Concerns about DCIS recurrence

Oxbury

Sorry for the epic backstory. I don't really have anyone I can talk to about any of this and currently feeling like I need a vent.

Age 31, nearly 32. Skin sparing double mastectomy on 30 July 2021, so have had tissue expanders in for 4+ months now. DCIS in both breasts (low to intermediate grade, whatever that means), and one of the DCIS clumps/tumours was 60mm and the other 42mm. Nothing found in the sentinel node biopsies so was cleared in August 2021 (yay!).

Saw the plastic surgeons this Friday past for a review and gathered up the courage to ask about the kinda knobbly lumps under the skin on my chest (like, between the upper breast area and clavicle/shoulders). Finally told I am added to the waiting list for an approximate date of March/April for implants, but I guess it depends on the outcome of the ultrasound.

I've noticed the lumps several years ago but it's an area much higher than anyone has ever scanned or biopsied so it's never been looked at, and I'd figured it's not something I needed to ask about before (or maybe just didn't want to think about it) because they were tiny and not really noticeable. Since the mastectomy - though it may just be in my head - they've become more numerous and more noticeable/larger. So, in the interests of maintaining some kind of sanity, I asked the doctors, one of them felt a lumpy area and was like yep let's send you for an ultrasound.

Ultrasound is happening much, much faster than I thought. I'm currently a patient in the Australian public health system which normally moves at a fairly glacial pace due to massive backlogs. Referral for ultrasound was on Friday 26/11, and I called the clinic on Tuesday and was told they were waiting for a registrar to discuss with a radiologist before they could look at bookings. I figured oh well, probably a few weeks or more to wait. Instead I got a call yesterday to ask if I could come in for an appointment on Monday 6th. Turns out the plastics team referred out to a private radiology clinic, likely so it could get done faster. In the course of chatting to the person doing the booking, the appointment got moved to Thursday 9 December so I could have someone who was experienced in both musculoskeletal ultrasounds and breast ultrasounds. (A bit relieved because that's also when I get paid so I can afford to pay for it on Thursday, when I couldn't have if it had been on the Monday).

I have PTEN syndrome so am aware it could be random benign lumps of several possible kinds, but I also can't help but worry. I knew there was something wrong before I got the diagnosis of DCIS; a deep gut feeling plus the obvious sign of one breast larger than the other and swelling under my arms. I want this to be just my anxiety and something like lipomas or fibroadenoma tissue in an unusual area - but I can't help but be worried but what if it's not?

I'm not eligible for radiation and am not having any other kind of treatment for the DCIS as they got it all in the mastectomy. The thought of chemo terrifies me - really only because I wouldn't survive financially given the amount of time off work it could potentially require, and I would worry about the strain (financial and otherwise) it would put on my family.

Basically, I'm trying really hard not to think about it. I know that I have zero control over the outcome and whatever will happen will happen. I know that the likelihood of it being a recurrence or just more DCIS in a random spot is very low; but I also know that the research into and understanding of how a PTEN genetic mutation behaves is still so new. The only way to cope is to stay busy and focus on the things I can control, but that's definitely not easy.

Hope everyone else is doing okay. If anyone has been in a similar situation please let me know your story.

Oxbury

That ultrasound I just had was the single biggest, most pathetic, utterly infuriating waste of time, money, energy and anxiety I have ever encountered in all my years of having ultrasounds, scans and tests.

Due to my genetics and cancer risk I've had about 10 times as many ultrasounds as your average person, and a ridiculous number in the last year alone due to the DCIS diagnosis. Today I went to a private clinic that the hospital referred me to in order to check out the new-ish lumps on my chest above the tissue expanders.

The technician was bordering on rude, did it all slapdash, and raced through the whole thing. Instead of investigating the chest and shoulder area which was the part I was concerned about, she spent about 1.5 seconds at a time on each lumpy area I pointed out, didn't take many (possibly not any) photos of them. She spent the vast majority of the time scanning and photographing the black void that is my tissue expanders and along the very edge of it.

She kept saying she couldn't see anything, and telling me there was nothing there or that she thought it was fatty tissue. I thought it would have been much more professional if she'd just said little and explained the doctor would interpret things. She wanted to talk about Christmas and whether I was going back to work afterwards and chatting like her mind wasn't even on the task. She was often incredibly condescending, which upset me when I was already feeling so fragile and anxious.

I tried my hardest to point out all the lumps and bumps which can be quite clearly felt. Some is evidently random fatty tissue, I know that. Others should definitely have been looked into much, much more thoroughly. I'm crushed by the disappointment of having devoted so much of my energy, anxiety and $170 I cannot afford right now to something that I have no doubts will have been utterly pointless. Did not get a chance to speak to a doctor and I have suspicions that - given how busy the clinic was - that the pictures weren't even examined by a radiologist, judging also by the rapidity I was sent back to the front desk to pay my account.

I saw the images had been uploaded to the portal on the way home. 7 out of the 18 images were of the lumpy areas, if that. Only 4 of those were actually labelled 'lump'. The rest were of the tissue expanders area. What a waste of time.

Get the results sometime in the next 3-7 working days, apparently. Sorry to vent. I'm so angry and sad right now.

Sunshine99

Oxbury, I'm so sorry for your experience. I wish you had been treated with concern and respect. I agree that the tech was rude and inappropriate. I hope you get some answers soon and that your worries are somewhat relieved.

Come back and let us know what happens,

(((hugs)))

Carol

Moderators

Oh Oxbury, can you talk with the prescribing doctor to get another script, due to the poor images?