Low risk breast cancer - why hormonal therapy?

Loomisgal

I am told that I have very low biological risk for reoccurrence. What would the benefit be for hormonal suppression?

gb2115

What specific type of cancer do/did you have? I think when they give you odds for recurrence, if your tumor had hormone positive cells, the "risk" for recurrence includes (and assumes) hormonal therapy. I was told that I had a low risk type of breast cancer, but those statistics assumed I was taking Tamoxifen (which I am). Otherwise it jumps up quite a bit, to what I consider an unacceptable risk level.

Best to direct this question to your oncologist, since they know the particulars of your case. Ask specifically how much hormone therapy would help you.

Loomisgal

Good Morning! Thank you for the response. I had invasive ductal carcinoma, state 1A, .04 centimeters, estrogen positive, progesterone positive. I was told my risk without hormonal therapy was in the single digits and with hormonal therapy also in the single digits. The hormone therapy is supposed to cut the risk by 50%. I am thinking of getting a second opinion to help clarify my decision.

Thank you again!

Lynn

Michelle_in_cornland

Looms, when were you actually diagnosed, what was your diagnosis,surger, type, stage, etc. any lymph involvement, radiation, mets, etc.? You need to fill out the diagnosis form, so others can understand what you are talking about.

Jadalulu

my risk factor of recurrence was less than 5%, with tamoxifen it takes my risk down to 2%. I had a bilateral mastectomy, stage 1 IDC, no node involvement. I wanted to do everything in my power to decrease the possibility of it recurring so i chose to take tamoxifen.

Loomisgal

Thank you Jadalulu! I was told my risk factor was similar to yours. Thank you for sharing your rationale. Michelle_in_cornland, sorry, I updated my info! Thanks!

moth

Loomisgal, after you fill out the profile bit, when you're back in the community pages, scroll down & find settings on the left hand side. Then on that page you'll get to choose which parts of your profile to make public. Things that you set to public will show in your signature

The thing I'd add to the discussion at this point is to consider time frames for risk. Usually when they say x% risk of recurrence it's in the next 5, 10 or 15 years (& with most breast cancers the risk or recurrence continues and often increases as time goes on; this is true of hormone receptor positive cancer). Depending on your age, you might be hoping for a life expectancy considerably beyond that. And just so we're clear, usually they don't talk about loco-regional early stage recurrence (which is treatable); they're talking about metastatic recurrence, which at this time there's no cure for, so it would be ultimately fatal.

btw, you can put in your stats in the calculators yourself and see what kind of outcomes are common and see if you're getting similar numbers to what your MO said.

Predict: http://www.predict.nhs.uk/predict_v2.1/tool

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

hth in your decision making

SummerAngel

Moth, risk continues, yes, but it does not increase.

JoE777

I agree with moth after reading studies about distant metastasis as in my case. That's why the word cure is not used. In my case I used AIs for two years and stopped. That was summer of 2014and became sympathetic this time last year. I was extremely active/good health/had clean mammo and blood work 5 months earlier-After a move and finding new onc who wanted me to start letrozole again as a gaurd against recurrence. I didn't have a recurrence but went metastatic. Do I blame me -no. Doctors won't even go there because they know how illusive HR+ is. You can see my DX AND TREATMENT below. You can always stop the inhibitors if you feel you need to. Hate to scare you but this is a nasty ghost of disease.

jkrehbiel

I was diagnosed with ILC stage 1 grade 1 ER/PR+ HER2- in June of 18. I was taking hormones and have stopped. Did unilateral mastectomy. I was told I am "low risk" for recurrence. I am supposed to start taking arimidex. Just questioning if stopping the hormone replacement is enough! I read the side effects and they don't sound fun!

Jons_girl

loomisgal. Not sure how similar my dx is to yours. But my risk was extremely low. I did not do radiation or meds. My recurrence rate is still verrry low. My tumor was caught very early. We are doing ultrasound every 6 mo. Mammo didn’t see my cancer at all. Very dense tissue.

I’ve also started intermittent fasting and my diet and lifestyle (stressors etc) are changed to be more healthy. I’m feeling great! Have lost weight and feel fabulous!!

I’m doing just fine. My onco said he’d support my decision as long as I see him and do diagnostics periodically. So doing those every 6 mo.

moth

SummerAngel - it increases with time. If I put in my stats into Predict (& discard the fact that I'm a triple neg, so I put myself in as ER+) & assume no hormonal or chemotherapy treatment, 7/100 women die of breast cancer in the first 5 years and 24/100 die of breast cancer in 15 years. The risk has more than tripled.

As you go further forward in time, risk of fatal recurrence increases.

pupmom

Regarding statistics, if you recur with metastasis, it matters not that your predicted recurrence rate was 2 to 4 percent.

