DOSE DENSE AC+T recommendation??
Hi all,
I am 31, ER 98%+ PR 83%+ HER2-. Stage 1A grade 1 (confirmed by 3 pathologists). Completely negative nodes. Clear margins. No LVI. No genetic mutations. Tumor was 1.3cm. Oncotype 20, "High Risk" Luminal B on Mammaprint (but on cusp of "high risk" scale).
After getting 2 opinions from oncologists here in Austin (#1- definitely do 4 rounds of TC, #2- maybe do 4 rounds of TC, comfortable with only HT), I went to MD Anderson for my last opinion. I was told that because I am young and healthy I should do DOSE DENSE AC+T!!! I couldn't believe it. That's what you give to Stage 3+, triple negative, or inflammatory breast cancer!
I asked him what my total benefit from chemo would be. He said between 3-5%. I said what would the total benefit of AC+T vs. TC be? He said <1-1%. Are you kidding?! The risk of leukemia from that regimen is 1%! The risk of cardiac toxicity is at least that as well! And while I don't have a strong family history for cancer, I DO have a strong family history for heart disease!
I refused and told him I would agree to do the TC but not the DD AC+T. He said that would be fine. He also said he would NOT recommend for me to start ovarian suppression after chemo, in direct contrast to the SOFT trial results, because THAT would be too hard on my body. (???)
It is upsetting because MD Anderson is supposed to be one of the leading cancer centers in the country. I was warned that they like to be aggressive but I had no idea HOW aggressive. Giving me DD AC+T just seems nuts to me. It makes me think they don't care if you drop dead of the side effects as long as you don't die of the original cancer and can be counted as a "success" in their survival statistics.
Does anyone else think this is totally crazy??
Comments
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I know it's crazy! I am different in that I had a node positive and grade and stage II but That is exactly what MD Anderson recommended for me as well. I think it has to do with your age. When you are young they want to be as aggressive as possible! It's just what they do! I took it.... I am older than you (
42) but I wanted to throw the sink at it. I want it gone and not to return ever!! Go with your gut though.. trust the MO you are going with. There are lots of side effects of the different chemo cocktails..... but you are young and you will do fine! It's really tough to wrap your brain around chemo and the toxicity of it. But its a cancer killer!!! That's how I try to think about it.And....... There are MANY, MANY, MANY women on here.. Stage I,II,II and IV who have done AC-T..... it's not only for Stage III+....... although I am sure you wrote that in kinda a panicky moment
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Leigh, did they give you benefit stats in %, like they did for me? Would you have done the DD AC+T for a 1% benefit?
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They did not give me a choice really.... that was really the only thing they were offering. My percentage was like 4-5% with chemo as opposed to no chemo... I did not get the oncotype done because of the 1 node. My feeling was because of the node and it being invasive.... there could be a straggler out there somewhere.. Hit it with all ya got! I have not seen MD Anderson go with other chemos besides AC-T for most. I am sure they do, but it seems to be their "standard of care".
Being younger.... not as young as you
.... I would still do it.... in my situation.... AC was hard but not near as hard as I imagined. Taxol is better but here at the end it's exhausting! -
tshire,
One thing about statistics is that they only look at the relative and absolute benefit for the next 5-10 years. OncotypeDX gives you a benefit based on whether or not the cancer will return within the next 10 years as Stage IV. The benefit of chemo is actually known to extend much beyond that initial 10-year period (and gets more pronounced as the years go by), and since you are only 31, you would benefit from a strong chemo beyond that first period. The gap between a stronger and a lighter chemo also gets more pronounced as the years go by beyond the initial 5-10 year period. That is something to keep in mind. If you do the lifemath calculations online, it shows you that the benefit of chemo and the gap between a first or second generation or third generation chemo regimen actually increases as you go out into 15, 20, 25 etc. years. Also, the 4-5% benefit is a very generalized benefit. This cancer will either recur or will not recur for each individual. My mother with very similar stats to yours, except that her cancer was even smaller, did not do chemo, and it came back metastatic after 8 years. My completely personal opinion (perhaps due to my mom's cancer metastasizing) is that you only get one chance to hit this with all you have got at the early stage - which is what I tried to do at the age of 40. I had stage II (due to size of 2.3 cm, no node involvement but LVI). I did DD AC plus 12 weekly Taxol. Because I was also older than you, I also had my ovaries removed and went on Femara. But at 31, ovary removal may present additional risks. I also wanted radiation but could not convince my onc who basically said "NO" - that is overboard. Anyway, ACT is doable - not a walk in the park but doable, and not as bad as anyone imagines it to be, especially for those of us who are young and do not have any other health issues. MD Anderson is top - I would go with their recommendation.
