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2nd opinion showed involved margins

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wondering44
wondering44 Member Posts: 261
edited April 2022 in Waiting for Test Results

Ladies,

I need some help to understand the pathology report better, please. I had a nipple-sparing mastectomy on 08/18/21. The pathology report showed negative margins for IDC and DCIS. After some hiccups, I decided to get a second opinion out of state. The new Center started everything from the beginning. They reviewed the slides and re-did the pathology report from the mastectomy. I got the report this evening, so there is no doctor to ask tonight.

The new pathology report showed involved margins:

IDC Superior & Deep Margins

DCIS Superior, Deep, and Inferior margins

So, is this why radiation is done? I did radiation after the mastectomy. Is radiation done to nix cancer left in the margins?

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  • parakeetsrule
    parakeetsrule Member Posts: 605
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    From what I understand, if the margins aren't clear and they can remove more tissue to get clear margins, they will do that. Radiation is to catch anything too small to see or areas where the cancer can't be removed surgically.

    I'm not sure what they would do if you already had radiation. They may recommend a full mastectomy.

  • wondering44
    wondering44 Member Posts: 261
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    parakeetsrule,

    I had a separate Pathologist read the report tonight. A friend I didn't know was a Pathologist. Yeah, I'm thinking I will have to cancel my scheduled breast reconstruction. Thankful I decided to go out of state for a 2nd opinion. Sheesh…

    And thank you for the info. to help me understand it. I appreciate it very much.


  • wondering44
    wondering44 Member Posts: 261
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    Original biopsy last year 07/06/21 showed HER2-. Re-review of path report and slides on 03/11/22 showed equivocal for HER-2/neu (2+) - borderline. Got the new test result this morning. More waiting…



  • katg
    katg Member Posts: 215
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    My journey started in July. BRCA2 in August from Genetics test at City of Hope. Never was I given a lumpectomy as my breast are not that big. Total removal was my choice. Fast forward Feb 9th with my left side that has the tumor and had the mastectomy and what my tumor revealed in its biopsy was my HER2 - turned into HER2 +.

    New treatment direction. I looked up HER2+ cancer on its own and it has been known to be the cancer that returns after the first one is removed. Targeted therapies and screening are changing that. It just means our therapeutic part will be a longer journey. I am very confident in the City of Hope. Getting your second opinion sounded right. Your body and your breasts. My insurance has paid. Thank God. I hope yours does, so you can get the test and treatments you need, ongoing. I look forward to hearing others journeys. One Day at a Time.....I will be thinking about you.

  • wondering44
    wondering44 Member Posts: 261
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    Hi katg,

    It was a tremendous shock to find out the pathologist for the NSM was incorrect on the margins. I am hopeful the radiation treatments did away with what was unknowingly left behind. It is hard to go through treatments to discover that doctors at two hospitals got it wrong after getting the "we got it all" from both facilities such a short time ago.

    It is difficult to find out I made treatment decisions based on incorrect information. Last year, the MRI done was incorrectly read, and I now know I was not a candidate for the NSM. I consider myself lucky to have quickly discovered I needed to get a 2nd opinion, although quite frustrating and disheartening.

    The past has left my mind wondering in several directions. I do what I can to stay busy and keep my mind from wondering about things I do not control. Lots of Netflix. Lots of outdoors in the beautiful weather (insert smiley face). I learned a lot about waiting and wondering last year. While difficult, it does not make sense to struggle with any "what ifs" when I can't control the unknowns or the answers.

    Today I am waiting for the rest of the results for the 2nd opinion. I go in for a five-day stay to re-do all images, scans, pathology and discuss treatments if needed. The third time is the charm, right?! I keep my fingers crossed.

    I am sorry to read your path changed to HER2+. I have read about it and understand it does make a difference in treatment and recurrence. I am glad to read your insurer is doing what it should and covering it, and that is a blessing in itself. I will keep you in my thoughts while you go in your new treatment direction. Thank you for your thoughts and post.

    One Day at a Time… :-)

  • wondering44
    wondering44 Member Posts: 261
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    Update.

    Still waiting to finish the 2nd opinion.

    MO here said the radiation I did is for the incorrect pathology.

    My breast surgeon here today said the mastectomy is for the involved margins.

    My MO took me off Letrozole for two weeks due to side effects. I was supposed to confirm if any better to see about switching to Anastrozole. I've been waiting for a response for six days since I was supposed to start meds again on Monday. I started taking the Letrozole again while I wait. My breast surgeon today said to take the Lexapro to keep my left breast safe from developing cancer and he will write me a prescription for it when I run out.

    I wonder why I question my confusion. This post is probably more a "vent" than questions.

    My therapist agrees with my decision to go out of state to the other facility for the 2nd opinion and continued care.

  • katg
    katg Member Posts: 215
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    Wandering 44...

