thinking of quitting

It is possible - your personal risk impact depends on a lot of factors.

Have you spoken with your oncologist? There are many other hormonal options. Like the birth control pill, one may make you crazy and the other one is like a sugar pill, and for your sister it could be the exact opposite.

Erin- the middle ground of just Tamoxifen might be sooo much easier than suppressing your ovaries and the AI. Definitely worth a try. I struggled through four years of varying hormone suppressors.

I’ve written letters to my onco and then faxed them. That seems to get their attention because there is a paper trail. Explain your fragile emotional state. See what your recurrence risk is on Tam vs what you’re doing. Tam acts in a difference way that the AI. Worth a try?

((hugs))

I AM A QUITTER. I was on an AI and OS for 6 months and called it quits. I admit that I value quality of life, palliative care, and not suffering, moreso than many. I am a Nurse and value quality of life over quantity. I was diagnosed at age 31, just 3 weeks shy of my 32nd Bday.I quit chemo too.

*I* do not believe that the % are enough to warrant the side effects I experienced. I have read the data, and it isn't worth it to *me*.

I admit that I am a member of Dignitas International, and will not allow myself to suffer if I were to have metastatic cancer that failed to respond to treatment that did not decrease my quality of life.

Hi Erin,

I hope your oncologist is supportive and helpful.

With my oncologist, I found it helpful to hammer home the point that my likely alternative if tamoxifen didn't work out was quitting, not trying OS/AI. She became a lot more creative/open about troubleshooting after that. I ended up on an alternate SERM not usually offered to premenopausal women, that thank goodness did not give me the issues that tamoxifen did.

Good luck!

Hi. I'm pretty new here and recently started hormone therapy. (Lupron Depot shots). Had my 2nd shot today and am starting on Letrozole (pill) today. I haven't had any "severe" side effects yet, but have felt some depression and fatigue. I'm just wondering if the side effects get worse with each shot?

Also, I know your pill is different from mine, but curious to know how it has affected you also? Did you start the pill same time you started Lupron?

erin...i am much older than you...but i did tamoxifen and lupron for 2 1/2 years, then, once I was finally menopausal...i did letrozole for 6 more years. For sure, my body felt like it was assaulted. However, my medical oncologist was a saint in working with. me through my side effects. Everyone 's side effects are unique to themselves and should never be diminished because QOL is extremely important. That said, I have subsequently been diagnosed with arthritis and Ehler Danlos Syndrome, so my pain can be associated with those two disorders more so than the ovarian suppression and endocrine therapy. Can't begin to tell you how many orthopedic surgeries I have had.....however..

what i want you to know is that having the ear and compassion of a great team, helps. And....depression? My best treatment to keep the depression at bay is.....walking...and reading books. Find whatever it is that makes your heart sing and your core will feel better...and if that doesn't work...join a group or consider meds....

i am approaching 11 years away from my diagnosis. My life is full and my heart sings. I promise you will get there...start by taking baby steps. Speak to your oncology team and tell them how you feel....the first step is always the hardest...

I too am thinking of quitting the Femara. I have tried talking to the oncologist and was met with a very base response. He wanted to know where I went to medical school and did I have a degree. I then made an appointment and talked to my surgeon who was more understanding and told me it was totally my choice. But when pressed, he said he recommended I try and stay on it. After being on this for about 14 months, the side effects are becoming almost unbearable. Mood swings with very dark episodes, crying out of nowhere, not sleeping at all one night then sleeping 10 hours the next, joint and muscle pain, fatigue and not-getting-off-the-couch lack of energy at times, weight gain, exacerbating carpal tunnel in both wrists. I have also worked the graphs at lifemath.net and the difference between being on the medication verses none is extremely minimal. I was told that my survival rate with medication is 98% and without medication it is 97%. But my oncotype score was 19 with a 6% risk of recurrence at 9 years while taking Femara so these numbers don't add up. I have a one-year follow up with the radiologist this Thursday and will talk with him about this medication. I have had the genetic testing done and it was all negative and there is no history of breast cancer in the family.

