making a decision on whether to get chemo or not
I found a lump on July 4 of this year. After all the tests and mamos it was removed on Aug 13. My diagnosis is IDC on my left side. No evidence on right. I have had the gene expression profile panel. My onc is recommending radiation. Four sessions 3 weeks apart. My estrogen receptor is 31.1 positive. My stage is high side of 1. I am so confused with all this new knowledge. Is chemo worth the risk?
Comments
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Femail, was there any cancer in your nodes? I assume not if your stage is 1.
Radiation is generally every day for 6 weeks. Chemo is given every 3 weeks. ( Dose dense is every 2 weeks, I had that, stage 3 ).
Maybe he is recommending a new radiation regimen that I am not aware of. Very possible, there are lots of treatment options.
Did he talk about taking a drug for 5 years, either Tamoxifien or Arimidex ? The oncologists can tell you the benefit of chemo, what % of protection you might receive. Usually with stage 1 it is a small %. The more advanced the cancer the higher the benefit.
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Get as much info on your cancer as you can. Radiation I think is always needed for lumpectomy.Get the fish and HER2+ info and ask about all your treatment options. ER (30%) is kind of low but maybe hormone therapy might help.
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sorry I misspoke my onc is recommending chemo (got my procedures mixed up) Then I am getting 6 weeks of radiation. Chemo is with taxotere and cytoxan. I need to decide if I want chemo in the next few days. No cancer in my nodes. My recurrence score is 48. ER score is 6.0 neg. PR score is
.2 neg. HERS 2 score is <7.6 neg. I just picked these test results up from my onc to help me make a choice. I still have a lot of reading to do before this all makes sense. I just need some opinions from people who have already made the choice and how it has worked for them. Thanks for all your advice in advance.
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bump!
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I have not been through chemo. I am still awaiting test results. However, I know that if it were me, I would do the chemo. I's sorry that you are having to go through this. But, be tough!
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femail1956, I just found out yesterday the I will have the same chemo regimen as what your doc is recommending for you. There are a lot of factors to consider. My Oncotype score is 23, which is intermediate, but they found cancer in one of my lymph nodes. Chemo is generally recommended in that case. There is some information on this site called Understanding the Risk of Recurrence which is very helpful to help you understand what chemo will gain you. I am doing it primarily because if I don't, and I have a recurrence, I will not be able to avoid blaming myself for not doing everything I could to prevent it.
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I would not have chemo in your circumstances. There are lots of other things you can do to give yourself the same % benefit that chemo would. Cancer spreads via stem cells and no chemo kills cancer stem cells so if your tumour or cancer cell load is not very high chemo could do more harm than good. I was stage 3 on diagnosis and refused chemo, I do not regret it as it was the right decision for me, you need to get to a point of knowing what is the right decision for YOU, not the statistics...........
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Your oncotype report shows not only your numeric score, but your recurrence risk both with and without chemo. Please ask your onc to go over those figures with you. As for the recurrence score you mentioned, I believe a score of 48 is on the high side, and, despite your excellent pathology, it would be standard to recommend four (which is a shortened regimen) rounds of chemo. Please do talk with your onc, over and over, if you need to) until you understand your risks, both with and without chemo. A second opinion is also a very, very good idea.
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femail1956,
I had an Oncotype score of 48 just like you. This is a VERY HIGH score. This means that this cancer has a 32% chance of coming back in a distant site (or metastasize) within the next 10 years. (I was also node negative like you but I had two tumors - one 2.3 cm and the other 1.6 cm). I am ER+ and PR+ for both tumors, and this gives me more options of treatment. It looks like, your Oncotype report indicated that you are ER- and PR-, and therefore, you may not have anti-estrogen choices, although if you were 33% ER+ in your pathology report, the doctor is very likely to try the anti-estrogen treatment. With our score, chemo does wonders. If you have chemo, your recurrence risk goes down from 32% to 15% - a more than 50% relative reduction, and a 17% absolute reduction. This is huge in the cancer world. I would take your doctor's recommendation on this.
Edited to add that the score ASSUMES that you will be on an anti-estrogen such as tamoxifen or an aromatase inhibitor for five years. The score (and the recurrence risk) would be higher if you do not take the anti-estrogens.
