat lined up next week. I understand there are different types of treatment. I just wasn't given any options or a discussion at that time, so I'm hoping to do so on next visit.
You should definitely have a good chat with your oncologist to see why it was recommended and what the regimen will be , it’s important to have that all clear in your mind , they are experts and you need to be able to trust them and be happy with what is recommended. It is a massive thing to get your head around . Im so sorry about your sister , that must have been very difficult for you.
Please take care and stay safe xx🙏🏼🙏🏼🙏🏼
Thank you. Yes I need to get it all very clear and have confidence in them. At the moment I don't.
Hello dear,I can't offer any advice, but my thoughts and prayers are with you. Xx
Slightly different- my Dad has non Hodgkin lymphoma or blood cancer, he’s 85 and caught covid in hospital while being treated for pneumonia. However his treatment of oral chemotherapy (heart issues prevent the other method) is working and he’s looking and feeling better and is fully recovered from covid and pneumonia.Wishing you all the best 😀
Me too, but luckily back in 2019, before Covid problems. I had a lumpectomy and radiology but be warned, despite asking rheumatology team about likely problems, discovered that “autoimmune patients do tend to react to radiotherapy”. Check with your team about chemotherapy but I’m sure you will cope - things move on so quickly and they will have you better covered, in hindsight I think I totally forgot about drug induced lupus and the anaesthesia caused a bit of a flare. Good luck x
Of course anyone diagnosed with cancer during the pandemic would be worried. Rest assured you will considered the highest priority. Other less urgent medical conditions get put on hold first. I live in the US and had six weeks of chemo/radiation almost a year ago. The protocols just to enter a unit treating cancer patients are very strict.
My oncologist did say I was in fortunate to be entering treatment after the vaccine became available. You may need a fourth vaccine but that would be up to your oncologist.
I, like you, had lots of questions about having autoimmune disease and cancer treatment. The doctors all assured me they had successfully treated much sicker autoimmune patients than me. You will watched very closely by all concerned with your care.
The big dose of IV steroids they gave me with chemo really helped with side effects. I think it is pretty standard.
Please message me with any questions. I know you are going to be well cared for.
Best of luck.
Xx k
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