PLCIS UPDATE

hi caligirl - you and I could be twins. Same dx, same age range, plcis which is not that coomon, busy breasts and fibrcystic breasts. My case includes that my mother died of bc (invasive ductile), also I had flat epithial atypia and some lesser things like schlerosing adenosis amd papillomatosis. tested brca negative but went with BMX. It was controversial within my hospital (Stanford) with some doctors thinking it was overkill and others absolutely supporting me.

The net is five years have passed and I am quite well. It has been an awesome reflief not to have constant surveillance and more biopsies (which I already had many). Lately I have been working thru some body image issues, which I think I will work thru with positive outcome.

I did not reconstruct and no sentinel node bx. The recovery was very quick and actually painless. The only pain I had was when I snagged a drain on a door handle. That was an ouchy! Other than that, zero issues. I have almost all the feeling over my chest too, though some of it was restored over the course of time.

Hi Caligirl I'm sorry to hear about your PLCIS. I was dx'd with that OMG has it been four years? Wow. Cannot believe I forgot the date! It will show up in my sig line after I post.

I didn't like having LCIS, but the unknowns of PLCIS threw the whole thing into a different stratosphere. I had PBM a little more than a year from dx. I wanted to go a year of surveillance to see how I'd manage. I hated it.

I had nipple and skin sparing mastectomies with implant reconstruction. Was suppose to go direct to implant (I was only a C cup) but had a complication and had TE's installed. 3 months later, I got my 400 ccs of silicone

Were I to do it over again, I'd have gone for autologous refills rather than implants. I just didn't have enough fat at the time, and was too afraid to do anything complicated. They look great but could feel better with my own fat in there. But I'm not so unhappy that I plan on signing up for more surgery.

Good luck with everything. Time goes so slowly while waiting for that surgery but it really picks up about 6-8 weeks later. There are many many days I forget about breast cancer entirely.

Oh, I should mention that I ended up with invasive anyway. They found 2 tiny tumors in the tissue they removed. ILC is a sneaky little bastid. I obviously made the right decision. Trust your instincts.

I was so relieved when I woke up from surgery It was so glad to have it all behind me. Best of luck tomorrow. You'll do great.

It was a bummer to have gotten that dx when I thought I was finally free, but it's also weird to be dx'd with cancer after it's gone.

Honestly cannot believe I've had these implants for 2 and a half years. When I was where you are now, the time went soooo slowly. I remember reading a post from someone who had undergone PBM, and she said it was so nice to have BC in the rearview mirror. I couldn't wait to feel that. You'll be there very, very soon.

Good luck {{{{hugs}}}

Hi Caligirl,

Thanks for posting. I am so glad your surgery is behind you. I too am facing this upcoming surgery and am so fearful. Each time I read a post that somebody has come through it and feels good about having done it, I am encouraged. The wait and see approach would cause me constant anxiety. However, all of this causes anxiety! I wish you all the best in your recovery.

Hello,

Thank you for your posts, initially I couldn't find any other 'cases' on forums, and the articles I found on PubMed are pretty gloomy, so I have been freaking out since Xmas.

I have been diagnosed with PLCIS, but was warned it may be reclassified as invasive rather than in situ after lumpectomy. I had been doing surveillance (ultrasound scans as my breasts are really dense, which is a risk factor for BC) since 2012 and had had a biopsy back then, which showed no abnormalities. In July, one of my fibroadenomas had increased in size, so with my GP and the radiologist we decided to have it removed. I was to have it done by HIFU so needed a biopsy first... and it came back with PCLIS! 12 people looked at those scans (including 3 radiologists and 2 breast surgeons) and no one suspected there could be anything amiss: the PCLIS just didn't show! My GP was really a star: initially he had been pushing for MRI scans, which he says give better pictures, especially in women with dense breasts, and which might have shown something, but I don't have private health insurance so did ultrasound scans instead. Yet not a word of reproach from him, just 'focus on the future'.

I was not impressed with the surgeon: she had the results of the biopsy in November, 1 month before my appointment, yet didn't bother to contact me or my GP. He assumed that no news was good news, so when I called him, he told me everything was fine. It was quite difficult to stomach the news when I met her, especially as I had never heard of PCLIS, only of classic CLIS and DCIS, and she made me feel as if I was a bad student who hadn't prepared her exam (it wasn't in the syllabus, mam!). She insisted it was 'urgent' I had surgery, yet she couldn't book me in until mid January as she was going on holiday for 2 weeks...

I am going to see someone else as I have insurance issues and work issues (can't take time off like that - the whole point of HIFU was that I would have been able to have it during my lunchbreak - well, almost) anyway. As PCLIS is often multifocal and bilateral, would it be worth doing a MRI scan before the lumpectomy, and maybe a PET-CT scan as well? According to the biopsy report, the dodgy cells show a total loss of expression of e-cadherin, so they are more likely to metastatize early, apparently. As well as the hormone status (ER+/- etc.) of the tumor(s), I am worried about the energy metabolism of those 'mutant' cells. While researching Prof Valter Longo's work, I chanced on 2 articles about ketones and lactate use by breast cancer cells (

http://www.ncbi.nlm.nih.gov/pubmed/21512313 and http://www.ncbi.nlm.nih.gov/pubmed/20818174  ). If some of those cells (including the ones which may have 'escaped') use ketones and lactate as fuel, could they just not show at all on a PET scan, which uses glucose if I understand it correctly?

I eat pretty sensibly, exercise fairly regularly, am a low BMI, and do not have any history of any cancer whatsoever in my family (and they are long lived, though nobody ever made it to 100!). I do work really long hours though, desk-based roles for the past decade, and I have been chronically sleep deprived most of my life, as I've been juggling work and studying. Low vitamin D, and usually low iron: I just received an invitation to a blood donor session next week, and had to advise them I am no longer allowed to donate blood.