    I can feel frustration. Getting a 2nd opinion is so right. I had a number of tests and my biopsy done at my local hospital. From there, my doctors office PA said a surgeon is needed. Covina one or she said go to the City of Hope. That is best for you. Just thinking of that, would the surgeon have just taken it out? What path would i be on if i had not went to a top rater cancer/research hospital? Looking at my original pathology, I see my HER2 was rated a 2 as well. My tumor was a 5. Sounds like HER@ was in there making it big. That is the one thing bad still about my tumor. It was the 1 out of 5 items that almost had me getting radiation. The DR. there said the risks are not worth the benefits. My particular cancer and effects is in 2% of cases.

    Having found no cancer in my 3 lymph nodes removed, the vascular system or any other place, the focusing on this HER2 seems right. What i know is this is truly a lifetime diagnosis.

    As to the third time.....my prayers are with you. One test at a time...one day at a time. Let them get to the bottom of your diagnosis! Keep us posted please! I will add you to my prayers.

  • wondering44
    wondering44 Member Posts: 261
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    A new confusion…

    I did an appointment today to see if I can take testosterone for sex drive. She asked why I am not using Zoladex to suppress ovaries? I let her know I went in to appointment in December to start the Zoladex and was told I didn't need it since I have not had a cycle in 24-months from a hysterectomy. I explained at that appointment that I kept my ovaries and my bloodwork shows I was not post-menopausal. I was told to start the Letrozole and to not do the Zoladex and the Zoladex injection was cancelled. The appointment today said I should be doing the Zoladex because I am still not post-menopausal.and producing estrogen and progesterone. Does anyone have any info. on this? I am still waiting to go to snd option out-of-state facility.

  • moth
    moth Member Posts: 3,293
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    Katg, Just popping in quickly to comment on her2. Apart from wishing I didnt have cancer at all, my next biggest wish is for a somatic her2+ mutation.... because:

    It is currently the most curable subtype

    "Thanks to such antibodies and additional HER2-targeted agents, HER2-positive breast cancer progressively turned from the most feared to the most curable subtype. Currently, more than 9 out of 10 patients with HER2-positive breast cancer who are treated with chemotherapy and HER2-blockade are free from recurrence 6 years after surgery.3 The treatment and outcomes of HER2-positive breast cancer have improved so much that the research focus has gradually shifted from treatment escalation toward a search for safe de-escalation opportunities."

    https://dailynews.ascopubs.org/do/10.1200/ADN.22.2...


  • cowgirl13
    cowgirl13 Member Posts: 778
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    Wow! Moth, thanks for this posting and link.

  • wondering44
    wondering44 Member Posts: 261
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    Got my labs back from this morning to see if I can take testosterone.

    On Letrozole without Zoladex today: Estradial pg/ml - 180/FSH mlU/mL 6.21

    December 2021 before Letrozole: Estradial pg/ml - 43/FSH mlU/mL 5.77

    ...

  • rah2464
    rah2464 Member Posts: 1,192
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    If you are not menopausal you should be on a SERM, or if you take an AI you need ovarian suppression. This seems like a miss from your medical team.

    Have you had a chance to communicate with your MO?

  • wondering44
    wondering44 Member Posts: 261
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    HI rah2464,

    I am not in menopause. I had my levels checked in 08/2021 and 12/2021. My MO canceled the Zoladex infusion at appointment and said in December I should see a drop in levels once I start taking the Letrozole. I'm not seeing the expected drop. I have not asked my MO to look at it yet. Just got it yesterday afternoon. I won't get a response over the weekend. Thank you for or your post. I thought the same thing as you did on the levels. I considered taking CBD last night for stress. I leave in three weeks to go out of state. It is a LONG three weeks.


  • alleycat5
    alleycat5 Member Posts: 33
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    Moth - Thank you so very much for posting that - you don't know how much I needed to read that this morning. Had lumpectomy re-excision to try and get clear margins and SNB yesterday. (Hoping now for negative node). I'm triple positive, and the HER2+ info out there can be frightening, but now starting to realize most of it may be outdated. I've been sitting here this morning wading through some of it and thinking I just need something positive. You gave that to me! Thank you!!

  • katg
    katg Member Posts: 215
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    Thank you all for posting. My HER2 positive diagnosis from my tumor had me starting on the 2 infusions. Yesterday 1st dose. The do it slowly to check how i tolerate it, as they do with chemo, so 3.5 hours later I was out. Herceptin and Perjeta! How long? 1 year.

    My MO met with me after my electrocardiogram at 8:00 and then my blood panel. White cells are still down a bit and platelets a 100 plus off my usual. In a good range but. Now that i take femara, without my ovaries and fallopian tubes taken out 6 weeks ago, I asked about my hormones!! What am i going to take to help in the replacement of the estrogen that is stopping production in my body? My good MO said in time. We need to see how your body adapts to these infusions.

    I enjoy you posting these treatments, as i can go look them up. My 5cm tumor that was removed with my breast in the mastectomy, my BRCA2 diagnosis and my new histology of HER2 positive have altered my treatment ongoing. Each of us is different and based on age, have different needs. As I always say, as i need to see the words to, that worrying about test and outcomes is fruitless. On the other side of the diagnosis we have Drs ready to take it to the next step. We are not alone. Hearing from all of you as you walk through it too is a comfort. Have a good Saturday!

