Mother terrified of Adriamyacin

GinaDexter1982

Hi,

I'm so sorry but I'm trapped at home in a blizzard and I need to rant a bit. My mother had her re excision lumpectomy on 1/27/17 and we got back the results of the pathology report saying that the tumor was Grade 3 with pre cancer cells left in her body. They are recommending the standard 8 weeks of Adriamyacin followed by 12 to 16 weeks of Taxol and then a few weeks of recovery to start the radiation. She has two oncologists, a surgeon, and two radiologists all looking at her case and they have all said the same thing. She has asked about just doing the Taxol, which the docs said they could do for her but they are pushing the Adriamyacin because of the aggressiveness of the cancer, which I understand.

My mom is scared of the Adriamyacin. She has done a ton of reading, spoken to several other women that have been on the drug and they have all told her that if she can avoid it, avoid it. She's terrified of the 'chemo brain' which what I have read, only 2-7% of women have lasting effects, she's scared she won't be able to take care of herself after a year, etc. A friend of mine who's mother went thru this at 40 years old is still feeling effects of it 10 years later. I've been trying to get ahold of both oncologists but both phone lines are either off the hook or constantly busy and no one is returning my calls.

Grade 3 IDC, Stage 1
With chemo, chance of recurrence is 10% over 10 years
Without chemo, chance of recurrence is 24% over 10 years.

Has anyone decided to do just the Taxol? Can anyone give some advice on what to do? I know you guys are not doctors, you're survivors and I trust your opinions a bit more now. Should she just do the Taxol and see what happens because I am terrified that she is going to work herself up into such a panic that it will not work either way and just make her really sick. I'm sorry, I know I sound like an awful daughter but I really want to keep my mother and I am really scared that she will just walk away from all of this. I've asked her to come onto here and she refuses.

Any advice would be greatly appreciated. Thank you.

Gina

KayaRose

Hi Gina, I don't know how old your mother is or in what physical condition she is in but I had the Adriamyacin and can say it is not easy but I got through it. I was 65 when I was diagnosed. I went through chemo first, then had a mastectomy and then did 33 radiation treatments. I'm now on anastrozole. I was relatively healthy before starting treatments. I had a bit of high blood pressure and was about 10-15 pounds overweight.

Before beginning the Adriamyacin I had a heart test called MUGA. It tests how well your heart pumps blood. If that test had not come back within normal ranges, I would not have been able to take the Adriamyacin.

I came out of the Adriamyacin ok - no permanent damage. Main problems while going through it were fatigue, no appetite and when I did eat, everything tasted awful, some nausea but controllable by meds, constipation, etc. I slept a lot. After each treatment I was given a shot of Neulasta. It helps to fight off infections. Neulasta can cause some bone and joint pain for a couple of days. I had blood work done prior to each treatment and if my counts were too low, they would not have given me the treatment. That happened one time. I had developed a fever and a lung infection. I was given a blood transfusion and antibiotics and was well enough the following week to have my treatment. Like I said, not easy but I got through it and I'm glad I did. I had to do everything I could to fight the cancer.

The taxol was easier overall but I was always fatigued. Also developed some Neuropathy in my fingers and toes.

Do some reading on one of the monthly chemo threads. You'll find lots of women going through AC/T and might get a better feel for what it's actually like reading their first hand accounts.

Best of luck to your mom whatever her decision.

sisterhasbc

Hello. My sister, age 60, recently finished 8 weeks of AC and will start Taxol tomorrow. She also does not go on these boards as she read sometimes it is better not to do so, so I go on and pick up what advice I can.

She was absolutely terrified about having chemo but on the whole tolerated AC pretty well and while it was not easy I do not think it was nearly as dreadful as she imagined and I can remember how relieved both she and I were after her first treatment. She would feel "ick" starting a couple of days after and would start to feel better in the days preceding her next treatment but never actually threw up. She did get the fatigue as well but she was able to still go out and do things, particularly in the week preceding her next treatment. They did an echocardiogram before treatment began and one after and there were no changes. She did say she experienced chemo brain but I don't think it was that pronounced and outwardly she did not seem mentally diminished to me. Her blood counts remained pretty stable. Her taste was off and it affected her appetite to some extent but not to the point where she couldn't eat (she actually got strange cravings at times--after the first treatment she kept wanting ham sandwiches). She also had some difficulty swallowing, but again it would pass by the time her next treatment was due.

