Considering not taking an anti-hormonal

Ruby3813

Hi Ladies!

I was diagnosed back in February, but now it's 3 weeks after radiation and I'm supposed to start Anastrozole. I admit to being a deer in the headlights at my diagnosis, but now that it's time to start the drug, I'm taking another look at my pathology report. Yes, my BS went over all of this with me back in February, but like I said, my brain wasn't actually functioning. Please tell me what this says to you:

• Estrogen Receptor: Positive (99%)
• Staining Intensity: Strong
• Progesterone Receptor: Positive (38%)
• Staining Intensity: Moderate
• Ki-67 Proliferation Marker: Low (5%)
• Her2: Negative (1+ staining)
• Grade 1 IDC with microcalcifications; 7 mm;
• atypical ductal hyperplasia
• New medial margin, excision: Proliferative fibrocystic changes and sclerosing adenosis. Negative for malignancy.

Another comment that stands out to me is: Final margins uninvolved by invasive carcinoma, distance from closest margin: 3 mm

Thanks for any insight you can give me about what all this means. I really don't want to start the Anastrozole and put the chemical in my body if possible SE's just aren't worth it. I'm 65 and was in, what I thought to be, good health before all of this.

Here's a great article I found that may be of interest to those who are in my same position:

https://elynjacobs.com/2012/09/20/natural-alternatives-to-aromatase-inhibitors/

Thanks!!

Lula73

congrats on finishing radiation! Here's the quick rundown on why they recommend AIs:

Aromatase inhibitors work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells.

So even though they got clear margins and you had radiation, there could still be a few scattered cells that are cancerous. Doing the AI therapy basically takes away the estrogen that your body makes from the androgen hormones and as a result any remaining cancer cells starve and eventually die. your cancer was estrogen positive meaning the cancer fed off the estrogen in your body. Taking the AI takes away any remaining food source for the cancer thereby reducing your risk of recurrence.

I took a look at the website link you referenced. There is a lot of misinformation/outdated information there and she intermixes some of the information between those that are using AIs prophylactically and those that actually had an estrogen positive cancer. And people don't generally die of "Tamoxifen toxicity". The author even states that the content of the article is not medical advice and she does not endorse either option I would talk with your doctor and/or do more research on how much celery and button mushrooms you'd actually have to eat to block the aromatase to the same degree as Pharmaceutical AIs (I bet it's more than you're able to realistically consume everyday.)

Hope this helps clarify things a little.

ElaineTherese

Hi!

You are strongly estrogen positive (99%), so hormonal therapy would be especially helpful to you. However, your lump was tiny and it was Grade 1, not the most aggressive breast cancer out there. I can see where you might want to skip it.

I was also strongly estrogen positive (95%), but I was diagnosed at Stage IIIA, with an aggressive form of breast cancer (triple positive + Grade 3) that had spread to one lymph node. So, I'm taking my hormonal therapy (Aromasin). I get some warm flushes in the evening, but other than that, its side effects are mild for me.

Best wishes, whatever you decide!

Luckynumber47

Why don't you just try the AI to see how you do on it. I hated having cancer so much I'm doing everything I can to be sure it doesn't come back - healthy diet, lots of exercise and religiously taking my AI. I've been taking letrozole a full year and so far no side effects. I can do everything I could before - maybe more because I'm so determined to prove this cancer is powerless

VioletKali

I have chosen to skip hormonals because they affected my quality of life. I believe that each has to make a decision that feels the best for that person. Quality of life for me is much more vital than quantity.

ReginaZ

Ruby, if I were you I would ask my MO what my risk of recurrence is both with and without the Anastrozole and then make my decision based on that. I bet your risk is really low either way.

By the way, I have been taking it for 2 months now, and no real side effects so far.

Good luck

mustlovepoodles

I agree with Luckynumber: why not consider starting the AI and see where it goes?  Sure, there *can* be SEs, but it's not a sure bet.  Your tumor is 100% estrogen receptive--that would fall into the Yikes! zone for me.  And don't think that because you're 65 that you're no longer producing estrogen; your adrenals and fat cells still produce small amounts. 

