Paget’s Disease plus high grade DCIS

Hello
Well, it's fair to say that I have had a bit of a bumpy ride right from the very beginning :-(  I first had the early symptoms in May 2022. Had a punch biopsy in Nov 22 which missed the Paget's. I very definitely had it back then, but I think the punch was taken from an area outside where the cells had spread to at that time. They said it was dermatitis. I was backwards and forwards to the GP from then until Jan 24 when I asked to be referred to a dermatologist. The GP did a referral, but also sent me back to the breast clinic under the 14 day wait rules. Unfortunately the medic I saw in Feb 24 had no clue, and was incredibly rude to me. His words were "why has your GP sent you here? You've had a biopsy and it's a skin complaint NOT Paget's. Go and see a dermatologist". I felt so humiliated and I actually apologised to him for wasting his time!! I now now he was a locum. I got to see the dermatologist finally in Aug 24. Her words were "I am so glad you have had a biopsy done! This has all the hallmarks of Paget's disease.". Like others before her she sent me away with an even stronger steroid cream and told me to come back in 4 weeks if it hadn't cleared up and she would do another punch biopsy. It hadn't, the steroid cream actually seemed to aggravate it. Being the NHS another wait.... Eventually in early Dec 24 I asked the skin clinic if I could have a second punch biopsy done as a private patient. No wait as a private patient. So, the results came back Paget's positive on 9th January. The dermatologist referred me back to the breast clinic. It was as if the breast clinic did not believe what they were being told by a 3rd party, and would not "take me" back even though I was calling them regularly to plead my case So, I did not have the first appointment with the breast clinic until 31st January - so that was my first 3 weeks lost. Then they wanted a HER2 test, and nothing would be done until that came back - another 2 weeks. Then they ordered an MRI, another two weeks wait, but they made a mess of it and had to do it again as it couldn't be read, but they didn't realise that for over a week. Oh, It just goes on and on!! Biopsy of the lymph nodes next as an ultrasound had picked up something suspicious under my armpit, thankfully came back clear, but another week wasted. Then a PE/CT scan - also clear. Only THEN would they book me in for the surgery (15th April) that I had been told I would need right back in February. 
Part of the problem causing delays is that everything has to be discussed and action agreed by the MDT (multi disciplinary team). They only meet once a week.
I am not sure whether my story is typical, but everyone says that there is one wait after another. Being as we Paget's people are few and far between it has pretty much felt like they don't know what to do with us. It is evidently pretty common for there to be an invasive tumour under the Paget's, and for it not to pick up on the mammograms or any of the scans. Yes, mine was only picked up from the pathology of the tissue they removed in the mastectomy. The scans had shown up a "thickening of the skin" almost 9 cms across my breast radiating out from the nipple. My surgeon said it was most likely DCIS, but it might mask an invasive tumour - which it did. Mine was actually Grade 3 (not 2 as above, I mistyped that). Grade 3 is "aggressive". Not the same as Stage 3 - there's lots online about the difference between stage and grade. My stage is actually 0 to 1 as it has not been found in the lymph nodes they took during surgery, and at 2 cm was still relatively small. 
How has your DCIS been confirmed? Have you had biopsies other than the punch biopsy that gave you the Paget's diagnosis?
If I was you I would make it clear to the insurance company that it is not 100% certain that surgery won't reveal an invasive tumour. Hopefully it is "just" DCIS. You haven't had the 3 years being "fobbed off" that I have experienced, and I believe it is that long delay that has caused the DCIS to become invasive cancer.

Could you extend your insurance for a few weeks until you are sure what you are dealing with?

I know exactly what you mean about just wanting to be able to plan and move yor life forward. The "being in limbo" is awful. I am still in limbo - waiting now to see whether I need chemo or not. As I am ER+ (oestrogen positive) I am already on hormone therapy - for at least 5 years, up to 10 years potentially>

Hope some of what I have said answers some questions. and isn't too worrying! I found early on that there is little to no info out there for we Paget's ladies and am on a bit of a one-woman crusade to make some info available for anyone else coming behind us!  Ask again if there are more questions? 

Hi Kaf

sorry not to have replied sooner. I read it at the time but my brain was just fizzing over the impending MRI and then I’ve had somewhat similar issues to you with chasing and chaving for results.

