Weighing my options and understanding what's being offered.

Mary222

Hi, I have stage 1, grade 2, lobular, ER/PR+, HER- cancer with no node involvement (0/9) and a tumor under 1cm (9.6mm). I have small breast and multi-focal cancer so once I realized I needed a mastectomy on one, I opted for a double. This means that, risk-wise, I've been able to skip radiation treatment.

I went for my follow-up, and chemo was off the table pretty quickly, but they really want me to take tamoxifen. Rationally, I can see the point, but emotionally, I dislike it. The junior doc quoted the 40% reduction in recurrence rate, but that includes local recurrence, and I had a DMX. The senior doc agreed with me that the reduction in distant mets is roughly a third, and that's over 15 years. Predict gives my overall survival at 10 years at 92% and lifemath predicts cancer death with 15 years at 7.8%. Both predict under 10% for 10-15 years without any treatment.

Chemo and tamoxifen both give some benefit, but they are small, and with these numbers, we're talking 2% better odds of survival over a decade or more (afaik, if anyone has better info, please direct me). Predict says 1.9 women will be alive in 10 years with tamoxifen. Life maths says total lifespan improvement from tamoxifen is "0.6 years, or 234 days over expectancy without therapy or 32% fewer cancer deaths after 15 years". This does not strike me as a huge improvement, but of course it's not that we all get a half year deducted, it's that 1 or 2 of us stop a decade short and no one wants to be in that group.

I'm waiting for my genetic screening to see if this changes anything, but then agreed to take tamoxifen as long as I don't have many side effects. However, I'm hesitant. This may be because I'm pre-menopausal and feel like things are still regular and I don't want to risk menopause just yet, and partly because I notice how quickly chemo was removed for its risks, but tamoxifen wasn't. Admittedly, it seems obviously less toxic than chemo, but the risks aren't the same as the side effects that prompt many women to discontinue use. Tamoxifen brings a relatively small increase in uterine cancer is 1% per year (is that correct?) which means I'm literally increasing my overall risk of cancer, but opting for one with an easier cure than bone, brain, lung or liver mets. Logically... sure, but also... wow. I do note that this risk seems to be in post-menopausal women more often. Having said that, I could become post menopausal pretty quickly if I take it.

Also, I'm far less likely to get local recurrence because of the DMX - doesn't that further reduce my risk of mets since the cancer isn't getting a second chance to start over again?

The other unusual thing about me is that I maintain a healthy body weight, eat well and exercise routinely, and have done so since childhood. This has been my secret weapon for all matters of health, and I find myself emotionally wanting to depend on that instead of taking a pill. I've seen data on preventing breast cancer through exercise, where's the data on preventing recurrence though?

My current plan is to try to tamoxifen and then stop if it makes my life difficult. However, I'm also looking for any reasons to not start it overall, just to do the internal sales job I need to do to tell myself to take a pill for 5 years. Is there any research on the treatment outcomes for women such as myself so I can refine my data to any degree? Suggestions of where to look?

ETA: I should mention I'm trying to weigh the benefits of tamoxifen against specific risks. Taking it for 5 years gives me a 1% chance of endometrial cancer. It also gives me a .7% increase risk of DVT/PE from baseline. Neither of those are as show-stopping as mets to bone etc. but still serious. I'm looking for more info because these odds are so narrow.

Also, for everyone who tells me to 'do everything possible' can I ask - is it because it's a pill? I know it seems simple to just take a pill but I'm concerned about menopause, or aches, or weight gain etc. disrupting my active lifestyle that also confers a lot of benefits. That's a 20-40% benefit in reducing the odds of mets that I'm afraid to lose since it comes so naturally to me now. Do you do absolutely everything possible to reduce every percent of risk? Like working out 150 minutes per week, quitting smoking and keeping your BMI under 25? I feel like we underestimate how difficult it is to change our lifestyle mid-life, no matter how motivated we are in theory to do so. My resistance to taking the medication is based on a long-standing belief that lifestyle determines my risk, and my fear of losing that. I can change, but I feel like I need to 'sell' myself on the logic that this is the best mathematical path in order to make the lifestyle leap.

And for those asking about the oncotypeDX, I'm getting genetic screening done for 20 or so genes related to breast cancer. Is that the same thing?

moth

I can't help with the rest but re your question: " I've seen data on preventing breast cancer through exercise, where's the data on preventing recurrence though?"