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tshire, I did 4 TC's. Was hard at the end, but overall, very manageable. Onco-score was 21. I did not do Adriamycin for the same reason you noted...family history of heart disease. In the end, it is your decision. We all react differently to the treatments and we have to be comfortable with the decisions we make. Higher grades respond better to chemo than lower. Best wishes.
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tshire - I did do Adriamycin and there is heart disease in my family as well. I mentioned it to the cardiologist and they ran tests before chemo and during. I am fine. I did AC + T, but not dose dense. It was AC every 3 weeks and weekly taxol. It was very doable. I didn't have the oncotype since I had a positive node (also had LVI). I really did not want to do chemo, but now that it's over I am really glad I did. I have no lasting side effects (at least not yet - hope it stays that way). Good luck to you - it's tough to make these decisions, I know!
Hugs,
Nancy
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I am a VERY similar to Leighrh.
I'm 42 and Stage IIA. It had spread to my lymph nodes. We proceeded with dense dose A/C+T. I'm doing my chemo prior to surgery. I very much felt that I was going to hit this as hard as I could to knock the crap out of it.
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I guess I don't understand. Why would I do a treatment when the risks outweigh the benefits, statistically? The risk of leukemia is 1%, and cardiac toxicity depends on the dose but is usually cited as 2-5%. If I'm getting <1-1% benefit from doing that regimen, how is that beneficial? I don't want to die of BC but I don't want to die of late onset leukemia or have a heart attack at 45 like my grandfather did either! Even if my heart is healthy now, the damage is cumulative and long lasting. Especially since I'm also doing rads.
One thing I took from that meeting was that I was on the fence about doing chemo at all, and he convinced me to at least go with MO#1's recommendation. But he directly told me I am not a "high risk" patient! In fact both MO #1 and #2 told me they would not even consider recommending AC for me... and they both did their fellowship at MD Anderson! Confusing!
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I guess I don't fully understand all the %s being given for the benefits.
I did 4 rounds of dense dose A/C first. At the end of the A/C, they did an ultrasound. My tumor had shrunk by over 50% and my involved lymph nodes had significantly decreased in size. They also did another EKG and everything looked great. I was very happy with these initial results as I moved on to bi-weeky taxol.
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Yes, with positive nodes, later stage, bigger tumor, LVI, and/or grade 3 I'd probably want to hit hard too and take my chances with the side effects. In that case the benefits would certainly outweigh the risks. But clinically I'm about as low risk as they come and I will do some chemo and HT to get that risk down further. On the flip side of the coin, I also have much longer to reap the negative side effects. Apparently sometimes congestive heart failure after AC+T doesn't appear for 20-30 years after treatment! Leukemia can take 1-5 years.
YoungTurk, the lifemath tool showed that I have a 6.1% risk of death after 15 years with no adjuvant therapy at all. With Tamoxifen, it drops to 4.1%. With Tamoxifen and CMF, it drops to 2.9%. There is no option for TCx4 as far as I can tell, but I'm told it's in between CMF and AC+T in intensity and effectiveness. Dose dense AC+T drops that down to 1.9%. Like he said, probably a <1%-1% difference. I'm not sure how accurate this is in gauging risk since it does not factor in the genetics from Oncotype, but it does show how the risk would drop relatively well and aligns with what he told me. I'm strongly ER/PR+ and he told me I could expect a good response from the HT.
I'd be interested to find anyone with a very similar diagnosis to me and see what they decided....
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tshire my MO did the taxotere regimen for me. I did a blood test prior to chemo and it said both adriamycin and taxotere have the same percentage of effectiveness for me. The test was out of pocket since it is not one that is approved under current health insurance plans. My MO said the adriamycin protocol is an east coast regimen, and taxotere is a west coast regimen since I believe it was developed at UCLA. Taxotere and adriamycin are both what MOs refer to as "the big guns." I did four consultations, and the chemo recommendations were all over the place! I went with taxotere after consulting with my primary care physician who has an older patient population and he sees the women with long term issues. So maybe a thought would be to consult with a doctor who deals with long term side effects post chemo?
