Wanting to reject the option of Aromatase inhibitors

rgiuff

Caroline, I see that you are getting zoladex, which would mean that you must still be premenopausal.  So, just wondering why not tamoxifen?  With that, you wouldn't need to be on zoladex and maybe you wouldn't have all the pain issues that come with the AI.

DianaNM

Hap, please keep us updated. I'm very interested because I'm going through the same process. 

I was not told that the Mammaprint was an option after my surgery, my surgeon only offered the Oncotype. My score was 25, but it indicated chemo would be no benefit because of my very high ER+ status.

I am also PR+, Her2-, and no lymph involvement. But here's the kicker, I had a very high mitotic score (like you) and a Grade 3. So I called my MO this week to ask about my ki-67 score and if I am considered luminal A or B. She said they don't use ki-67, but I would be considered a luminal B!

I've been freaking out all week, and reconsidering trying the Femara. I can't get it straight in my head if the Femara will actually do anything to help in my case. I have a very low estrogen count, it was 3.9 without meds. I have autoimmune conditions that already cause me to have the symptoms associated with AI's, I assume actually taking it would make things worse. And I tend to get the anaphylactic reactions to meds.

Sigh. Wishing someone who understands my whole picture would tell me what to do. Doesn't mean I would listen though. 

mybee333

What would be considered a high mitotic score?  I didn't get a Ki67 either. We didn't do a mammaprint; I don't know anything about Lumina.... ? 

My dx is similar to yours however, I am PR - , making the cancer slightly more aggressive, I hear. Smaller tumor put me at Stage 1.

I have started Femara.  Took my 3rd pill this morning. Thought I may as well give this one a try.

hap_k

Diana,

Sorry, we went to the beach for a week to get a sanity break. Have not been on here.

I have little to report as yet. I am actually getting both the Oncotype & the Mammaprint (Symphony) test by accident. The Oncotype should have been cancelled. Anyway they just told me that I am High Intermediate at 29, but according to the TailorX revisions to Oncotype scoring (says my oncologist), everything over 25 will be considered HIGH RISK. So this week I will have the Mammaprint results to compare. I am expecting to be High Risk. Not what I wanted to hear.

But since I'm very weakly ER+, the hormone blockers may do me no good according to my oncologist. Hoping I will get an answer to that question to how weakly ER+ I am.

That leaves some sort of chemo??? And what type has never been discussed. 

Personally I think not telling a patient about Mammaprint Symphony as an option is the opposite of informed consent. Worth arguing for the test IF you want it. I would & did. But I had to change oncologists.

My brain is fried. Need to back off until I hear more, then take some time to decide. No matter what I may still opt for no chemo. I do not know at this time which way I will jump.

Reading The Emperor of All Maladies: A Biography of Cancer (by an oncologist at Columbia, also a Pulitizer prize winner). A lot the BC  treatments done to women within my lifetime makes my hair stand on end. Still knowledge is power. I want to know more about this challenge facing me, and to me part of the challenge is the US medical profession (some docs & Tx centers are great & some are abysmal, but how do we KNOW the difference).

Good luck with your decision!! Wishing you the very best! And to you, too, Mybee.

Hap

Omaz

Hap - That is a terrific book.  I learned a lot.  Sorry that your score came back high.  It will be interesting to compare it to the mammaprint score, thanks for sharing with us.  I wanted the oncotype done but since my tumor was HER2+ I was considered high risk at the start.  HOpe you had a nice time at the beach!

mybee333

Sounds like a good book.  Wishing you the best with all of this Diana.

Feeling kind of crappy on the Femara.  I made an appt. with a neurologist in Nov. for the constant headache issue (sometimes changes to dizziness).  Sometimes just wish I could sleep more/longer. I'm exhausted. My Dad died and we had his funeral last Friday.  It's been quite a ride.

mybee333

Thank you so much. I appreciate your kind thoughts.  The network of friends I have developed, even informal ones, have been my grace through this whole thing.  It has been a tough month.

I have been taking Femara close to two weeks now.  I am now falling asleep in meetings, while driving, etc.  I fall asleep at 9:30 p.m. or so but wake up after 6 hrs. I can't function like this without jeopardizing my job, getting behind on responsibilities at work and home and really risking my life while driving.  I may take another break as I go through the grieving, go back to Femara again another day.  It is very embarrassing to be falling asleep everywhere I go and looks so unprofessional. I need energy to run my home, 'love' and care for my kids. I am considering another onc. but not sure what she could do reallly.

hap_k

So sorry Mybee--thinking of you.

I got my Oncotype & Mammaprint (Symphony). I am High intermediate  on Oncotype & High on Mammaprint. Worse than that, Mammaprint says I am Basal subtype & Triple Negative. Oncotype does not state subtypes. It says that I am slightly ER positive, not Triple Negative. My path report says I am slightly ER positive. 

