Taxotere and my Pathology Report

Hi there. It looks like you have no lymph node involvement, which is good. And if you are ER+ and PR+ I would get a second opinion on chemo vs taking a pill like Tamoxifen. I would also insist on an Oncotype DX test if your insurance will pay for it.

Since I was dx'ed 10 wks ago. I have had the honor of meeting many bc survivors. Several of these women have been free of cancer for over 15 years and 2 women over 20 years. So many have survived and moved on. We don't usually hear their stories. Im lucky one of the 20-year survivors has become my mentor. She said this is her way of giving back. There are times Im overwhelmed and when I am I seek support from these threads , friends and mentors. Its tough not to become discouraged. The support from.others helps in dealing with this horrible disease.

When I was diagnosed at 44, all 3 of the 3 women I had known who were diagnosed when premenopausal were dead from their cancer, and they all had died within a couple years of diagnosis. Sometimes I felt as if their ghosts were with me, especially when I found out one of them had seen the same doctors. I truly felt doomed.

I am now more than 7 years out from finishing treatment. That's 7 years I'm thankful for. I also know some women who were also diagnosed with stage III around the time I was who are still kicking.

I'm curious about your statement "I don't believe in chemo." There are a lot of things that can mean, and I don't want to make any assumptions. It does totally suck that everything is done on a population/percentages basis and for those of us who got/get chemo after surgery there's not even any way to know if it's working. I just figured that with my kids so young, I had to do everything I could to improve my odds of being alive down the road for them. Did I get a guarantee? Hell no. Did I get something personalized? Hell no. What I got was knowing that if 100 women like me were in a room, 50 of us got chemo and 50 didn't, that years down the road more of the 50 who'd gotten the chemo would be alive. Didn't mean that nobody in the no-chemo group would be alive, or that we'd all be alive, just that there would be more of us alive. So I did it. My hair never came back as thick as it was, my gums receded - all sorts of nasty stuff. Whether I'd be here anyway I don't know, but I don't second-guess my decision process.

Unless you're involved in a clinical trial, there's not a whole lot of choice about the chemo. There are limited recommended regimens. Doctors can basically choose to offer you their equivalent of their favorite brand (think Post vs. General Mills Raisin Bran) but it's not like choosing to have a grapefruit instead of cereal. Those analogies sound trite, but they're pretty accurate. If a doctor gives you chemo that's not what's one of the recommended first choices, they make themselves vulnerable to a lot of medical liability. And hell yes, it would be better if they could personalize the chemo based on molecular characteristics of our tumors. That's where they're headed, just not there yet. A friend of mine's oncologist told her not to pay any attention to developments in cancer care after hers was done, that things were always changing and she'd only get upset that it hadn't been available when she was diagnosed. That's wise advice. I also thought about how lucky I was to have been born in the 20th century, not the 18th, when I would have been dead within a year.

Hoping,

I did Taxotere and am 3months PFC, and have very thick hair regrowth. I was prepared for it possibly not coming back. The thing about all of this is, there are no guarantees no matter what you do. I am stage 1, had mastectomy first, and opted to do chemo prophylactically. My cancer is a more aggressive type, HER2+, and hormone related treatment does not apply to me, so circumstances are different. The main push for me was that I’d rather put my body through chemo at age 46 than at age 56, 66 or older, so why not go ahead now?

Chemo was not fun, but it was not as bad as I expected, it is done now, and I was surprised at how quickly it seemed to go by. Seriously, for something not fun, it did.

Best wishes to you with the tough decisions ahead,

Leatherette

Hi Tracy:

The above does not appear to be a complete copy of a surgical pathology report. Often, the information posted in a patient portal is not the complete report, but is a partial extract of a more extensive report and is summary in nature. For example, the complete report would be several pages and include more details, including a gross description of the surgical tissues and tissue block identification (e.g., the above refers to Block 1K, but lacks gross description indicating its not a complete document.)

If you didn't receive a more detailed report, please obtain copies of the complete pathology reports from all surgeries and biopsies for your review and records.

The nurse navigator, or if none, the surgeon's administrative assistant, should be able to provide these to you in person, or if you prefer, send you complete pdf copies by secure email.

______________________

Re: "Here is my pathology report which I wish contained the the percentage of Er/Pr ."

The Main Site here explains variations in reporting ER and PR status:

"Not all labs use the same method for analyzing the results of the test, and they do not have to report the results in exactly the same way. So you may see any of the following results:

• a percentage that tells you how many cells out of 100 stain positive for hormone receptors. You will see a number between 0% (none have receptors) and 100% (all have receptors)
• a number between 0 and 3. "0" means that no receptors are present, "1" a small number present, "2" a medium number, and "3" a large number
• an Allred score between 0 and 8. This scoring system is named for the doctor who developed it. The system looks at the percentage of cells that test positive for hormone receptors, as well as how well the receptors show up after staining (this is called "intensity"). This information is combined to give a score between 0 and 8. The higher the score, the more receptors were found and the easier they were to see in the sample.
• the word "positive" or "negative"

In my case, one hospital reported specific percents ER and PR positive. Another hospital used four categories with broad cut-offs. They reported that the "tumor cells stain for estrogen receptor" and "the tumor cells stain" for progesterone receptor." The report notes indicated that this was one of four different categories (i.e., The tumor cells stain; Some tumor cells stain; Rare tumor cells stain; The tumor cells do not stain), and provided four corresponding thresholds (> 10% of nuclei stained; 1 to < 10%; < 1%; or 0%). For example, in my case, "the tumor cells stain" meant more than 10% positive:

-- "The tumor cells stain (> 10% of nuclei stained)"

The above is for illustration purposes only. What is important is the system used by your pathologist. Please check your complete pathology reports from biopsy and surgery for more information.

