Invasive Pleomorphic Lobular Carcinoma

pipers_dream

It's the word pleomorphic that apparently makes me unique, lol. 10% of BC are ILC and less than 5% of those are IPLC and I"ve got some interesting things going on in there. The path report says that I have highly pleomorphic nuclei with a nuclear grade score of 3, a tubule score of 3, and a mitotic index score of 1, for a total of 7. A typical ILC would have a score of 1. Well I always did say I've got more interesting problems than anyone else! Anyone else? (BTW, docs did not and will not explain this to me, and believe me I have asked.)

Rdrunner

piper I think you are mixed up re the grading etc.. grades for breast cancer go from 1 to 3, its derived from the nottingham scale which measures three things, tubular score, mitotic score and nuclear score.. the score of these range from 1 to 3 also and are totalled giving an overall grade. Total of seven is a grade 2, the mitotic score of 1 is fantastic.. this is another way of measuring how fast it grows.

Lobular tends to be overall grade of 1 or 2 but nearly always has a tubular score of 3.

I also have a score of 7 overall, but im not pleomorphic, tubular 3, nuclear grade 2 and mitotic score 2 but the count was 16, i believe one more it would have been a 3 overall giving me an overall grade of 3. The dont tend to treat pleomorphic any different than regular ILC (like there is any thing regular about any breast cancer lol). They dont treat ILC any different than IDC either, and some experts believe it should be and that it shouldnt even be graded the same way as IDC

pipers_dream

Yes Rdrunner, I am still quite new at this but got those numbers off the path report, which finished up by saying that the "total score of seven corresponds to a moderately differentiated invasive component." Whatever that means. But yes, I am grade two and then the seven is the grade for the pleomorphs I guess. I"m so glad you wrote though--your numbers look like mine--the ones I know that is.

ziggypop

Piper - Here's a good thread on pleomorphs: http://community.breastcancer.org/forum/71/topic/780402?page=1#idx_16 - look into what Nash has to say. Basically my onc said the same thing, that it's really not considered that important - it's a component, but as far as diagnosis is concerned, the er pr HER2 status is way more important. Many people don't even know what things go into their grade, the grade is as roadrunner said based on the nottingham score & your score of seven is based on a number of components - and that score of seven is what gives you a grade of 2, on a scale of one to three with three being considered the most aggressive. The pleomorphic 'shape' of the cells is already taken into account in your grade. All this is to say that you don't have to worry that you have some strangely aggressive form if ILC.

ziggypop

http://community.breastcancer.org/forum/71/topic/780402?page=1#idx_16

This link explains the nottingham score and how the overall histological grade is derived from that. Everybody has a nuclear pleomorphic score of either one, two or three. Again, it's just one component in the overall histological grade.

pipers_dream

Ziggy, that other thread was a huge help. Thank you so much. Now I'll go check my Nottingham score. But it's good to know that some women are still alive after several years and even doing well.

pipers_dream

Back to freaking out a little but trying not to think about it too much--had the bone and CT scans yesterday and slept thru the entire bone scan b/c of no sleep the night before and then a good dose of benadryl b/c of being allergic to CT contrast dye. But you know how you're hyper attuned to how the tech behaves and talks to you? She left me alone on the table (for some more napping) and went to talk to the radiologist for quite awhile after the scan and then when I was leaving she told me that I really need to make sure that I hear from my BS by Friday and to call if I don't. Ugh, doesn't sound good. But one good thing I can say about the bone scan is it's one of the pleasanter tests you can take--you just lay there on the table and move a little this way and then lay there for 10 min while they get the scan and I was so comfortable and they put a warm blanket on me and I didn't even have to take my clothes off or anything. LOL, TG for small blessings. Now I have a lot of radioactive dye still in my system so I think I'll go drink a bunch of water.

pipers_dream

Yay--finally some great news--bone and CT scan clear! (Piper does the happy dance.)

ziggypop

Glad to hear that your scan was clear, piper, that is great news.