In reading these discussions the common thread I see among those who have had AC is that it is not fun but it is doable. Perhaps if you or your mom can talk to some people who have gone through AC it would help.

Best wishes to you and your mom.

ElaineTherese

Hi!

Is your mom triple negative (ER-/PR-/HER2-) or HER2+? If so, then her cancer is aggressive and needs an aggressive treatment. I was diagnosed with Grade 3 triple positive (ER+/PR+/HER2+) cancer, so ended up doing 5 months of chemo, then surgery, then radiation and twelve months of targeted therapy (Herceptin), and now hormonal therapy for ten years.

If your mom is ER+/PR+/HER2-, the most common form of BC, her doctors should have ordered an Oncotype test, which can indicate whether the benefits of chemo outweigh the risks.

I did Adriamycin and Cytoxan, and it wasn't that bad. I worked through chemo and radiation and I'm still here. But, I was probably younger than your Mom (age 46).

((HUGS))

GinaDexter1982

HI Elaine,

Here's the information I have.

ER/PR+/HER2-
Stage 1, IDC, tumor at 1.8 cm
60 years of age
Grade 3 tumor
Negative nodes
Oncotype 36 out of 50. (It is out of 50 right?)
Her chances of recurrence with chemo and tamoxifen - 10%, without chemo and just radiation and tamoxifen 24%

Those statistics don't add up to me. I've been trying to get a hold of these doctors to talk to them, my mom literally starts crying every time she talks to them, but no one is returning my calls and I am stuck in a blizzard at the moment so I can't drive to their offices just yet. Why are the statistics of recurrence so low if her cancer is supposed to be so aggressive? That is what I cannot understand. And I'm sorry, I know you guys aren't doctors, this is more of just a rant.

ElaineTherese

Well, an oncotype of 36 would typically result in a recommendation of chemo, so there's that. But, I also believe that hormonal therapy is powerful medication. There are women who are Stage IV -- cancer has spread to the bones, liver, lungs, brain, etc. -- who witness a disappearance of their cancer, merely because they are taking hormonal therapy like Aromasin or Letrozole.

Taxol is better than no chemo, but remember: estrogen is feeding your Mom's cancer. An estrogen sucking drug (ESD) like an AI (I'm on aromasin) can be very powerful medication in and of itself. I think that Taxol and an AI could produce a reduction in your Mom's cancer, regardless of whether she does Adriamycin/Cytoxin. By the way, I'm not a doctor, so I'm not a super-authority or anything. I'm just impressed at how well AIs work in Stage IV ladies.

Icietla

Hi GinaDexter1982. I am so sorry about your mother's diagnosis. I know this is an anxious, awful time for both of you.

Here is a good BCO article on OncotypeDx scores:

http://www.breastcancer.org/symptoms/testing/types/oncotype_dx

I think what may be confusing you is all the difference that Endocrine Therapy can make with IHC characteristics like hers (ER+,PR+, HER2-). Notice that each of those OncotypeDx Recurrence Scores assumes a full course of Endocrine Therapy. Without the (very likely benefit of) Endocrine Therapy, the recurrence probability would be significantly higher.

Has your mom authorized her Health Care Providers to discuss her case with you? They might be snowed-in, too.

GinaDexter1982

lcietla, No one mentioned Endocrine therapy at ALL. I will have to look that up, that is something new. Thank you.

GinaDexter1982

Oh I feel stupid now. You meant hormone therapy. Yes, both oncologists were talking about putting her on Tamoxifen, that was included in her statistics for chances of reccurence. Sorry about that! And thank you.

wallan

Hi there:

I was 41 when I was first dx with BC. Stage 2b/3a 13 years ago. I had AC and taxol back then. On the AC, I felt tired and nauseous. It did not affect my heart MUGA test. I had that before the AC and then tested after. I did have some chemo brain - a bit of short term memory recall. I was told to be "gentle with myself". I rebounded fairly quickly. Within a few years, my chemobrain had diminished and no obvious lasting physical effects from the chemo. Like I said, its been 13 years now, and I am healthy physically.

wallan

Icietla

Well, what we are talking about is commonly referred to as "hormonal therapy," but I think (?) that term is properly used for treatment with (actual) hormones, not these anti-hormone medicines to defeat the hormones or their effects, see.

