How many percent reduction in 10yrs recurrence shall do chemo?
I just met my MO, he recommended chemo ACT 2 weeks 8 rounds cause I have a positive lymph node. However, mine is strong ER positive and Her2 negative, that is supposed to react to hormone very well, and I will go for radiotherapy definitely. He said, mine ten years recurrence starts from 25 %, with hormone it will cut by half which means down to 12.5%, then with chemo will cut by 5% which means to 7.5%. I asked whether I can have a light dose chemo, he said that won't work effectively. And he said, he thinks I am health, I am 52 years old now, not young.
I haven't had time to search for all the data now, just thinking that, yes, I am health now, but after dense chemo, definitely I won't be that health. Thinking of the 5% benefit, is chemo beneficial for me?
Anybody knows, usually what percentage benefit shall be considered for chemo? And what is your expected chemo benefit percentage?
Comments
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Did you have an Oncotype or Mammaprint test done? I ended up having to do chemo because of my Mammaprint results came back high risk for reoccurrence. Mine hadn't spread to my lymph nodes and I was Stage 1.
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Hi Jenkins00,
Oncotype dx is not funded in my province, for my case, but it is accepted by oncotype dx, and funded by some of the US areas. My MO said, he would 100% recommend this, so I spent CAD$4200 myself to order this test.
However, I still wonder what percentage of chemo benefit will be considered as beneficial. So when my result comes back, I know how to handle it. With 5% improvement, my MO recommends 8 rounds of ACT, I will definitely study further. 5% improvement is recurring, not mortality. My MO said I am health so is okay to spend through 8 rounds, who knows if I will be still health after that. If I gained that 5%, but lose the power to fight the rest possibility of recurrence, then ..
And, my MO explained to me, right now chemo is decided using the TNM staging system, I am stage IIB, if my lesion is 1mm smaller, then I am in IIA. However, in the new staging system including grade and receptors, mine is 1B. I don't understand why chemo still uses old system.
Next step is to find, what percentage means moderate risk score in oncotype dx. As patient, I think we shall know this number, not just low, moderate and high.
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Hi Jenkins00,
Why your chemo started so late? Almost 3.5 months after surgery, my MO said shall start with 3 months.
And radiotherapy must do after chemo, so right now, nothing can do, waiting for chemo decision.
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Cathy, I actually did radiation first because they didn't think that I would need chemo. The Med Onc almost stopped the radiation the day of my first treatment since I didn't have oncotype results yet, but then said I could do chemo after radiation if needed. My score was 29 and I am 61 years old, so they did recommend chemo following radiation. I did opt to decline chemo - seen next paragraph.
The decision about how many percent reduction makes chemo "worth it" really is a personal decision based on a lot of factors. Some people who are married and / or have children are willing to do chemo even if the reduction is only 1% or 2% because stopping recurrence / death is that important to them.
In my case, I am 61, single, no children. The reduction for me is between 3% and 7% depending on how I figure it out. The Predict program says 5% (I think that is mortality benefit, not recurrence?) in 15 years. For me, I decided that the current quality of life was more important to me than doing chemo to have a 5% greater chance in 15 years.
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Cathy, what province are you in?
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Beesie,
I am in BC. Our criteria is one micro met sentinel node which is under 2mm, mine is 3mm.
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Hi DorothyB,
I am 52 years old, married with one daughter who is going to be 15. Marriage is just so-so, I've sacrificed to family too much, now it is time to enjoy life.
If I were you, reduction only between 3% and 7%, I would also opt to no. Studying the oncotype dx contents on their website, they did not clearly state what is moderate risk for node positive patients. Maybe the final report will clearly state this number, right?
I found too much needs to be studied, but so hard to get appointments with MO. Every time I met with a doctor, I have tons of need to be studied. I even don't have time to cry, not interested in getting those caring calls while no any real helps, I am so grateful this community is here, we women support each other.
Other factor is what kind of chemo will bring that reduction data. Mine is dense dose 2 weeks 8 rounds, if this option creates out 5% deduction, I definitely will say no, but someone did get a light TC 4 round plan, my MO said that is not effective, I know, but can I have the reduction data for that. No. I know I have too many questions.
While looking at chemo options, it is patient's decision what is moderate, what is standard.. If you don't ask questions, they just give you standardized plan.
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Cathy, Once you get your oncotype results, a few things that will be helpful:
1) The actual report (assuming it is the same as the US) does not really give you an accurate chemotherapy benefit. The report will have three big numbers. First is your Distant Recurrence Score (RS) - mine is 29. Second is the Distant Recurrence Risk at 9 years if you do hormone therapy. Mine is 18%. I don't have any reason to believe that those two numbers are not accurate.
