Late local recurrence

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Katiha
Katiha Member Posts: 68
edited August 2020 in Just Diagnosed

Hello all!

My mom just had a very late local recurrence of breast cancer(16 years in remission after stage 1).

First time cancer was 0.9 cm, es5 pr10 her2 negative.

She had a lumpectomy plus radiation plus only 3 months of hormone therapy( doctor said it's too close to triple negative)

Remission for 16 years.

On May 15th her mammogram showed a tumor and they did biopsy that came negative. So her doctor suspected fibroadenoma and offered to watch it.

Mom insisted on surgical removal.

Turns out it's recurrence, 1.3 cm, grade 2,pathlogy report states er0 pr0 her2++.

Her doctor said there will be no chemotherapy.

Does it mean they leaving her without any treatment? Mom is 68.

Should they check her2 once again?


I am so frustrated and devastated I don't know what to expect and do.


thank you,


Kate

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Comments

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2020

    If she is really HER2+, she should definitely be getting Herceptin infusions, and likely Perjeta also. And Herceptin is usually started with Taxotere or Taxol chemo to give it a jump. HER2+ is a fast growing, dangerous cancer. Is this a medical oncologist that is saying no treatment? That's who should make the decision. If he is a MO and is really saying no treatment, you need to get a second opinion as fast as you can.

  • Katiha
    Katiha Member Posts: 68
    edited July 2020

    Her medical oncologist said that before surgery I think he was pretty positive it will turn out to be ER positive because of her age.

    We were waiting for pathology report for 2 weeks after surgery, on Tuesday they will finally give papers with treatment.

    I am really devastated and think she needs chemo with triple negative or even HER2 positive.

    Why everything is taking so long? Is she not a good candidate for chemo because of her agr

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2020

    Is this second cancer in the same area of the breast as the first cancer? If not, it might not be a recurrence but instead might be a new primary breast cancer. Anyone diagnosed one time with breast cancer is at higher risk (than the general population) to be diagnosed again, with a second but unrelated breast cancer. Your mother, being in her 60s, like all women is in her highest risk years to be diagnosed with breast cancer. So as the years passed from her first diagnosis, while her risk of recurrence went down, her risk to develop a new primary increased.

    When your mother next sees the surgeon or medical oncologist, ask whether they think it's a recurrence or new primary. From a treatment standpoint it doesn't really matter, but if it is new primary, it can be reassuring to know that the first diagnosis was successfully treated.

    Being HER2+ and with a 1.3cm tumor, chemo will absolutely be recommended - that is standard protocol for HER2+ cancers. If chemo is not recommended, seek a second opinion.

    "Is she not a good candidate for chemo because of her age" If she was 85, that might be an issue. But at 68? Not at all, unless your mother has other health issues. 68 is not old. The average 68 year old has a life expectancy of another 18 years (according to the Social Security actuarial table) which definitely makes chemo worthwhile.


  • Moderators
    Moderators Member Posts: 25,912
    edited July 2020

    Wow, fabulous advice from everyone! Please keep us posted, and know you're in great hands here with this amazing group.

  • Katiha
    Katiha Member Posts: 68
    edited July 2020

    I read that it is local recurrence ( even after such long time) if the cancer sits within 3 cm from the original one( hers is within 2 cm) and did not change the grade and very close to the original one.

    Surprisingly this one is grade 2 by being possibly TN.

    First one was grade 2 as well.

    I am not sure why would she be a bad candidate she did have 2 other cancers during her lifetime though, throat cancer stage 2 at 25 and thyroid cancer at 62.
    And now this.

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2020

    If the doctor and pathologist really care (which often they don't), the determination of local recurrence versus new primary is more complicated that location and grade. Certainly location is a big factor; grade not so much since some breast cancers (mine, as an example) are comprised of cells of more than one grade.

    Time is a significant factor and time-to-recurrence often relates to hormone status. TN tends to recur early whereas highly ER+/PR+ tends to recur late. Your mother's first diagnosis, while ER+/PR+, was closer to TN than to highly ER+/PR+, which possibly puts into question such a late recurrence. ER, PR and HER2 can change as the cancer cells evolve, however it is more likely that a recurrence will have the same cell biology as the original cancer versus having a different ER, PR and HER2.