______________________

The above also indicates:

"Immunochemistry from core needle biopsy: ER/PR + HER2 Negative

Repeat HER2 FISH

HER2 Fluorescence Situ

Diagnosis negative for HER2 gene amplification by FISH"

I could be wrong, but my layperson impression of that is that ER/PR status information is from the core needle biopsy samples, and MAY NOT have been repeated on surgical samples.

{{{{{{{{{{ It appears that HER2-negative status was initially determined by IHC on a biopsy. Then FISH testing was used on surgical samples to determine HER2 status, possibly of the single largest focus on excision.

===> Please inquire which one or more of the six (6) tumors were assessed for ER, PR, and HER2 status, and the sample(s) used for such testing (core biopsy and/or surgical samples). Consult the relevant report(s) to verify. }}}}}}}}}}}}

______________________

Re: Chemotherapy recommendation

I'm not sure if you are now okay with the chemotherapy recommendation, but you mentioned, "Oncologist said Onco Score would just confuse things so why bother?"

It sounds like your MO didn't make her full reasoning to clear to you, and you wondering about it because the above says:

"meets criteria for Oncotype DX testing

52 yo female

6-10mm : grade 2 or grade 3

Or >10mm any grade

And ER+ HER2 negative

And N0 or N1mic (<2mm): Yes (Block 1N)"

The above reflects your institution's internal general selection criteria for the test, which appear to consider age; specific tumor size and grade categories; hormone-receptor status; HER2 status; and lymph node status.

The commercial manufacturer of the test (Genomic Health) provides rather broad "formal eligibility" requirements. Compared to those, clinical consensus guidelines from NCCN and ASCO have somewhat more stringent recommendations. Some hospitals impose additional internal selection criteria. All of these address the typical case, and there may be appropriate exceptions to what they provide in the individual case.

In your case there was multifocal disease:

"Tumor Focality multiple Foc[i] of invasive carcinoma

26mm 14mm 5mm 4mm 3mm 2.5 mm"

- Not testing tumors that are 5 mm, 4 mm, 3 mm or 2.5 mm in size appears to be consistent with NCCN guidelines and internal criteria.

- But, individually, the 26mm and 14mm tumors meet "formal eligibility" requirements of the Oncotype test provider, consensus guidelines, and internal criteria.

- Some members here with multifocal unilateral disease or with bilateral disease have received Oncotype testing on two different tumors. [[[[[[[[[[[[[ This may not be indicated in all cases. With bilateral disease, tumors in different breasts are clearly independent, which can warrant separate Oncotype testing. With unilateral disease, it is possible that other cases may differ in some material way from yours, such as fewer foci and/or other factors which may or may not be present in your situation (e.g., two tumors of clearly differing histology?).]]]]]]]]]]]]]

You are entitled to a reasoned explanation of why your MO judges that the test is not indicated in your particular case. If you wish, you may choose to pursue one or more of the following:

(1) Seek further explanation from your MO and take notes:

(2) Ask if your hospital has a multidisciplinary "Tumor Board" and request review your treatment plan, including the recommendation for TC (without Oncotype testing). There is clearly time to take this step at least.

(3) Ask you MO if there is time to seek a second opinion (probably yes), possibly run the test (if recommended), and timely initiate chemotherapy, if the current recommendation is confirmed by a second opinion. If so, seek a second opinion at an independent institution. (Note: I do not know what would be considered timely initiation of chemotherapy in your particular case.)

As a layperson with no medical training, I don't know the answers to these sorts questions, but seeking further consultation with your MO, input from the Tumor Board, and/or a second opinion may be options for gaining a better understanding and possible confirmation of the advice received.

Best,

BarredOwl

P.S., If you are worried about Taxotere, you may wish to inquire about cold capping.

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[EDITED SUBSTANTIVELY as follows:

(1) ADDED text in square brackets above: [[[[[[[[[ Text ]]]]]]]]]

(2) DELETED the text below and replaced it with revised text shown in curly brackets above: {{{{{{{{{{{ Text }}}}}}}}}:

===> Please confirm that the ER+ PR+ HER2- status of all six (6) tumors was determined, and whether this was done using core biopsy and/or surgical samples. Consult the relevant report(s) to verify.

(In contrast, it appears that HER2-negative status was initially determined by IHC on biopsy samples, and was then confirmed on surgical samples using FISH testing.)