I've been on letrozole/Femara for 15 months with no SEs that I can ascertain.  Sure, I have some joint pain, but I also had severe osteoarthritis in my knee (just had a knee replacement--soooo much better now!)  I have some concentrations and short term memory issues, but I had that before due to other meds that I am required to take. Of course, your mileage may vary.  If you have intolerable SEs you can work with your MO to either find one that works or go off the AI entirely and roll the dice.

dtad

Hi Ruby...I have decided not to take anti hormone therapy. I was 62 at diagnosis. I have a debilitating autoimmune disease and was not willing to compromise my QOL any further. I do several things to lower my estrogen naturally. Please feel free to PM me if you would like to discuss that any further. BTW I was also 99 percent estrogen positive. I'm certainly not against anti hormone therapy in general. I just feel it's a very personal decision and should be respected. Good luck to all.

tls

Hi dtad. I have just joined the website and have found so many encouraging responses. I found my tiny lump in January and had a simple mastectomy on the right on 5/11/17. My tumor was IDC stage 1 grade 1 (6mm after biopsy), no lymph nodes involved. I will be turning 60 this year and really feel that I won't go on the AI that was prescribed. I had a long visit with my surgeon who stated by my pathology reports I have a 0.8% chance in the next 20 years of the tumor appearing in the other breast. My PCP stated that he would not recommend taking them since my numbers were so low. I have done so much research on eating anti-estrogenic foods and lifestyle changes to help lower my estrogen and I feel that is the road I will take. I have already implemented so many of them in my everyday life. I am a very active and energetic person who enjoys staying fit and since deciding to go natural I feel better than I have felt in years. I would really like to hear of your tips on lowering estrogen the natural way. May I please PM you? Thanks so much for all the enlightening posts!!!

dtad

Hi tis...for sure! I would be happy to talk to you. I think it's unfortunate that we can't talk about it on a public forum when the thread is "considering not taking anti hormones" but it is usually not well received. Please feel free to PM me anytime! PS it would really help answer any questions if you made your stats public...

tls

Hi dtad. Thanks for replying. I finally figured out how to put my stats to public. Now can you tell me how I PM you?

peggy_j

When I was deciding on taking tamox, I asked my RO and surgeon their opinions:

RO: BC patients have an increased risk of a second primary tumor (a new cancer, not a recurrence), including tumors in the other breast. Rads only protects one breast, but anti-hormonals will protect the other breast too.

Surgeon: try it for 3-4 months, until your body adjusts, and see how you can do. You can always choose to stop taking the drugs. (felt like the perfect response from a surgeon; they don't get a lot of do-overs)

I chose to take it. After a couple years I took a break and a year later a friend had a relapse of her melanoma (her prognosis had been better than mine) and that scared me to taking it again.

dtad

Hi tis..go to the left side of this page and you will see a private message thread. I'll PM you and you van answer me!

Sjacobs146

I don't judge anyone who decides whether to take AIs or not, it's a personal decision. I do think that they are worth trying though. The majority of women do not have severe SEs on Tamoxifen or AIs, but since it's mainly women looking for help with SEs that post, it may seem the opposite is true. I suggest giving them a try, and if you experience problems, then stop. I have had very minor SEs, so I continue to take Arimidex. If that ever changes, I would re-evaluate at that time

BarredOwl

Hi tls:

I have no opinion on anyone's ultimate treatment decision because it reflects their personal risk tolerance, but provide the following information.

Since you didn't mention it, I assume you did not receive an OncotypeDX test. Please advise if you did receive an Oncotype test, because the recurrence risk estimates provided in the test report assume receipt of five-years of tamoxifen. (The risk would be much higher than shown in the report if a person declined any endocrine therapy.)

Risk of Disease in the Opposite Breast:

Regarding your comment: "I had a long visit with my surgeon who stated by my pathology reports I have a 0.8% chance in the next 20 years of the tumor appearing in the other breast."

That estimate of opposite breast or "contralateral" risk doesn't sound right to me. I recommend that you obtain copies of all your reports. Check to see if the document says 0.8% in 20 years (i.e., 0.8% total) OR if it says 0.8% per year over then next 20 years (i.e., 16% total).

Even if it does say 0.8% (without "per year"), be sure to confirm the information with your Medical Oncologist. For example, a recent position statement indicates:

>> Boughey (2016): https://link.springer.com/article/10.1245%2Fs10434-016-5443-5

>> [Cited solely for estimate of contralateral risk -- This document is not current regarding the management of patients with pathogenic mutations.]