This 2017 lit review identified which lifestyle modification factors have evidence of preventing recurrence:

http://www.cmaj.ca/content/189/7/E268

Lula73

I go back to the fact that you’ve “always maintained a healthy body weight, eat well, and exercise routinely” and it didn’t prevent the cancer from developing. The average woman has a 12% risk of developing breast cancer in their lifetime. You already fell into the minority with the diagnosis. Anything to up your odds of keeping local recurrence and/or distant mets at bay seems like a good idea. Just my $0.02.

ElaineTherese

"Also, I'm far less likely to get local recurrence because of the DMX - doesn't that further reduce my risk of mets since the cancer isn't getting a second chance to start over again?"

Not necessarily. Remember that cancer is a systemic disease. Cancer cells can break off from the original lump and travel throughout your body through your bloodstream and/or lymph system. There could still be microscopic cancer cells in your body, looking to set up shop somewhere. Hormonal therapy is a systemic treatment. It seeks to deprive ER+ cancer cells of the estrogen that helps them grow and divide.

In any case, since you're stage I, your chances of a recurrence and going Stage IV are pretty slim to begin with. But, recurrence and mets are not the same thing.

Good luck!

KBeee

You can go from stage 1 to stage 4. Hormonal therapy helps prevent this. The 234 days is misleading. It is an average. If you do not develop mets, your lifespan will not be impacted. If you develop mets, you are incurable, and your life span will be years or decades shorter. Your risk is low, but it is not zero. It depends how much of a risk taker you are. Tough decision. Good luck. Take time to think about it

farmerlucy

I’m wondering about them taking chemo off the table and the possibility of getting the Oncotypedx test. I know it is to help determine chemo or not, but I was happy to have a backup to my other stats. Now is the time to collect as much info as you can. You will always have questions, and this test may answer some. God forbid you are surprised by a high score, but it has been known to happen.

My oncotype was low, but no doctor ever recommended I not do hormonal therapy. I needed to know that I did everything I could in the event of a recurrence. Still I only made it four years on HT.

Best of luck with your decision.

bluepearl

An oncotypeDX score would help. Mark Twain once said, there are lies, damned lies and then there are statistics. Please do not base your decisions entirely on them. Research supports individualized cancer treatments since cancer varies within every single woman. I am glad that you have maintained a healthy lifestyle, which will help a great deal with preventing a recurrence. So will tamoxifen. You don't want to become the rarer duck that gets unlucky and besides, women are showing up with recurrences after 5 years (ER+) despite otherwise good prognosis. Stage 1 progressing to 4 is rare but it happens. I haven't had any problems with se (so far) from tamoxifen; not everyone gets them.

Georgia1

Mary, there is an active debate on this topic on the thread called "stage 1 node negative breast cancer question" that you might want to check out. But personally, with stats much the same as yours, I decided to take the Tamoxifen for at least two years. Maybe then we'll have something better, but right now it's the best we've got and I want to reduce my risk of metastasis to the GI tract or elsewhere, which can happen with both ILC and IDC.

Optimist52

Mary the Oncotype DX test IS different to genetic testing, it's a test of the tumor itself to determine the benefit of chemo. The result assumes taking tamoxifen or an AI.

Genetic testing uses your saliva or blood to determine if you have any mutated genes known to increase your risk of various cancers (or other illnesses).

gb2115

It's metastatic spread that is the big concern, and it can happen with mastectomy. All it takes is a cell to get out (negative nodes are no guarantee) and lay dormant. I have a family member now stage 4 in this situation. After mastectomy many years later. Tamoxifen keeps those cells at bay so they are starved and can't grow. I honestly think risk of stage 4 is nothing to brush aside. It's not curable. To me any % risk of that is not an acceptable risk. But from my perspective (being diagnosed in my thirties which is already against the odds), statistics don't mean much. I am grateful there are meds to take.

Ingerp

Mary222--just jumping in to say I'm another woman who is very leary of over-treatment. I have not met with an MO yet, but have a feeling that Taxol/Herceptin will be recommended, then rads, and then an AI afterwards. I'm heavily driven by the numbers too. I'm on board with the rads, but may say no thank you to the rest. At a minimum I'll have to be convinced that all of the heavy drugs will significantly impact my outcome.

moth

Fwiw, I look at the bar graphs the other way. I too am on the wrong side of the odds already - I shouldn't be here. My calculated risk of having breast cancer is way below the norm according to this https://www.cancer.gov/bcrisktool/

(& that calculator doesn't even count breastfeeding in its model because most NA women don't breastfeed long enough but I did for years...)

