pLCIS - Lumpectomy booked but feel like a fraud.

No experience of this, I was stage 1 grade 2, however, it is still frightening and overwhelming for you, lots of what ifs and unknowns, waiting for results and unpleasant biopsies.  Just wanted to send a hug and acknowledge what you're going through with this process. xx

Hi,

sorry to hear about your diagnosis. I don’t have experience with pLCIS but I have been diagnosed recently with high grade DCIS and had a lumpectomy a week ago with another one coming up soon, 

I felt exactly the same but regardless of it being stage 0 no one ever wants to hear the word Cancer. 
The road ahead is still full of tests, surgeries and waiting for results , it’s all overwhelming.

I’ve found these forums really helpful , know that you aren’t alone in this.

Be kind to yourself and I wish you all the best for your upcoming surgery.

sending hugs 

Fran 

36, Partner & 4 year old daughter 

Hi Fran, thanks for the hug. 

How are you feeling after your lumpectomy? 

Hey JR,

you’re welcome x

I’m feeling better than I suspected still quite tired and a little sore, taking paracetamol and it helps. 

unfortunately I have a secondary lumpectomy later this week  but surprisingly less anxious as I know what to expect this time around.

wishing you all the best for your upcoming surgery, hope it goes well and you manage to get lots of rest and have support during your recovery.

Fran x

I had PLCIS. It’s a complicated one because it’s “not cancer” but puts you at high risk of getting cancer. It’s also different to LCiS, which is also “not cancer”. PLCIS is treated like DCIS because it’s aggressive. Do be warned that imaging is poor for lobular cancer and the true results can only be found after surgery. It is very common for it to be much bigger than suspected and also multifocal - in several places. There is a strong push in the lobular breast cancer community to get both PLCIS and LCIS treated much more seriously and aggressively. In my case, PLCIS turned into invasive pleomorphic lobular cancer within a year.with invasive cancer all over the breast.

Hi JR!

So after a scan mammogram in October last year, I was called back for an ultrasound, then for a vacuum biopsy => fLCIS with comedonecrosis and the need to be operated (similar to you, it is treated just as aggressively as with DCIS) ... there was a second spot, so that too was biopsied, same diagnosis ... and "there is another suspicious area" which they checked with an MRI "we don't like the way it lights up" - led to a lumpectomy on December 18th.

The pathology on Jan 2nd was, that the 52g they removed was full of LCIS and fLCIS (also with comedonecrosis) and that they didn't get clear margins, with fLCIS on most edges of the excised tissue.

They wanted to do a further lumpectomy (although the first had left me with quite a defect, despite the operation notes saying that there was none).  After much consideration and research, when I went back for my appointment to discuss the planning of the operation on January 30th, I asked how certain could he be, that a lumpectomy would get everything, since the imaging hadn't nearly shown the extent of fLCIS as had been found after excision.  
They couldn't be certain and my gut said, that there was a lot more in there ... (he said, that the plan would be to do radiation therapy after the lumpectomy, which I wouldn't need, if I went for the mastectomy - which, with the already existing defect in my breast, was absolutely a valid option, also based on the diagnosis)...

So, I had a mastectomy on February 16th with immediate reconstruction (with an implant for the time being, as I wanted DIEP surgery, but the doctor said, if they found something that needed further treatment, my own tissue could be damaged).  I actually was in hospital for two weeks, as I was filling the drain (even when discharged on the 2nd March, the drain had 50ml in!)... and the pathology had come in.  
Doctor said, that they removed a 5cm LCIS tumour and he said, that my instinct was spot on and the mastectomy was absolutely the right decision - this size of tumour + what they'd removed in December, it was 100% certainty that it would at some point become invasive cancer.
I asked, if they'd have removed the full amount had I opted for (as recommended) the lumpectomy and he said no.  And of course for LCIS, there would be no further resection, just monitoring.

Yes - going from feeling healthy at the end of October to losing a breast three and a half weeks ago, it is pretty overwhelming (and being told by the breast care nurse in the hospital after the lumpectomy in December, that "it's not really cancer" didn't help either).

It is scary.  And I, too, have felt a bit like an imposter, as it is "only" and aggressive form of pre-cancer ... 

Wishing you all the best for your operation on Monday!  I will keep fingers and toes crossed that there is no upgrade and that they get it all with clear margins!

Andrea. xoxo

Oh my god, what a rollercoaster you've had. Xx