Rdrunner

great news!!! guess the tech didnt want you to be worried all weekend and that was why they wanted you to talk to doc !! i bet you will sleep well tonight

pipers_dream

Thanks for your support ladies. Yes Rdrunner, I slept really good last night!

iwannaseeyoubebrave

Were any of you initally diagnosed with IDC during biopsy and after surgery pathology reads ILC with no signs of IDC?  My initial biopsy in December was diagnosed as IDC but met with my surgeon yesterday (one week follow up) only to learn I have invasive lobular carcinoa with both pleomorphic and classic morphology.  Follow up with Oncologist to discuss treatment and report next Tuesday.  How could the inital report be different?  Frustrated

lekker

Brave - did you initially have a needle biopsy that showed IDC?  Mine did too, then surgical pathology revealed ILC. I don't know how common it is to do all of the tests to differentiate between ILC and IDC with a core sample (specifically e-cadherin and calponin).  If the core sample reveals invasive cancer, it really doesn't matter if it's lobular or ductal - both need to be removed via lumpectomy or mastectomy. After surgery, pathology tests the tissue to determine specifics.  Surgical pathology is always more thorough and considered the definitive basis for diagnosis.  My lumpectomy showed ILC and LCIS. My mastectomy showed more LCIS (Classic and pleomorphic) and an additional tiny ILC tumor that never showed up on imaging.  

iwannaseeyoubebrave

Thanks for the reply.  Yes, initial biopsy was a needle biopsy.  They took multiple samples.  I have read that ILC Is a little trickier. I meet with the onco next Tuesday to review the last report so now I wait.  Curious though, I see you had a lumpectomy and then mastectomy. If you don't mind me asking,  why? Did they not get it all?  My margins were 2mm clear on all sides except posterior.  He was only able to get 1mm since there was no more tissue to remove without digging into the muscle.  I hope the onco will be ok with that

lekker

My margins with the lumpectomy were fine. I told my breast surgeon from the beginning that I wanted a BMX but she thought I was an excellent candidate for lumpectomy. Since I have no major risk factors for anesthesia, I figured I could do the LX and SNB to get the cancer out and then have time to decide on rads or MX (understanding that rads are still necessary after MX sometimes). The survival stats are the same either way, but the BMX was the right decision for me.  Mammo never showed my palpable lump and I had already had two surgical biopsies on my "good" breast (at 17 and 29) so I didn't think I would handle decades of screening well.  Finally, with my personal history of colon cancer at age 30 (even though we haven't been able to find a genetic cause yet), I was considered higher than average risk which is why I also went on to have a prophylactic hyst/ooph.  Some people might feel I was way too aggressive, but I did what I thought was best at the time. It's all any of us can do.

iwannaseeyoubebrave

Thanks for sharing.  You are a brave one.  I feel ok with the decision I made for myself based on the information that I understood at the time. Now that it's ILC I understand that it can be trickier to detect.  I'll wait and see what the onco says next week.  I worry of more ILC lurking in there that wasn't detected. 

lekker

Brave - you'll have radiation, right?  The reason they have you do that after a lumpectomy is that it's fairly common to have undetected "residual disease" with any kind of breast cancer.  Rads should zap any lurking cells and that's why LX followed by rads is considered equal to (and in one study better than) MX. Is your screen name from the Sara Bareilles song?  I love that one!  

iwannaseeyoubebrave

Yes I will have rads. I worry more about my other breast now.  I guess that's part of the game.  And yes,  that is from Sara Bareilles. My daughter did a cover of it for me and now that's that motto in our family for everything.  It works!

NATSGSG

hello ladies :

Hope this message finds everyone well and recovering....just stopping by to share this link below that contains 508 scientific articles of Invasive Pleomorphic Lobular Carcinoma that I hope will be informative and of use to you. May need to sift through the titles to find the ones that are pertinent.

http://www.ncbi.nlm.nih.gov/pmc/?term=Invasive+Pleomorphic+Lobular+Carcinoma

In the meantime, if you are interested to finding out if immunotherapy (current hot cancer treatment topic) are being used to this disease, please consider visiting and/or writing to the Society for Immunotherapy of Cancer (SITC) to check on any new developments, or request to be on their mailing list to keep you updated of new updates? 

http://www.sitcancer.org/sitc-meetings/presentations?utm_source=Email&utm_medium=April%20IM&utm_campaign=IM%20PL%20edu%20Opps 

P.S.

Also, below is a VIDEO link discussing the use of immunotherapy in various cancer treatment. Fascinating to watch, good to know

http://videocast.nih.gov/summary.asp?Live=15875&bhcp=1 

HopefulJenn

Nat - thanks very much for the link to the list of articles. It's given me hours of reading! 

My initial dx from core biopsy was also IDC and then my path report after LX said IPLC. I'm only 4 weeks out from LX and now I'm worried about my other breast. I haven't had a meeting with an onc yet (yet more waiting for phone calls!) but I'm going to try to get them to give me a breast MRI and bone scan. My tumor was quite small (5mm) and node -ve but I'm very worried about some things I'm reading about ILC being "sneaky". Anyone have any words of wisdom? Any other tests I should press for or expect? I'm 35 so I really don't know what they may recommend for further treatment, other than rads for sure. 