SummerAngel

No, the risk doesn't increase. The risk decreases and then levels off to a very low point. Saying it increases is implying that you have, say, a 5% chance of recurrence in the first 5 years and then a, say, 7% chance the next 5 years, which isn't the case at all. I'm not speaking of cumulative risk.

Michelle_in_cornland

Moth, other factors go into the higher rate, such as other comorbidities, for example heart failure, systemic organ failure, accidents. There is no way to separate out deaths from breast cancer, when other comorbities exist. Here is an explanation from a study that I have been reading:

"Breast cancer is the most frequent malignant disease and the leading cause of death due to cancer among women in the world [1]. Survival after breast cancer is determined by disease related factors such as stage at diagnosis, patient characteristics, e.g., age, and treatment [2]. The incidence of breast cancer as well as other chronic diseases increases with age, older breast cancer patients being more likely than younger to suffer from other diseases at the time of diagnosis [3]. A common term for such other diseases is comorbidity, defined as concurrent, etiologically independent chronic health conditions, unrelated to the disease under study [4]. There are two main mechanisms whereby comorbidity can influence treatment and survival after breast cancer. If the comorbidity involves organ failure, like compromised respiratory, cardiac or renal function, curative treatment involving surgery, radiotherapy, and chemotherapy may be impossible leading to an increased risk of dying from breast cancer due to insufficient treatment. On the other hand, the risk of dying from the comorbidity may be so high that the patient may not benefit from the breast cancer treatment, even if she receives the recommended therapy."

Moth, that 24% that you are quoting, is that from breast cancer alone or combined with other comorbidities? Is it derived by stage, type, etc. Could you please inform us where you saw that statistic?

moth

Michelle - it's from the Predict calculator http://www.predict.nhs.uk/predict_v2.1/tool

They separate out cancer deaths and deaths from other causes. The 24% is from cancer & if people did not take hormonal or chemotherapy - whether they couldn't due to comborbidities or by choice.

I entered: 50 yrs, postmenopausal NO, ER+, Her2 neg, Ki unknown, tumour 17mm, tumour grade 3, detected by symptoms, positive nodes 0, micromets NO

Then you can toggle on the left to choose hormone or chemo; on the right, if you select Icons and select 15 years, "24 breast cancer related deaths"

if you toggle hormone therapy you get 7 extra survivors & cancer deaths drop to 17/100 at the 15 year mark.

Michelle_in_cornland

There is no way to separate the influence and impact of comorbidities, that is why these math calculations don't work. They are a great prediction tool, but not a study tool, nor are they weighted as an information source for oncs. For those of us with early stage breast cancer, Oncotype has been a great tool for decision making. Oncotype actually looks at the individual's tumor and characteristics.

Looms needs to post her specific diagnosis. We have alot of phishing on this site that can go on for years undetected. Phishing occurs when open ended questions are asked and everyone dialogues and those doing the phishing analyze the dialogue and thought processes. Not commenting anymore on this topic because not sure of the motivation behind the original post.

Loomisgal

I am not sure why, but my diagnosis is not showing public obviously after indicating it as such.

IDC 0.4 cm Er+ Pr+ Her- 0/2 moded

Lumpectomy 9/27/2017

Partial breast, accelerated external radiation 6 days 10/24 - 10/30/2017

Fat grafting and scar release surgery 5/6/2018

Oncotype dx score 11.

I started this post because of the trepidation I have regarding side effects for hormonal suppressants. I have already overcome a brain injury, osteoarthritis, full prolapse and possible blood antibodies for blood clots. I do not want to have to read experience symptoms or side effects I've already endured and overcome. There was a possibility of being allowed a drag not FDA-approved yet but it was denied even though it had minimal side effects for me. My oncologist has stated my chance of reoccurrence is very low biologically. I was looking for input on other people's experiences.

Georgia1

Hi LoomisGal. I had stats similar to yours, but with an Oncotype DX score of 18 and a mixed IDC/ILC tumor. Given that the Oncotype DX score put my recurrence risk at 11 percent, even with the beneficial effects of Tamoxifen, I opted to reduce it by taking the pill. So far no side effects at all, but I am 59 and post-menopausal.

It's really such a personal decision when you are low risk it is hard to give advice. But if you can, I'd try it for awhile and see how you feel. Even two years of anti-estrogen therapy has proven benefit.

(edited to fix math error. Without Tamoxifen my recurrence risk would have been approxImately 22 percent.)

Loomisgal

Georgia1, thank you. I am going to give it a try too and stop being so fearful. I appreciate the response and good luck on your journey!