VioletKali - I quit the Femara last week after 14 months. If I read this right, you quit taking it over 5 years ago? And it sounds like you're doing well!

Thinking of stopping also. Fracture my knee in March 2020 stopped for 6 months and need to start back up, but feel better not on it.

Looking for insight 4 years in and what the stats of benefit for making 4 years.

Thanks~

I am thinking of quitting myself after only a year on Tamoxifen. It might be causing my recurrent anal fissure issues and I cannot live like this anymore. It is no life. Nothing is helping me and I even got surgery for them. Things got even worse with Lupron. For now, I am taking a break from the Lupron to see if my fissure issue gets better. If not, then I will take a break from the Tamoxifen and see what happens. I know it is risky, but my quality of life has been terrible and I just can't live like this anymore.

I know it's a very personal decision for people and I respect everyone's decisions. It's really a tough call and everyone has a limit to what they can deal with.

I'm a TNBC girl so not offering personal experience but chiming is because an onc I follow online was critiquing a recent study presented at ESMO (Opdam " avoid systemic overtreatment of post meno bc pts with low mammaprint scores" positing endocrine tx for only 3 years -but it's a small study & v little long data past 10 yrs) & I recently re-read the big 2017 study about ongoing 20+ yrs risk for ER+ (aka the long tail study) *

I've been thinking about Pinktober & 'survivor stories' & my sense of early stage ER+ pts is that many do not get enough information about the difference between recurrence scores, overall baseline risk (which at best returns to close to general population's ie 9-11%, or roughly 1 in 10 but often is considered to be around double of general population ie ~20%, because having had cancer once demonstrates your body has a weakness in identifying and killing of a mutation. Remember our cells make replication errors all the time & more as we age... the cells just self destruct or get killed by the immune system. Cancer is a failure of many control mechanisms. If you had a failure once, there's a real risk that it will fail again).

And furthermore, my general sense is that many people are told they're "cured". Some numbers are given to them but little context about what is personal risk, what is general population risk, & also what timelines are being considered. I'm even seeing an erosion of 5 year survival rates being a big topic among pts because it sort of seems *to some* that it's a given that they'll be around for 20+ years! They're not even thinking 5 years. Oncologists otoh often get excited about studies showing additional 3 months of life so their time scales are also subject to warping; I think MOs often aren't thinking years or forever, whereas patients are....

SO... the long tail study big kicker "The risk of distant recurrence was strongly correlated with the original TN status, with risks ranging from 10 to 41%, depending on TN status and tumor grade."

& let's just note here because even this sometimes gets lost for early stage pts: distant = metastatic = stage 4 = no cure. So if you're in a high risk category, and stop endocrine treatment, there are significant risk of a metastatic fatal recurrence at some point in the next 20 years. Obviously, the younger you are, the more of an issue this will be for you.

However, a 2019 update at SABC the authors presented data on pts diagnosed after 2000, & found that the recurrence rates are dropping. "The risk of DR at 20 years after diagnosis for women with node-negative ER+ early stage breast cancer, who discontinue endocrine therapy at 5 years is likely to be about a third lower now than in our previous report. However, long-term follow-up of patients diagnosed more recently is required to accurately characterize long-term recurrence risks." https://cancerres.aacrjournals.org/content/80/4_Su...

Anyway, my bottom line is that when making these decisions, it requires a lot of thinking about risks, absolute, relative, personal & population. I think this isn't a short MO appointment. This is a LONG appointment with questions and hopefully an MO who can explain and personalize all these numbers & do a crash course in stats if necessary.

*Pan H, Gray R, Braybrooke J, Davies C, Taylor C, McGale P, et al. 20-year risks of breast-Cancer recurrence after stopping endocrine therapy at 5 years. N Engl J Med. 2017;377:1836-46. (clickable link to free article in 1st para above)