Do not feel stupid -- You are not! And you probably know more already than most people know about breast cancer.

Please do stay with us here at BCO and continue reading to learn more. Many of us adopt special dietary restrictions, depending on our own tumor characteristics, in case our dietary practices might afford us any advantage as to recurrence and/or survival. Even if your mom never joins as a member, you could pass along to her much that would likely be of interest to her.

Back soon.

Icietla

At this linked web page is a form you can use to request a free lymphedema risk alert band for your mom. It will likely take several weeks to arrive by mail. Once she has the alert band, it would be a good idea for her to wear it for any medical appointments or procedures, as a conspicuous reminder not to use her at-risk arm for blood pressure readings, blood draws, injections, etc.

http://lymphedema.com/alertform.htm

ChiSandy

60 is young enough to be able to get through chemo. Those survival statistics, I think, go out only as far as 10 (maybe 15) years; but the difference between 10% and 24% recurrence is dramatic. And bearing in mind that the anti-hormonal in those charts is Tamoxifen, and that aromatase inhibitors (AIs) are even more effective than Tamoxifen, that 10% recurrence chance might actually be a point or two lower on an AI plus chemo than Tamoxifen plus chemo. Any reason why your mom’s doctors are recommending Tamoxifen and not an AI, considering that at 60 she’s postmenopausal? Tamoxifen keeps estrogen from getting into the tumor cells’ estrogen receptors (regardless of what part of the body is making estrogen); AIs actually reduce the fat cells’ and adrenal glands’ ability to make estrogen (yes, even without functioning ovaries we still have estrogen) by interfering with the liver enzyme aromatase, which is what converts the androgens made by the fat cells and adrenals into estrogens.

GinaDexter1982

ChiSandy, Thank you so much for bringing that to my attention. I have not heard about AI until now. I will have to check that out and bring it up to her doctors. They were pushing Tamoxifen for her because it was the standard therapy that they did once the patient is post radiation and/or chemotherapy. Thank you!

Hopeful82014

Gina, since your mother's so concerned about adriamycin, would her MO consider TC instead? AC-T is probably a bit more efficacious but TC is widely used as well.

Just my opinion, but if her MDs were talking exclusively about Tamoxifen rather than AIs, I would consider a second opinion.

aterry

GinaDexter1982, I agree that 60 is young. I'm 67 and I did AC and now have done 11/12 Taxol. AC is not fun but if your mom learns to handle the side effects it will be doable. It's important to know that everyone experiences the side effects differently. Also if you and she can plan for support during the 8 weeks of AC that will help. If someone comes in to help with meals and cleaning that will go a long way to getting her through. I have experienced chemo brain, even on Taxol, but it ebbs as the week progresses so I'm confident I'll bounce back when chemo is over. I agree with Hopeful82014 that a second opinion could be in order and at least a discussion of TC. I think it is not a good sign that the drs are so hard to reach. Are you dealing with a major cancer center? I'm being treated at the Dubin Center/Mt Sinai and they are very responsive which helps my state of mind. At first I was working with a dr on Long Island but when he didn't respond to my requests to discuss the results of an MRI, which were different than the results of my ultrasound, I switched to Dubin where the surgeon & MO spent a full hour going over the tests with me. I also agree that 10% is a much better prognosis than 24%, especially if those numbers are confirmed in a second opinion.

Spookiesmom

I did 4 rounds a/c. Had most of the usual se. Had the nulasta shot. No problems with that. Had the MUGA prior to a/c. No problem there then, or 5years later Had a small bit of chemo brain. When I drew a blank I'd giggle, say stupid chemo brain, and keep going. I was 63 at dx.