Michelle_in_cornland

Loomis, I was scared as well, and I have a background in Pharmacy. I was supposed to take an AI, but after a hysterectomy/oopherectomy to get ready to take the AI, we discovered that I had osteopenia in my hips. So, I take Tamoxifen and for some strange reason, I feel really good on it......makes no sense at all. There will be some initial side effects, but they dissipate over time. My worst side effects were lack of concentration/fogginess, a bit of stomach upset, sleep issues. The sleep issues started after I had radiation and somehow my circadian rythmn was changed and my days became nights and vice versa. Now, Tamoxifen can help put me to sleep. I take it with a tiny bit of amitryptline. I use light therapy in the winter/long rainy periods and try to get in my daily walking. I had to take Magnesium for a while, which helped with any muscle cramps/leg pain, which is gone. Magnesium can also help you sleep and builds bones. I take 50,000 units of vitamin D per week, and chow down on some vitamjn c every day. Your doctor let you go a really long time not taking anything. Start with 10mgs of Tamoxifen for two weeks, then 10mgs 2x per day, for less side effects. Even if you take it at 8pm and 11pm, it helps to reduce side effects. Good luck.

Loomisgal

Thank you for the great information and I'm so glad that you're doing well on tamoxifen Michelle-on-cornland! I so appreciate the tips and the supplements you're taking. Fear has been my biggest enemy on this journey. Thank you for sharing!

moth

Well, Oncotype is only useful for some of us - it's not helpful for tnbc. It classified me as triple neg & it's not validated for tnbc so my oncologists did use calculators such as Predict and Lifemath to assess risk when discussing chemotherapy benefits. I do agree that these calculators are not specific to individuals; they are large population data and do not necessarily apply to each individual but still, they provide information which can be useful to the individual.

Also the Oncotype recurrence score assumes 5 years of tamoxifen.

Georgia, I'm confused by something you said about Oncotype giving you a score & tam halving it - Does it give on your report somewhere the recurrence risk without tam? I've only seen reports for the benefit of tam alone or tam + chemo.

BrooksideVT

Loomis, a second opinion is never a bad idea, but not your only option for more information on AI's.  You can also grill your current oncologist, especially for access to study results.  I've been known to do this in person, on the phone, or by email (or the hospital's patient portal).  Your pathology is amazingly good, so it's likely that no doc will feel strongly about which way you decide to go, so all they can do is present study results.  Yeah, I know.  It's not particularly helpful to not have clearcut criteria to deal with.

For me, I wanted to do whatever there was to do.  I was one who developed joint pain from my AI, so after a couple of years I switched to tamoxifen and, yes,  the joint pain went away..  My onc tells me that the benefit of whichever drug continues for some time after it has been stopped, so I am currently (hopefully) cruising on the benefits of tamoxifen, which I stopped taking in April.  Hopefully, I am still somewhat protected.

There is no harm in trying the drug.  Side effects usually take several months to show up (if they ever do), and, even if you feel you need to stop, you will always know you have done everything you could. 

MexicoHeather

Staying on Track with Hormonal Therapy...

This is a link to a breastcancer.org article. You have hormonal receptors all over your body. I would suggest getting on the AI.

Georgia1

Moth, you are correct. I'm terrible at math and tried to fix my post so it doesn't confuse others.

And I second the magnesium recommendation. I take 200 mg daily.

Marms

I had BMX Nov 2017. Stage 1 no lymph involvement, no chemo, no radiation. Post menopause. Took Letrozole for 8 months off 1 month because of side effects tried Armidex for 10 days worse side effects. Currently stopped all ALS blockers. Deciding whether to try Tamoxifen. My Oncologist thinks I most likely will have severe side effects. These drugs have caused severe depression and anxiety plus severe insomnia. I don’t want to take more drugs to alleviate the side affects.

JG2018

I have been taking Letrozole for 1 1/2 years due to lumpectomy & some lymph nodes removed. I had radiation but no chemo.

No problems at all until the past few months. I now have terrible joint paint & keep getting a trigger thumb. Is there anything better out there? Will the joint pain go away once the 5 years is up & I don't have to take it or is this going to be a long time deal.

pupmom

JG, it is impossible to intelligently reply to your question, because you have not provided your stats.

Myraknits

Hi All, I had Her2+, Estrogen+, Progesterone negative cancer in 2016. Treated with chemo, rads and surgery and have NED. I'm on Anastrozole for the next 9 years but I'd like to stop taking it due to joint pain, etc. I eat a whole food plant based diet and exercise daily, which I understand lowers my risk of reoccurence. Does anyone know of the most current research on % of reoccurence risks for post menopausal women with and without hormone blockers for specific diagnoses?

Thanks!