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Count me as one who was grateful that skipping chemo was not even an option. Not too long ago I lost a friend to metastasized breast cancer, she had a lumpectomy and radiation (indicated treatment for her particular diagnosis) - 1 year later she wasn't feeling great and her PET scan showed cancer everywhere; she was dead 3 weeks later. She was 49. It scared the shit out of me and I was relieved to get the big guns thrown at me. Don't get me wrong, I would not wish a worse situation on myself or anyone else - in fact I wish my cancer had been found in an earlier stage, not in my nodes - but I am glad I was over the threshold & have every single treatment option available to me. For me, hair grows back, sickness leaves, fatigue passes, inconvenience of daily radiation ends - again, that's just me, it's a very personal decision.
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When I was initially dx everything pointed to Stage I BC in my r breast. I was so grateful and relieved but opted for BMX with reconstruction. That may have seemed like using an elephant gun to kill a beetle, but my intuition told me this was the right treatment. After 9 hours of surgery a much clearer picture emerged, my Sentinel node and 3 out of 4 other nods were positive for BC. This meant chemo regardless of an Oncotype score of 9. I was devastated to find out BC had spread to several bones. The thought of having to undergo chemo was practically worse than the thought of cancer. I was supposed to have 6 rounds of TC every 3 weeks but did 5 rounds which wasn't nearly as difficult or taxing as I imagined. I would have lost all my hair had I not used Penguin Cold Caps. It took 4 rounds of TC to get me to NED but I "volunteered" for the 5th round, sort of icing on the cake. Anyway, I think everyone fears chemo and the side effects associated with it. My experience was much more manageable than I expected and although I didn't really have a choice, I can't imagine not using everything possible to kill the cancer. Looking back and trying to analyze the highs and lows, chemo wasn't the worse part of my entire experience. It's a little like labor, the contractions hurt like hell, but in the end there's an amazing gift waiting for you, your baby. Chemo, to me is like labor..and the gift, NED which I couldn't have gotten to, without chemo. Good luck with your decision and I hope if you do choose TC it's as easy for you as it was for me.
Amy
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Equally there are people who have had chemo and get metastises within a year or two so anecdotes are really not helpful, it has to be the right decision for each individual. For me the risk of serious life changing side effects was much higher than normal, and I was highly hormone positive. I am 2.5 years on and still (hopefully) fine, just coming up to next six month check
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Have you had the BRAC analysis done? you mentioned a gene expression panel. You can always get another opinion. For me, SE's of chemo were not real bad. No regrets. I wanted to fight it with all I had while I could. Chemo can be hard for some people, but it's usually not as bad as we envision. It's not something I would want to do again, but it was manageable. There is a website called cancermath, I think, that may give you an idea of benefits of treatment options. Not sure how accurate it is. Good luck with your decisions and treatments! Ultimately, it is up to you. Follow your gut!
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When I was first diagnosed with cancer, I had a lumpectomy and rads and no chemo. That cancer has not [yet] come back. But 13 years later, I have another primary, triple negative, IBC, in my bones. This time, of course, I did chemo because I wanted to live. In fact, I've done chemo twice over the last three years. It's doable, if you want it to be doable, at least for most people.
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Femail,
How are you feeling? Having NO cancer in the nodes is comforting. Mine were full of it.
My chemo regimen was very aggressive, no choice. I think there are so many factors to consider, age, general health. I have friends who were in your situation. One had chemo, the other chose radiation only. They both did 5 years of Tamoxifen. Both are doing great. Getting 4 chemo infusions would be 3 months. That combo is easier than other chemo drugs. ( For most ladies ) Also getting it every 21 days as opposed to every 14 gives your body time to heal.
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femail1956 - I wonder if chemo protocols have changed in last couple of years. I heard some rumblings about Adriamycin being less Rx'd. Is that true anyone? Anyway, I had an Oncoscore of 39 and got ACT dose dense (Adriamycin, Cytoxan and Taxol). I also got 6 weeks of Carboplatin because I'm brca2+. Your score is even higher (we are both ER+PR-) than mine.
P.S. I have permanent neuropathy in my feet from Taxol, so it is a crap shoot tradeoff. I was treated at an NCI teaching hospital and the head MO believes at "throwing the kitchen sink" at early Stage I aggressive cancer.
