Pleomorphic LCIS

Summer_Girl

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 havingjust  the segmental masectomy surgery.  I realize I may need radiation, but I won't know until I speak with the radiologist and ongolist.  I will most likely forego the Tamoxifen based upon the heavy toll it takes on the body, but I'll know more next week.

I am feelng optimistic this week.  My worst fear is that my identical twin sister has to endure any of this cancer stuff in the future (since we have the same DNA) 

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

Summer_Girl

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.

nanannlan

welcome, laurie

from my perspective i think you are doing the right thing by not going any further now.

should the topic of radiation arise, remember it is a serious decision which may affect

future procedures.  get more than one opinion on whatever you do.  best of luck.

beacon800

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.

Summer_Girl

Thank you Beacon800, I am calling my twin sis right now to let her know your story.  I know she will be dilligent about regular mammograms; she has one scheduled for next week.

cindala

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

Summer_Girl

I've read through the posts; it sounds like everyone is doing what their doctors recommend.  I know we all have PLCIS but there are other factors, too.  What is scary to me is the disparity in suggested treatment.  Some women are getting masectomys, some lumpectomys, some segmental masectomy (that is what my doctor recommended)

Radiation - some yes, some no

Chemo - one yes, mostly no

Tamox - some yes, some no

So, we are all doing what are doctors suggest, but it is so drastically different.

My first MO, told me after the segmental Masec, that "radiation is mandatory and you must do Tamoxifen".  I have a known genetic liver disease that I am watching; She didn't seem to care much about the liver disease and said i could talk to my hepatologist.  She was still  adamant about the radiation and Tamoxifen.  Well, the brochure she handed me talks about the impact to the liver and how I will need to be monitored for liver impairment;  I already have liver damage (not alchohol related, just genetic).  This is frustrating.  And no Onco-score; do I have to ask for that to be done?

So, what is the right thing....no one knows.   I guess I'm off to the radiation oncologist; do they have input on what is the right treatment?  And, without a doubt, I need a more engaged MO

 3.2cm PLCIS + DCIS, clear margins, ER+PR+

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

Summer_Girl

Thank you Cindala,  My Doctor is absolutely fabulous and I think I will like the Radiologist (he called to discuss things on the phone);  I'm going to try the Oncologist in San Diego....close to home.   I guess in reality, the surgeons suggest the surgery and the Oncologists recommend therapies.  As for the Onc, I'm not sure I need to see one, since more than likely I'll opt out of Tamoxifen (for about 20 reasons, but mainly my genetic liver disease and quality of life)

 One more question, neither HER2 levles  nor OncoTest were requested.  I asked and was told they weren't necessary. 

I guess I am OK with out knowing these values; right?   PLCIS/DCIS ER+PR+ 3.2cm  clear margins

dobie

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.

nanannlan

hi, laurie

you are on the right track by getting doctors with whom you feel comfortable.

always be pro-active.

one added bit of information; when i had my conference at memoral sloan kettering in

new york for a third opinion regarding radiation, they told me that they do not do radiation

for plcis.  this reconfirmed my second opinion for which i am ever grateful.

you have time to consider all the alternatives.

wishing you all the best 

Summer_Girl

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. 

cindala

Interesting article in today's Wall Street Journal Personal Health section today (9/4/2012) re breast cancer treatment, they specifically discuss DCIS, and oncotype DX for further anaylsis of cells.

nanannlan

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.

nanannlan

hi, laurie

i know i just posted, but i saw something in your post that i missed before and that is "microinvasion."

definitely get a second opinion on your slides from another pathology department and from a radiologist and discuss the microinvasion with your oncologist.

keep us posted and always wishing you the best

Summer_Girl

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.

nanannlan

Laurie. Great! You've done a great job. Wishing you all the best

Dilari

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?

Crescent5

Dilari, I had PCLIS. I understand your frustration, fear and confusion. Ultimately the decision is entirely up to you. You have some time to process everything and research. Try the tamoxifen. I found it really not bad at all, and I'm very sensitive to meds.

Understand that on these boards, you're likely to see posts from people who have had problems with the meds, or surgery ..etc. If someone's done well, they tend to move on.

I took a year and went with the PBM (prophylactic bilateral mastectomy, skin & nipple sparing). It turned out to be an excellent choice for me. Difficult, but right for me. 

Best luck to you.

Anonymous

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

Thank you both for your replies. I think researching all this just makes you more confused. And I know I just want this removed because I will constantly worry. But will have to do reconstructive since I am very small. And Tamoxifen just  frightens me. Because if its going to happen with side effects it will happen to me...just my history. So yes I will take the time.

Again thanks for replying,

Always keep smiling !!!

cindala

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

Summer_Girl

Dilari,  You will find every path which can be taken has been taken by someone on this topic board.   I believe we all feel extremely confident with our decisions; it was the right decision.  But, it was the right decision for each person. 

I had PLCIS and DCIS (rare to have both).  As recommended by my doctor, I went with a lumpectomy and radiation.  I feel very good about my decision.  I am 1/2 way done with radiation.  I will not likely take Tomoxifen; it only reduces my odds of recurrence by approximately 5% and the side effects it can have are far to drastic FOR ME. 

 I wish you the best of luck.  Listen with an open mind to what your doctor suggests and go from there. 

grandmaof4

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.

Crescent5

Grandma my thoughts are with PLCIS, you never go a year in between tests. The Pleomorphic component suggests aggressiveness that I would not blow off. At the very least you should continue with your mammo/mri every 6 months.

Good luck to you.

Summer_Girl

My doctor recommended mammo alternating with MRI evey six months

grandmaof4

Thanks. I had good results from MRI, blood work & appt w/new Onc. In Springfield IL & he knew abt PLCIS. An amazing relief. He wants to go with the spring mammo & fall MRI. Will see him within few weeks of each. Feeling much relief that he knows something abt it. Not sure whether he treated it while in Cal but was aware of it. Lori

Summer_Girl

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.

 

ballet12

Hi Summer Girl,

Glad to hear that you are nearly three years (as am I--awaiting the annual mammo/sono).  I just read through an older post of yours in this thread.  You said that in addition to the PLCIS and DCIS that you had microinvasion.  It's actually probably a good Idea that you did the radiation in that scenario.  Sorry you had the side effects from the radiation therapy, but you probably did yourself a big favor in risk reduction, and you are much less likely to have a recurrence requiring mastectomy.  So, all good.  And I totally relate to the Tamox decision.  I made that one, as well.

Summer_Girl

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.