Not fun, but doable.

dlb823

Gina, I would strongly recommend a second opinion at an NCI-designated cancer center. These are the places that see the most breast (and other) cancer(s), so will have the most experience with women who fall into a similar subset as your Mom. And I could be totally wrong, but I strongly suspect they will recommend TC x 4 over a regimen containing Adriamycin, even for a very youthful 60 year old, due to some of the risks that rightfully concern your Mom. https://www.cancer.gov/research/nci-role/cancer-ce...

The recommendation for Tamoxifen vs. an A/I doesn't sound quite right to me either, and as Elalne pointed out above, an A/I can actually be more powerful than chemo, so is a very important component to get right in her total treatment. Absolutely time for a second opinion, which hopefully will also dispel much of the fear and sadness your Mom is dealing with, when she hears from docs whose recommendations she trusts more than perhaps what she's heard so far.

(((Hugs))) to you both. Deanna

gracie22

Agree with ChiSandy and dlb823. Also, what does "pre cancer cells left in her body" mean? If the surgical margins show cancer cells, the surgeon typically does another procedure to try and clear them (another surgery like the lumpectomy, but targeted to the surrounding tissue), or recommends a mastectomy help ensure that all cancer cells are removed. For ER/PR+ patients like your mom, a surgery with clear margins "cures" approximately 70% of the time; the chemo is "insurance" and hopefully kills any cells that may have escaped from the breast via the bloodstream or the lymph nodes. Since her nodes were clear, transmission via nodes is likely not an issue, but cells can still travel through the bloodstream hence the chemo recommendation. The Oncotype scale is based on 100, not 50, Google the Oncotype test for more info. Believe it or not, your mom is in pretty good shape. Not a huge tumor, clear nodes, and if there are any cancer cells left they should be responsive to chemo (if she chooses it, and some in her position do not, though I won't get into cancer stem cells as that is a whole 'nother issue--some schools of thought say that they are un-killable), and her cells will likely be responsive to AIs which are typically given to a post-menopausal woman (not tamoxifen). Really, statistically, she is very likely to have many years before her. Many of us would happily trade for her diagnosis.

Denise-G

I WHOLEHEARTEDLY agree with dlb823 and Hopeful who suggested your mom get a second opinion especially at an NCI Designated Cancer Center. I AM A HUGE advocate of this after myself, my mom and sister were all diagnosed with BC within 3 years. What our local hospital said vs. what we were told at Univ of Michigan, an NCI Designated Cancer Center, were very different. It has been worth every mile driven for all of us to have this care. Not to say your mom cannot have care at home, but to get opinion of these hospitals is such a benefit.

Certainly, your mom could get through Adriamycin at 60. But heart issues are a huge factor to consider. I had a heart attack at age 55 during Adriamycin. My sister also had heart damage due to Adriamycin. We wouldn't change a thing, but Adriamycin is known for its heart damage. All factors to consider.

GinaDexter1982

HELLO!

Oh my gosh, all of this information is amazing, thank you all so much. I will make sure to bring this up to the doctors.

We have had two oncologists from different cancer centers look at my mom's case and they have both come to the same conclusion – the information I stated above. But the second doctor insisted that the Oncotype was out of 50 and when I googled it, it said it was out of 50? I understand that they do two tests, one for chemo and one for radiation and he told me that the one that they performed on her to determine if she needed chemotherapy was out of 50.

We live in upstate NY and the nearest cancer center that you guys speak out of is 120 miles away so we really cannot do that.

She had her first mammogram six months from diagnosis the other day and everything came back clean as a whistle. Huge plus there. Her BRCA tests came back negative as well but the doctor informed me that one gene that was not related to breast cancer came back positive? He gave me a bunch of mumbo jumbo over the phone and I couldn't understand what he meant. Does anyone have any idea?

My mother has decided that after she receives an MRI to do a full scan on her body, if that comes back clean that she will not do the Adriamyacin and she will just do Taxol. Has anyone decided to do that? Forgo the AC and just do Taxol?

GinaDexter1982

Hi Gracie!

