Late local recurrence

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

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.

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.)

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.

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.

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.

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.

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.

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.

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.

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

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?

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.