ALL Responses will help

Kaso

I reflected on Robert Frost's poem The Road Not Taken "Two roads diverged in a wood and I - I took the one less traveled by, and that has made all the difference".... as I struggled with sleep at 4 o'clock this morning. I realized I am embracing on my own journey right now as I travel many unknown roads. I have already taken a road I had never traveled by on June 14th. This road was labeled Spiculated Mass. I immersed myself in reading with the hope of learning all I could so that my journey down the Spiculated Mass Road would be easily traveled. I came to a quick road-block or should I say dead-end, when pathology reports revealed that there would be a detour onto a road called Atypical Ductal Hyperplasia, or ADH for short. I did not see the pun here as a special ed teacher and once again I found myself immersed in learning all I could of this new pathway. I traveled on this road a bit further than the last, for 11 days to be exact. Unfortunately my journey on this road came to a sudden halt after I entered the office of a Breast Surgeon at Smilow. The Resident Doctor's initial news "it's not cancer" was altered within 5 minutes when Dr. Horowitz entered the room to say my journey would be changing once again. This time I was not able to clearly decipher the name of the next road I was being diverted onto. This path was termed Infiltrating Mammary Carcinoma. Quite abruptly, due to an error in pathology at Milford Hospital, my journey was to take a drastic turn. This new path takes an immediate fork onto Surgery Lane on Wednesday the 5th. This road will then determine yet another destination in my new journey. I know I have the unbinding, loving support of family and friends as I embrace my own "Roads Not Taken". As my twin has said, I must remember that "I am braver than I think. Stronger than I seem. And more loved than I know." I also know as my 6 children and 3 daughter-in-laws have told me, that I will not be alone in this journey..

PS I got a call on my receptors from biopsy today. ER+, PR slightly+, HER negative and awaiting the fish. Can someone exlain who would order an octotype score? Can someone explain if diagnosis changes after pathology following lumpectomy?

Because of the grave mistake with a lab not analyzing my biopsy accurately I am entering this with a great deal of doubt and little trust.

Does anyone have the same pathology diagnosis as myself?- "Infiltrating Mammary Carcinoma with tubular features....well differentiated (total score 4, NUC 2, TUB 1, M.F. 1; Size 0.18CM); atypical ductal hyperlasia 2MM; myoepithelial marker p63 shows complete absence of myoepithelial

Much appreciation for any and all responses.

EastcoastTS

Kaso:

You'll receive such good advice here. You're in the right place for advice and support.

I'm new to this, too, and not the same diagnosis, but I can say that my MO ordered Oncotype AFTER surgery. I think this is typical.

Yes, diagnosis can change with your final pathology because up until then, your path is based on the biopsy sample. My diagnosis did not change, but I was not staged until final path and of course lymph node involvement (or not) is then verified.

I would suggest that you get a second opinion of your biopsy sample. I did this at MD Anderson. They'll actually request from your original center/hospital. They make it easy. Since you're having some doubts, which I don't blame you for having.

Please know that you are not alone in this. Unfortunately, there are a lot of us out here. Ask lots of questions and try to take a deep breath now and then. Hugs to you.

kira1234

Oncotype test is usually ordered ofter surgery. My pathology changed slightly plus additional tests were done.no I don't have your diagnosis.

ChiSandy

“Infiltrating mammary cancer" is the same thing as “invasive breast cancer." Did Dr. Horowitz mention whether it was ductal or lobular? Invasive ductal carcinoma (IDC for short) is by far the most common form of breast cancer.

But you might have hit the jackpot: “tubular" is one of the least aggressive carcinomas out there. With a Nottingham score of only 4, well-differentiated, low mitotic rate, your tumor is Grade 1 (very slow-growing, sometimes even called “indolent"). ER+ and even “slightly" PR* is good, as is HER2-. They did a FISH test because they wanted something more definitive than the standard immunohistochemistry (IHC) test would report. 0.18 cm is only 1.8mm—extremely tiny, with an additional 2mm of ADH (which is not cancer).

You found it early. It's tiny. It's not aggressive. And if your margins are clear and your lymph nodes negative, and the final path result after surgery agrees with the path report on biopsy (and the tumor is <1cm or 10mm), your doctor would probably not even bother ordering OncotypeDX testing, because chemo would almost certainly not be indicated (not necessary, not effective). OncotypeDX is for “gray areas" (any of the following: tumor>1cm, 1-3 positive nodes, grade 2 or 3).