The waiting, uncertainty and emotional side of things have definitely been the hardest. But, like my counselor said, I'm taking it one day, sometimes one hour at a time.

Hugs and good vibes to all

614

Good luck everyone.  Thank you for the links. 

I was diagnosed with Pleomorphic Invasive Lobular Carcinoma, Pleomorphic LCIS, and Tubular Carcinoma in June 2014 at age 49.  The Pleomorphic Invasive Lobular Carcinoma and the Pleomorphic LCIS grew in a lump that was previously biopsied and was benign when it was originally biopsied years ago.  I am very lucky.  I believe that the only reason that the Lobular Carcinoma was diagnosed is because the original lump changed;  As you know, Lobular carcinoma is "sneaky" and is extremely difficult to detect. 

I had a second lump that was also biopsied years ago and the diagnosis was fibroadenomatous hyperplasia.  When the original malignancy was detected in June 2014, another biopsy was done on the second lump just in case since nothing was seen on the mammogram or sonogram.  The lump was palpable.  It came back as being benign again but the name changed to flat epithelial atypia. 

I was concerned about the change in diagnosis on the benign lump. I had a lumpectomy on the malignant lump with the IPLC and LCIS, and I also had a lumpectomy on the second benign lump.  The final pathology report of the second lump showed that I had Pleomorphic LCIS with Ductal involvement all over the lump and I also had Tubular Carcinoma.

I was diagnosed early so luckily, I was Stage 1.  I had a breast reduction and a breast lift so that my breasts would match because they had to remove so much tissue in my left breast (12 cm) from the double lumpectomies.  My insurance company was kind enough (lol) to deny coverage stating that I had cosmetic surgery!  After a year long fight, my insurance company has finally paid for the surgery. After the lumpectomies, I had radiation, and I am taking Arimidex/Anastrazole.  My oncotype score was low so I did not need chemotherapy.  I had a bilateral salpyngial oophorectomy to put me into menopause so that I could take the Arimidex/Anastrazole.  I was not a candidate for Tamoxiphen because I am a poor metabolizer of Tamoxiohen.

My concern is that since Invasive Lobular Carcinoma and LCIS is extremely difficult to detect and since it is "sneaky", that it may be present in my breast(s) and that it will not be detected in the mammogram, sonogram, MRI, or in a biopsy.  Since this has already happened to me, I am worried.  I was fine all year.  I only started to worry when I had my 6 month diagnostic tests.  Now, I can't stop worrying.

My mammo and sono were clear but the MRI detected 2 suspicious areas. (May 2015) One area was biopsied and it showed 7 benign findings.  The other area couldn't be biopsied so I am waiting and watching for 6 months.  I am fine with that because this area is probably scar tissue.   I have a giant 8cm hematoma from by MRI guided biopsy in May that is still hard.  My doctors are not concerned about the hematoma because they say that it could take 6 months to dissipate.  They also say that a hematoma can be differentiated from other breast issues on diagnostic tests.

I also have very dense breasts with fibrocystic disease.  My radiologist stated that I have lumps everywhere but that they are due to fibrocystic changes. 

How likely is it that if the Lobular Carcinoma returns that it will be diagnosed and not missed?  How do I stop worrying?

 

Moderators

614-

We just wanted to take a moment to welcome you to our community here at BCO! We hope you find the support and information you're looking for!

It sounds like you've got a great medical team that is dedicated to remaining vigilant about monitoring your health, and that is so, so important! You'll probably always worry, after what you've been through, but hopefully after a few clean follow-ups, you are able to relax a little.

We're so glad to see you here, welcome again!

The Mods

614

Dear Mods:

Thank you.  I love all of my doctors.  I trust them.  I am very fortunate.  They have all saved my life. 

However, I have been through 6 lumpectomies, 6 biopsies, and 1 needle aspiration.  Currently, I am waiting and watching (for 6 months) regarding a linear non-mass enhancement.  I have been told that I have "busy breasts" in addition to the pleomorphic invasive lobular carcinoma, pleomorphic LCIS, the infiltrating tubular cardinoma, and the MANY, MANY different kinds of benign lumps. 

I have completed my treatment for my breast cancer (lumpectomy, radiation, and oophorectomy, plus I am currently taking Arimidex/Anastrazole) so I am also fortunate.