    "Features associated with a greater likelihood of being a second primary tumor include a long disease-free interval (> 5 years), recurrence in a different segment of the breast from the original primary, and differing clinical or biological characteristics. A careful review of the histologic features with a pathologist is an important component of the evaluation. Other biological features (eg, estrogen/progesterone receptor evaluation, HER2/neu overexpression) may also be useful -- concordance suggests a recurrence, whereas discordance suggests a second primary." https://www.medscape.com/viewarticle/413457

    As I said, recommended treatment is likely to be the same in either case, but a recurrence presents greater risk than a new primary; with a recurrence, it would mean that cancer cells have been present the entire 16 years. Therefore additional testing might be advisable, such as a CT or PET scan, which are not always recommended those with an early stage cancer.

    Did your mother have a fibroadenoma after all? Sometimes cancer can hide inside a fibroadenoma, and that could be a reason for not finding a recurrence sooner. Or was there no fibroadenoma and the mass was just the cancer?

    As for why your mother has had 3 types of cancer, has she had genetic testing? Is there is history of cancer in her family, particularly her parents, grandparents and siblings? Cowden's Syndrome, which is caused by an inherited genetic mutation in the PTEN gene, does present a high risk for both breast cancer and thyroid cancer. If your mother has not seen a genetic counselor, this should certainly be done now. It could be relevant to you too, as her daughter.


  • Katiha
    Katiha Member Posts: 68
    edited July 2020

    Beesie, thank you so much for such detailed response!

    This forum is amazing.


    I do too question if this is recurrence or new primary.

    I also question the first treatment as there were no chemo done 16 years ago( for almost triple negative cancer)


    There were no fibroadenoma, the mass turned out to be cancer.

    As for the genetic testing, both her and I did and no genetic mutation found while her cancers and the fact that my dad died from colon cancer puts me at higher risk. I started having mammograms a year ago and I am 39 now.

    Do you think chemo is suggested with her history? Since there were no chemo the first time around?

    Once again, thank you so much!


    Kate

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2020

    Kate, I agree that it seems odd that your mother was not given chemo with her first diagnosis.

    That said, whether or not your mother had chemo last time, and whether this is a recurrence or a new primary, the fact that this cancer is HER2+ means that chemo is indicated. Here is a chart from the 2020 NCCN Treatment Guidelines - they are the gold standard guidelines used by most oncologists. This chart is for Hormone Receptor (ER and PR) Negative, HER2 Positive. You can see that even in cases that have the smallest tumors and are node negative, chemo & Herceptin (trastuzumab) should be "considered". With a tumor that is 1.3 cm, there is no question that chemo and Herceptin are required. (And note that Hormone Receptor Positive, HER2 Positive chart has the same recommendations.)


    image


    Was the genetic testing that was done a full multi-gene panel, testing at least 20 different genes (I believe many tests look at ~30 genes these days)? And when was the genetic testing done? New variants of the genes are regularly found, so if the testing was done more than 5 years ago, retesting today might come up with a different result. I had genetic testing done twice, first when I was initially diagnosed, and again about 7 or 8 years later. I was tested for a lot more the second time. Turns out that I was negative for everything both times, but a third round of testing (as part of a clinical trial) found a VUS (variant of unknown significance) that has a very slight possibility of being linked to the cancers in my family. The more likely assumption is that with all the cancer in my family, there is something genetic going on but the particular genetic mutation affecting my family just hasn't been discovered yet. Of course if your mother doesn't have a lot of cancer in her family, the fact that she's had several different cancers might just be crappy luck or might be specific to some exposure she had as a child, rather than being genetic.

    Edited to correct definition of Hormone Receptor Negative - it is 'ER and PR negative', not 'ER and/or PR negative', as I'd originally posted.

  • Katiha
    Katiha Member Posts: 68
    edited July 2020

    Hi Beesie,


    Thank you again, very informative.

    Do you know which chemo is usually given in such circumstances?

    Are you a survivor with HER2 positive or a doctor may I ask?

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2020

    I'm just someone who's had breast cancer, but I'm a research junkie and started digging into the research back when I was diagnosed and found it interesting so have stuck with it.

    My diagnosis was HER2- and I did not require chemo. Since I've tend to focus on the diagnostic process and treatment for diagnoses similar to mine, I can't answer your question about which chemo would usually be given in cases like your mother's. Hopefully MinusTwo or someone more familiar with HER2+ treatment regimens will be by soon to answer your question.