We who've taken this road and know its curves, bumps and potholes will guide you along it.

ready2bedone

Hi! My biopsy read "invasive mammary carcinoma" which is the same thing as yours. The oncologist told me they treat it the same as ductal. I was 100% ER+, 40% PR+, and HER2-. My tumor was a tiny bit over 1cm but also had an intramammary node involved right next to it, but my sentinel nodes were all clear. I chose BMX though I could have had a lumpectomy (but that would have meant radiation). My breast surgeon ordered the Oncotype and it came back a 10, so I lucked out with just surgery and an estrogen blocker. No chemo, no radiation. I hope you will have the same luck.

My diagnosis didn't change after surgery though they did find some DCIS as well. My stage is 2 only as a technicality because there isn't any other way to note the involved node even though it really isn't metastasis since it was within the breast tissue and right next to my lovely little spiculated buddy.

Kaso

Your response is amazing. I was told mammary is both lobule and ductile & yes the biopsy pathology (run the second time at Yale) showed tubular. I am busy reading of ER+ being a high cause for chemo and invasive cancers which I am told my infiltrating diagnosis on biopsy is. I am so scared not just for my first ever surgery but for pathology results when the entire tumor and sentinal nodes are removed.

Kaso

Your diagnosis is so much like my biopsy diagnosis, and although I did not get receptor percentages my ER is high and PR low positive. The NEU of the HER is -, but the fish is not done and won't be done til after lumpectomy. I told the surgeon to do a mastecotomy and she said she recommends preserving the breast as much as possible with a partial mastectomy. She said the mastectomy won't stop the cancer, and I would not need radiation if I have the mastectomy. I pray my sentinal nodes are clear. I hope there is enough to complete the oncotype because everything I read about high estrogen receptors leans to chemo. My stage is 1 currently, but who knows how this will change after surgery.

ChiSandy

I have high estrogen (75%) and progesterone (97%) receptors and did NOT need chemo. In fact, all other things being equal*, the higher the % of estrogen receptors, the lower the OncotypeDX score is likely to be and the less likely chemo would be recommended.

*size, grade, mitotic rate, node involvement, HER2 status (The full acroynm for the protein—human epidermal growth factor-- is “HER2 neu”; the IHC and FISH tests are to determine the degree to which the tumor cells receptors “express” that protein).

Kaso

How did you get your knowledge ChiSandy? That- knoweldge- is what I so desperately seek. Smilow Cancer Hospital prepared a binder- it is thorough, but not enough. I was not given % and did not know to ask.I was told (ER positive, PR low positive HER/NEU negative (0). Fish not completed.They "expect fish to be negative". They said they were "giving me excellent news". Because my diagnosis suddenly changed from ADH to infiltrating mammary with tubular features and well differentiated (NUC highest at 2)but with complete absence of myopithelial I remaini scared.

Kaso

Ready- why did you go with mastectomy and not lumpectomy? I can't order quickly from a menu but when this diagnosis hit me I said mastectomy and the surgeon quickly responded- "I would not recommend that. I would preserve your breast." (mind you I am barely a full

Kaso

Chi Sandy sorry for so many different responses- I was told by the resident at the appointment with the BS it was ductal, but later on the phone that mammary is both ductal and lobular. The tiny size is not from pathology after lumpectomy but from pathology after biopsy. I was told by the radioloist who performed the biopsy that the size was 8mm spiculated mass.

Many thanks again. You are doing a great job easing my mind. I am reading on other boards in this site the horror of a strong ER+ with connection to reoccurrance.

Kaso

horrow = horror

Kaso

Chi Sandy sorry for so many different responses- I was told by the resident at the appointment with the BS it was ductal, but later on the phone that mammary is both ductal and lobular. The tiny size is not from pathology after lumpectomy but from pathology after biopsy. I was told by the radioloist who performed the biopsy that the size was 8mm spiculated mass.

Many thanks again. You are doing a great job easing my mind. I am reading on other boards in this site the horror of a strong ER+ with connection to reoccurrance.

MinusTwo

I lost something in translation. Scary as BC is, ER positive is such a benefit. There are LOTS of treatments available for ER/PR+. It is much harder for ER/PR negative. If your fish comes back HER2+, you will have even more treatment options.

Stay away from google. The stories are old or just plain incorrect. Check at places like this, or NCI or a major teaching & research hospital like the Mayo Clinic

MexicoHeather

I never did an oncotype. They took all the lymph nodes on the right. The grade did change after the biopsy.

I hate to stick up for a "wrong" reading, but some dysplasia looks so odd that it can take time for a proper analysis. I went for about a month while doctors did reviews, a PET and a stereostatic biopsy. Yes, I was really learning about calcification and even downloaded an app to look at my own radiology films! The good news was that I got to keep the left breast.

I'm sorry we have to meet this way. There are no words for this. Please try to find at least one doctor you can trust.