ILC, ER+, PR-, HER-

As my data indicates, I had the same combination. Why are you asking? I don't think it matters whether ER or PR or both are positive, as long as one of them is.

I am also ER+(94%) and PR-(-2%).  I have never been told my ILC was the pleomorphic type but  my onc did say at diagnosis that it was not a "classical lobular"  and would be considered slightly more aggressive than the typical ER+/PR+ lobular. My tumor was a grade one however with well differentiated cells.  I think most data shows the ER to be of greater significance than the PR when it comes to treatment choices.

I did find a recent study that discusses the impact of ER/PR status on mortality rates and also took into account other factors such as age at diagnosis, race, tumor size, tumor stage, nodal count etc.  Basically the study concluded that when compared to ER+/PR+ breast cancer, ER-/PR- small size low grade tumors had the greatest increase in mortality risk.  After that, ER-/PR+ cancers and ER+/PR- cancers had higher mortality risk than ER+/PR+ but less than ER-/PR-  irregardless of the other study factors examined.

Here is a link to the study:  (you may need to sign up with MedScape to view all the article)

http://www.medscape.com/viewarticle/553850

Here is an excerpt from the results and conclusions section:

Results: Compared to ER+/PR+ cases, elevations in risk of mortality were observed across all subcategories of age at diagnosis, ranging from 1.2- to 1.5-fold differences for ER+/PR- cases, 1.5- to 2.1-fold differences for ER-/PR+ cases, and 2.1- to 2.6-fold differences for ER-/PR- cases. Greater differences were observed in analyses stratified by grade; among women with low-grade lesions, ER-/PR- patients had a 2.6-fold (95% confidence interval [CI] 1.7 to 3.9) to 3.1-fold (95% CI 2.8 to 3.4) increased risk of mortality compared to ER+/PR+ patients, but among women with high-grade lesions, they had a 2.1-fold (95% CI 1.9 to 2.2) to 2.3-fold (95% CI 1.8 to 2.8) increased risk.
Conclusion: Compared to women with ER+/PR+ tumors, women with ER+/PR-, ER-/PR+, or ER-/PR- tumors experienced higher risks of mortality, which were largely independent of the various demographic and clinical tumor characteristics assessed in this study. The higher relative mortality risks identified among ER-/PR- patients with small or low-grade tumors raise the question of whether there may be a beneficial role for adjuvant chemotherapy in this population.

Very interesting!  Based on what I read from here,  PILC seems not to be "that" aggressive,  as it could be Grade 1, or Oncotype could be so low......

I guess 'cause there are not any physicians really study P type ILC,  which gives so much confusion. 

Hi, BadPatient, thanks for popping in to share, it helps to hear from those who are so far out from treatment and doing well.  How that you are finished with Femara, I bet that feels good, too.

hlya,  In terms of Grade, I think all pleomorphic ILCs are Grade 2 or 3, but I think low oncotype scores are possible.   You are right, pleomorphic lobular isn't studied very much.

Nancy,  In my research I've read that ER+ PR- breast cancer has a worse prognosis, as the study posted by LindaLou says.  I've read that this worse prognosis is for the first 4 years or so, then it is about the same as ER+PR+.  Also, it seems that several studies now have shown that ER+PR- responds better to AIs than Tamox.  With your good prognostic features, you should do well, I agree with your oncologist.

Hi Gitane,

Thanks for your reply. I am wanting to give support to all of you who are going through treatment and to give perspective from a long term (can I say that yet?!) survivor. Can't say it was easy but I sure have met some wonderful people along the way and have made gazillions of gallons of lemonade from groves of lemons!

 Wanted to share that I was on Tamoxifen for 2.5 years and then Femara. Now that I am off all meds I realize what a burden it placed on my body. Well worth the extra insurance but I gotta tell you, I had no idea that it took away so much energy, mindfulness, and HAIR. Yes, I have a new head of hair to boot. Maybe it was a good thing that I didn't read about all of the SE's. 

Nancy, it sounds like you have a wise oncologist. I, too, have always wondered about that PR- in my report. So far, doesn't seem to have made a hay of difference for me. 

Happy Holidays to All! 

Oh, yes.  Hanging in there is right!  My 5 years is this summer, so this time next year I hope to be "healthy" , too.  Like that smiley face!!!

Thanks for the informative and positive posts.  I am also ER+ (only 39%), PR- and HER2-.  Still waiting for the mets workup results and nodes involvement.  Merry Christmas to you all.

Although my path didn't indicate pleomorphic, I am also er+ (90%)pr- (5%) her2-.(+1)  My oncotype dx put my pr at a slightly higher percentage.  No one seems to have addressed or even noticed the pr status, but am assured the er + is the "good" part.

Happy HEALTHY Holiday wishes to all!

MM 

Hi TNgolfer,  My diagnosis was similar to yours except there were tumor cells in my nodes.  When I was deciding on having the other breast removed, I was told that for lobular the risk is about 2% per year of getting bc in the other breast; that is a cumulative risk of about 20-30%.  That is what I was told, but please check this out with your oncologist.  

Perhaps talking to a plastic surgeon (or 2 or 3) before making your choices will help you understand what each reconstruction choice offers you.  My plastic surgeon participated in my mastectomies and I think that may have given me a better result than if it had been done later.

