Pagets disease with high grade dcis

oh gosh i am so sorry to hear this, hugs from afar, and it must be so angering and frustrating . i do hope the surgery helps tho it is not what one wants. i had a lumpectomy and sometimes think taking the whole this gone would have been better, but i am finally not swollen. i also know women who had mastectomy and regretted it to begin with, and my aunt was just happy to have the whole thing gone when she was diagnosed, she then did reconstruction later.

Thank you. Everyone keeps telling me it's best to have mastectomy with reconstruction, but it's so frustrating to think it wouldn't have come to this. I just hope by sharing my experience it will encourage others to push like I had to(even though we shouldn't have to) the doctor keeps telling me that mine didn't present like normal, so maybe they need to look at pagets more.xx

we know something is wrong, my gp was like i don’t feel it. 

yes one of biggest annoyances in all this is having to advocate for oneself so much when we want to curl up in a ball.

lots of support here and hopefully helps you along your road.i read someones journey in breatcancernow who had similar sou ding story and it helped. as do so many on here.

Hi Honey

I hope you see this message as it’s been nearly two years since you posted. I was wondering how things turned out for you, eventually?

I’ve had a few issues since even before my diagnosis in May (when I was told I’d have surgery at the end of June), with lost swabs, referrals not made - and feel very like you in that I seem to be constantly chasing medical professionals. I finally have an appointment with my breast consultant tomorrow. I’m hoping they’ll have the results of the latest two biopsies I had the week before last. The MRI had shown up more areas of concern (to add to the already diagnosed Paget’s and two areas of high grade DCIS in the two lower quadrants. These latest biopsies were in the upper, so I’m going along kind of expecting to be told that rather than a lumpectomy it’ll become a full mastectomy…

Hope to hear back from you

Best wishes

Hi DancingHippo
Did you get your results last week? How are you doing?
Kathy

Hi, sorry it's taken so long to reply. Its been an absolute nightmare. I had the mastectomy done, as they said its just in ducts only 2percent chance of it being anywhere else,no need for chemo ha what a joke, they removed my breast and found 20mm carcinoma tumor it had also spread to lymph nodes, I ended up having lymph clearence surgery in the September and chemotherapy with immunotherapy as it also turned out to be her2 positive. I'm finally treatment free and getting stronger. We shouldn't have to fight to he listened to, if i hadnt have kept pushing i think I wouldn't be here now, with how fast it progressed.  I think a mastectomy rather than lumpectomy is better in the long run, as who knows what they can miss with lumpectomy as in my case i dont think they would have found tumour . Hope you are doing OK, it's absolutely shocking how can they loos something so important, they tell women to check and seek medical advise straight away and then act like it's nothing.

Oh Honey!! I am so sorry to read what a bad time you've had. I am glad you are on the mend.
Something needs to change! The medics rarely see Paget's and we really do not get taken seriously. My story reflects yours in part Honey, I also had a Grade 3 20mm carcinoma revealed after surgery that had not shown up on any of the scans. It was surrounded by high grade DCIS to an overall diameter of 50mm. Luckily for me they did not find it in my lymph nodes. Mine was ER8 PR8 and HER2 -ve. They sent it off for oncotype testing to the USA, but the lab wouldn't do it because of "extensive skin involvement". Why didn't they realise that before it was sent?? It wasted another month for me. I am on the chemo route now, 4 sessions at 3 week intervals. Had first one last Monday and just starting to feel a bit more human. Radio to follow, and 5 years at least hormone therapy.
They had two chances to figure this out when it was "just" Paget's. A false negative biopsy, and then, 15 months later, a locum medic at the BC clinic who had no clue what he was looking at. "This is a skin condition" he said "Go and see a dermatologist". I waited 6 months to see that dermatologist and they were so concerned that it hadn't cleared with steroids etc and was getting worse, that I paid privately to have another biopsy done. Of course it was positive. So I lost a breast and am going through all this invasive treatment, much worse prognosis, etc, because the medics don't get that this is "rare", but for we who have it it is 100%! By the time it was finally diagnosed I had had the symptoms, getting gradually worse for well over 2 and a half years. 
Anybody following on reading this, my "take" is do not think that a biopsy for Paget's will be absolutely infallible. I now know there is a 10% false negative rate, for all sorts of reasons. Paget's is pretty much 100% curable if caught early. It will eventually become an invasive carcinoma if left. It can take a long time, as it did with me, or not so long, as it did with Honey. Keep making "a nuisance of yourself" if you are in doubt. My private biopsy cost £600. A lot of money but the best £600 I have ever spent in my life!