Panicked and confused

MiCyn

Hi all,

I thought my treatment plan was all in place. I was supposed to start radiation this past Monday. Through core biopsy I was originally dx w Encapsulated Papillary Carcinoma, but told 20 % chance of having invasive component. Because of that, no lymph nodes were checked. After pathology came back w IDC along with the EPC, my MO wanted lymph nodes checked. BS was against this. She argued that there is such slight chance of SLN having micro involvement. After going back & forth over this, decision was made to treat nodes with radiation, so no SNB. I did simulation last week, anxious to get going with treatment. Saturday I get call from RO office saying Rads delayed, due to waiting on Oncotype test results, which they expected on Monday. Yesterday morning my RO called.He said my Onco came in high @ 37. He has me scheduled for Cat scan today of pelvis , abdomen, chest, and an MRI tomorrow of breasts, and asked if i could get to lab for bloodwork soon . I was so shocked, I didn't ask any questions. I understand the high score means chemo most likely, but I'm just confused as to why the CT scans?? Are they just being overly cautious, or checking lymph nodes through these tests, or are they looking for spread ? Makes no sense, all because of high score. Chemo was not mentioned, it was a brief call early in AM. Now that I've had time to think, I feel like maybe they are expecting to find something. I'm glad test is today and tomorrow is MRI, but now more waiting! Errrr, I'm frustrated! Has this ever happened to anyone else?

Sorry so long, just needed to vent a little This place has been my saving grace these days. Prayers to all you wonderful people, Cyn

Lula73

This happens sometimes. The docs don’t want to lose time waiting on the tests since there’s a wait for the next steps they need to schedule next too. They schedule those next steps then move everything around when there are surprises in the pathology. It is frustrating for us as patients because we feel relieved finally having a plan just to have it all turned upside down at last minute. RO is just covering all the bases. If your BS or MO never scheduled you for a breast mri prior to surgery, shame on them. Mri is much more sensitive than mammo and u/s and will pick up things those other two miss. Your MO would likely have scheduled CT and/or PET at some point anyway, RO is making sure it happens sooner than later. Glad theyre able to get you in so quick. Hoping for clear scans and smooth sailing here on out!🍀

MiCyn

Lula, Thanks for the reply. I thought that might be the case, that they don't want to waste time, so they schedule things like rads, knowing the plan may change, such as in the high Oncotype score. They originally were going to do MRI back in May, but BS decided it wasnt needed, thinking stage 0 from the biopsy. I really like my whole team of Drs, however I think BS is most outspoken of the group. The MO, RO do work great together. I trust that they have my best health interest at heart, and moving forward they are the ones totally in charge now.

Smooth sailing, sounds good to me ! 🤗Cyn

nonomimi5

Micyn - I got a CT scan of the breasts only before rads because my nodes were clear. Since you didn't get biopsy of the nodes, they are checking the rest of your body just to be safe, which is a good thing. They should have biopsied the nodes and use contrast dye to take out some nodes during the surgery to get the pathology report because you were grade 2 IDC. Invasive BC need to check nodes. I am sorry you are going through this but the thorough CT scan will give you a peace of mind and directions for the next phase.

edwards750

My process was different. I had a biopsy followed by a lumpectomy. Path report showed a micromet in the SN. BS was surprised. I was devastated. He said it would mean chemo. MO disagreed and ordered the Oncotype test. She said too many women were over treated. Oncotype score came back@11. No chemo. 33 radiation treatments. It was the MO’s call not the BS.

I never had a breast MRI. My BC was IDC, Stage 1b, Grade 1. I’m 7 years out in August.

I feel for you. All you need is confusion at this point but once all of this is settled the process should move quickly.

Good luck!

Diane

obsolete

Hi MiCyn, it's normal to have emotional bursts of excess energy, stress and worry, especially during the early stages of BC. Please never feel that you are alone, because you have plenty of company here. You were already given some excellent informative responses.

I thought I would add that conventional IDC cells "usually" are only along the outside periphery of the Papillary Carcinoma tumor, if one exists, and thus the "extension" (of IDC cells) is usually very minimal into the nearby stroma. This is a VERY GOOD prognostic feature when IDC is the invasive component WITH Encapsulated Papillary also present, even if the IDC is multi-focal.

Your medical team is focusing on your IDC because the invasive component always trumps the Encapsulated Papillary in making treatment decisions. You might wish to consult with your Pathologist on the actual "extension" of IDC cells and to verify that your IDC cells were isolated to the periphery of your Papillary tumor, as I had been told by Breast Pathologists that such cases rarely occur in the lymph nodes also, unless your Mitosis on your IDC lesion was unusually high. Just something to keep in mind.