The third number is the one I don't like being shown as it is. Mine (over age 50 with RS score over 26) says that the Absolute Chemotherapy Benefit is > 15%. This makes it seem like it would make a HUGE difference if I do chemo. However, if you read the second page of the report carefully, you will find that they usee one study to determine benefit for those with a score of 25 or under and a different study to determine the benefit for those with a score greater than 25. In looking at the study for those with a score of 26 or higher, it says "The magnitude of the absolute benefit of chemotherapy was ~6% at RS 26, and increased as the RS results increased from 26-100, with an average absolute benefit of ~24% and a conservative group estimate of >15% based on the width of the confidence intervals." So, if my score were 26, the front page of the report would say that my benefit would be >15% while based on the study, it would really be closer to 6% (+ or - a confidence interval).
After realizing this, I spent a long time trying to find the details to see how much the study would show the actual benefit would be with my score of 29. Finally found it . . .
2) I found two good sources on the Oncotype website.
https://www.oncotypeiq.com/en-US/breast-cancer/hea... you can scroll down and click on Node Negative Predictive Clinical Trial Results to got more info also. I also found this:
https://www.oncotypeiq.com/en-GB/breast-cancer/hea... if you click that you are a health care professional, then select node-negative to download the information, you will find a graph that shows the possible range of benefit from chemo based on your RS score.
Based on these, my absolute chemo benefit is way under 15%.
3) Beesie frequently lets people know that there is another test available to medical oncologists called the Oncotype RSPC which gives even better info. My Med Onc wouldn't do it for me, but yours might.
4) There are also two on-line estimators which aren't as personalized (so likely not as accurate) as the RSPC. (of course, remember, even with only a 1% recurrence rate, someone has to be the 1%) I couldn't find the best, most recent thread on them, but did find this: https://community.breastcancer.org/forum/78/topics/870921?page=1#post_5384034 scroll down to SpecialK's post on April 9th and read from there.
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DorothyB,
Thanks for so professional guideline. Mine is node positive, they have another document for node positive patient, and there is chart to show this absolute chemo benefit varies by the dx score. You can find, the score well illustrate the benefit of chemo, with the same score, the benefit is the same no matter it is node positive or negative, I guess node situation is already considered in the score.
Since the chemo regimen is pretty hard that the MO recommended, so I am thinking only 10+ percent benefit is worth to do. Then I look at the node positive chart, it will be score 42+. Finger crossed, hopefully good news this time. Too many bad news this summer.
Thanks, dear ladies, let's fight together. I've never seen women so kind to each other, only here.
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Hi DorothyB,
Did you finish radiotherapy? And did you start to take hormone pills?
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Cathy, I finished radiation approx July 23rd. I started Tamoxifen on Aug 1st. I am post-menopausal, but have osteoporosis, so tamoxifen was the best choice. I was happy as I researched that it seems to maybe have less side effects.
I started w/ 10 mg. I took extra a couple of times several days apart to build it up in my system faster since it has a very long half life so takes a long time to build up in your system. Then after it had built up, on Aug 13, I was ready to ramp up to 15 mg / day. I took an extra pill in the morning on the 13th, 15th, and 17th. Each time, I had nausea about 25 - 27 hours after taking the extra pill. It was bad enough on the 17th that I vomited 3 times in an hour. So, dropped back to 10 mg. I was out of the country and wanted to be OK until I was home.
On Aug 22nd, I started ramping up again - this time doing an extra 1/2 pill at night w/ the regular 10 mg pill. That would get me up to 12.5 mg. Once I started that, I had a little nausea at various times every day - but not bad enough to vomit. That nausea continued until maybe 10 days ago, so over a month. I've only had nausea once in over a week - and it was very mild.
I have a short out of town trip this month. Once I get back, I was planning to try again to ramp up to 15 mg. However, revisiting the benefits as I have been posting here and on other threads discussing whether smaller dosages are as effective, I've started wondering if I should instead just drop down to 10 mg. I fix my pills for several days at a time and today is pill day . . . not sure what I am doing yet.
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Oh - and I lubricated very well starting several days before radiation and until several days after. I got very red and had some discomfort, but no raw skin, etc. I also drank as much water as I could.
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DorothyB,
Thanks for so much information, yeah, we got to study a lot ourselves. So your 9 years recurring rate is around 18% with hormone? My MO said mine is around 12% (next time, I must ask him to write those for me) as average group data .. anyway, like my friend said, just waiting for the score.
