Hi Peeps 👋🏻 I hope this finds you as well as you can be today 😊
Well, I have had a bit of a journey recently.
As I posted a couple of months back - I can't believe it was that long ago - I had to stop all my meds to have a wire-guided lumpectomy for intermediate DCIS (ductal carcinoma in situ). 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.
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 😉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 at 24 - the best it's ever been for a long time! 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?
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Moomin8
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I don’t know any of the answers as no experience of your questions but just wanted to write how positive you sound under such circumstances. My husband had Cancer two years ago and is in remission. I hope someone can help you and best wishes for your continued recovery. X
I went through what you are now going through now back in 2003….so a bit out of date! I can,t remember what RA drug I was on….but I know I didn’t have to stop it ….it was a Dmard as I don’t think Biologics were available back then.
Two things I would say ….is take things easy & keep up your exercises if they still offer them, during Radiotherapy……I had RT for 6 weeks & I do remember how exhausted I felt in the last couple of weeks. I’d have the RT in the morning & sleep for a couple of hours as soon as I got home…but I did drive myself there & back for the whole time. I took both Arrimadex & ?Tamoxifen post RT…but I expect there are more modern drugs avaiable now.
Mine was left breast too….& I have never heard that there is any difference from right breast in reaction to RT….& here I am 21 yrs later perfectly cancer free….& I’m sure treatments have moved on tremendously in that time. I had annual Mammograms for 10yrs…..but again that may not be the case these days. .
Thank you for your thoughtful reply, AgedCrone 🫠I'm sorry you had to go through a similar situation. If you don't mind me asking - what was your diagnosis? Did you have surgery at that time? If so, didnyou stop your meds?I'm worried that I might have to take a hormone blocker, or similar; our RA gives us enough of a shake-up as it is!
Yes I had surgery as the pre-surgery biopsy confirmed the malignancy …but a lot of people agree with me, that the initial pain from RA is worse than anything one usually feels with breast cancer.
I think if a malignancy is diagnosed you will have to take some sort prophylactic drug….As I said I took Arimadex which didn’t suit me then Tamoxifen as I had an oestrogen receptor tumour.
I didn’t stop my RA drugs…in fact..I know this sounds odd in 2024, but I don’t remember if my theumy even knew I had breast cancer. I was 7 years in to RA…& the RA pain seemed to ease during the RT…& I don’t recall going to see my rheumy during that time. ..but it was a long time ago.
These days I think treatment must be much more effective & different from 2003!
Do ask your oncologist to liase with your rheumatologist to decide best way to treat and re your drugs . I was a year off rituximab after a lumpectomy and radiotherapy. I did get a steroid shot to try and help. I am now on Anastrozole for 5 years.
I also had the radiotherapy on left side , they do have to protect the heart , staff were brilliant.
Best wishes for everything you are going through, look after yourself and conserve your energy, radiotherapy can make you very tired 🤗🤗
That must be relatively new about the heart…..do the medics actually tell you about it? Nobody ever mentioned that in 2003! The only question I asked was did the positioning Tattoos last forever,& I am here to tell you…YES…they do! To this day - the little black dot in the middle is launched at by well meaning friends…saying “you’ve got a black smut there…”
I had radiotherapy 2021 , things might have changed , it was the nurse in radiotherapy that explained it to me . It wasnt a major issue to me at the time.
Does your tattoo ever get a bit itchy ? Mine does occasionally for some reason, never appears red or irritated though .
You have to hold your breath!!! It sounds simple but hopefully it worked. I was given a more intense radiotherapy over 5 days , I think this might have started during COVID so you had fewer sessions. I was tired by the time i got home, though I had skipped rituximab and I was suffering more with fatigue anyway.
I have been told that it will be over 5 days. I've also been told that I should be able to drive there and back each day - a minimum of a 50 mile round trip, depending on which hospital I get sent to. It has been suggested that it might be 1-3 weeks before the dog-tiredness kicks in. Do you remember being tired some weeks after?
So, you didn't have your RA meds during your radiotherapy?
I have Sjögren’s with secondary RA fatigue is a problem anyway. The rituximab is 6 monthly infusions, I ended up missing 2 rounds so took a wee while to get back on track again.
Everyone’s different so hard to know until you are going through it . Look after yourself and take care.
I think they must use stronger RT now…I had 30 days…It seemed a complete waste of a 30 minute each way drive as I was only zapped 45 seconds each side. But I had to wait a couple of months to start….they wouldn’t start until all the stitches were out & the scar was well healed.
As I remember I only felt the extreme tiredness in the last couple of weeks…& I think a lot of that was because I didn’t rest much…I just carried on doing what I normally did.
Oh OK. That was a very long process! My dissolvable stitches are still very much there plus the glue on top! My cut is on the side of my breast, but the place in question is more on the front. I'm probably the same - I'll just carry on as normal.
A close friend was diagnosed within weeks with the same type of tumour that I had .So looking back I think neither of us was going to be accused of giving in & indeed we both flew off on holiday within a a couple of weeks of finishing the RT. Thank goodness both of us have had no recurrence.
Thank you for your reply, weathervane. It sounds like you had a similar road? How are you finding Anastrozole?
I am returning to work Monday; I'm well enough - 3 weeks post-op. I am not being pressured into anything. I'm really lucky because my primary school is great. I intend to go on our Yr6 week-long trip in a few weeks; I look forward to that every year 😁 I have asked that my oncology appointment is not that week. My daughter is coming over from America on the second week of July, so I want to circumnavigate that too. We've got to live, right? I hope I can get things sorted around those plans 🤞I've got a feeling that my recovery will in in the summer break. Luckily we hadn't booked a holiday yet!
Anastrozole hasn’t been too bad , it has definitely cut my heating costs as I get rushes of heat , I never had hot flashes so not sure if similar, I get warm all over. I did get increased muscle pain after a year , oncology didn’t think it was Anastrozole, rheumatology think it was 🤷♀️.
Good luck with your treatment, I hope it goes well for you.😊
WOW you have been through the mill. Here's hoping you are on the right side of it all. I have info regarding cancer so i can't answer your questions, I am sending you a big hug though instead. xxxx
All the very best to you Moomin. You’ve a lot to cope with but shout if you need support - no shortage of that on here and everyone will be rooting for you for a good recovery. Take it easy!
No experience personally of cancer, just wanted to send you my best wishes, and I hope that you come through this and regain good health take care 💐 xx
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