MiCyn

nonomimi5..... Actually I'm stage 1A . I just realized I never updated my dx after surgery. My original dx was stage 0 2.6 cm encapsulated papillary carcinoma ..It became stage 1A after finding 2.4mm of IDC arising from it, so very small. That was the reason BS didn't feel need to go back into surgery to check nodes.

I had CT scan yestrday, MRI today..that was not fun, but I'm grateful to be checked more thoroughly. I had the discussion with MO few weeks ago about the oncotype score, and should it come back high, we would be discussing chemo.

Thanks to ALL of you for your thoughts & sharing with me the steps you went through. I feel MUCH much better! Now if only Dr appt day for results (Tues) can come ASAP! 🤗 Cyn

Meow13

I got the MRI you described before my surgery and before my oncodx results. You are absolutely right that the oncodx score does not equate to progression. I know a person with an oncodx score of 4 that was probably already stage 4, they just didn't know it at the time.

Oncodx is used both as a measure of if chemo will work well enough to reduce your recurrence risk significantly and how well will hormone therapy work.

Meow13

Micyn, I notice you are pr negative, it may explain why your oncodx is so high. You might want to ask your mo about doing AI drugs since they tend to be more effective than tamoxifen in Er+ pr- cancers.

AI drugs are for post menopausal woman but you may have options to put you into menopause if you are premenopausal.

Mquara

They're not necessarily looking for mets but probably just ruling mets out. I had a hard time too with the MRI Hated it!

I had 1 node with micromets that showed up enlarged on mammo, U/S, MRI and Pet scan, two pre-surgery biopsies showed it negative, initial post surgery biopsy showed it negetive. Outside pathology showed micromets and an isolated tumor cell in a second one and the third node they removed was clear. So who knows what they will see but my micromets showed up as positive on scans.

My oncotype was 31 but I had all these tests prior to surgery and knowing my oncotype

It's hard to try and twist your thinking around when you are in the middle of it but instead of being terrified that they're adding tests, be encouraged that you have found yourself a great team that is proactive. They have to manage your physical needs AND mental needs and you need to know clearly where your cancer has stopped. Many Doctors only deal with the physical aspect of cancer and spend little to no time managing the mental and emotional side of it.

Meow13

My breast surgeon who removed the cancer wanted me to talk with their in office psychologist. I contacted my insurance and they won't cover it. The best emotional support or treatment was talking it through with friends and others who had been through this themselves.

I made it through because of them. Mostly I would talk to them and feel reassured that I could get past it.

MiCyn

Meow..I also thought that my being PR- has something to do with the high Oncodx score. That was one of the questions I want to ask my MO when I see him this week. He did bloodwork @ my last visit to see if I am in Menopause. We are expecting me to be, even though it hasn't been a full year of no period. MO did mention the Al drugs also. I can't believe your insurance wouldnt cover psychologist. Thats just SOoo not right. I agree, having a great support system is very very important as well.

Mquara..boy what a confusing time that must have been for you! Yes, I am very thankful for such a proactive team. They never ever rush me out of the office, even though i know how very busy they are. They make me feel like I am their number one concern, and I'm sure other patients feel the same. It helps me with going through this devastating dx for sure . Thanks for the positive reply.

🤗Cyn

Yummy77

Mycin- so sorry to hear about your situation, what i know is they should do all those tests before surgery.

In my case i found the lump @ 6:00 left breast went to a BS and referred me for mammogram and breast US the result they found another small lesion @ 7:00 so radiologist ordered US guided core biopsy result IDC (1.7cm @6:00 ) DCIS (6mm @7:00 ) no lymphnodes involvements... BS send me for bone scan and upper abdomen US results OK , scheduled lumpectomy and got 5 sentinel nodes , before surgery went for nuclear CT for sentinel nodes then went for wire localization for the two lumps then surgery the same day. Surgical pathology IDC stage1a grade 1 no nodes no LVI ki67 20% ER/PR highly positive HER2-... IDC clear margin DCIS positive margin ...scheduled re-excision for theDCIS results clear margin , referred to my MO then ordered ONCOTYPEDX result score of (7) no chemo 19 rads (10 more to go)and TAMOX after

Note: 7 days after re-excision had heart palpitations so went to ER ordered chest xray and thoracic CT And some blood tests for Thyroid and PE (pulmonary embolism) and blood clotting results were good.

Just imagine those test that i had so tiring and stressful BUT once u got a plan for ur treatment it really helps to ease those worries , so hang in there .

I am really thankful for our Universal health care here in Canada i paid nothing for all those test including the ONCOTYPEDX 😊🙏.

I still worry sometimes though my RO told me “you can think that u are cancer free “ “ you’ve got a gentle cancer” . I am trying to stay positive and PRAY and BELIEVE

OJY r

Meow13

My insurance covers treatment just not the psychologist through my doctors office. Like I said one coworker who went through BC several years before me. She got me through it.