I asked Mammaprint about this. Roughly the reply is that while many triple negatives are basal type, they are not "mutually inclusive". Mammaprint measures mRNA via microarray expression, a newer methodology capable of quantitatively measuring all copies of mRNA, while Oncotype measures via PCR (polymerase chain reaction). PCR is a good methodology, but it multiplies copies of the gene, which if you have a "mismeasurement" it would be multiplied. So both tests are good in different ways. 

So depending on which test I and my oncologist believe, I am either weakly ER positve OR Triple Negative & Basal Subtype! Flip a coin???

 The only slightly cheery news on Mammaprint is that Mammaprint says chemo could significantly make my disease free rate higher at 5 years. I am waiting to hear a reply from Mammaprint about what chemo was used to get that improvement. They may not even know. It could just have been reported as generic chemo, so your guess is good as mine. But it surely makes a difference. I am being told to take the Taxotere/Cytoxan regimen. But was that what worked to get a disease free rate significantly higher at 5 years? I do not believe all chemo reimens are the same. Some carry much higher risks.

Especially in light of the following report on the subtypes study:

According to the NY Times, Sept 23, 2012:

"The study’s biggest surprise involved a particularly deadly breast cancer whose tumor cells resemble basal cells of the skin and sweat glands, which are in the deepest layer of the skin. These breast cells form a scaffolding for milk duct cells. This type of cancer is often called triple negative and accounts for a small percentage of breast cancer.

But researchers found that this cancer was entirely different from the other types of breast cancer and much more resembles ovarian cancer and a type of lung cancer.

“It’s incredible,” said Dr. James Ingle of the Mayo Clinic, one of the study’s 348 authors, of the ovarian cancer connection. “It raises the possibility that there may be a common cause.”

There are immediate therapeutic implications. The study gives a biologic reason to try some routine treatments for ovarian cancer instead of a common class of drugs used in breast cancer known as anthracyclines. Anthracyclines, Dr. Ellis said, “are the drugs most breast cancer patients dread because they are associated with heart damage and leukemia.”

A new type of drug, PARP inhibitors, that seems to help squelch ovarian cancers, should also be tried in basal-like breast cancer, Dr. Ellis said.

Basal-like cancers are most prevalent in younger women, in African-Americans and in women with breast cancer genes BRCA1 and BRCA2." [I am none of these.]

Monday I am meeting agian with my onc to ask loads of questions!

What fun we have, girls!

Good night, Hap!

Omaz

hap - That is interesting that they show a difference for the estrogen receptors.  Did you get cell surface staining results for estrogen receptors on your pathology?  That would be even a different source. I only had the staining.

hap_k

Omaz, My biopsy pathology says I am weakly ER positive, my tumor biopsy says I am weakly ER+, but my oncologist says staining is less likely to be right than the genes. But the two genetic tests do not agree. so....??? However the best case scenario in any event is that am only very weakly ER+ or just on the line bewtween +/-   So will Tamoxifan have ANY benefit, I wonder?

As for the chemo, sounds like my oncologist is just eager to throw something at my Cancer beast if it's as bad as Mammaprint says it can be. And in case Mammaprint is wrong, then he will also throw Hormone Blockers at it. Cover all the bases.

Hmmmm--so I've gone from a nice quiet Stage 1, clean margins, 0/4 lymph nodes, to " Red Alert! Fire the Phasars! Mr. Sulu, we are under attack!" 

Hap

fmaury

This is a belated response to Rose. I chose an AI over Tamoxifem because I worry about blot clots (my work involves long haul travel) and I have some artery calcification that puts me at slightly elevated risk of heart disease. That said if SE are too hard to deal with I might condider Tamoxifen. Although I have to be on Zoladex I was almost menopausal. Part of me wonders whether being on both zoladex and Arimidex doesn't compound side effects...

rgiuff

Fmaury, I was also premenopausal during the first 2 years on tamoxifen, but never got any zoladex or lupron. I have no experience with either of these, but would imagine that either one would compound whatever effects the AI or tamoxifen are causing.

Rhasslairiel

Hello all, this is the first time I have posted on this website. I too, am very scared about Aromatase Inhibitors. I am on Tamoxifen now, but my onc is monitoring my FSH levels closely, and wants me on an AI as soon as it is indicated.

My main fear is the pain. I know not everyone gets it, but I know I'm more likely to have it since I did chemo. I had a very difficult time with Taxol, it just beat me up until I thought I was going to die. I still have pain from Taxol, and the thought of additional pain just terrifies me. I have practically zero tolerance for pain. Any kind of NSAID gives me stomach problems, and gastroprotective agents like Proton Pump inhibitors give me problems as well. And I can't take opiates every day, since I'm a busy mom who drives all over the place. I have tried Nortriptyline and Gabapentin, but I had hallucinations and other bad side effects.

And then there are the cardiovascular issues, bone problems (I am slightly neutropenic), the sexual side effects and so on. But then again, I was stage 3 with four positive nodes, and am at higher risk for recurrence. It seems like there is no solution for me, and it is making me feel very down and hopeless. I have a routine followup next month, and I have a list of about 50 questions to ask the doctor. I also want to formulate a personalized clinical algorithm with her for treating side effects, but it seems like every standard solution is not an option for me.

