Pleomorphic LCIS

I am new to this board and find this thread very educational.  I am also thrilled that someone on here saw the same Dr. Guiliano (now at Cedars Sinai) that I am seeing.  There is so much comfort in knowing you are seeing one of the very best cancer surgeons in the US.  No matter what happens in life, I will be forever thankful to him.

Initially my diagnosis was DCIS and LCIS, but after my segmental masectomy (they took a little more than a lumpectomy), the diagnosis is PLCIS and DCIS.  The doctor did an amazing job on the surgery; I feel very lucky right now.   I see the Oncologist next week, but at this time, since my margins are clear and there is no node involvement, I am quite comfortable with having the segmental masectomy surgery.  I realize I may need radiation and tomoxifen, but I won't know until I speak with the radiologist and oncologist next week.

I am feelng optimistic this week.  My worst fear is that my identical twin sister may have to endure any of this cancer stuff in the future (since we have the same DNA)...hopefully not.

As someone said in this post, go with your gut.  Right now, I feel really good about my decisions.  Wish me luck.

Laurie,  I wanted to comment about twin sisters.  My mom died from BC at age 59.  She had an identical twin sister who never developed bc and passed age 79 from a totally unrelated illness.  So, having a twin does not seem to mean they will get cancer, unless there is the gene mututation.  Of course it does mean a higher risk to the sibiling, so your sis will need to keep  vigilant about surveillance.  Good luck to you and congrats on the good results so far.

Laurie, So glad you got to D. Guiliano (my surgeon) and that you have clean margins.  I know that he will monitor you closely, you are in very good hands. I still see him for follow up post mastectomy.  Please let me know if I can help in any way, you can PM me if you like.

All the very best,

Cindala

Hi Laurie,  This becomes overwhelming and quite diverse, much depending on your path report.  Since you have both DCIS and PLCiS probably considered more complex.  Yes you should consider a second oncology decision.  I would be happy to discuss my oncology path at Cedars and St. Johns, really too much information for this venue, but happy to speak to you, PM me if you want to discuss further.

Cindala

Laurie- My understanding is that the Oncotype dx test and the HERS-2 testing is for invasive disease. Since your pathology is "in-situ" or non invasive it is not indicated. The recommendation for radiation is for the dx of DCIS which is standard. Radiation is not standard treatment for PLCIS. The difference between a lumpectomy, segmental mastectomy and complete mastectomy is just about the amount of tissue taken and so depends on the size of the lesion. Lumpectomy is really just a lay persons term for what is a "partial" or segmental masectomy in medical terms. Also some will decide to have masectomy for cosmetic or prophylactic reasons. One thing I have clearly learned on these discussion boards is how unique each of our situations are. Each person's disease is totally their own. I think it would worry me more if we were all treated the same way.

nannalan,  Wow, interesting information and good timing. 

I think the doctor and Onc are suggesting Radiation since I have DCIS and PLCIS and a microinvasion.  I'm not sure that makes a difference. 

Also, I won't be taking Tamoxifen.  Did you get your second and third opinions from Radiologist or Oncologists?  I really don't understand the role of an Oncologist.  

Update:  I actually just read through all of your reports and see that it was a Radiologist who recommended against Radiation.  Well, I will go to my appt with the RAD on Wed and then a second opinion. 

hi, laurie

i brought my biopsy slides to two different radiologists.  the pathology department at the  first hospital held a tumor board regarding the slides and decided that the plcis did not require radiation.  the second

hospital's radiologist concurred and so i did not have radiation.  

i would have to look back in my "breast file" to see when i first started seeing an oncologist.  when i did

go to one, her role was to guide me and never to make any decisions for me.  everyone's story is different.

wishing you the best.

Hi Nanannlan,  My cancer has already been through pathology multiiple times; so the diagnosis is pretty solid; unusual, but solid.  DCIS and PLCIS w/microinvasion. 

I've also been told why I need radiation from three different folks; so I am scheduled to start after simulation.  I am extremely pleased with the radiologist I've selected; she offered the four week Canadian protocal and showed me how different positions and blocks can be used to protect things like my liver. 