The MRI came back as “extra areas of concern, we’ll book you an ultrasound in the morning”. I waited a week and heard nowt so I rang and was met with “oh, that’s odd. I can’t see an USS request on the system but maybe they have a note in radiology - I’ll go down there and check”. Now, having worked in the NHS I know full well that any request is done on the computer system so this was clearly BS. But I was polite. I waited six hours for her to ring back and tell me “Apparently there’s been a misunderstanding - they want a third radiologist to look at the MRI. If you haven’t heard anything by Tuesday (this was a Thursday and MDTs are on Wednesdays) give us a call”. So. I’m doing all the legwork yet again

Rang them on the Monday and was told that third radiologist had confirmed I should have another USS. I would hear about an appointment “soon”… Finally had a call on Friday last from radiology to saI was “booked in for a biopsy under USS”  The first mention of another biopsy.

I rang the breast nurse and queried this, asked her what the MRI had thrown up and was told the areas of concern are in the top half of the breast (the other two are in the bottom half) which aed me a bit. I won’t even bore you with the fun and games I had where she didn’t know if this was a follow up MRI and didn’t realise I hadn’t had surgery yet! ‍♀️‍♀️

Meanwhile, last week I contacted both Citizens Advice and the Macmillan Finance Advice section about the insurance issue. Both said it was too complex and beyond their remit but have given me a couple more places to try for advice.

All this on Friday plus realising we’d have to have our 18 year old cat (who my autistic son carries around like a baby - she the only living thing in the house he shows love to unprompted) put downSo that’s all arranged for tomorrow afternoon

I put the phone down to the nurse - who, to give her her due, acknowledged that I’m under a lot of strain with the cancer/part time work/side hustle/cat/fitting in medical appointments (I had an MOT at my GP surgery a couple of weeks ago as I knew my BP was high and wanted to get it down pre op cos I’m already extremely fat and therefore an anaesthetic risk - and it showed I am pre diabetic and have elevated cholesterol. I also saw the practice nurse as I thought I had thrush. Swab came back negative. So I wondered if it could be linked to all the boob stuff - and it threw up Extra Mammary Paget’s of the Vulva. FML. Mentioned it to the breast nurse - who’d never heard of it but said she’d email my consultant to see if she could expedite a referral to gynae). Honestly. Just so much. She said she could sign me off sick if it was all getting on top of me and I said I’d discuss it with my husband.

Rang him - and to my horror and embarrassment started weeping. Big, ugly, gasping sobs. My line manager happened to be in the office so hugged me and then told me to go home and think about whether it would be best to go off sick for the next few weeks - it’s looking likely op will be 7 July.

So yeah. It’s been stressful…

Hope you’re feeling better after your op x

Awwwh, DancingHippo! I am so very sorry you are under such stress. Why does it all seem to come at once! We're jogging on through life, and then the Universe thinks "Ha! She's doing too well. I'll just tinker with a few things - that'll bring her down to earth!" 
Really sorry to hear you will have to send your puss over the rainbow bridge. It is so awful parting company with our beloved animals. They are so much a part of the family. Doubly awful at this time of course. Go and hold her paw, tell her how much she is loved, and send her on her way surrounded by love. Fly high little puss, over the rainbow bridge. 
If it is practical for you then I would certainly take up the sick leave option and use the time to concentrate on trying to destress ahead of the operation. You could focus on eating some healthy, protein rich food that will help you through the operation and healing, do some daily walking, and maybe some mindfulness exercises to clear your head. I am sure life isn't straightforward for you with an autistic son, but if you weren't at work for a bit you could use that time to focus on your own needs. 
Good luck with the insurance issue. You certainly don't need the hassle of that on top of everything else!!

Thank you

How are you doing?

I’ve just come here to update (although it’s all in Honey’s thread!) and discovered I’d started replying to you presumably ages ago but must’ve got distracted and just not gone back to it ‍♀️

I literally got as far as “how are you doing?”

Clearly all the stuff going on with my little old lady took over my brain. She went gently, and Josh was the one to make all the decisions about when he was ready at each stage with the final vet visit. I wanted him to not feel rushed iykwim?

A week or so afterwards I started looking at cat rescue sites - I was really not doing well emotionally as the house felt empty without her. No little greeting “prp”s from her as I entered the kitchen. I even thought I saw her outside the patio doors…

On 7 July we picked up two adorable cats, aged 10 months, a female tortie and a male grey/brown tabby. We could’ve brought them home the previous week but I wanted to be home full time to give them full attention, knowing they’d need to stay indoors and familiarise themselves to their new environment. I was trading up at Blists Hill on 5/6 July so it was the right thing to do.

Their original names were Hansel and Gretal but l hated the connotation that then that made me the wicked witch  so, because my side hustle is a handmade sweet business, they are now Cinder and Toffee. They’re adorable and healing me body and soul

I’ll let you catch up with the practical surgery news over on Honey’s post.

Hope all’s good with you

Brenda x