Considering not taking an anti-hormonal

kira1234

Bellydancer I'm going to suggest you check the additives in what you're taking. With 3 diagnosis I'm really thinking you need something. I'm on my second diagnosis and have been on the meds 6 out of 7 years. Only stopped because of a TIA from tamoxafin

JASC

I started taking anastrozole, 3 weeks ago. Day two, an d I was waking up with aches and pains, I am now limping. I feel like I am three sizes bigger due to bloating, and cannot sleep. I want to get off this drug due to the side effects, just scared if I do my cancer will come back. They are not talking about putting me on a different anti-homonal, but are they not all the same?

kira1234

Jasc there are different choices with different side effects. Also the name brand and generic. Often generics have fillers that can cause us issues.

Ruby3813

I had trigger thumb surgery in May of 2016. Everything was fine after that, until the Anastrozole. Now, my hand and thumb hurt constantly. Grrrrrrrr!!!!

pupmom

Putting things in perspective. Is a hurting hand worse than a cancer reoccurrence? Just asking.

Ruby3813

I understand what you're saying pupmom. But with the low grade BC I had and my low Onctotype test score (5), I'm still considering whether all of the aches and pains are worth the low percentage of recurrence.

muska

Ruby, how old are you? Asking because someone diagnosed at 70 and someone diagnosed at 40 have somewhat different things to worry about.

Ultimately, the decision is always yours.

Sturtzy

i was diagnosed with stage I breast cancer. I had a lumpectomy and i am supposed to start radiation and an AI. My HER was negative supposedly she got it all, but i dont know what to do either. I too am healthy and want to take care of all my health not just cancer. I may look for a naturopathic doctor.

kira1234

Sturtzy this is your first post. Is there some way we can help you?

Ruby3813

Muska - I'm 65. Will be 66 in November. I'm continually weighing the pros and cons of taking AI's and quality of life. It's definitely not an easy decision.

muska

Ruby, your first post on this thread was over a month ago. Are you still on anastrozole or have you stopped? If you are still taking it have you noticed any changes in symptoms?
In my experience you need to give your body some time to get used to it. I had some symptoms at the very beginning that were completely gone a few months later.

Ruby3813

I started taking Anastrazole on or about May 12th and am currently taking it. I have taken a couple of breaks to see if my morning headaches and new joint pain was related to the AI. As of today, I'm still taking it.

muska

In my experience, it takes a few months to stabilize. I would say 4-5 months at least.

OG56

in 2008 I had my first breast cancer which was IDC I had a lumpectomy followed by radiation and 5 years on Arimidex. I must say it was a very miserable five years and when I finished I felt so much better. Fast forward to September of 2016 and I have a new primary cancer ILC and I had a double mastectomy with chemo and I am refusing to do a hormone blocker again if what I've done isn't enough well so be it. My oncologist sent my tumor off for a new type of testing that will see if the Arimidex would actually benefit me but I doubt sincerely that I would change my mind.

marijen

Thanks for your input OG56. It's a very difficult decision to make

SJI

I finished radiation two days ago. i see the oncologist in late July. I am really hesitant about taking AIs. Estrogen has many important functions and stopping all of it seems wrong.

I'm 64. From what I've been reading, it sounds like bone loss definitely happens with AIs. Does anyone know if that is true?

My cancer was ILC Stage I and Grade I. My surgeon was adamant that the hormone treatment was essential. He said it reduces the chance of recurrence by 85 percent.

My oncotype score was 11, so I'm assuming if the 85 percent figure is correct, it would drop the chance to 1.5 percent. That sounds like a no-brainer, but QOL is more important to me than length.

I'd rather lose weight to reduce the amount of estrogen and exercise.

Before I make a decision, I'll have a long discussion with the oncologist and find out what the actual percentages are. Right now, I think I'd be comfortable with an 11 percent chance and a good quality of life.

I really appreciate all the info in this thread.

Thanks.

Hopeful82014

SJI - Your Oncotype score is predicated on the use of an AI for five years, so not taking one ups the odds of recurrence. Nor does that score represent your RISK of recurrence; there should be a graph that shows the risk WITH an AI or tamox.

It's always your decision but you should make it from a thoroughly informed position.

marijen

SJI try this life math and see if you get 85%

http://www.lifemath.net/cancer/breastcancer/therap...

Artista928

It's not clear what age you put in that calculator. Dx age or now. I've read it's not terribly reliable. As for se's on meds, try different manufacturers. A filler in one may be the prob and another manufacturer may be easier to deal with. I like Teva.

kira1234

You asked if bone loss is a se of arimidex and the answer is yes. The oncologist should request a base line bone density test. If you show signs of bone loss an additional drug should be recommended to help build bone strength.

dtad

SJI...I have never heard that 85 percent stat. AS far as I know it reduces your recurrence rate by 50 percent. Would be interested to know if your doc thinks that is your individual reduction rate? Confusing to hear so many conflicting opinions from docs!

keepthefaith

SJ, I was RX'd Tamoxifen instead of Al bc of osteoporosis. I would talk to your MO, not your surgeon about hormone therapy. Good luck:)

Ruby3813

OG56 - thanks for your story. It really is a difficult decision to make.

Peetie1

Hello All!