  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2020

    Kathia - Beesie is a marvel and we are so grateful that she chooses to share her knowledge here. Slow down girl. There a lot to take in here.

    I think the question about chemo has been answered a couple of times. If she is HER2+, according to protocol she should have chemo. As I said earlier, she should be seeing an MO (medical oncologist) and not just a BS (breast surgeon). If your Mom is seeing an MO and he/she has not recommended chemo - find another doc for a second opinion.

    I am Her2+. I had a BMX at age 67 for DCIS w/no chemo or rads. I had a recurrence at 69 that was IDC & HER2+. I had neo-adjuvant (before surgery) chemo including Herceptin & Perjeta, axillary lymph node surgery, more chemo, radiation and Herceptin for the rest of a year.

    You keep asking about age, which is why I stated mine. I was ER/PR negative, regardless of age. Treatment wasn't the easiest thing I've ever done, but probably no harder than childbirth. It just last longer. I'm eight years down the road. My hair grew back nice & thick, I have no residual health problems, I walk 4 miles every day and participate in water aerobics 3x a week. So far I am NED (no evidence of disease) and expect to live many more years.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2020

    Beesie - we were posting at the same time.

    Sorry Katiha - I didn't answer about the kind of chemo. Usually either Taxotere or Taxol are a given. That chemical helps jump start the HErceptin. I had TCHP - Taxotere, Carboplatin, Herceptin & Perjeta - every three weeks for 6 rounds. Some people have Taxol and Cytoxan with the Herceptin & think it is not as strong. Likely none of us have had both so we can't really compare.

    Because I didn't have a pCR (the tumor(s) completely disappear) after TCHP chemo, even though they were able to completely remove the malignant mass at surgery, I had a second round of chemo. That chemo was AC - Adriamycin & Cytoxan for 4 rounds 3 weeks apart. You can not take Adriamycin and Herceptin at the same time because both can weaken the heart - so I had to hold off on the Herceptin.

    Then I had radiation - 25 rounds every day for 5 weeks. During that I started Herceptin again & continued those infusions every three weeks for the rest of a year.

    All that said - every MO has their own recommendations and protocols. You need to find a doc who acknowledges the seriousness of HER2+ and discuss their ideas of treatment.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2020

    Kate: Where does your Mother live? That may make a difference in available treatment.

    You could get a second opinion at an NCI Center. See the link below to find out if any are near you.

    https://www.cancer.gov/research/infrastructure/can...


  • Katiha
    Katiha Member Posts: 68
    edited July 2020

    Thank you all so much!!!

    So much great information.

    I might be moving too fast I know, but I am just so worried and trying to gather as much information as possible and start moving ASAP.

    I think we will look for another doctor, as this one doesn’t care I feel like.

    I know I mention the age so much but that what my mom said and that’s why she thinks he didn’t suggest chemo.

    But at the same time chemo was not suggested to her first time around.

    Once again thank you all and please forgive me if I come out as too aggressive about this. I am just having a hard time to wrap this whole thing around..

  • Katiha
    Katiha Member Posts: 68
    edited July 2020

    MinusTwo,

    That’s the whole problem and that’s why I think the whole protocol is wrong- she lives in Latvia.

    They have only one oncology center in the whole country, crazy huh?

    So we are looking into the private treatment in a Germany now.

    Kate

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2020

    Kate - don't worry about "the first time". Just concentrate on the here & now. I'm sorry the treatment options are so limitted. Hopefully you will find someone who listens.

  • Katiha
    Katiha Member Posts: 68
    edited July 2020

    Thank you, MinusTwo!


    Tomorrow we will know what the consilium say and finally mom will get papers and recommendations of what to do.

    Maybe they will suggest chemo after all.

    Hopefully we will know for sure if HER2 is really positive.

  • msphil
    msphil Member Posts: 1,536
    edited July 2020

    hello sweetie definetly get 2nd opinion is what i suggest i am 26yrs out Praise God i would indeed do the same. msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast then got married was planning at diagnosis then 7wks rads and 5yrs on Tamoxifen.

  • Katiha
    Katiha Member Posts: 68
    edited July 2020

    Hello wonderful ladies!

    I am back with more questions and not such good news.