  • wondering44
    wondering44 Member Posts: 261
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    The oncologist here finally got back to me this evening after I sent three requests to review labs the PA ordered and let me know what the results mean. Immediate stop of Letrozole due to increased Estradiol levels and not in menopause. I haven't found a study yet that shows I was supposed to take Letrozole without OS if I was not in menopause. So many thoughts...

    My mom fell ill unexpectedly two weeks ago. It was hard to push aside while sitting with my mom in hospice this weekend before she passed away.

  • moderators
    moderators Posts: 8,178
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    Oh, we’re so sorry to hear about your mom, wondering44. Sending you peace and love during this difficult time.

  • rah2464
    rah2464 Member Posts: 1,192
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    Wondering so very very sorry to hear about the loss of your Mother. God bless you.

    Please keep us updated on what is happening. Your MO needs to explain why they dropped the ball so it doesn't happen to another of their patients. If you are not going to do ovarian suppression they need to put you on a SERM (like tamoxifen) . I know I have finally gone through menopause but man did it take a while. I am 58 now think it happened at age 57. I think sometimes folks just assume you are finished when you no longer have a period and i think that isn't as clear cut when you are taking these meds.

  • wondering44
    wondering44 Member Posts: 261
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    Thank you for your thoughts Mods. It means a lot. :-)

    rah2464, Oncologist said I need to start Tamoxifen ASAP. I put my hand up and said wait just a minute. I want to know what happened to the plan last year to do OS and an AI. I explained I had a 2nd opinion with an oncologist last year before starting treatment who wanted to go the Tamoxifen route. I need an explanation.

    rah, I did my due diligence last year getting 2nd opinions on each specialty before deciding what to do for treatments. I do not live in a small area where healthcare options are limited.

    I worry and wonder about every woman who walks behind me in those doors to the facilities here. My care, for me, has been a disaster. Luckily, I discovered I need to go elsewhere sooner than later.

  • scaredme
    scaredme Member Posts: 65
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    I do not understand why they would put you on an AI without OS. I am almost 50 and even though they tested my Estradiol levels after chemo (I am technically in Menopause), my ONC still has me on Lupron shots every three months along with Letrozole. He said they will test me after 2 years and decide what to do after that.

  • wondering44
    wondering44 Member Posts: 261
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    scared,

    I received an explanation from the oncologist. Basically, when I was told to stop taking Letrozole my levels went up and the increase was new. I explained that was incorrect. I started taking Letrozole again before the labs to check levels. I had my levels checked four times between August and December 2021 before I started medication. It clearly shows the levels increased on the Letrozole. I asked when I'd get scanned again to check right side based on the incorrect pathology and the increased levels. I was told I need more time (months) before doing any re-checks to allow any inflammation to go down from treatments last year. I understand that decision and will NOT take that advice.


    Thank you for your post. I appreciate your info. on your treatment. It seems to be very in line with all of the studies I pulled this past weekend.

  • wondering44
    wondering44 Member Posts: 261
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    My plastic surgeon said I need to discuss the NSM with the incorrect pathology with the new MO before reconstruction. He thinks the whole breast needs to get removed and reconstruction postponed another year. Why am I getting this info. from a PS and not my MO or BS when I notified them of the wrong path??? Frustrated that I have a San Diego trip in June and Jamaica trip in August already booked. I was looking forward to boobs in a swimsuit. Reconstruction on pause. I already knew that I needed to cancel it. I just really wanted my boobs back. Wishful thinking.

    I do have swelling and pain around my right breast and ribs (lower inner quadrant and lower and upper inner quadrant and underarm). It is very noticeable in my outer quadrant. And a lump (small hard area) in lower left quadrant next to swollen, painful ribs. This is new finding this past week. I am crossing fingers it is due to radiation (not researched much yet).


  • wondering44
    wondering44 Member Posts: 261
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    Addition to my blog…

    Md Anderson is insane. Just wow!!! I did not know a Cancer Center could provide a grocery store in the hotel. Oh, and an ice cream shop too!


  • wondering44
    wondering44 Member Posts: 261
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    Update:

    Will do ovarian suppression and check levels in 2-3 months for menopause before starting an AI.

    Start scans tomorrow to check for residual tissue and disease in right breast to confirm moving forward with complete mastectomy and natural reconstruction. I will have to wait to remove right breast due to radiation tissue damage since I did rads prior to removal with the incorrect pathology. I do scans to check for metastatic disease/restaging (crossing fingers).

    Bilateral mammograms, bilateral ultrasounds, whole body bone scans, whole body CTs. MRI to follow after all other scan completed.

    I will have answers quickly...

  • wondering44
    wondering44 Member Posts: 261
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    Great news! CT and Bone scans all good.

    I have a ruptured implant (right breast). I have an MRI scheduled this evening to determine if the remaining breast tissue has residual disease. The remaining residual tissue confirms the removal of the right breast.

    I have a biopsy scheduled for the left breast for multiple spots found on mammogram. Just had a negative ultrasound and mammogram in February (hometown results).

    I will take the good news in having the removal of the right breast and possible left breast. At this point, adding the left breast (if biopsy is not benign) is the best outcome I could hope to receive. :-)