That was my first contact with MO, now I know for not too complicated case, they just use standard and statistics from clinical trial study. They provide facts and options to patients, then it is patient's decision. The oncotype dx score is the best second opinion, finger crossed, I am really scared of ACT regimen. Hopefully my CT Scan can back as normal, MO said 98% will back as fine for my case, that is the best news I got from first appointment.
Enjoy the weekend!!!
Your tips about hormone and radio therapy will be very useful later.
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Cathy,
My chemo started late because after I had my bilateral mastectomy I had an area on my left breast that wouldn't heal. I ended up having two more surgeries to address this issue.
I thought I wouldn't need chemo but my MammaPrint came back high risk on one tumor. I had two tumor's. 29% if left untreated and also Luminal B.
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Jinkins0,
Thanks for sharing. Your AC regimen is quite light dose, safe and won't bring big harm to the body, if I were you, I would also save this 5 or 6 percentage. But for me, mine will be the standard ACT which is more strong and harmful to the body, with also only 5 or 6 percentage, things are different.
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Cathy,
1) the Oncotype report says 18% chance of distant recurrence in 9 years if I did hormone therapy for 5 years. It doesn't give chance of recurrence if I do not do hormone therapy.
2) the Oncotype website pdf for HR+, HER2-, node-negative, early-stage, invasive breast cancer pdf has a graph showing approx 14% chance of distant recurrence with hormonal therapy alone and approx 8% chance of distant recurrence with hormonal therapy and chemo so the chemo benefit would be about 6%
3) predict breast cancer tool for my info shows that in the next 10 years: 76% of those treated w/ surgery alone would still be alive. An extra 5 people would be alive due to doing hormone therapy (so 5% benefit). With chemo and hormone therapy, another 4 people would be alive (so 4% benefit). 9 people would die from other causes. I believe that leaves 6% who would be dead even with chemo and hormone therapy. So, since I'm skipping chemo, there is a 10% chance that I could be dead due to cancer in 10 years. However the 4% benefit of doing chemo isn't worth it for me.
4) lifemath results show that in the next 15 years, 61% would be alive with surgery only; 18 - 20% would have died from other causes (more die from other causes if they don't die from cancer
); taking only tamoxifen would benefit me 6%. If I also added chemo, I would have an additional 3% benefit (not worth it to me). So, skipping chemo, there is a 14% chance that I could be dead due to cancer in 15 years.
So, benefit of chemo to me is probably between 3% and 6%. The benefit of tamoxifen to me is probably between 5% and 6% based on predict and lifemath. Oncotype doesn't show benefit of hormonal therapy, but shows 14% - 18% chance of distant recurrence which is sort of in line with the predict and lifemath chance of death in 10 / 15 years.
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Hi,
I chose to do chemo with a benefit of 5-7%, but mine was TC, not ACT.
For me, it was worth it knowing I've now done everything I can to prevent a late distant recurrence (plus OS+ AI, diet,etc).
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DorothyB, do not increase your dose of tamoxifin. You may be setting yourself up for a very toxic reaction. Repeat...don not increase. Sorry to be so sharp but I am quite concerned for you.
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OnTarget,
Yes, if it is TC, then worth to do. But mine is ACT, due to positive node. But anyway, influenced percentage is not that big.
Surprising to know chemo benefit and hormone benefit, we shall do lots of body exercises, not rely on treatment only, to fight potential recurrence.
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DrothyB,
Thanks again! I will look at them later, to spend time during dreadful waiting.
I've never known chemo benefit is less than ten percent among ten years period, even the people around me. Thanks this community, I've learned so much, that I asked this question. My MO definitely recommended, then I know only five percentage benefit, big surprise to me and friend who went with me.
Enjoy weekend! I will investigate my situation.
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Hi OnTarget,
Any findings regarding diet to prevent recurrence?
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I also was dx as stage 2b-had my lump been 3 mm smaller in one dimension- would be 1b-had 2/2 positive sentinel nodes-given choice of 4 rounds of TC or 8 rounds of ACTdense dose- my onco type was 45- so high risk for recurrence. Tc considered about 3% less effective that act ,but still effective--I researched both protocols==I was 68 at dx and have a 15 y hx of hypertension which upped my risk of cardiac myopathy with ACT. I chose the tc-and accept it may not have helped as much as the ACt--had I been 50 years old I may have chosen differently--
also had 33 rads treatments
I used cold capping--Penguin brand and saved 75-80 percent of my hair -I likely would not have had as good results with act-A is very hard on hair,. I have been on letrozole almost 2 years and am doing fine at 2.5 years out
We all have to make our own choices-I am at peace with mine
I might suggest you get a second opinion once all your tests are back-there are many treatment paths--hugs,K
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DorothyB,
Not sure which chemo regimen the oncotype dx uses to do estimation. For me, DC has 5 % benefit, while ACT has 7 % benefit. I would love to take DC for that 5% over 15 years, but don't think ACT is worth to do for the additional 2 %. But my MO said hormone benefit is above 10% for my case, so estimation varies, anyway, it is good to know the rough picture.
