Multifocal invasive cancer and DCIS

4My3kids

I am looking for feedback from anyone who has had or understands the nature of Multifocal IDC.   I am IDC, 7mm total, Grade 1, Negative Lymph Nodes and Intermediate DCIS.  I had a double mastectomy 2 weeks ago with immediate reconstruction (expanders).   I have three medical oncology appointments scheduled in August and I am trying to get patient advice before I hear what is presented to me.  My surgeon and my second surgical opinion (he is regarded as an expert in his research) said they felt no treatment may be necessary...but I read otherwise and want to be aggressive since this diagnosis was missed for one year.  Thank you in advance for reading.

ScienceGirl

I had multifocal disease, mixed ductal and lobular, grade 2, also node negative.  Your tumor is grade 1 - that's slow growing, chemo works by killing fast growing cells.  Your tumor was very small <1cm.  Have they mentioned the OncotypeDX test?  Mine came back 25 which is intermediate, so I did chemo.  I suspect by the grade and size of your tumor that they are leaning toward no chemo, but oncotype would give you genetic data on your tumor.  I asked several doctors about the multifocal component of my diagnosis and they all were more concerned about the other factors i.e. oncotype, nodes, size, er/pr status, margins ....

Good Luck to you, it's hard to not throw every treatment at your disease, but chemo isn't easy and if it's not going to benefit you, spare yourself.

Kim

4My3kids

Kim,

Thank you for your reply.  I also have found the doctors are less concerned that the tumor is multifocal.  I just have come across few who have that diagnosis (or perhaps they do not know or do not mention).  You are correct...it is hard to not want to grab every possible treatment to prevent this disease from coming back.   As for the Oncotype...I want to do it but have not seen the medical oncologist yet to understand if "I have enough tumor" to sample.  My surgeon...and my second surgical opinion thought no.  They were not certain because this was pre-surgery...so I hope I can proceed with it.  That would help in weighing out my options.

 Again, thank you for your post...I appreciate it!  I wish you all the best health.

lmk

I was multifocal - Two IDC's - 1.5cm & 9mm respectively plus intermediate DCIS - 1.7cm; the 9mm was found on day of surgery; the only concern that anyone seemed to have was whether clean margins could be obtained through the lumpectomy; the combined treatment I had was based on the characteristics of the 1.5cm IDC.

LouLou40

Hi,

I also had multifocal 2.1cm and 1.5cm IDC with a small component of DCIS (less than 10%). 

The staging was done on the largest tumour and treatment based on the grade, node involvement and Her being positve.

My Onc wasn't fussed about it being multifocal, he said it's not unusal and dosen't mean it's more aggresive. 

MRDRN

I was told I had a combination lobular and ductal and was amazed they told me this with my first less than 7mm lesion!  I was offered DELAYED Diep with expanders,  but choose Immediate DIEP, which meant NO EXPANDERS, and an all in one surgery. I switched hospitals because they could "fit me in" and had the PS and BS who worked together to do this all in one surgery.  Yes, I ended up with several revisions as I was a DD and still am, and did get an infection.  I did not need to do the "fills" and all that before the delayed DIEP SURGERY.  

I did not have chemo, nor hormonals...as I had a recent TAH.  I do not recommend these surgeries back to back unless you had too .  No more screening for me, except through breast exam! HER was not done. When I consulted with a second surgeon who I knew personally she did a PET just to be on the safe side which was normal. I am also following up in Aug for my one year checkup.  If you have any questions, specifically, ask away!  I was told last year that hormonals would only give me a 2% risk reduction of recurrance, and in my case, and having a recent
surgical menapause it was not worth it. 

mybee333

MRDRN- Interesting that they have you on no hormonals.  I have wondered about that too.  I had a Total Hysterectomy 3 years ago.  You would think that would take care of most of my estrogen but no I have been told I will be on an AI for 5 yrs.  I dread killing more of my estrogen.  It was so much fun the first time   But I am grade 3.  Perhaps that makes the difference.

mybee333

lmk- We have some similar characteristics.  I had IDC with cancerization of the lobules. Two additional smaller tumors were found and pagets was found in the nipple.  There was also extensive DCIS that didn't seem to be a worry but prevented my getting clean margins until a mastectomy was done.  But they added my tumors together and put me at 2.0 - 2.5, making me Stage 2.  Treatment however is being based on the characteristics of the original 1.4 cm invasive tumor.  Awaiting oncotype score to determine the next step.  My grade 3 is a difference however.  That aggressiveness is a concern for me (and I guess for the treating team too). I agree with the previous posters as far as weighing the options - chemo or no chemo. There are a number of factors that can make it relatively clear.

MRDRN

Hi MyBe33 I had a one year follow up yesterday with the Oncologist and asked again and he stood by his original treatment.  Honestly, I have some pain now and terrible hot flashes still after the Hysterectomy one year ago, that I was glad it was his thought.  He said my multifocal 7mm lesion was removed with the Biopsy (4 punches) and had clear margins.  He also did not feel the need to order a PET yesterday or tumor markers. He thought about HT and clarified that my infertility treatments did not contribute to my BC, like my BRCA gene might have.  I was surprised by that...and he also stuck with the original recommendation to not take estrogen. 

mybee333

MRDRN - You know I was on HRT and then it was stopped abruptly with my breast cancer diagnosis. I was prescibed Effexor and it has completely eliminated the night sweats and hot flashes as well as some serious anxiety issues I would experience when the estrogen was low.  Hoping it helps when I start the AI.

mybee333

In my earlier post - I didn't mean hormone replacement but rather an inhibitor - Tamox. or an AI. My fault , I was unclear.  Certainly your Dr.knows much more than I do.  I am definitely a novice when it comes to BC!

vlnrph

My lesions were IDC & ILC in different quadrants so I had unilateral mastectomy with immediate DIEP reconstruction, then Taxotere/Cytoxan because of the micrometastases in the sentinel node. Will go on tamoxifen later this month.

The surgeons may have given you the impression that chemo may not be needed but I would think your medical oncologists will talk to you about hormonal therapy. Oncotype is not an infallible predictor, it's merely another potential tool which might not help with decision making in every case. 

4My3kids

Thank you everyone for your comments.  My first medical oncologist said no chemo...due to largest multifocal tumor being 2mm.  He said Tamoxifen or possible hysterectomy due to complex cyst history.  He also said tumor is too small to do Oncotype test.  Anyone out there doing chemo for small multifocal cancer???

Annicemd

Hi, I am new to the site. I also have multifocal and have had all the same questions as "4my3kids". Would be so grateful to anyone on site who has info. I had 2 cancers one was 1cm the other 0.8mm but overall early stage as you see from my stats. I did oncoDX on both tumours and results were 1 and 8. The ten year recurrence risks were 4% and 6%. Do I add risks together? I have been advised chemo no use esp as I am also grade 1. My onc is very relaxed but I am worried about distant recurrence as I am not having chemo. I too have young kids. Not sure if I should go for ovarian ablation as well as tamoxifen and there is also a treatment called zoledronic acid which is supposed to lower risks. Has anyone any thoughts or info on these issues??

Many thanks, it is so comforting to have contact with sisters in the same boat!