    There was a consilium and they going to do surgery again as they not sure about lymph nodes now(?) and probably will be doing mastectomy this time.

    I don’t know how could this happen and why they didn’t detect it the first time.


    meanwhile we pretty much organized her flight to Germany to consult with German doctors and do another histology and FISH.


    I see many of you have listed nodes in your profile 0/5 or 0/1, could please explain me what that means?


    thank you in advance!


    Kate

  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited July 2020

    Good luck with your Mom in Germany. Which country do you reside?

    Nodes in our tags. My surgeon's protocol for testing nodes was to inject the dye pre surgery. They follow the dye to the 1st sentinel node in the breast and it gets tested "hot" while still on the table. If the next node also tests positive in the breast, they continue to remove your auxiliary nodes as well. I'm not sure of the protocol on how many, or all. My 2nd sentinel node was negative so no aux. nodes were tested. Thus the 1/2 for me.

    First number is positive nodes. Second is how many were tested.

    There is a place in the profile to fill this out for you Mom if you wish. Again, best of luck to you both.

  • Katiha
    Katiha Member Posts: 68
    edited July 2020

    Ctmbsikia, I live here in Colorado. Mom lives in Latvia.

    I wish I could be with her at the moment but COVID.


    I will update my profile for mom!

    And thank you

    Kate

  • Katiha
    Katiha Member Posts: 68
    edited July 2020

    one more question, does amount of nodes reflect the stage or not?


    were they suppose to test them during the first surgery

  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited July 2020

    Yes, it is one part of the equation to arrive at staging after pathology. Not sure how they do it in Latvia but we use the TNM staging. T=tumor N=Node status and M=metastasis.

    T relates to tumor size.

    • TX. Tumor can't be assessed.
    • T0. No evidence of primary tumor.
    • Tis. Tumor hasn't grown into healthy breast tissue (in situ).
    • T1, T2, T3, T4. The higher the number, the larger the tumor or the more it has invaded breast tissue.

    N relates to lymph node involvement.

    • NX. Nearby lymph nodes can't be assessed.
    • NO. No nearby lymph node involvement.
    • N1, N2, N3. The higher the number, the more lymph node involvement.

    M relates to metastasis outside the breast.

    • MX. Can't be assessed.
    • M0. No evidence of distant metastasis.
    • M1. Cancer has spread to a distant part of the body.

    The categories are combined to get the stage, but these factors can also affect staging:

    Also, tumors are graded on a scale of 1 to 3 based on how abnormal the cancer cells appear. The higher the grade, the more likely it will grow and spread.

    The staging was changed a bit in Jan 2018. This looks to be current. My M was a (mi) micromet, but that changed now -according to this it would be N1M0. I think. My tumor was 4 cm which = T2. I can go find the sizing chart if you like.

    Where the heck is Beesie? LOL

    I hope that helps a little.

  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited July 2020

    Hard to tell 16 years ago what the protocol was. I would think a 0.9cm tumor would not have been cause to test nodes, and I do not believe they did unless there were symptoms of mets some place else.

  • Katiha
    Katiha Member Posts: 68
    edited July 2020

    Thank you, Ctmbsikia!


    So if this time the tumor itself 1.3 what stage does it mean automatically?

    Or you have to know the nodes.


    I am so worried and anxious about new surgery and new diagnosis.


    kate

  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited July 2020

    Based just on size it would be a stage 1, however yes, you have to wait on nodes and the pathology report after surgery for staging. Sometimes the tumors are found to be larger or smaller than on imaging too. Plus, again, node status will make a difference as well.

    Here's a little chart :

    Stage 0

    This stage describes noninvasive ("in situ") breast cancer. Ductal carcinoma in situ (DCIS) is an example of stage 0 cancer. In DCIS, the precancerous cells may have just started to form but haven't spread beyond the milk ducts.

    Stage 1

    This stage marks the first identification of invasive breast cancer. At this point, the tumor measures no more than 2 centimeters in diameter (or about 3/4 inch). These breast cancers are subdivided into two categories (1A and 1B) based on a number of criteria.

    Stage 1A means that the tumor is 2 centimeters or smaller, and that the cancer hasn't spread anywhere outside the breast.

