I am 64 and have had PMR for about six years. I went for a routine mammogram at the beginning of the year and a tumour was found, I am having it removed in a weeks time.
I have been back in the UK for two years after living in Africa most of my life so I don’t have much experience of the NHS but the treatment I have had so far has been fantastic and the staff wonderful and caring.
My question is really about how the cancer treatments could possibly affect PMR, I have been on 5mg of Prednisolone for the last two years and my PMR was very well controlled so much so that I was beginning to wonder if I still had it. I very quickly found out it was still there after worrying about the cancer! I have had a couple of flares recently.
Prior to the diagnosis I can honestly say that I was feeling healthier and fitter than I have for years - famous last words : )
Does anyone have any experience of coping with chemo, radiography and PMR?
Are my cancer team likely to consult a rheumatologist or should I ask them to?
I realise that we are all different but any insights would be most welcome.
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Loco99
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Sorry to hear about the tumour but glad things are being dealt with promptly. Mrsnails will no doubt be along in a bit to help advise you as she has had breast cancer and pmr like yourself and is a font of good advice. Good luck and keep us up to date please.YBB
Hi Loco
Sending you much love & hugs, I will reply to you very shortly, l have lots of info & advice.
I too am dealing with PMR (3 year) and now with breast cancer. It’s hard to distinguish between the chemo and what is PMR or chemo symptoms. My oncologist has ordered a Rheumatologist because through all of this I too have had flares. I try to keep all of my doctors in the loop of what’s going on eye doctor, dentist, pcp also. I’m at 3 1/2 mg at the moment they all tell me that amount is ok. Yes I too want to be totally off prednisone, but totally isn’t possible at the moment. From your message, it looks like they have some radiation treatments for you. Your oncology team is there working behind the scenes for the best plan for you. My best wishes to you through this. 💕. Maryanne
If you can bear to, I'd like to see at least some of your discussion as a thread in public. Lots of people are too embarrassed to ask or say things but would benefit greatly from your experiences. I do wish we could have a section for special interests like I had on an another forum.
Certainly Pro, it was just it was a personal topic on the type of Surgery & my advice on Bras & you know how much trouble that has gotten us to in the past 😉
Basically, My Tip was to purchase a Bra before Surgery, No Underwires & make sure it’s soft/comfy, those little bra extenders are very useful to ease the pressure.
I bought some Post Surgery Bras online from M&S exactly like the T-Shirt Bras l was wearing. Buying OnLine at M&S they automatically deduct the VAT but if you buy In Store you have to fill in a little form & it can be upsetting if you’re not prepared.
The little ‘Step In Bras’ ie no fastening are quite comfortable at night, not the gym type they are much to firm. Also a small pillow for under your arm, some Hospitals give you a little heart shaped cushion.
And, a little shoulder bag, to carry your drain in, on discharge from hospital, mine was a macrame one l happened to have anyway.
If anyone has any questions, please ask - if you don’t want to use the Forum, PM me & then l can do an anonymous comment as a Hint/Tip
I developed breast cancer in 2015 & was on 7.5mg Prednisolone & Methotrexate. I found the lump myself in June after having a clear Routine Mammogram in April!......
I had a Stage3/Grade3 TNBC Aggressive Multifocal Cancer, there were multiple DCIS’s found on a repeat Mammogram so the so option for a Lumpectomy & Radiotherapy was now unsuitable, so a decision was taken to perform a Mastectomy.
TNBC - Triple Negative Breast Cancer
DCIS - Ductal Cancer In Situ
Following the Surgery & looking at your Pathology Results your Consultant will discuss with you the way forward, they have a Tool called Predict where all your information is entered, age, type of tumour, stage & grade then recommendations are made from there.
As l was Triple Negative (TNBC) sadly the most aggressive form, the way forward for me was Chemotherapy but Radiotherapy was not required as it had not (at that point) spread to my Lymph Nodes.
So, My Recommendations, please inform your Rheumatology Team as soon as possible, they need to be aware. I was given Hydrocortisone Cover in Theatre, 100mg during Surgery & 100mg during the night.
The Registrar rang Rheumatology the following morning for advice & my Consultant upped my Prednisolone to 10mg for two weeks, l was at that point on 7.5mg.
The stay in hospital is much shorter than it used to be, 24hours in total! I had a Nerve Block so was in No Pain at all. I had to stop my Methotrexate before Surgery & my Consultant was not prepared to do a Reconstruction at that point due to the risk of rejection because of the Steroids, she did research & took advice before explaining to me her reasons.
I started FEC/T Chemo, now the additional joy here is they put you on Dexamethasone (incase you react to the Chemo) but boy was l a bundle of energy, l drove everyone mad with my hyper, hyper bright n bouncy mood 😂 it’s only for about 3/6 days at each cycle so don’t be concerned, l was perfectly happy 😊
The only adjuvant therapy l had post Chemo was Zolendronic Acid (a bisphosphonate) 6 in total over three years ie every six months, I can explain that further if you wish or for anyone else who’s interested as five years ago it was a New Protocol.
The Good News Re Chemo & Autoimmune Diseases
There is a very strong chance that Chemo can in some circumstances wipe out A.D. including PMR & l myself had a very good break from it for approximately a year though l was still on 5mg Prednisolone. After about 12months l could feel it all starting up again & l returned to taking Methotrexate to a good result.
There are many aspects to Breast Cancer & Treatment but the first thing is
NO Dr Google
Stick to MacMillan & Breast Cancer Care
Do not look into every different type of BC you could be sitting in a room of 20 Women & everyone of them could have a different type of BC & your follow treatment is decided accordingly, there’s ‘No One Size Fits All’
I’ve told you a bit about my story, in a more general way but would be happy to help you at any point along the way. I have lots of Tips on Chemo & l am also pretty much the Resident Wig Lady on here.
I’ll look later for a Post l wrote a good while ago & send you the link. Please don’t worry about the future, from now on in your on the BC Express, appointments & hospital visits come thick n fast.....
There are several ladies on here who’ve had BC before PMR & some since being diagnosed, so there is plenty of support, you can also join Breast Cancer Haven here on HU
You will also learn a lot of New Words & three letter acronyms, there’s nothing more the NHS loves than an acronym! If l can find it, l’ll send you a list & before you know it they’ll be rolling off your tongue!
Please do not hesitate to PM (Private Message) me, l can offer you sound practical advice as well as information that’s backed in Experience & Knowledge. I won’t sugar coat but neither will l exaggerate or frighten you.
Sending you Big Hugs 🤗 You can do this, you’re stronger that you think 🌷🌷🌷
Thank you very much for all the helpful info. I am usually a great googler but knew doing any type of a google search would be frightening. This type of group with real, kind people who have gone through the experience is so much better. After my operation on Monday I hope to know a lot more than I do now but they do like to keep you waiting and guessing, I suppose they are being thorough and I’m grateful to have such caring people looking after me. Thank you for the PM offer too xxxx
Mrs N you are amazing! Your courage, your articulacy, your common sense and desire to help others are an example to us all. You have set the bar high. Thank you 🌺 xx
After your a Surgery they will give you a Follow Up Appointment for about 10days that is Standard Protocol as it takes time for the Histology Report & then it is discussed at their MDT Meeting (Multi Discipline Team Meeting) before your are reviewed.
Top Tip 1. Remind Everyone you are on Steroids before Surgery
Top Tip 2. For going home, a small fabric type shoulder bag to carry your drain in, a Supermarket Carrier Bag is not a good look 🤭
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Sharp pain below right breast under ribs. PMR? Steroids? 
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