Hi Tracy:

It says ER, PR and HER2 were done on things found in the biopsy. The Brockton path report may explain how they determined the ER and PR.

BI clearly did its own HER2 test (FISH).

Since the above is not complete, it is hard to be sure whether BI did its own ER and PR test. The complete report may have this info.

Then, you have to look at the combined findings of both reports, and figure out what was determined re ER, PR and HER2 for each of the six tumors. Ask for help from you team, if unclear.

I'd ask your MO to help youobtain Tumor Board review.

BarredOwl

I noticed you edited your post, so I had to edit mine. Please follow up with your team. They are the ones with access to all available information and the ones with the professional expertise needed to clarify the situation.

BarredOwl

TracyinMass.... Please don't go into any treatment until it makes sense to you. Don't want to scare you but I do want to offer an honest (to me) opinion on Taxotere.. I did NOT get my hair back after Taxotere. That was 2011, at the age of 46, before it became public information as a possible side effect. To say it Drastically changed my life is an understatement. I also still have crippling neuropathy in my feet and am unable to wear closed toed shoes or stand on my feet for much longer that 1 hour. Yes, Taxotere 'can' save lives, but I also just lost 2 young (50 & 51) friends that did Taxotere, but unfortunately it did not save them. I just think we should know all of the potential side effects, short and long term, before we are rushed into any decision. You can use cold caps and ice your fingers and toes if going through Taxotere. You can ask for a milder chemo like CMF or Taxol, without the permanent hairloss risk. I would certainly demand an Oncotype or Mamoprint test. At the end of the day, it's a crappy decision to have to make, but it's even crappier when we don't know all the facts. Best of luck to you!

Hi Tracy:

I substantively revised two posts above in light of the following.

NCCN guidelines (Version 4.2017) indicate that an invasive tumor should be tested for ER, PR, and HER2 status. However, NCCN guidelines do NOT appear to specifically address multifocal tumors, which represent a specialized situation, necessitating some revision above.

ASCO/CAP Guidelines (2010) for ER and PR testing provide: "For patients with multiple synchronous tumors, testing should be performed on at least one of the tumors, preferably the largest."

In contrast, the ASCO/CAP guideline for HER2 testing (Wolff (2013)) does not appear to provide specific recommendations re multifocal disease, according to East (2015) (free pdf available):

>>> "Estrogen receptor (ER), progesterone receptor (PR), and HER-2/neu (HER2) status provides crucial prognostic and predictive information for patients with breast cancer. In the case of multifocal invasive breast cancer, the American Society of Clinical Oncology (ASCO) and College of American Pathology (CAP) guidelines recommend ER/PR analysis on "at least one of the tumors, preferably the largest,"[18] whereas HER2 guidelines do not provide specific recommendations.[19]"

Distinct from guidelines, CAP also provides "templates" for use or adaptation by pathologists:

>>> "The CAP biomarker template further recommends testing of additional smaller foci if they have different histology or grade than the largest focus.[20] However, others advocate for the testing of additional or even all foci, regardless of histology or grade, due to possible tumor heterogeneity and the potential to provide life-saving therapies that may not have been recommended based on testing of a single (largest) tumor.[21,22] In practice, testing additional foci is variable."

Just above the Reference list, Figure 2 of East (2015) provides an illustration of a suggested approach to ER/PR testing (left) and to HER2 testing (right) in multifocal disease.

Guidelines and publications such as East (2015) may or may not fully capture the most recent information and most current best practices, which might reflect a combination of guidelines and subsequent publications. This can make it difficult for layperson patients to assess this (as well as how it should be applied in the particular case), and we must rely to some extent on the expert professionals who advise us, particularly in more specialized cases.

It is important to understand what testing was done, and reasonable to request review and inquire if the scope of testing was sufficient, or if more testing may be indicated or not. In more specialized situations, where judgment and/or possible differences in practice are in play, reasonable minds may differ on these matters. The same would apply to whether an Oncotype test is indicated or not in your particular situation. In such cases, obtaining the input of the Tumor Board and/or a second opinion can be helpful.

I apologize for the errors in my prior posts, and any confusion I may have caused.

BarredOwl

Hi Tracy:

When the results of ER, PR and/or HER2 testing are unclear or they suspect tumor heterogeneity (areas in the same tumor with differing features), they can use another portion of a tumor for additional ER, PR, or HER2 testing. So I think additional tests are possible, if for example you wished to have the ER and PR status of the largest tumor determined at BI.

A variety of factors support recommendations for chemotherapy. Because of that, in my Feb 15, 2018 03:17PM post, I recommended you ask your MO to explain the basis for the recommendation in your case:

(a) Request a list of the specific clinical and pathologic criteria that support her recommendation for chemotherapy in your particular case, and estimated distant recurrence risk. Which tumors are driving this recommendation?

(b) Ask what is known about how multifocal disease may impact distant recurrence risk profile, and how this factor was weighed in your case (with six tumors).

BarredOwl

[Edit: added bold font]