>>Quote: "Risk of CBC [contralateral breast cancer] for average-risk women with breast cancer is 0.1 to 0.6 % per year. CBC risk is higher for women diagnosed at a young age, those with a strong family history, and BRCA carriers."

The above is why I think the estimate is likely to be 0.8% per year. Over 20 years that would be 0.8% x 20 = 16% (a 16% risk of contralateral disease), which would affect understanding of your risk/benefit profile.

Endocrine therapy with Tamoxifen or an Aromatase Inhibitor addresses multiple risks, so one must consider the risk of same in-breast recurrence or a new primary tumor in the same breast and the risk of distant metastatic recurrence, as well as the potential reduction in the risk of new disease in the opposite breast (contralateral breast cancer). Please request such estimates if you did not receive them.

General Information:

The main rationale for systemic drug treatment (chemotherapy; HER2-targeted therapy (for HER2-positive disease); and/or endocrine therapy (for hormone receptor-positive disease) as indicated) is the risk of distant (metastatic) recurrence.

While node-negative ("N0") status is a favorable pathologic finding and is generally associated with a lower likelihood of suffering distant metastatic recurrence. It is not a guarantee that no cells have left the primary breast tumor and reached distant sites. Even with node-negative (N0) invasive disease and no lymphovascular invasion ("LVI"), it is still possible that in the years before surgery, a few rogue cancer cells broke off from the breast tumor, and moved to distant sites via the lymphatic system or via the blood stream.

A few rogue cells or clusters of cells at a distant site(s) are a form of "micrometastatic" distant spread that is NOT detectable by conventional tumor staging procedures (lymph node biopsy) or whole-body scans. Thus, such undetected distant micrometastases may be present, even when scans are negative, nodes are negative, and there is no LVI observed. This is because these methods are not 100% accurate in determining whether any tumor cells have moved to distant sites, and cannot exclude the possibility.

The risk that current undetected micrometastases may grow and become clinically manifest as recurrent metastatic disease at a later date provides the rationale for systemic therapy:

>> Pantel, J Natl Cancer Inst (1999) 91(13): 1113-1124 - [parenthetical notes added by me]

>> "Because the goal of [post-surgical, systemic] adjuvant therapy is the eradication of occult [undetectable] micrometastatic tumor cells before metastatic disease becomes clinically evident . . ."

Whether such treatment(s) is warranted or not in the individual case depends on estimated individual distant recurrence risk, based on standard clinical criteria (e.g., age, co-morbidities) and pathologic criteria, and optionally, information from prognostic tests such as Oncotype (if indicated). If no Oncotype test was received, then under clinical consensus guidelines from the National Comprehensive Cancer Network (NCCN) (Version 2.2017) for the treatment of breast cancer, for IDC that is node-negative (N0), hormone receptor-positive, HER2-negative, and the tumor is >0.5 cm, the NCCN guidelines indicate (at pdf page 17, Chart BINV-6):

>> "Adjuvant endocrine therapy or

Adjuvant chemotherapy [z,aa] followed by endocrine therapy[ x,y] (category 1)"

While guidelines do not mandate individual treatment, it can be helpful to understand what they provide, because they reflect the standard of care in the typical case (here, at least endocrine therapy).

NCCN guidelines for breast cancer are available for free with registration here:

https://www.nccn.org/store/login/login.aspx?ReturnURL=https://www.nccn.org/professionals/physician_gls/pdf/breast.pdf

Individualized Risk/Benefit Analysis:

The potential benefit of endocrine therapy is proportional to individual risk. Patients should always seek case-specific advice from their medical oncologist regarding their estimated recurrence risk(s) after all other treatments.

This should necessarily include an estimate of distant (metastatic) recurrence risk.

The risk reduction benefit of the recommended endocrine therapy regimen (versus no treatment) in their particular case should also be discussed. This is turn is weighed against the risks of treatment in a personalized risk/benefit analysis, in light of personal risk tolerance.

Different patients may come to different decisions in similar circumstances due to differences in personal risk tolerance.

BarredOwl

Tappermom383

The women on this forum continually amaze me with the depth of their knowledge. And, as we all know, knowledge is power. Armed with that knowledge, each of us can make the best possible decision for our own course of treatment.