Can you direct me to any good websites on AIs? I've been looking around and I don't think I am looking in the right place because no information is coming up. And are AIs only available at these cancer centers or can the doctor that does the chemotherapy administer them? Thank you so much!

Connie1230

I went through AC at 67 and had no side effects that were unmanageable. I was given nausea pills and took them faithfully so that wasn't an issue. I am still going through taxol after having to drop carboplatin due to continued platelet issues so I am still going through chemo (2 more left). Exhaustion has been my biggest issue but the low platelet counts are responsible for the severity of that. Exhaustion is pretty common and to be expected. I have has a touch of chemo brain but mine is primarily an inability to come up with a name immediately. It hasn't prevented me from leading a very normal life

Wildplaces

Hi Gina,

It would be worth asking how they came up with those recurrence stats - most people use a predictive tool that allow you to compute your data. Like Magee Equations or predict.nhs.uk

Grade - is taken by some as a measure of " aggressiveness" - and the number refers to how fast cells replicate as evidence by shape, nuclei and mitochondria.So yes the cells might be dividing quickly - good thing that is what chemo drugs attack - but other factors such as size, receptor, no nodes is what gives better numbers for recurrence.

They are certainly alternatives to Doxorubicin ( Adriamycin)

Chemotherapy regimens for second stage breast cancer is classified into " generations" 1,2,3 rd.

The higher the number the "tougher" the drugs - but there is also individual variation in response.

Oncs should be able to quote you recurrence rates for a specific chemo regimen - from memory predict.nhs lets you pop that information in.

Epirubicin is another anthracycline and some studies claim less cardiac effects.

I am 49 and did AC/Taxol and I would do it again if "I had to". The Taxol is an easier chemo drug to tolerate bar any allergic reactions to it.

On the second opinion - if in doubt ask again and summon the energy to keep asking until you are comfortable

alsgirl

Gina, I am 74 years old with triple negative breast cancer. I just had my first infusion of adriamycin and cytoxan last Friday. I was terrified also but am amazed at how well it all went. The infusion itself only takes about 2 1/2 hours. They gave me so many anti nausea medications before hand and others to take home that I have had no nausea whatsoever. I didn't even take them all. the biggest side effect has been fatigue. By 9 p.m. at night, I am wiped out which is unusual for me because I'm a night owl. I'm actually amazed at how good I feel.

Jackster51

I think your mom should be heard. I see no reason for an alternative to Adriamycin to be offered. These side effects are real, and doctors are the last to acknowledge them. All the best to you both.

gracie22

Gina, Google using Aromatase Inhibitors instead of AI, and any oncologist can prescribe them. A couple of general info articles from this website below--could not hot link you will have to cut and paste. Also, just my opinion, i would definitely get a second opinion even if it is 120 miles away especially since the current docs don't seem to be communicating very well. Your mom does not have to get her treatment at the far away place, just an opinion. It is pretty typical to get second opinion after a cancer diagnosis especially when your initial doc is not affiliated with an NCI designated cancer center. On the genetic info the doctor spoke to you about, ask him to repeat it and/or provide it in writing. The "mumbo jumbo" sounds as if it was your doc trying to let you know that your mother's genetic tests show that she may be susceptible to another disease (whether another type of cancer or something completely different.) That is important, you need to follow up with him on that and make sure you are getting written reports on your mom in addition to conversations. Most docs use an online patient portal and archive reports there. You/your mom can access info from them assuming your doc keeps digital records this way. Good luck!

http://www.breastcancer.org/symptoms/testing/types/oncotype_dx

http://www.breastcancer.org/treatment/hormonal/aromatase_inhibitors

BarredOwl

"ER/PR+/HER2-
Stage 1, IDC, tumor at 1.8 cm
60 years of age
Grade 3 tumor
Negative nodes
Oncotype 36 out of 50. (It is out of 50 right?)
Her chances of recurrence with chemo and tamoxifen - 10%, without chemo and just radiation and tamoxifen 24%"

---

Hi GinaDexter1982:

Be sure to obtain a copy of your Mom's node-negative (N0) OncotypeDX report for your/her review and records. It is essential to confirm the information provided about her Recurrence Score against the actual report itself (and not a summary in a patient portal), since the recommendation for added chemotherapy is based in large part on this result.

