Is hormone therapy the ONLY tx for ER/PR+? If so, WTF is that?

Bbeckom

I hate the side effects of hormonal therapy drugs and have just gotten diagnosed with a second reoccurrence while on these type drugs. My cancer is slow growing and apparently needs very little estrogen to grow as I have been on ovary suppression shots + pills (tried a couple- last exmestrane) the last 2 years & still have a very small reoccurrence (and note: that is after a prior 2 years of tamoxifen before first reoccurrence). I get the impression that these drugs are tough for others too. However, my oncologist (and others I saw previously or for 2nd opinion) have indicated hormonal therapies (Eg either tamoxifen with the blocking or other drugs with starving) are the ONLY current tx for ER/PR+. And yet this is the most common type of breast cancer right? So WTF aren't there other treatments or research being done for the most common type of breast cancer?! I am angry

Jons_girl

hi bbeckom: Im sorry your going through a recurrence. We are here for you. I’m hoping beesie will reply to you. She may have some info regarding other treatment options.

I didn’t do hormone therapy ie:tamoxifen. And chose no rads. But my dx was stage 1 grade 1. I am not sure what type of cancer, stage and grade your first and second tumors were. If you listed more info about your dx in your profile that might help others here know what your dx is so they can answer your questions.

Sorry I cant help with more info. But I’m here for support.

Beesie

If you've just had another recurrence, you have every right to be angry.

The MO you spoke to is right that hormone therapy drugs are the only post-surgical meds available for ER+/HER2- cancers. While these drugs stop many recurrences from happening, they are far from 100% effective. On average, they reduce the risk of a local recurrence (i.e. in the breast area) by about 50%, and they reduce the risk of a distant recurrence (i.e. metastatic) by about 1/3rd. So there are many women who will develop recurrences even while taking these meds.

And yes, they do have side effects. Some patients tolerate them well while others have a horrible time with them.

But they are all we've got. The reason that the research for ER+ cancers has been focused on hormone reducing drugs is because ER+ cancers are driven by hormones. So hormone reducing drugs are the most effective way to stop these cancers. Consider that for those who have triple negative cancers, i.e. cancers that are ER-, PR-, HER2-, there are no drugs available for early stage patients (other than chemotherapy). That's because there is no known single driver of these cancers that can be targeted with a drug. The drugs we have for ER+ cancers are far from perfect, but at least we have something. And the results are there. The percent of ER+ breast cancer patients who go from early stage to metastatic has fallen significantly over the past 20 years.

Because hormones drive ER+ cancers, what medical researchers have been working on for the past 40 years for ER+ cancers are new and different hormone reducing drugs, trying to find drugs that are more effective and that have fewer side effects. When I was diagnosed 15 years ago, we had Tamoxifen, with AIs just coming into usage with early stage patients. Today there are a much greater variety of hormone blocking drugs available, some for early stage patients and more for later stage patients (and it's likely that over time these drugs will eventually be moved to early stage patients). Each drug works somewhat differently and each has different side effects, so while one drug might not work for someone, another drug might be effective.

As for ongoing research, doing a quick search on the Clinical Trials database, when I input "Breast Cancer" and "ER+", I find that there are currently 625 clinical trials.

Breast cancer stinks. There is no cure, no silver bullet drug that can be administered to all patients (or all patients with one subtype, such as ER+) that guarantees that all patients are cured. But hormone therapy is effective for many patients, and research continues to find new and different drugs that work for more patients. I'm really sorry that you've had this recurrence, and I understand your anger. Hormone therapy drugs are effective for many patients. There is a lot of research being done. But what's out there right now hasn't worked for you. What we have isn't good enough. I think everyone would agree on that.

What was your initial diagnosis and treatment? And what is your current recurrence and treatment plan?

Bbeckom

hey! Thank you for your responses! My first cancer was invasive ductal carcinoma stage 2 (bc of tumor size) ER/PR+, slower growing in left breast. 2nd & now 3rd time is small reoccurence under skin with same characteristics & slightly different percentages of ER/PR & ki-67. Still slow growing. I think 2nd & now 3rd would be considered stage 1

1st time (at age 34) I had a lumpectomy & radiation. Onca type score was lower gray zone 18 so oncologist decided we should do tamoxifen. Tamoxifen made me feel bad initially but I was fine after a month or so.

2nd time (age 36) I had another lumpectomy bc reoccurence was right under the skin & my surgeon thought it was cells that escaped in biopsy needle tract. Mammaprint again indicated chemo might not be beneficial. I then had 2 years of ovary suppression shots (zolodex & 1 other) and tried 3 different AIs (if that's correct category name). The last combo of I believe zolodex and exmestrane had the least bad side effects but the side effects still affected my quality of life—-eg. I was depressed and tired and foggy headed & didn't feel like myself despite Effexor being increased or doubled

I don't mean to dog the progress that's been made. It just seems like a lot of women have issues with & can not tolerate hormone txs— I heard that from other women at support groups my first time. And the hormone drugs aren't fool proof—especially not with my slow growing cancer that doesn't need much to grow, apparently. And since hormone responsive is the most common type, I'd expect more options or at least research on other things....

Unfortunately, my oncologist said a few mos ago that hormone therapies are the only medicine txs & that he didn't know of any research or experimental therapies for my type of cancer (He said most research & new therapies pertain to metastatic)

I will see what he says about reoccurence today. New surgeon wants to do a mastectomy

it's just unacceptable to me that the only known option(s) are hormone affecting related medicines that will probably affect your mood & may make you feel awful for 5-10yrs...

and the cancer doesn't even eat much so even completely turning ovaries off with AI doesn't prevent or affect immediately

ShetlandPony

Now that you have recurred on tamoxifen and on the aromatase inhibitors, the usual therapies for early stage ER+, maybe your onc will offer you a hormonal therapy this cancer has not yet seen, usually used for metastatic breast cancer. I would guess Faslodex, perhaps with Ibrance added. While Faslodex is monthly injections, my onc speaks of it as the easiest of the hormonal therapies in terms of side effects such as mood, achiness, etc. You would still need ovarian suppression or removal, though, to use it.

Cowgirl13

Would chemo help?

ShetlandPony

Some stage III folks with residual cancer after Neoadjuvant chemo are given a course of Xeloda, which is a pill chemo and pretty tolerable.

Jons_girl

bbeckom:

How’d your appt go? Your newest recurrence did you share what that is? I may have missed that in your post.

Hope all goes well for your treatment. Are you having another lumpectomy?

Sorry for all the questions. We are here for you! Hope you had a good thanksgiving.