Perhaps talking to the oncologist before surgery would help, too.  At least you would have more information. Are you going to have them do an OncotypeDX test on tumor tissue?  I decided to do chemo before surgery because I wanted to know if I responded to the chemo.  ( I did.)  I wish I had had more tumor tissue saved before the chemo. Having the surgery first would have been better for that.  My oncologist wanted to see my chemo response before deciding about radiation.  I ended up not having any.  However, unlike you, my nodes did have some cancer cells.

Gitane,

Here's another question.  I'm confused about the order of things.  Obviously, the surgery comes first....logical progression from the biopsy to the mastectomy.  Should I see the Oncologist before the mastectomy?  Will want to have the OncDx done; were the breast tissue samples "saved" from the biopsies?  Or do they do the test from information in the pathology reports? 

Also, I have read a lot about side effects of Tamoxifan.  Am I just having a bad day?  I am suddenly questioning everything and want to run and hide under the sheets!

My situation is different than yours but I wanted to reply regarding the reconstruction. I had DCIS in my left breast. After a lumpectomy and the need for a re-excision to get wider margins, I decided to go for the bilateral mastectomy and immediate reconstruction.  I also wanted to avoid the 5 years of  medication and radiation. Of course, I was told by many that I was taking things too far but I had to go with my gut and do it. So my gut was right, they found a 3 mm ILC in the RIGHT breast when they did the pathology and it was too small to have shown up on the mammograms or MRI that I had prior to surgery. Now I am faced with whether to have the lymph node dissection. My chance of it having spread to them is less than 5% according to my oncologist. There is  a chance that a sentinel node can still be performed but very uncertain.

Getting back to your situation, I had the surgery done on a Thursday. 8 1/2 hours long. Went home on Monday and was out and about by Friday. I had all drains out within 4 days of leaving the hospital. I am not restricted in any way now and feel great. I am about 8 weeks out from the surgery and yesterday the plastic surgeon lifted all restrictions. I had no issues with infections and all went smoothly. I wouldn't go through major surgery again for a flat belly but I have to say it is a darn nice side effect!!  At almost 59 years old  I have perky boobs and a flat belly.

Now if only I could decide what to do about the node issues. I am scared to death of the full dissection if it is my only option. I need full use of my arm for my work and can't afford problems.

Good luck with your decision. If I can offer you any advice, it is go with what your gut tells you is right for you.

I think most surveillance involves mammogram then 6 months later MRI, so you are being screened every 6 months.  I don't think a PET scan would be used as a screening mode.  I don't know how effective it is compared to MRI or mammo.  Sorry I'm not much help there.  

I had bilateral mastectomies (prophy on one side) because I didn't trust screening to catch anything.  I'm a worrier!  Others are not and think that's overkill.  Although no cancer was found on the prophy side, there was lots going on there that could have lead to cancer.  I think I made the right decision. 

AnacortesGirl & Gitane:  Thanks for your posts.  Before I had the MRI I took the valium prescribed by my breast surgeon.  I was in a good mood and didn't think I was going to have a hard time (though I am claustrophobic in elevators!)  I was on the table and all ready to go and within seconds had to push the panic button.  The nurses were great.  One nurse stayed with me and held my hands, but again within less than a minute, I couldn't breathe and started shaking.  It was horrible (for me).  I am generally not afraid of anything and have a high tolerance for pain--but apparently this is my Achiles heel!  The surgeon was great and called to say that she heard I had a bad time and checked into seeing if there was any facility that would sedate me for the MRI.  No luck.  No hospital around was willing to do it.  She told me not to worry that she has to treat a lot of people who cannot have an MRI for a lot of reasons.  I checked further and there is a company that makes a Naviscan machine that is not enclosed -- did the research and if I have to travel to one that is available I will.  Also thought of hypnosis for the claustrophobia.  So that is worrisome for me because I would like to know (and I'm sure my doctor's would as well) as much information about the other breast as possible.

I think you gave some good advice.  I am scheduled to see the plastic surgeon on the 7th and then meet again with the breast surgeon on the 12th.  Because I can't get comfortable with making a decision about the other breast, I think I will ask to see the oncologist before making that decision.  I know there are no guarantees and believe that if the cancer appeared in one breast (even if we knew for certain it wasn't in the other breast), we know there is a possiibility it will appear in the other.  I would like to feel that I could trust whatever screenings are out there to catch it if it appeared at an early stage.  I don't want to remove a non-cancerous breast if I don't have to. 

When I asked the breast surgeon if we did the bi-lateral mastectomy if they would take lymph nodes on the other side and she said no.  That is appealing because I don't want to go through another node dissection. 

AnacortesGirl - you are right, the cancer isn't growing that fast.  As fearful as we all are (especially in the very beginning) to get it out, get it all out NOW, I should be able to take a little time to make this decision.  So much of this is trust.  When I asked my breast surgeon after she recommended the mastectomy (2 excisions and still no clean margins) if we should do a bi-lateral, she told me that was clearly going to be my decision.  She said they would watch me closely and I do have confidence and trust in her.  I guess I am questioning the tools for screening. 

Thank you so much again ladies.  These are great discussions with people who have been there and truly understand.  Maybe I should change my name from TN golfer to MRI"chick"en!