I see a light at the end of the tunnel.  I hope to complete radiation and aside from good diet, vitamins/supplements and regular mammograms., put this chapter behind me.  I am ready to move on with life; well, after the radiation.

I still don't understand what role the MO plays.

Hi, I was recently diagnosed with PLCIS non invasive..I am so confused with the little information that is out there.It seems that no matter who you see on this, its a matter of their opinion. I just went to Dana Faber to see if they would no more and was told its a daily topic, they dont no much on this.  Left there feeling that I would be just a case study. Go on Tamoxifen is what I was told. The side effects are horrible.

I read these blogs but am confused since I don't know much on this.

I am just trying to figure out whether I just continue my days with no meds..or 50% with Tamoxifen if I am able to take this, or just have this taken out and reconstruct. How does one make a decision when you have no clue when or if this will turn to cancer?

Dilari---"tamoxifen---the SEs are horrible".  

Everyone responds differently; you may not experience any SEs at all.  I took tamox for 5 years, had one bad yeast infection early on (which cleared up very quickly with Diflucan), and slight hot flashes. My mom doesn't remember any SEs at all. You could always give it a try and see how you do.

 I was diagnosed with LCIS 9 years ago and my risk is further elevated by family history of ILC (mom). I do high risk surviellance (alternating mammos and MRIs every 6 months and breast exams on the opposite 6 months, and take preventative meds. (tamox, now evista). It all kinda boils down to how much risk you can live with. It's such a personal decision and there are pros and cons to both surviellance/meds and PBMs.  The good thing with LCIS is that you can (and should) take your time to really decide what it the right choice for your individual situation.

anne 

Dilari,  My path was similiar to Crescent 5, took me about a year to make the decision, but was 90% sure it was the right way to go.  I was always concerned when I would have to deal with invasive with chemo, rads.... so made the decision to have BMX with reconstruction. 

Wishing you all the very best, this is not an easy decision.....

Cindala

Hello to all. As we all have to muddle through this process (PLCIS) without as much guidance from the medical community as we'd like, I'm faced with starting over with doctors after my oncologist and surgeon moved away this summer. I would LOVE to contact a doctor who has actually treated this condition. As far as I know, I'm the only case in Illinois. If anyone in the midwest knows of someone, I'd sure love to have the info. Just had my yearly MRI and it came back without any suspicious abnormalities. Yea!! However, the only follow up recommended is a mammogram in one year. I'm used to mammos every 6 mo and MRI once yearly. Any thoughts or suggestions are most appreciated! Lori

oops, forgot to add I've been on Evista for almost 3 years now.

My doctor recommended mammo alternating with MRI evey six months

I am nearly three years clear of the combo PLCIS/DCIS.  I went with lumpectomy and radiation on one breast.  Right now, with everything I know today, if I had it to do over again, I would go with lumpectomy only.  The radiation was very hard on my body (after is was done).  Also, if there is a recurrence, my options are now limited to mastectomy.  I am not sure I knew that three years ago.  But. I am optimistic I am clear and free and life is good.  I rarely sign in any more, just wanted to give a three year perspective.   Oh, I never considered Tamoxifen due to liver issues I have and personal choice....I feel very good about this choice.

Thank you Ballet12 and congratulations on your three mark, too.  It's a good feeling to be at this place.  I appreciate your words, and respect your decision for your life path, but again, if I had to do it over again knowing everything I know today, I would do the lumpectomy.   I would not do radiation (even with the micro invasion) and I would not take Tamoxifin.  This would be the path of my personal choice.  I completely understand your path and those who've chosen Tamoxifen and those who've chosen mastectomies.  We do what we believe is right for us.

I should add in that I had clear margins after the initial lumpectomy, I continue to exercise regularly, see a great naturopath/biofeedback doctor in Santa Monica and based upon his advice I've given up refined sugars (donuts, cake, etc), alcolhol (except a special treat once or twice a month), beef, caffeine and dairy products (except a little yogurt on my granola).   I also take daily supplements of about a dozen different types.