I am older than you at 53 and am post menopausal, so I'm not sure how much that factors into the equation. I have noticed a lot of younger, premenopausal women getting adriamycin, though. Not sure if I helped or added to the confusion, but best of luck whatever you decide. You should also have tamoxifen or an AI available to you since you have a positive estrogen receptor, which I do not.
One other thing, ask if the numbers you are being given are an overall reduction, or a percentage of your risk. For example, let's say, as in my case, surgery only results in a 75% effectiveness of no return of breast cancer. Is the percentage you are being quoted 4-5% of the remaining risk, I.e., 4-5% of the remaining 15%, or 4-5% overall, which brings your risk from say, 75% to 80%? Big difference! It is hard to make sense of the percentages, which are sometimes given as an absolute risk vs. a relative risk. I believe those are the correct terms.
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AC and TC are both powerful chemo regimens; they each have their pros and cons. Yes, AC can cause heart damage, but TC is associated with gastrointestinal issues in some patients. My MO likes AC because her patients are more likely to complete that regimen than TC. (Many ladies survive TC just fine, though.) Before starting AC, patients typically get a heart scan which provides a baseline for future scans. Heck, I'm still doing my year of Herceptin (which also can cause heart problems); I've had four heart scans at this point. My heart looks the same as it did before AC and Herceptin, so I guess I'm lucky in that respect.
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Italy - it is important to distinguish between TCH, AC-TH, and TC - the TCH regimen was trialed at UCLA, most likely influenced by Dr. Dennis Slamon, the doc who brought Herceptin to the market with Genentech. It is the regimen he favors if Herceptin is needed because of the wish to avoid combining anthracyclines with Herceptin since they can both be cardiotoxic, but I believe that Taxotere and Cytoxan - which is the regimen the OP is referring to - was developed and in use prior to the TCH regimen trial at UCLA. I think now that some time has passed since the approval of TCH in 2008 there is less of an east coast/west coast thing with prescribing it - I am in Florida and had TCH, my MO is an east coast trained doc and does not prescribe AC-TH for his Her2+ patients. He is part of the largest private oncology practice in the country, but I am not sure if this is his bias, or a practice-wide protocol.
tshire - here is a head to head study looking at TC versus AC, although this is AC minus Taxol. 4 TC would be a shorter regimen than AC-T:
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Hi tshire,
I totally understand that this is a very hard decision in your case. Some of these studies were done in much older patients who constitute a very different patient population than the younger patient population. As a matter of fact, there is even a lot of discussion surrounding the results of Oncotype and their applicability to a younger premenopausal patient set, since the Oncotype study included only postmenopausal women (not sure about Mammaprint). There are some key differences between older and younger women, including the fact that we are estrogen factories and we need to have our treatment apply to a longer time horizon than the older women. I wish you the best on your decision-making, and completely understand how hard this is.
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Thanks for the study link SpecialK! Good information!
YoungTurk, MO#1 did mention that Oncotype didn't use many young women in its study population and therefore I should be wary of its reports (she did say there were SOME, just not as many). She is the one who recommended TC. I understand that I will need to do something about the estrogen- I plan to be on hormonal therapy for 10 years, either 10 years of Tamoxifen or 5 Tamoxifen/5 OS + AI. It's probably too early to consider ovary removal. I froze embryos earlier this week and I'd like to get pregnant in 5 years after treatment, hopefully.
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SpecialK, it's interesting, I just realized that the author is from Texas Oncology- as is MO#1 who recommended TC!
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SpecialK, totally understand the different chemos, and great explanation and link! I love the link you sent. The difference related to Her2 is the main reason I only addressed taxotere vs. adriamycin.
The one outlier in the chemo regimens has been Katy, who was part of our March 2015 chemo group. Her MO actually had her do six rounds of TC, which I very rarely hear of.
I did get gastrointestinal issues and neuropathy after round 5 of taxotere, but the gastrointestinal part has completely resolved. It actually disappeared in about two weeks. I still have some slight lower leg tingling from the neuropathy, but it is pretty minimal and in no way impacts my day to day activities.