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Hi kaylie57410,
Thank you!! I am 52 years old and health, all normal results in pre surgery checkups, that is why my MO recommended this ACT. But getting second opinion takes time, it takes one month to get the appointment, and actually we only have two MOs in our city, and those two work together. But the one I just met is a backup that day, the referred MO is away, hopefully next time he will be back. But it is good that this MO gave me lots of facts and helped me order the oncotype dx, he thinks I am strong, can spend through ACT no any medical difficulties. I will request this again next time.
So TC still made hair loss, right? I am a life time short cut, not sure if I need to cut hair off totally if I am offered TC. Is TC the right name? The only difference is 4 rounds of taxol.
Thank you!! Enjoy weekend.
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Hi kaylie57410,
Another question, the penguin cap only can be ordered on internet, right? I am in Canada, don't know if can find them in store or not.
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Cowgirl, I am surprised that you are so strongly against increasing the tamoxifen dosage. Curious as to why?
I did decide earlier today to go back down to the 10 mg / day instead of increasing or staying the same.
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DorothyB - You Rock Girl!! I'm 59 y.o. and had right mastectomy last month. 2.2 cm tumor was ER+90%, PR-, HER2- and ki67 40%. I really appreciate your analytical mind and your posting of the NHS/Univ. of Cambridge Predict Breast Cancer Tool. Using this, my 10 yr. survival is 84% with AI alone and 87% with chemo too. 92% survival rate for women without breast cancer, so my risk is 8% with AI and 5% with chemo also, right?
Comparatively, my OncotypeDx score was 28 and 17% nine year recurrence risk with AI alone. Very close to yours and our ages too. My MO says 4 cycles of Taxotere/Cytoxan will decrease my risk to 10%, so it drops 7% more. My MO and pharmacist at the breast cancer center at OSU in Columbus say 7% risk reduction is Huge in the cancer biz. However, the risk of the Taxotere causing chemo induced peripheral neuropathy (CIPN) is at 30-40%, and that may really screw up my quality of life long term!
What's also frustrating is that OncotypeDX scores of 26-30 used to be an "intermediate" range ( just last year!) and chemo recommendations varied with individual factors. Now, it's so B&W! If you're 24 or under, no chemo; if you're 25 or higher you need chemo, according to my MO the intermediate range has been removed. I know this has saved countless young women, but for us older gals, there's not much wiggle room. In fact, there are NO studies on women over 50 y.o. who decline chemo! I'm sure there are many more like you and I that are looking at 2 decades of expected lifespan and weighing these numbers in hopes of squeezing out the best life has to offer us in our "golden years"!
I'm leaning toward taking the Taxotere and icing my hands and feet, as one study showed evidence it does reduce CIPN, but it was a small study and no more have been done. There also is very little follow up done to document how much CIPN affects women after they've finished chemo treatments. Wish there was more information out there. I'm still undecided though on chemo, as my risk of recurrence is in the single digit. Any thoughts DorothyB? Or anyone else? I have a tentative start date of Oct. 22nd for my first chemo.
Thanks so much!
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Cathy, you could get a second opinion from another oncologist.
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Cathy,
For diet at the moment I'm just focusing on healthier (less junk, limited alcohol, less processed, less beef, more veggies,etc). Nothing earth shattering or special.
Penguin Cold Caps have to be ordered online as far as I know.
I read a few studies on CIPN and decided to freeze my hands and feet (and scalp). 4 rounds of TC later, I have most/a lot of my hair and my hands and feet feel fine. No idea if I would have gotten CIPN, but a little frozen hand pain during chemo was worth it just in case. And the cold capping was totally worth it for me. To strangers I look normal, to friends my hair looks thin. A win in my book.
These are tough decisions, I hope you are finding some clarity for yourself!
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Kaaadams, maybe a second opinion also?
The decision about what to do is so individual so I'm not about to advise others. I know some have chosen chemo with just a 3% benefit and that is fine for them. It seems like the predictor's 8% benefit is really close to your doctor's 10%. You need to decide if you want do do chemo with a 6% chance that it will stop recurrence with no side effects and a 3% chance that you will get the CIPN along with no recurrence.
I opted out of chemo, so haven't researched side effects, %s, etc at all.
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