So I guess my main question is if anyone here has gotten AI pain relief through an unconventional method, or off label usage of a certain drug. I really want to lower my risk by taking an AI, but the logistics of it all just seem like a tangled mess. I do exercise about six days a week-running, swimming, and yoga.

SpecialK

rhasslairie - I started on Femara and did have joint pain, then switched to Arimidex, and experienced much less joint/bone pain.  I started taking Claritin at night and Arimidex in the morning, and also went gluten free with diet and had a marked decrease in joint/bone pain.  I have been taking Arimidex for about six months and find things very tolerable.  I did experience some bone loss during chemo and Femara (I was osteopenic prior to BC), so my onc added Prolia injections every 6 months to stabilize, and potentially improve, my osteopenia.  I have some stiffness on waking and if I sit in one position for too long - but it is really very minor.

Claire_in_Seattle

Rhasslairiel - I think the biggest thing you can do to ward off pain is exercise.  Anyway, I have very few of the AI side effects, and I am past the half way point.  I am stronger and fitter than at any time in my adult life.

I am sorry that Taxol hurt.  I had some pain too, and found that exercise helped.

I find that if I don't exercise, I feel sluggish and my brain goes soft.  Plus my body starts to get a shape I don't like.

I sleep just fine, and my libido is in tip top shape.

Finally, exercise is critical for preserving bone strength, which is the big worry everyone has.  Again, mine is just fine.  Good luck, and make sure you do what you need medically. - Claire

Ming100

Hap, Thank you for sharing the info. I have stage 1A IDC, ER+, PR+, & HER2-. My Oncotype RS is 24. My MammaPrint shows I'm low risk (Luminal-A) but my Pathology report shows Luminal-B (high risk), ki67= 25%, and tumor grade is high 2. Do you have any insight into why the discordance between MammaPrint and my Pathology report ? My MO does not even talk about MammaPrint which was ordered by my 2nd opinion doctor.



I already started my 1st cycle of chemo (taxoterer & Cytaxon, every 3 weeks for 4 cycles). But I really want to quit, I don't believe the benefits potential 3% will outweigh the risks...Do you know if we can quit chemo once we started, will there be any horror adverse effects/harm to our body? Hope to hear from you soon. Best of Luck to you!!!

pupmom

I haven't really had any pain on Aromasin. I do exercise about one hour per day. 

hap_k

Ming, Back when I was researching all this, I could have explained in detail why you would get different results on Mammaprint than on your path report. Now I have been trying to concentrate on wellness and have forgotten soooo much.  Roughly speaking, the path reports depends on staining slides, a small delay by the person staining the slide and you get a different reading. Genomic tests work differently. Google Mammaprint, especially look at European information. It is the most popular genomic test in Europe. Very well researched. Also search for some of my other posts on breastcancer.org. I had a lot to say about Mammaprint/Symphony and give links to info.

As for the chemo, I finished 4 rounds of Taxotere & Cytoxan. It was tough--really tough, but now is just a fading memory. Frankly, I am glad I finished it. Walking helped me get through it! Now I am very fit & feeling great. Onc says I am in the wellness phase, so I am going for it. Hiking, walking, digging like a nut in my garden! Wishing you the very best & that by this time next year you will be happy to be done & not looking back.

Hap

LilacBlue

Hap, so good to read you and in fit - well recovery no less.  My best to you regarding autumn harvest - salute beauty.

corky60

This is an important topic and it's good to see this thread active again. Like others I wanted to reject AIs. But our local cancer care alliance posted an online survey. I filled it out as I would have the day before my last mammogram (when the lesion was detected.) According to the survey I had only a 1.4% chance of developing BC, less than other women my age. And yet here I am! That got me thinking that I would at least try Aromasin. It's only been six days and already my eyes are dry. But I've had that before and know how to treat it. One day at a time is my motto...

lmnSeattle

Dear Corky60,

I'm writing, hoping to find out from you how you're doing now. It's been 15 months since my ILC stage II & DCIS (other breast) diagnosis and aromatase inhibitors cause me severe depression. If you're still communicating on this blog, I'd like to hear if you used any other method to help lower your risk of repeat estrogen+ cancer such as DIM supplements?

I'm also in Seattle, and was originally with an SCCA oncologist but my experience was an almost casual approach, the dr saying there was no need for annual tests to monitor for reoccurrence as she could detect most issues simply by palpating, or with blood tests, or by any symptoms I might report. She was adamantly confident in her approach by I was not. I switched to Swedish Cancer Institute, and am very happy with the nurturing care and testing when I am concerned.

Anyway, I hope you're doing wonderfully!

LMN

dtad

Just to let you know I refused anti hormone therapy from the start for many reasons. Please feel free to PM if you want to discuss details. Good luck to all...

Princess_Meg

Hi Omaz. I noticed this is an old thread but i really want to know how you are doing now. Our diagnosis is same. Thanks and hoping to hear from you