Best of luck tshire. You can do this and one day it will be over and just a memory!
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Italy - glad you found the link useful. Just wanted to say that I had neuropathy that resolved after each infusion until #3, then it stayed. At about 90 days PFC, give or take, it started to resolve and it did go completely away. I do have more sensitivity in my feet now, can't wear high heels for hours anymore, and I wear running shoes with memory foam - but it's all good. I hope you start to see resolution soon too - it can be a bit of aslow process.
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SpecialK, you are such a great information source, you have helped me through this process so much!
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Italy - happy to help! When I was going through treatment there were people here who helped me, just trying to do the same, but it warms my heart for you to say that
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Hi Tshire -
I just responded on your mammaprint post but I thought I would chime in here too. The first MO I saw recommended TC for me but then at my tumor board meeting all the other MOs disagreed and said I should have ACT. I was heartbroken and felt like it was overkill at the time. I went for a second opinion and he said both protocols were good but I had to go with what I could sleep with at night. I realized for me I didn't want to risk the cancer coming back somewhere in 5 years and killing me just because I didn't want to do more chemo now.
My mammaprint score is higher than your though and my tumor was bigger. They thought I had no lymph node involvement at the time but after a sentinel node biopsy they found 2 mm in one lymph node.
I am now almost done with chemo. I have just two more Taxols and for me it has not been nearly as bad as I was worried about. Mostly I am just tired and sometimes achy. I think when you are younger the chemo may not effect you as much. I am 45 so older than you though. You need to make the right decision for you but I just wanted to let you now my experience and that the chemo really hasn't been that bad. Maybe it was overkill but I can sleep at night with the choice I made.
Good luck! I remember so well all that stress. Just make the right choice for you.
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melb44,
You just gave tshire the best advice. I agree with you wholeheartedly.
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It's not just because I don't feel like doing more chemo or I'm being a wuss. I have serious concerns about the additional toxicity and long-term effects of this regimen, especially to my heart.
From the study SpecialK posted:
"At a median of 7 years follow-up, the difference in DFS between TC and AC was significant (81% TC v 75% AC; P = .033; hazard ratio [HR], 0.74; 95% CI 0.56 to 0.98) as was OS (87% TC v 82% AC; P = .032; HR, 0.69; 95% CI, 0.50 to 0.97). TC was superior in older patients as well as younger patients."
"There were three late deaths without relapse, probably related to treatment, and all occurred in the AC group: a 45-year-old woman died of cardiomyopathy and congestive heart failure, and two older women died of complications related to myelodysplasia and myelofibrosis, respectively. One more patient died of acute leukemia 10 years after AC."
Another discussion of this is here: http://www.breastcancerdeadline2020.org/breast-can...
So far, everyone who has responded has had a higher grade, or node involvement, or later stage, or a bigger tumor than I had. Like I said, if I had any of these high-risk characteristics, I would probably agree that the benefits outweighed the risks. But I don't and I don't believe they're worth the major potential health risks for the max 1% advantage I was quoted.
This is one decision I'm not agonizing over.
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gretmph2 - I have finished dense dose A/C and today I've had my 2nd dense dose of Taxol. Thus far I've had very little side effects. I'd be happy to answer any questions. Everyone is different but I've been really happy with my treatment thus far
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In my experience, they have many options if you experience issues such as nausea etc.
They give pre-meds before hand to combat nausea and then I was also sent home with 2 anti-nausea drugs. I was instructed to take one and if it didn't help within a half hour to take the other. If that didn't help, I should call in and they will get me something else.
I started losing my hair on day 15 or the day after my 2nd A/C treatment.
My 1st treatment was 6/15. I noticed the hair loss on the 30th. On the 2nd, my neighbor cut my hair short and then on the 5th I shaved it. It was coming out way to heavy to try to keep the short haircut.
I really had little to no issues with A/C. I think I took one or two anti-nausea pills the entire time and those were just because my stomach felt slightly off.
I did have an issue with infections.
8 days after my 2nd A/C treatment I noticed the upper incision from my port felt warm and tender. I had a superficial infection and was on antibiotics for 10 days.
