Paget's? Advice appreciated please.

Hello
Another worried newbie here & apologies in advance for the long post! A month ago I had a cyst aspirated from my right breast. Just before I saw the registrar at the breast clinic about this, the nipple of the same breast became very itchy and a dry/cracked patch suddenly appeared on the areola. The dry patch had come & gone by itself for a few months although the itching & cracked skin were new. The registrar had zero communication skills & left me worried sick that I have Paget’s although I have discovered today that she wrote to my GP saying it could be eczema (which is what I’ve been trying to reassure myself that it is all along).

After using high-strength hydrocortisone and anti-fungal creams for a few weeks the patch on the areola has cleared but I am still worried because the nipple looks like it has a kind of “shell” over most of it & seems mis-shapen. My husband also commented on how much more prominent the veins are on that breast.

I have a follow-up appointment next week when I will also get the results of the mammogram I had done just before the cyst was drained. I’m assuming that was clear as I hope I’d have heard if it wasn’t. I have already phoned the consultant’s secretary to ask that I do NOT see the same registrar but what I would like advice about please is: would you ask for biopsies to be done? The registrar mentioned a punch biopsy if the dry patch was still there but as it’s not, what would you do given the symptoms above?

Thanks in advance.
Margaret

Hi freckle48

Weclome to the Breast Cancer Care forums, I hope you will find them a great source of support and information.

Whilst you wait for the other forum users to reply with their help and advice you may find giving the BCC helpline a call and talking things through with a trained member of staff helpful. All the staff on the helpline are either breast care nurses or have experience of breast cancer and will be able to offer you support and information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 9 to 2pm.

I hope this is helpful.

Best wishes Sam, BCC Facilitator

Hi Margaret. Forgive me if what you are about to read alarms you, but I could not let your post go unanswered.

Two years ago my partner developed a patch of eczema on her nipple. As an ex-nurse and hospice chaplain and due to my family history, I’ve seen a lot of breast cancers. I immediately told her that I thought it was Paget’s disease. After about ten months of trying various creams prescribed by the GP she was referred to a consultant (this was over a year ago). As her mammogram and ultrasound were clear, he diagnosed eczema. Very politely, I said that it seemed a classic presentation of Paget’s, and shouldn’t a biopsy be done… I was brushed off with an imperious wave of the hand.

In three days time my partner will have a mammogram.

Please ask for a biopsy.

Hi there - for what it’s worth, I did have Paget’s but it wasn’t itchy. I also had 2 tumours but had noticed some changes in the nipple area just before I found the lump.

Good luck
P
x

Hi Margaret,

Sorry to hear that you are having such a worrying time.

I think that you are right to pursue as much investigation as you can from the team, becauswe that is the only way you will be reassurred. Hopefully, it will turn out to be nothing other than eczema.

I was diagnosed with IDC, DCIS and Pagets disease after initially presenting with 2 palpable lumps. It was when I had the mx that the pathology showed 2 invasive tumours, widespread DCIS and Pagets disease.
I had had no visible signs of any sore area, but I do remeber my breasts felt a bit itchy when I took my bra off.

Good luck XXXX

Hello ladies
Thank you all of you for your advice; you’ve made me realise it’s ok to ASK for something to be done, rather than just going along with what I’m told. I have decided I am going to make a list of my concerns before I see the consultant so I don’t forget anything. If he/she does not suggest biopsies I will produce the list & ask (politely of course:-)) for biopsies to be done. My sister has only just finished treatment for DCIS & invasive cancer which went undiagnosed for a while, so I’ll remind them of that too.

Thanks again
Margaret

Hello there Margaret,

Just wanted to add my voice to all the excellent advice you’ve been given here by the other ladies. (Hello to you all too!)

I was diagnosed with Paget’s disease a couple of months ago - I previously had DCIS nine or ten years ago and had lumpectomy and rads for it. This time, they’ve done a mastectomy, because I’d previously had the DCIS.

My biopsies came back clear after the mastectomy - no DCIS behind the nipple, and no need for ay further treatment. I was really surprised & pleased no DCIS , because in most cases, there is DCIS behind the nipple.

Paget’s is rare, but where there’s eczema on only one nipple,Paget’s should always be suspected and biopsy done to either diagnose or rule it out. This is because eczema usually starts on breast skin and ends up on the nipple/areola, whereas Paget’s starts there, and then can spread to the surrounding breast skin.

Hopefully when they give you the results of the mammogram, they should do a punch biopsy there and then, but if not, then yes - ask for it. Like you say, it’s a good idea to remind them about your sister’s recent breast cancer treatment.

Good luck Margaret, and we’re all thinking of you, so please post here as many times as you want. It’d be lovely to hear how you go on at clinic please.