I just finished radiation and I am also struggling with the decision to take Tomoxifin or not take anti-hormonal. I am pre-menopausal, so Tomax is my only option. I am considering ovarian oblation as it gives roughly the same protection for me as tomox, but at age 50 I will probably go into menopause naturally within a year anyway (statistically speaking). According to my Mammaprint I have a 5% chance of recurrence in 5 years, and a 10% chance of recurrence in 10years. My MO told me that anti-hormonals would reduce my risk by 50%, so that means 2.5% for 5 years and 5% in years 5-10. I do not know if that benefit is worth the SE of the anti-hormonals. I have been interested in other alternatives. I have started taking a daily baby aspirin (20% benefit of reduction of breast cancer risk according to a study published May 2017-very little SE possibility), I have gone to a vegetarian diet and am exercising daily. I wondering how those two things change my risk profile statistically. I am also interested in a phaselll trial that is currently studying the efficacy of topical Tomox. The SE seem to be lower, while retaining therapeutic benefit. Wondering when that option could become available. I would appreciate any insight, it is a really tough decision...

Anonymous

Hi Peetie

It looks like we have similar cancer profiles and risk numbers.

My Oncotype score is 12 and the report says my chance OF METS is 8% in 10 years WITH tamoxifen.

I have been a vegetarian for over 20 years and have exercised regularly all my life. (Healthy BMI, I cook most of our meals at home with lots of organic produce, never smoked, the whole nine yards) My docs say I should keep it up, as it is good for many reasons. For me there's not much else I can do. Still got cancer. Im sure it helps some but I'm living proof that a healthy lifestyle isn't a guarantee.

Took my first tamoxifen pill last night. Fingers crossed for us both

marijen

How far are you from natural menopause Peetie1? I believe the less messing with your body the better. Because one thing leads to another.

Peetie1

EpicSquirrel- I have not been nearly as healthy in my lifestyle choices as you have, and I have to admit that I am hoping that making healthier food/exercise choices will help in my cancer fight! I do not (and did not) smoke or drink, but I did work long hours with a long stressful daily commute, eat junk food and live on protein shakes as I often didn't have time for breakfast or lunch. I am slightly overweight, and would swing between trying to starve off the pounds, and binging on cheese popcorn. While I have an active job, I did not have a dedicated exercise program. I am now moving closer to my job, planning to work regular hours, planning to take a lunch regardless of time, exercising, taking vitamins recommended by a Natropath, and eating an organic vegetarian diet. Hopefully it will improve my overall health! I wish it was enough to stave off a recurrence....Just a side note, I find sticking to my new diet really tough in restaurants, there are often no good choices!

I wish that I had been offered the Oncotype test. It sounds like it provides more information. For instance, my Mammoprint gives my chances for a recurrence of breast cancer without any further Tx such as chemo or hormonal therapy, but it does not address the chance of mets which scares me quite a bit! Good luck with the Tamox! I hope that you will keep in touch and let me know how you are doing on it!

Marijen-I am planning to ask for a hormone test to see where my numbers are. Last summer at my yearly check up my doctor proposed taking me off of BC pills and testing my levels this summer to see where I am (I quit the pill after my dx in March). Last summer after my physical examination my doctor said that she thought that I was getting close to menopause and she predicted that I would be in complete menopause within two years. That was a year ago, and I am still having periods, that is why I wonder if ovarian oblation is a good idea...

gobsmacked

Ruby

This is the same decision I am trying to make. The Predict prognostic tool has superceded Adjuvant. It is the British prognostic tool, and is widely used in Australia, Canada, UK etc.

Put your details in and see your survival rates with/without hormonal treatment: http://predict.nhs.uk/predict_v2.0.html

As a result of this, my MO has advised me not to take them as side effects outweigh benefits. I am 67 - and my prognosis is worse than yours!

Kawigirl1260

Hello Ladies,

I started Arimidex back on Feb. '16. I'm post-menopausal and opted for the Arim. instead of Tamoxifen because my MO said the Tam. has a risk of uterine cancer. I've had only a couple of SEs - occasional muscle spasms and foggy brain. I struggle even more than I used to with remembering names, coming up with words in conversation, and remembering things short-term. I know, that just comes with old age, but it's noticeably worse since I started the drug. I find that regular exercise helps with the SEs.

I do have to do semi-yearly infusions of Zometa because my baseline bone density showed me at osteopenia levels, but I had the scan done within a very short time of starting the drug, so the bone loss was already in full swing. I limit my caffeine intake since that can affect calcium levels in the bones.

Ruby and Peetie, good luck with your decisions. Remember that you can stop the drug or change to a different manufacturer if you have severe SEs. Just keep talking with your MO.

And keep breathing.............

Artista928

I wouldn't rely on a predictor tool. Having unknown as an option is not a good thing first of all. Why bother having that if an option is unknown. It means to me then it doesn't matter. Next,how it was found does not contribute to survival time. Second, just because Ki67 (which most MOs don't even look at because it is poor predictability) is positive does not mean it's high. If I select positive, it could be 5 which isn't bad or 75 which is very high. Finally the chemo regime. Huh? What in sam hell does second and third mean? Finally, where do you input your lifestyle, weight, diet, etc. Major factors in survival as well. I hope no one is relying on this to help decide for this is um, I won't say. If your MO is using this, get another opinion.