ILC, ER+, PR-, HER-

Hi TNgolfer

My situation sounds similiar to yours.  I too was diagnosed with PILC Nov 30.Originally I had PLCIS and had excisional trying to get clear margins.  They did not get clear margins, but they did get PILC within the PLCIS. So now I have to have mastectomy and I struggled with whether to have unilateral or bilateral (still struggling), but did decide to have bilateral. My reasons, I do already have something that has shown up on other breast that is to be followed up with in March and they tend to believe lobular type cancers will be found in both breast and also how hard the lobular cancers are to detect. I would have prefered doing immediate reconstruction, but that is seeming impossible to schedule two surgeons quickly.  I will have SNB done at the time of BMX, so at this point I am not sure if there is node involvement. I have finally received my date for surgery which is January 12 and feel just sick about it.

I am curious why you have been told that you will likely have chemo?  I have been told that unless there is node involvement, I will likely not have chemo.  I would like to have the oncotype DX test done, but because I am from Canada, I understand that only if I go into the trial can I have it done. I have seen oncologist already too, who will see me again after surgery and go from there.

Take Care

Cathy

Cathy,  Thanks for sharing.  The breast surgeon I see is in a "breast center".  On that staff are oncologists and plastic surgeons.  I believe because of those relationships (doctors that confer with each other on a regular basis) they may know or assume how the other physicians will treat certain cases.  My breast surgeon thought because I was otherwise healthy they would want to do IV chemo treatments.  I believe it is a kind of assurance to prevent any other cancers (known or unknown) of spreading...  I am scared of chemo and will have those conversations with the oncologist after the surgery.  As for opting for reconstruction, I have been given the opportunity of having immediate reconstruction at the time of the mastectomy(ies) as both surgeons would coordinate their schedules to accommodate that (that is their normal procedure).  It is me that can't decide about reconstruction.  I know it is an agonizing decision.  One minute I am for it and the next, opposed. 

As for the BMx, I too am of the understanding that lobular carcinomas may affect both breasts and that is worrisome, especially because they are hard to detect.  I also wonder how those who have had a single Mx feel.  I guess I will get a lot of questions answered from the two remaining doctor's appointments.

 I will pray for you, Cathy.  I truly believe whatever decision you make will be the right one for you.  After all, while we may be in this storm together, we can choose different paths out.  I plan on asking my Oncologist a lot of questions about chemo; the first being, what if I decide not to have it?

Re the OncDx.  I don't know, but I think it is just a predictor and sometimes I just wonder about all the people who never had the advantage of that test or MRI's, scans, genetic testing, etc, etc.  If we didn't have any of those tests what would we do?  I have come to realize this is not an exact science.  I don't think any one person or any one test can give us concrete answers.  They don't know how or when a cancer spreads or awakes from its current state. 

Sorry for rambling...but I also don't know how I will feel if I awake after surgery with one breast or none.  How can we know?  Let's keep our eye on the goal -- to be cancer free.

I will be thinking about you and praying for you.  

i was diagnosed with PILC & PLCIS, grade 2, T3 with node positives in Dec 09, had mastectomy with full node clearance. I had no choice about any of this. It had spread so far that my whole breast was full of positive lumps and in situ as well as my nodes so they all came out too!  I am 36 and waiting to see onco next week for final results. Been told i will have FEC chemo for 24 weeks and then radio. I am hoping the onco will make things a bit clearer next week but i am not holding out for good news!

I wish you all the best in your treatments x x x  

I've never read a message board before tonight, and of course have never replied, but I think my recent experience might help you.  It's only been 3 weeks since my dx of ILC.  Since then I've had a bilateral mast (BMX?) with reconstruction.  I was in the hospital for 2 days and feeling pretty good 5 days post-surgery.  Then some more pain when I had another "fill" of my expanders.  But that pain only lasted about a day.  Went to physical therapy today - pretty good range of motion, etc.  I felt the BMX was necessary for ILC because of increased chance for ILC in the contralateral breast and the difficulty in detection.  It really was a no-brainer for me.  And in talking with lots of docs and women, I heard over and over again that nobody had ever heard of someone regretting a bilateral, but there were concerns/regrets about having a unilateral and wishing they had done a bi.  And the surgery outcome isn't as bad as I thought - you still have all (most) of your skin and the fill they do during the initial surgery gives you breasts from the get go.  So the surgery for me was a lot easier to handle when I didn't look so abnormal afterwards.  Trust me I'm not vain, but I didn't realize until now how looking more scarred or abnormal would affect my whole outlook.  Not sure yet about post-surgery therapies; we're waiting for oncotype results and tumor board recommendations.  Just want you to know the bi and recon isn't that bad, and I'm sure I can sleep a lot better without worrying about when the cancer would appear in my other breast.  Best to you.

Hi smco,  First of all welcome.  It is good of you to share your experiences.  I always learn something when I read about others' experiences.  I agree, getting the bilat. really takes away a lot of anxiety for me.  I, too, got the expander/implant reconstruction and have no problems with that either.  As to your oncotype question,  my understanding is that Oncotype is for ER+ only.  It has been used for node positive, too, now.  I think oncologists tend to look at the size of the tumor and number of nodes to help decide of getting the oncotype score would influence the treatment decision.  I think it's just good information to have.  I wanted to know my score because I have a rare type of BC, and I liked getting accurate ER and PR levels.  I would have had chemo anyway because of the size of my tumor, so it didn't affect that decision.  All the best to you, too.