Having been on the wrong side once already, I'm not assuming I'll end up on the good side with regard to recurrence and survival.

Predict for me says (I'm rounding) 80% of women will be alive 10 years with surgery alone, another 5% with hormone treatment, another 4% with chemo.

So if they do nothing else than surgery 20% of women with my stats will be dead within ten years.

20% is 1 out of 5 women. I do not want to be 1 out of 5. Anything that lowers those odds is well worth it for me as I want to be around for 30-40+ years. Doing everything brings it down to almost 1 out of 10 for me.

I think for some of you the numbers are a lot smaller and then the decisions get tougher. It definitely can be a difficult decision.

Mary222

Thanks so much for everyone's input. I think - today, at least, that my plan will be to try the tamoxifen on the basis that yes, the 2% increased risk of a PE or endometrial cancer is worth the 2% risk reduction in mets given the fatality of mets. BUT... if I have a lot of side effects that interfere with my healthy lifestyle, then I'll stop the tamoxifen. And I'm not going to spend a year or more of my first 5 years in prevention struggling with it or trying to get on track either. My general good habits also confer (according to the research linked by moth) a similar % reduction in risk as the medication. It would be a different story if I was trying to change my lifestyle, which is very difficult to accomplish and sustain in middle age, but I have many beneficial habits in place already and maintaining them affects my odds as much as medication does.

At the end of the day, with both factors on board, I still have a 3-4% risk of mets and I can't change that. Ideally, I can benefit from both lifestyle and medication. But for my plan B, I'd pick the more pleasant lifestyle option over medication that was ruining my quality of life. Hopefully, I'll simply be one of those women who isn't particularly affected by the drug. Based on what i've read, having a healthy body weight and exercise also helps to reduce the symptoms and risks of the drug itself, so I'm going to spend the next few weeks nudging myself towards returning to activity and weight that will also improves the odds of the drug being more tolerable as well.

Georgia1

Thanks for the update Mary, and wishing minimal side effects for you.

Jo62

New to forum, hello all. I am just finishing my therapy-3 months of chemo and 30 days of radiation. My MO has now prescribed Arimidex. Taking the listed items below into consideration

I am weighing my decision to go with AI's.

---I have been successfully managing rheumatoid arthritis for 15 years with medication

---I was diagnosed with depression 30 years ago and since have been taking medication successfully

---I recently (a month before starting chemo) had angioplasty and dx with cardiac disease

---I have osteopenia

---I am post menopausal and don't have ovaries or a uterus

I have been reading alot of research, along with personal experience on this board and others and it seems that AI's might be an antagonist

for all of the above. I am very fearful that any AI or Tamoxifen would affect quality of life. I am visiting with Rheumatologist and MO this week

and would like to know if anyone else has had a similar experience? I am leaning toward refusing all hormone therapy.

Georgia1

Hi Jo and welcome. I have osteoporosis, which pretty quickly moved my MO and me to Tamoxifen rather than an AI, and being post menopausal myself the side effects have been truly minimal. That's something you might want to explore given your osteopenia: Tamoxifen actually helps with bone loss so there's an additional benefit beyond the reduction in cancer recurrence risk.

As for skipping altogether, I don't personally recommend it but the benefit/risk ratio depends on your stage, grade, lymph node involvement and ER scores. If you make that info. public in your profile settings you'll get more informed opinions.

Wishing you the best.

Jo62

Thanks Georgia1, I have made my DX public now, didn't realize I had to do that. Good to hear that you have had a good experience with Tamoxifen. When I asked my MO about the Arimidex and

the SE's with Osteopenia he quickly recommended Zometa to combat the bone loss. Zometa also has a side effect that makes dental work dangerous! That was what spurred me on to doubt the Arimidex

as an option. SE's aside, I am already taking 9 pills a day and hate the idea of adding 1-2 more to the that.

Georgia1

Totally understand not wanting to add more pills! For me, the choice of an AI + Zometa, vs Tamoxifen only, pretty much sealed the deal for choosing Tamoxifen. And since you are stage 1 grade 2, the added benefit of an AI instead of Tamoxifen might be minimal. Just something to discuss with your MO.

Ingerp

This is all good info. I didn’t know they ever prescribed Tamoxifen for post-menopausal women. Definitely something to keep in mind.