You take care!
xx

Hello Shelley61
I’m really sorry to hear you’ve had to go through so much, and thank you for taking the time to share your experience. It’s made me all the more determined to ask for something more to be done if I have to. I’ll post back here after my appointment on Wednesday.
Thanks again.
Margaret

Hi Margaret

I would certainly ask for a biopsy

3 years ago I went to GP and was referred to breast outpatients clinic because of eczema on right areola. The consultant I saw seemed to think I’d be recalled after looking at mammo and U/S and her parting shot as I left was that whether I was recalled or not she’d like to see me in 3 months cos eczema on 1 areola/nipple can be a sign of Paget’s.

Anyway no recall and like you the eczema went after a couple of months of using cream, when I went back there was no eczema and she just basically looked and said don’t need to see you again.

Had I have known about asking for a punch biopsy then I would have asked for one because 3 years on I don’t have peace of mind but recurring eczema and various other symptoms all in the same breast! I have finally been referred to clinic again and am awaiting mammo results.

PLEASE get this sorted NOW otherwise you may get left in limbo like me and it isn’t a very comfortable place (trust me I know!) - you need to feel all has been done to prove/disprove your diagnosis and not be left wondering.

Good Luck

Sandra

Hello Sandra
Thank you for taking the time to share your experience which does sound very much like mine. It’s terrible that you still have no answers - 3 years is a very long time to live with such uncertainty so I wish you luck in finally getting somewhere & I hope you get good news.

Hearing stories such as yours makes me more determined to ask for a biopsy next week but I’m not quite sure what I’ll do if they refuse, which of course they might if the nipple/areola looks reasonably ok that day (it seems to change from day to day).
Regards
Margaret

Having just re-read my post, above, I must apologise. On Monday my partner is having a mastectomy - not another mammogram! Stress-induced typo; really sorry.

Even her recent mammogram and ultrasound are showing NAD, so please, please, insist on a biopsy.

Apologies if my earlier post was confusing.

Hi Margaret
Hope you’re doing well.
I was dx with ezcema/Pagets, had mammogram and ultrasound which both showed nothing underlying. Had MRI, same result, nothing. Had a biopsy under a general anathetic then waited 3 weeks for results…Grade 3 cancer. Following week had surgery to cut out the nipple area and sentinel lymph node biopsy. They found large areas of tumour and 12 bad lymnph nodes…still don’t understand why nothing showed in the scans and it really does feel that my questions are not answered directly or clearly.
Have a biopsy, you need to know exactly what’s going on. I knew from the start mine was not eczema as it fitted the descriptions of Pagets so perfectly and I’ve never had eczema in my life so why would it would crop up on a nipple! Mine never itched or cracked but it looked like a scab and the nipple became inverted; yours does sound far more like eczema and I really hope it is but check it out…all this is hideous of course, not a place we wanted to be, but I wish you well and will keep my fingers crossed
xxxxx

Sassie
Sorry your partner’s really going through it at the moment, she must be frustrated that it’s taken so long to get to this stage, and devastated at having to have such drastic surgery which might have been avoided had things been taken more seriously earlier.
Best wishes to her for Monday.
Margaret

Suzyb
Thanks for your advice & I’m sorry that you’ve found yourself in your current situation & not getting satisfactory answers to questions. It must be incredibly frustrating & the 3 week wait for results must have been agony.
I do suffer from contact dermatitis which is similar to eczema but I know a lot about the latter as my son suffers from it, & I don’t think it’s eczema on my nipple. That said, I’m not an expert on paget’s either so I’m going to request a biopsy as I just need to know.
Best regards
Margaret

Well, my partner’s mastectomy happened yesterday and she can come home this morning. She was totally laid back prior to surgery and came back from recovery talking at a hundred miles per hour! Once the morphine drip had worn off she was still completely pain-free.

One thing no-one seems able to tell us is whether or not the sentinel node was biopsied while she was still in theatre, or if we will have to wait until her December 8th follow-up when we expect the full histology. Does anyone know how this generally works please? It would seem illogical to me for them NOT to do it at the time, because it could mean further surgery to remove more nodes once the results are in.

Anyway, I particularly wanted to post this to reassure people about to undergo a mastectomy (which is why this also appears elsethread; apologies if that breaks any rules!).

Sass xx

Hello Sassie
I’m glad your partner’s mastectomy seems to have gone well & hope she’s still doing okay.
Regards
Margaret

Hello ladies
I promised I’d log back in today to update you on my consultant’s appointment which was this afternoon.

Ironically over the last couple of days all the problems I’d been having started to clear up by themselves. I wished I’d taken some photos (which would have felt weird but at least it would have been proof) because the whole nipple area looked pretty normal today, and given the improvement I just didn’t feel I could insist on biopsies. The consultant was positive that I do not have paget’s based on what she saw but said that given my family history I mustn’t hesitate to see her again if the problems recurred.

Full marks to my GP, too - I had told her last week about the registrar’s lack of communication skills which had left me anxious about paget’s in the first place & she had contacted the consultant. The consultant & I discussed it in detail & she will talk to the registrar to hopefully prevent anyone else going through something similar.

So thank you for your support & good luck to you all.
Best wishes
Margaret.