I am 39 and haven't had any children yet. I was thinking of getting in the family way prior to diagnosis: friend dumped me mid December (I did suspect something was up - I was not earning enough for him and he was forever going out and socialising without me), but I was ready to move on and looking forward to 2015, and bing, PCLIS! It's quite difficult to take time off work too: I suffered from sciatica (herniated disc) in the summer of 2013 and the summer of 2014 (both times, didn't really heal until Xmas) and soldiered on, so they are just expecting me to carry on no matter what I get! I am worried about the side effects of the drugs (whether anti hormone therapy or chemo): for my back I was prescribed amitryptilline (a really old antidepressant), which I ditched after 5 days because of the side effects (which took over 1 month to wane off, and initially got worse, during the 'discontinuation period'), and a NSAI, which I ditched after 10 days for the same reason (stomach pains and nausea went on for 4 months). Physio and Pilates work much better for me, but of course that's more expensive, and time consuming!

I guess I'll feel better once I have found a reasonably good surgeon/oncologist, we're agreed on a plan of treatment, and the insurance issues are resolved, but right now, I'm gutted.

Best wishes to you all.

Hi Penzance, I don't have PLCIS (although I did have ADH/ALH and DCIS).  I would just say the opposite of what that surgeon said, who told you "focus on the future."  I'd say, focus on the present.  Wait to see what the lumpectomy results are before you worry about the effects of chemotherapy.  If you do have invasive disease, you'll have plenty of time to worry about that.  I will say that your research skills are impressive! Let us know how it goes, and (((hugs)))

Hi Caligirl,

Thanks for your reply. Sorry I haven't been around, the first quarter is one of the busiest times of the year for me at work, and I've been battling a cold + blocked sinuses... for 5 weeks now! A bit worried about how my immune system is tackling the PLCIS (or PLIC, 50-50 chance) if it can't handle a mere cold. Feeling so headachy that took a paracetamol tonight, which is really unusual for me.

I'm not in the US but in the UK. I am going to get treated in France.

HIFU stands for High Intensity Focused Ultrasound. It's a technique which has been used for a couple of decades to remove prostate gland nodules, as a less invasive alternative to surgery. A French company, Theraclion, recently developed a machine which uses the technique to remove breast fibroadenomas: see link http://www.theraclion.fr/wp-content/uploads/2012/10/52_Kovatcheva_Ultrasound-guided-HIFU-treatment-of-breast-fibroadenoma1.pdf

The technique is still being assessed (the equivalent of getting FDA approved) but first results look really promising. It is quick, there is no need for anesthesia, and little or no pain afterwards. It is also less invasive than lumpectomy and could allow women with fibroadenomas to get rid of the little buggers and do ultrasound/mammos less frequently (e.g. every 1 to 2 years instead of every 6 months).

You do have to do a core biopsy first to ensure there are no malignancies. That's how my PLCIS was discovered - 'incidental finding' as they say. 2 years before, I had had a biopsy of the same fibroadenoma, which had been negative (no hyperplasia whatsoever). The fibroadenoma itself is probably just what it looks like - a bog-standard fibroadenoma, however, the malignant cells in his neighbourhood would have been releasing 'divide and don't die' messages, which the fibro obeyed. The growth spurt is what prompted my decision to remove it, but even then, nobody suspected there could be any cancer of any kind, and some of the docs thought it was overkill, as all the scans looked normal. I really feel I've been 'had' so now I'm getting a bit paranoiac.

I am going to try and book appointments with at least 2 surgeons later this month. One works in a private hospital and is highly recommended by one of my doctors, also a surgeon (the issue is the cost), the other works in a research oncology centre. I have also been in touch with another research hospital (linked to a university) and may get the name of a third surgeon. I don't think any of these surgeons have had their own PLCIS 'case' before, but at least the places where they work (with the exception of the private hospital) have protocols which mention PLCIS, and they have access to a wide range of treatments (including drugs), diagnosis tools (molecular profiling etc.), the latest machines for radiotherapy, and even robots for surgery. And if secondaries show up elsewhere, they won't be fazed out, as in 'I only deal with breasts!'. I am also going to insist that they investigate the left breast (painful fibroadenoma sitting there, started the whole monitoring process several years ago) and probably do a MRI of both breasts.

I've gotten my hands on Dr Susan Love's Breast Book, which is a really good 'Breast 101' course. I find the stem cell theory (http://ludwigcenter.stanford.edu/overview/theory.html) really interesting, especially coupled with epigenetics: if some of the stem cells in my breast buds got tampered with early in development (as early as when I was still in utero), that would explain why I got a PLCIS, which tends to be diffuse (multifocal, bilateral), rather than a disease which is just in 1 place like DCIS. 

Another interesting thing I got from Dr Susan Love's book is that the incidence in premenopausal breast cancer is the same the world over (i.e. no significant difference between China/Japan and the West), and the causes of breast cancer in young women are not known: all the factors that are protective are only effective for older women.

What upsets me most about losing my breasts (or at least one of them) is that I wanted to breastfeed when I have children. From looking at posts on another thread today, it looks like after radiotherapy you cannot breastfeed, and the first surgeon I saw wanted to irradiate both breasts, yet when I asked her if my breasts would still be able to produce milk after treatment, she wouldn't answer the question, but kept saying reconstructed breasts could look just as good as normal breasts thanks to technical progress etc. I don't care how they look. Some docs could really do with a 'Listening Comprehension' course, and a 'Honesty' course.

I will keep you posted about what treatment I settle on - and the results of the lumpectomy or mastectomy. I do hope it won't be invasive, I feel so crap with a mere cold already... Best wishes to everybody.