(1) Source of the 24% Risk Estimate with Tam Alone:

Please confirm it, but the 24% estimate with Tamoxifen alone was probably taken directly from her node-negative (N0) Oncotype report. (See the first graph in her Oncotype report and the Recurrence Risk information printed to the left of first graph on her report.)

For purposes of illustration only, here is a link to a SAMPLE node-negative (N0) report from Genomic Health:

http://breast-cancer.oncotypedx.com/en-US/Professional-Invasive/Ordering/ReadingTheReports/Node-NegativeReport

Here is a screen shot of the first graph in the SAMPLE report for a person with a "Low Risk" Recurrence Score of 10, which is associated with a 10-year Risk of Distant Recurrence (after 5 Years of Tamoxifen) or "Tam Alone" of 7% (printed to the left of the graph):

You can see that 10-year distant recurrence risk (on the vertical Y-axis) increases as Recurrence Score (on the horizontal X-axis) increases.

Eyeballing the graph, a Recurrence Score of 36 looks to be associated with about a 10-year risk of distant recurrence of about 24%. ===> Please check your Mom's report to confirm the "10-year Risk of Distant Recurrence with Tam Alone" associated with a score of 36. It will be printed to the left of the first graph.

Please note that this 10-year recurrence risk is the risk of distant (metastatic) recurrence.

The recurrence risk information provided in the first graph of the node-negative (N0) Oncotype report is based on the results of a clinical trial in a group of patients who were assigned to receive 5-years of tamoxifen, and their observed rates of distant recurrence over 10 ten years according to their Recurrence Scores (Paik (2004)). The first graph in the node-negative report is based on Figure 4 of Paik (2004):

Paik (2004): "A Multigene Assay to Predict Recurrence of Tamoxifen-Treated, Node-Negative Breast Cancer"

Main Page: http://www.nejm.org/doi/full/10.1056/NEJMoa041588#t=article

Free PDF: http://www.nejm.org/doi/pdf/10.1056/NEJMoa041588

(2) Range of Possible Recurrence Scores of the OncotypeDX test for invasive breast cancer is 0 to 100

Re: It is out of 50 right?

NO, it is out of 100. Although the first graph only includes scores up to 50, the Recurrence Score can be a value from 0 to 100. There are some members here with Recurrence Scores above 50, although this is not very common.

According to Paik (2004) (linked above), which is the source of the first graph in the report:

"The range of possible recurrence scores was 0 to 100 . . ." (page 2819, first full paragraph)

"The recurrence score on a scale from 0 to 100 is derived from the reference-normalized expression measurements in four steps." (Figure 1, legend)

According to the notes in the sample node-negative report:

"The Recurrence Score result is calculated from the gene expression results and ranges from 0-100." (Second sentence in notes above the graph) This should be printed above the first graph on your Mom's report.

See also, the notes below the first graph of the SAMPLE report above, which indicate the scores are from "0-100":

A score of 31 or higher is considered to be in the standard "high risk" category.

(3) Potential Benefit of Added Chemotherapy:

Please confirm your understanding that the chances of distant recurrence over 10-years "with chemo and tamoxifen - 10%".

Please ask whether her "residual risk" after chemo plus tamoxifen is estimated to be about 10% per your understanding, OR, whether you may have misunderstood and it is estimated that the potential "risk reduction benefit" of added chemotherapy is about 10%.

The node-negative report includes a second graph that addresses potential benefit of added chemotherapy as compared with Tam alone. Here is what it looks like in the SAMPLE node-negative (N0) report on-line:

This data is taken from a different clinical trial (Paik (2006)) that assessed 10-year risk of distant recurrence according to Recurrence Score in two groups of patients who received either: (1) Tamoxifen alone (solid curve); and (2) Tamoxifen plus chemotherapy (dotted curve):

Paik (2006): "Gene Expression and Benefit of Chemotherapy in Women With Node-Negative, Estrogen Receptor–Positive Breast Cancer"

Main Page: http://ascopubs.org/doi/full/10.1200/jco.2005.04.7985

(Free PDF available under "PDF" tab)

The difference between the Y-axis values on these curves for a particular Recurrence Score provides some insight into the potential risk reduction benefit of added chemotherapy for those in the standard "high risk" range.