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"Cancer spreads via stem cells and no chemo kills cancer stem cells". This is taken from a post a bit earlier on. If this is true, why does chemo exist at all? Or perhaps I don't understand what you were trying to explain? Can you explain this a little differently please?
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Very good point flannelette! I too am anxious to hear how Lily defends this statement.
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I think the people advising femail to not do chemo, or talking about people they know who have done great without doing chemo need to be cautious. Please note that femail's Genomic expression report finds that she is NEGATIVE for ER and PR, and her original pathology report found that her Estrogen receptor percentage was very low, only 31%. She is also HER-2 Negative. It's not clear if an oncologist would even try using a hormonal therapy in Femail's case, and if he did, I doubt anyone on this board is qualified to guess what likelihood it would have to be a successful therapy all by itself.
Femail, Ask your Oncologist to explain to you the meaning of your test results and your risk and how chemo would affect that risk. Did your Oncologist tell you that there are therapies you could do that could significantly reduce your risk if you don't do chemo?
(By the way, WAS your gene expression profile panel an Oncotype test, or was it perhaps a Mammaprint test, that has relevance for both hormone receptor negative cancers as well as positive ones?? 48 would be a high risk Oncotype score-- Not sure what it would mean if the test was a Mammaprint test.
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There was a very interesting program on TV (it was a reputable source but I can't remember if it was Discovery Channel, 60 minutes or 20/20) about cancer stem cell theory. But it is still just a theory, they assume that chemo kills cancer cells but cancer stem cells are immune to it and go dormant, only to resurface later. I still went with chemo but everyone's circumstances are different. Our tools to fight this beast are so imperfect and old and I am not even going to get into it.
Some women have been recommended hormonal therapy even while only 5% ER+. But yet there is another theory about being ER+ but PR-. Some argue that ER+ PR- is it's own subtype, with a similar prognosis as triple negative. And that the lack of PR receptors affects the way ER receptor work, in essence that they are there but that they are nonfunctional. But again just a theory with small studies showing that survival is worse with ER+ PR-. Cancer is just too complex..
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chemo kills normal cancer cells, and there are millions of those once a tumour or mass emerges, and that is why chemo can help, but no chemo destroys cancer stem cells, only our immune systems can do that. i don't need to "defend" it as its simply a fact, google cancer stem cells and chemo, it is very well documented.
I emphasize it is a unique decision for each unique person, amd my only recommendation is to do what is truly right for you.
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Thank you all who replied. You all have valid points. I just have to decide what I can live with. Will keep you posted on my decision and recovery. This site has been helpful.
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JAcobson
Jacobs146: Good luck on your upcoming treatment. I hope we both do well. I hope you find the bright side to this journey we are on.
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it was from an obvious test. So I have decided to have chemo. I start tomorrow. Wish me luck. I think it will be fine. Thanks to all the advancement in the treatments and the brave people who have gone before me.
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it was from an oncotype test. So I have decided to have chemo. I start tomorrow. Wish me luck. I think it will be fine. Thanks to all the advancement in the treatments and the brave people who have gone before me.
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Good luck. I hope your treatment is uncomplicated and you make a speedy recovery.
Amy
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femail,
I just wanted to let you know that, although not a walk in the park, I did find chemo to be a lot easier than anticipated. I even went out to dinner with friends after my initial (dose dense AC) chemo infusion. I hope you will also find it a lot easier than anticipated. The best of luck and hugs.
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just want to add on the information here. I think the picture below summing it up nicely that cancer spreads through both regular cancer cells and stem cells. On Wikipedia, it claims that cancer could propagate with the cancer stem cell (CSC) model and clonal evolution model. And the "two models are not mutually exclusive." These theories help me understand why a person sometimes may have MXs and chemo but still encounter metastasis years down the road (with secondaries that are totally different, in terms of ER/PR/Her2 status). Also I think it's worthwhile to note that CSC is a newer and evolving field. Please note that the blue sphere means eventually leading to Circulating Tumor Cells (CTC).
I deleted the copy-and-pasted Figure 1 for fear of violating the journal's copy rights even with proper citations.
Here is the link to bigger pictures.
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