    Stage 1B means that small clusters of breast cancer cells are found in the lymph nodes. Typically at this stage, either no discrete tumor is found in the breast or the tumor is 2 centimeters or smaller.

    Stage 2

    This stage describes invasive breast cancers in which one of the following is true:

    • The tumor measures less than 2 centimeters (3/4 inch), but has spread to lymph nodes under the arm.
    • The tumor is between 2 and 5 centimeters (about 3/4 inch to 2 inches) and may or may not have spread to lymph nodes under the arm.
    • The tumor is larger than 5 centimeters (2 inches), but hasn't spread to any lymph nodes.
    • No discrete tumor is found in the breast, but breast cancer larger than 2 millimeters is found in 1–3 lymph nodes under the arm or near the breastbone.

    Stage 2 breast cancer is divided into stage 2A and 2B.

    In stage 2A, no tumor is found in the breast or the tumor is smaller than 2 centimeters. Cancer may be found in the lymph nodes at this point, or the tumor is larger than 2 centimeters but smaller than 5 centimeters and the cancer has not spread to the lymph nodes.

    In stage 2B, the tumor may be larger than 2 centimeters but smaller than 5 centimeters, and breast cancer cells are found in the lymph nodes, or the tumor may also be larger than 5 centimeters, but cancer hasn't spread to the lymph nodes.

    Stage 3

    Stage 3 cancers have moved to more breast tissue and surrounding areas but have not spread to distant areas of the body.

    • Stage 3A tumors are either larger than 5 centimeters (2 inches) and have spread to one to three lymph nodes under the arm, or are any size and have spread into multiple lymph nodes.
    • A stage 3B tumor of any size has spread to tissues near the breast — the skin and chest muscles — and may have spread to lymph nodes within the breast or under the arm.
    • Stage 3C cancer is a tumor of any size that has spread:
      • to 10 or more lymph nodes under the arm
      • to lymph nodes above or beneath the collarbone and near the neck on the same side of the body as the affected breast
      • to lymph nodes within the breast itself and under the arm


  • Katiha
    Katiha Member Posts: 68
    edited July 2020

    Hi Ctmbsikia!


    She already had one surgery July 8th, somehow they were operating her for fibroadenoma and did not check the nodes.

    The tumour was 1.3 cm similar to what was found on ultrasound.

    After pathology report which turned out to be triple negative or Er-pr-her2++( that is still not clear) they are going to do another surgery now with mastectomy on August 26th.


    and then going to test the nodes.

    So when I was referring first time I meant this time recurrence on July 8th.

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2020

    ctmbsikia, I'm here! Had my own doctor's appointment this afternoon (all is well!).

    Katiha, the consult in Germany sounds like an excellent idea!

    If the last surgery was thought to be removal of a benign fibroadenoma, then it makes sense that nodes weren't checked - nodes should not be removed unless necessary, which usually means when there is a known invasive cancer in the breast. So going back into surgery to do a sentinel node biopsy makes sense.

    As for the mastectomy, I'm assuming this is because your mother has already had radiation to this breast. Radiation normally follows a lumpectomy, but radiation can't be given to the same area twice. So this means that a mastectomy must be done because the radiation can't be. That makes sense too.

    Is breast reconstruction available in Latvia, and would your mother want this, or would she prefer to go flat?

    Will your mother be going to Germany prior to her next surgery?

  • Katiha
    Katiha Member Posts: 68
    edited July 2020

    Hi Beesie!


    Thank you for explanation! So the doctors still following the protocol? I am just not confident about the doctor anymore, I thought since they opened her they could have check nodes right away.

    Yes, we are organizing everything so she can go consult the doctors in Germany and do FISH to determine her2. We will be doing it prior to surgery.


    She said she will go flat she doesn't care about the look of her breast, just wants to live long life!


    Thank you again, it has been a roller coaster for us these past weeks.


    Also worried that it all taking so long, will itbe too late to do chemo?

    Btw doctor said that yes with this chemo is definitely happening.

    Kate

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2020

    Kate: Glad you're Mother is going for a second opinion. Keep in mind - if she really is HER2+, the protocol is chemo FIRST. A couple of reasons - Her2 is aggressive and you want to get started as soon as possible, and it's often useful to shrink the tumor(s) before surgery, and chemo will mop up stray bad cells lurking around so the surgery has a better chance of clear margins. Push for that FISH test.

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