(4) Endocrine Therapy: Tamoxifen or Aromatase Inhibitors ("AI") for Post-menopausal women

These are pills. Under clinical guidelines from NCCN, adjuvant endocrine therapy is administered after adjuvant chemotherapy.

Post-menopausal women with hormone receptor-positive disease (ER+ and/or PR+) formally have the option of Tamoxifen or an Aromatase Inhibitor (Letrozole (FEMARA); Anastrozole (ARIMIDEX); or Exemestane (AROMASIN)). Both are effective and reasonable options. However, AIs show some advantage when compared with Tamoxifen, based on head-to-head trials comparing various AIs to Tamoxifen. They also have different side effect profiles, so personal medical history, including co-morbidities, are possible factors in the choice.

Although the Oncotype reports currently feature "validation" studies in which Tamoxifen was used, this reflects historical and practical considerations of clinical trial design. In current practice, the use of Oncotype Recurrence Score information does NOT restrict her choice of endocrine therapy.

For example, a later Oncotype "validation" study was conducted in patients who had received 5-years of the aromatase inhibitor Anastrozole. This study used samples and 9-yr recurrence rates from the tamoxifen arm and the anastrozole arms of the ATAC trial, in node-negative and node-positive postmenopausal women with localized breast cancer.

"Prediction of Risk of Distant Recurrence Using the 21-Gene Recurrence Score in Node-Negative and Node-Positive Postmenopausal Patients With Breast Cancer Treated With Anastrozole or Tamoxifen: A TransATAC Study"

Dowsett (2010): http://jco.ascopubs.org/content/28/11/1829.full.pdf

If her MO is recommending Tamoxifen, then ask why Tamoxifen is preferred over an AI in her particular case. If he suggests that an AI is not an option for a person receiving an Oncotype test (which is not true), then you can refer him to Dowsett (2010) or show him a copy, and then seek a second opinion about endocrine therapy.

(5) Second Opinion

Should you wish to seek a second opinion, please do not be deterred by the need for some travel. She can still choose to seek the recommended care locally. One can request the second opinion MO to confer with her treating MO. As noted above, many look for an NCI-designated Cancer Center for a second opinion (confirm in-network):

https://www.cancer.gov/research/nci-role/cancer-centers/find

If traveling for a second opinion, call several days ahead to confirm that all records and materials have been received by the second institution and forwarded to the proper doctors. In addition, take copies of critical documents with you to the appointment, such as all pathology reports from all biopsies and surgeries (any addenda or supplements thereto), including ER, PR and HER2 test results, and a copy of her Oncotype report.

Best wishes,

BarredOwl

GinaDexter1982

Barred Owl,

Wow...thank you so much for all of this. Thank you so so much.

Abby

GinaDexter1982

Does anyone know of any tricks on how to get the cancer center we are going through to agree to my mother using the cold caps there? My mother has been doing a ton of research on the cold caps and is making plans to use them while she does her chemotherapy but the head doctor at the cancer center she is planning to go through told her she could not use them there because he 'fears that the caps would cause a problem to her treatment'. The social worker who had been trying to get him to agree told my mother that it's more of where he doesn't want to upset other patients who are not using them. She is paying for all of this out of pocket. Has anyone else who used the cold caps had to fight to get their doctor to let them use them? Any advice?

dlb823

Gina, there's a thread here specifically about cold caps. It would probably be a good thread to review and re-ask your question. https://community.breastcancer.org/forum/6/topics/...

I didn't use cold caps back in 2008 because my local onc kind of scoffed at the idea as being without merit. Of course, back then, they weren't nearly as known about as they are now, and I think he was basing his bias on older technology, which may not have worked as well as what's available today. Anyway, here's an article I just pulled up for you that mentions oncs at both DF and MSK supporting their use. http://thedetroitsportssite.com/2017/02/16/cancer-...

So I guess the question to your Mother's onc should be, "Where is the research that supports your recommendation against them?"