7 days after my 3rd A/C treatment I was feeling kinda yucky...rundown, etc. I woke up in the middle of the night with a fever and ended up heading to the E/R. I had a bacterial infection in my blood. They had to remove my port and I was in the hospital Tuesday through Sunday. I was also on 24 hour antibiotics for 4 weeks which was a pain but nothing I couldn't tolerate. Looking back, my port did feel tender at that 3rd treatment and I should have mentioned it. I bet it was the initial signs of infection.
I'm now getting my treatments via I/V.
I've noticed a few more side effects with Taxol but nothing awful. With my 1st treatment, I felt like I was getting the flu on the 3rd day...achy and tired. I felt fine on day 4 but did have muscle soreness and some restless leg syndrome through day 6. It was nothing intolerable.
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Grey, if you're worried about AC have you considered trying TC instead? Or even CMF? It would be better than nothing, and the regimen would be shorter on TC or the side effects "softer" on the CMF. You don't lose your hair on CMF. And if you cold cap most women have good success keeping their hair on TC. You should probably do some type of chemo since you are Luminal B, grade 2, stage 2, and node positive.
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Did you get the Mammaprint test that told you Luminal A? If not you are most likely Luminal B, because Luminal A almost always has high PR+. Being PR- or weak PR is a bad prognostic factor and usually indicates Luminal B.
Remember that you are the one in the drivers seat. Iits your body and life. If you feel that strongly about not doing AC and your MO won't listen find another one who will.
Thanks for the hair compliment! I will be cold capping so I can keep my hair hopefully for my wedding in March
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Hmm interesting. None of my path reports had that, I had to get Mammaprint done to tell me that because I was strong PR+.What was your Ki67?
Well my understanding is that anything ER+ is better than ER- because there are treatments and it's generally not as aggressive. Luminal B has the second best prognosis after Luminal A, to put it another way.
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I went through A C treatment 4 rounds and 12 rounds taxol for stage one triple negative Breast cancer....I am 11 months out doing very well. I had previous heart issues even before my Cancer diagnosis I was diagnosed at 57 years old. Does not run in my family in fact my identical twin sister is fine no sign of Cancer she gets checked regularly . I am glad I went with their recommendation......I feel like I have my life back now. Good luck I am sure that what ever decision you make will be the right one for you.
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Tshire , My situation is a little different from yours. For one thing I am 63 not 31 but you can see from my info about my tumor I am a triple negative. Originally I was given the regimen of the dose dense AC followed by twelve weeks of taxol. Later after my MO got all of the specifics of my path report she recommended the shorter regimen of twelve weeks of taxotere and Cytoxan. The tumor board agreed unanimously that this was the best regimen for me. My husband did some research and I have done some research also and decided yes I would go with the twelve weeks (four treatments every three weeks) of TC as opposed to the regimen of Adriamycin Cytoxan followed by Taxol. I have never regretted my choice and I just had my third treatment of TC. The side effects have been minimal , no neuropathy so far and my blood counts have come back so that I have not needed the neulasta shot after my treatments. Like you I was worried about the extra concern of leukemia or MDS down the road after the AC regimen . I am also passing on the recommended course of radiation after my chemo ends because of the additional concerns of leukemia and MDS down the road. My mother in law was treated with just a course of radiation no chemo after her breast cancer twenty years ago and died of MDS five years ago. Maybe this was just a coincidence in my mother in law's case but my daughter who is a nurse and works in a bone marrow stem cell transplant unit tells me that they see a number of patients with leukemia that had previously been treated for breast cancer so she fully understands why I want to pass on the radiation and additional chemo that I don't need. Also I had an echocardiogram done and my heart is in good shape with no family history of heart problems. I saw no need to run the risk of heart damage if I could avoid that. I will add, though , that because I am forgoing radiation I will need to have a mastectomy instead and I will choose a bilateral mastectomy for my own peace of mind. As I mentioned I am 63 not 31 so that is a big difference in our situations. I think now that more MO's. are going with the TC regimen in early stage breast cancers with no lymph node involvement. Ultimately you have to go with what your gut tells you is the best and right course for you and make peace with your decision and never second guess it. In the end you will come out on top of this cancer bummer regardless ! I hope my advice has been helpful and supportive. I wish you the best of luck in this journey. You are not alone and it gets easier once you start your treatment.
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