What's wonderful about this forum is we can express our fears and our plans without being judged or second-guessed (unlike the real world where everyone seems to have a story to tell you). I so appreciate each of you!

I'm still in the midst of my rads (will reach the halfway mark this week!). When I finish, I plan to start taking an AI (my MO said he usually prescribes Arimidex) as I want to throw everything at this beast. I'm hoping for few SEs - time will tell. As others have said, I can always stop.

Best of luck to all of you on this unasked-for adventure.

MJ

gobsmacked

I have been recommended by my oncologist to not take hormone therapy.

The British NHS site Predict gives % benefits.

Entering Ruby's details, it says there is no survival benefit for her from taking Hormone therapy. Similarly, my survival risk increased by only 1% which he felt was not worth the substantial side effect.

Anonymous

BarredOwl I just want to jump in here to THANK YOU from the bottom of my heart. I see MO next week for first consult and will be on tamoxifen but have been reading a lot in order to think ahead and be prepared anddid not understand all of this. This is the best explanation of anything ever. You are wonderful!

Ruby3813

gobsmacked - Thank you for that! Another stat that I didn't put out there is that my OncoType test score was only 5, so that's really good news too.

Since I started this thread and haven't come back to update it, I have a confession to make. I DID start taking the Arimidex (anastrazole) as prescribed. Started it May 12th, I believe. I took it for 2 or 3 weeks and every morning, I was waking up with a horrible headache. Tried taking it in the morning; tried taking it at night; no change. I thought maybe it was a sinus headache since we were having lots of rain and barometric pressure changes during that time. I was also having lots more aches and pains (more than usual for a 65 year old). Getting up to go to the bathroom during the night and getting up for work in the morning is painful. So I stopped taking it for a week. Headaches went away. Aches and pains went back to normal levels. Started it up again, and now I'm having the headaches and joint aches again.

I saw my RO on June 6th for my 6 week checkup and he asked how I was doing on the med. I told him how I had felt and that I had taken a week off to test it and felt better when off of it. He said, lots of women end up just stopping because of the SE's. He wasn't the dr who prescribed it, but he didn't seem at all surprised that I would consider not taking it for QOL issues.

I think I'm going to stop taking it and see if things go back to normal again. If not, I might ask my MO for another AI, I might try another name brand, or I might just bag it all. As several have said, my life is in the Lord's hands. He's in complete control and to think I have any control over what happens, just isn't something I believe to be true. :-)

BarredOwl

For information only, for those who received an Oncotype test, in the node-negative ("N0") Oncotype report, the estimate of 10-year risk of distant (metastatic) recurrence after 5-years tamoxifen that is associated with a particular Recurrence Score "assumes" the receipt of 5-years of Tamoxifen. This is because the data used to determine the 10-year distant recurrence risk according to Recurrence Score comes from a group of patients in a trial ALL of whom were assigned to receive 5-years of Tamoxifen.

The 10-year risk of distant recurrence risk with 5-years of Tamoxifen ("Tam Alone") associated with your Recurrence Score is printed next to the first graph in your node-negative (N0) Oncotype report. However, if a person declines endocrine therapy, then the 10-year risk of distant recurrence would be higher than shown in the Oncotype report. Your Medical Oncologist can provide you with an estimate of your 10-year distant recurrence risk with no endocrine therapy.

BarredOwl

kira1234

I'll add to what BarredOwl said there is also a test my oncologist requested that determines if an additional 5 years of tamoxifen is necessary. In my case the results indicated 5 more years. Since my reacurrance I'm now on the 12 year plan.

Judvan2

Hi, Can you tell me what you are doing in place of Als. Thanks Judy

dtad

Judy...not sure if your question was for me but I do not take anti hormones but I do several things to lower my estrogen naturally. I have lost 30 pounds since my diagnosis and try to exercise daily. I take DIM, baby aspirin, melatonin and berberine to regulate my blood sugar. IMO exercise and weight loss are very important in reducing recurrence rates. Unfortunately anti hormones many times makes both difficult. Again this is the right decision for me. We all have to make our own informed decisions about treatment options. Good luck to all navigating this complicated disease.