I have a giant 8 cm hematoma now.  I am hoping that this hematoma will not obscure my next mammogram, sonogram, and MRI tests which are scheduled for November 2015.

I am so glad that I found this forum.  It is very helpful. 

Thanks for your quick response.

Sincerely,

614

Optimist52

I was diagnosed with ILC in June this year. Have had a mastectomy and axillary node removal, now taking Letrozole. My pathology report said there were areas of pleomorphic features. This has scared me and my oncologist was rather negative about it. My surgeon was more optimistic so I think I will listen to her! Apparently this is an extremely rare form of breast cancer. I had another lobular breast cancer nearly 12 years ago in the same breast. I am planning to have the right breast removed and reconstruction early next year however am uncertain about whether private insurance will cover that.

614

Your insurance company probably will cover the surgery because that would be cheaper for the insurance company then paying out every 6 months for diagnostic mammo's, sono's, and MRI's - or some combination of tests every 6 months.   Check into it and I believe that you will be pleasantly surprised. 

Good luck!

sarajaneevans

614: ((hugs)) I don't think you/we will stop worrying, nature of the beast. Having that security and total trust in your team of doctors is a great help. Try to keep that in mind at all times. That's what I do. My team came very highly recommended to me and when the day is done I put my trust in them and allow them to do their job. But like sneaky LC the fear is still there just deeply hidden. ((hugs))

123abc1611

Hi all! Here is what I'm dealing with. Any comments would be appreciated.

Below is part of what my pathology report from biopsy says. I am scheduled for MRI of breast tomorrow and consult with surgeon. ER+\PR+. My HER2 came back unequivocal so I'm waiting for FISH test, I am a 19 year survivor of breast cancer. This is a new primary and not recurrence. Mass is approx, 1.75 cm and in 2 o'clock position in left breast at exact same position as earlier tumor which was removed via lumpectomy.

"Microscopic description is invasive carcinoma is present in all three tissue cores with a maximum linear extent of 1.7 cm. The tumor exhibits no lubule formation, moderate nuclear atypia and a low mitolic rate, for a combined Nottingham grade II. No in-situ carcinoma or lymphatic vascular space invasion is identified. Much of the tumor exhibits plasmacytoid morphology, suggestive of pleomorphic lobular carcinoma. An immunohistochemical stain for E-cadherin is negative, supporting this classification.

ER (clone 6F11): Positive (30% weak, with focal "hot spot" that is 80%, intermediate)

PR (clone 16); positive (95% strong)

KI-67 (clone MIB-1): approximately 10%"

Thanks in advance. I have almost made my mind up to go with a double mastectomy if this will increase my odds of longer survival. I'm 63 and really don't need those boobs for anything at this point in my life anyhow. Just because this type of breast cancer is rare ... does that make is harder to treat?

jadisn

I have pleomorphic and the same scores as you. How are you doing now & what treatments did you have?

Almer

I've noticed that several of you have had radiation. What is the worst thing you experienced with radiation

Mandycat

hello. I'm new to this. I'm having a lot of trouble making decisions about what to do. I was miss diagnosed twice but believe my most recent diagnosis is correct. 3 different pathologists looked at it. My diagnosis is now Pleomorphic LCIS with micro invasion. My plan keeps changing as my diagnosis changes. The radiation oncologist marked me for radiation 16 treatments because of the invasive component. I have classic LCIS at the margins but the pleomorphic area and invasion are removed. Tumor was close to the chest wall. Had lumpectomy in May that is when the misdiagnosis started. I first thought I had DCIS and no invasion. Then I thought it was all LCIS then found out the most recent diagnosis.

The invasion was very small 1 mm. I was all set to go to radiation but wanted to get set up to follow with someone at the institution that had given me the correct diagnosis. My new oncologist doesn't think I need radiation because it was caught early and is all removed. She does think I'm high risk for developing another cancer. She said she would write a long letter to the radiation oncologist but declined to call and talk to him. She told me to call which I did. He sounded very concerned and said radiation would be standard of care. Now I don't know what to do. My radiation is cancelled and I'm taking anastrozole but terrified I should be having radiation. She says I don't need it, but he says I do. What I read says it should be treated like high grade DCIS.

Moderators

Hi Mandycat, and welcome to Breastcancer.org,

We're sorry you have to be here, but we're really glad you found us. You're sure to get great support here and we look forward to hearing more from you soon. Stop by often, ask lots of questions, and fully engage -- we're all here for you!

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