Nightweaver

Hi, I no longer take AIs. I took Letrozole for a year. By the end of that time my side effects were so debilitating I wanted to die. I couldn't sleep more than 20 minutes straight because of pain and severe hot flashes. My cardiovascular system was seriously compromised. I was a very active person and couldn't run anymore. I couldn't work more than a couple of hours a day. I started to develop trigger fingers and my hands were in constant pain and contraction and I am a massage therapist. I could no longer have sexual Intercourse with my husband, it was too painful. I was depressed. My oncologist told me that the symptoms would get better after six months, they did not, they got worse the longer I was on the drug. I quit taking the drug. Living however many "extra" years in that condition was not an option. I used two books to inform me in how to work with herbs and other supplements as alternatives: After Cancer Care by Gerald Lemore, MD and Breast Cancer, Breast Health by Susan Weed.

Judvan2

Thank you so much for your reply's. I have tried two Als so far and the side effects have been terrible. I tried Letrozole and Exemestane. I went off them two weeks ago and feel better. I see the oncologist Monday, so I read everything I can, but its all very confusing. It seems allot of what we read and are told is fear based and I'm trying to figure it all out. I love this forum because people are honest. I'm hoping my doctor will accept my decisions and still treat me fairly. I went yesterday for my first follow up mammo and ultra sound and everything was good.

Momine

Judvan, as several people have posted, the risk reduction from AIs is relative to your overall risk. In my case, with a 3B dx, the risk reduction is significant. So for me, taking it and dealing with the SEs (which, thankfully, are minor in my case) is a no-brainer.

In the case of very early stage disease like yours, Ireally think it is entirely reasonable to have a thorough talk with your onc about how much exactly this drug is likely to help you.

Judvan2

Thank you. I'm happy you don't have allot of side effects, I would be very willing to take them if they didn't limit my life so much. I will talk to my doctor tomorrow. I wish you a full recovery.

windingshores

I take brand name Femara. The drug insert says studies showed that 20% of the usual dose is actually effective so I got permission to take half a pill daily from my MO. I have not yet dared do it yet though! I've done a little more than two years and do find side effects difficult. Tai Chi helps me a lot. I still have kids in mid-20's and want to be here as long as I possibly can.

Oncotype basically doubles the risk they have for you with 5 years Tamoxifen,  if you don't take Tamoxifen or AI.

Momine

Judvan, thanks, and I totally understand. I am lucky in that I have no severe effects. I suspect that the survival advantage from AIs in your case is fairly small, because your overall risk is so low to begin with. Surviving is nice, but enjoying surviving is kinda important too. Talk to your doc. It may be an option to take half a pill or to take the drug intermittently. There are options, and only you can decide what the risk tolerance vs QOL balance is for you

BarredOwl

As far as reducing the dose of letrozole (Femara), I see a material difference between what is likely to have been (please confirm it) a short pharmacokinetic study (usually done for a few weeks) that may have shown that certain lower dosages can achieve suppression of plasma estrogen concentrations relative to baseline versus a clinical trial with suitable long-term follow-up demonstrating the safety and therapeutic efficacy of a different dosage of said drug based on a suitable clinical endpoint (e.g., distant disease-free survival).

Pharmacologic studies in humans are used to select the dosage to be tested in Phase III trials. Pharmacologic assessments are based on understanding of mechanism of action, which may or may not translate into therapeutic efficacy. Unfortunately, many phase III clinical trials fail in part because such pharmacologic studies may fail to accurately predict a dose that is both safe and therapeutically effective. So the question I would have is whether any particular reduced dosage under consideration has been shown to be therapeutically effective in a clinical trial assessing an appropriate clinical endpoint(s) (with long-term follow-up) and not just in a short pharmacokinetic study that only looked at plasma estrogens? That is a question of fact for a Medical Oncologist familiar with the underlying studies. If not, would a different Aromatase Inhibitor at the recommended dose be preferred?

BarredOwl

bellydancer2

Hi, I have had breast cancer 3 times. The first time back in 2010. After a lumpectomy and radiation I was on Tamoxifen for 6 months. I took myself off because I was having so many side affects. My third diagnosis was Oct 2016. I had a radical double mastectomy, 15 months of chemo and reconstruction. I have been on Exemestane for about a month and am having very uncomfortable side effects. I am also considering not taking any anti hormone drugs.

stage 2, HER2 Positive, Estrogen and Progesterone Positive, 23 lymphnodes removed.