I am 46 years old and have been diagnosed with Paget's Disease of the breast. My cancer was stage 1 IDC. I am ER+, PR+, HER2+ and grade 3. I had a lumpectomy and sentinal node surgery. Lymph nodes are negative and margins were good. The preliminary anticpated treatment was radiation with 5 years of tamoxafin. After surgery, however, when the HER2+ and grade 3 report came back, I've beenn bumped up to TCH, radiation and 5 years of tamoxafin. I am just contemplating the need for TCH, as I've heard that lasting side effects and tissue damage are possible. My doctor tells me my chances of reaccurance will drop from 40-50% down to 10%. Will my body pay a higher price (health wise) for the chemo than for the chances of reaccurance?
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Q: Weighing the long term side effects of TCH against the possibility of reaccurance of IDC
Answers (2)
8/24/10 12:15pm
Janet, unfortunately none of us can know ahead of time how chemo will affect us. Some women sail through with few side effects, and no lasting effects; some feel its effects for the rest of their life. A drop of 40% to 50%, down to 10%, is huge. Personally, I'd rather chance the chemo side effects than have a potential 50% risk of recurrence. Because that recurrence, if outside the breast, pretty much means you're going to die of breast cancer at some point.
Have you found out what the risk of recurrence would be with mastectomy? Perhaps that would bring it down to a level where you'd find it acceptable to risk recurrence rather than the TCH side effects. Good luck - PJH
8/24/10 6:09pm
Her2+ tumors tend to be more aggressive, so your doctor's suggestion for chemo and Herceptin sounds very reasonable. One of the most serious side effects you might have from Herceptin is heart damage. However, your doctors will monitor your heart carefully, and any damage that Herceptin might cause is usually reversible. There are some other possible side effects, but they are not generally life threatening. A recurrence of cancer, especially if it shows up in another organ is life-threatening. Surgery and radiation take care of cancer in the breast and nearby areas. Systemic treatments like Tamoxifen, chemo and Herceptin are designed to stop any stray cancer cells from growing in a vital organ. As PJ says reducing recurrence risk from 40% to 10% is quite dramatic. Ask your doctor more questions about side effect risks from the treatments and about how often he actually sees these problems. Many of the side effects listed for a drug happen only occasionally.
8/26/10 8:13am
Phyllis, is it possible for "stray cancer cells" to show up on a vital organ with negative lymph nodes? How does that work? I have some low risk variables: stage 1, er+ and pr+, but I also have some high risk variables: HER2+ and grade 3. A friend put it this way, when trying to help me decide, "So you have a bad cancer caught early." Really, the only one giving me this choice is me, to choose not to do chemo would be going against medical advice. The problem is, I have a friend who did, and she seems fine. Cancer has not recurred in 6 years. I don't feel that I have enough knowledge in this to go against medical advice, but I do fear what life will be like on the other side of chemo.
8/26/10 10:02pm
A negative lymph node report is one good indication that the cancer probably has not already spread. But the surgeon probably did not remove every single lymph node under your arm, and your breast also drains to lymph nodes under your sternum and collarbone that were not sampled. So no one can promise that all the cancer is gone.
To help you visualize how big a risk you want to take, change percentages to people. For example, if you have a 20% chance of recurrence, that's one in five. If you were sitting in room with four other women, and the doctor said, "Without chemo four of you will be fine and one of you will recur," would you want to take that chance? Some women would find that an unacceptable risk; others would say, "I'll probably be one of the four who is OK--no chemo for me." I'm guessing the recurrence rate for your tumor is probably higher than 20%, but the "picture-people-in-a-room" principle applies for whatever the number is. Your doctor can give you the stats for your specific situation.
Your friend has been lucky enough to be in the recurrence-free group so far. Six years without a recurrence suggests that she will probably stay well; most recurrences happen in that span of time, but not all.
What matters in the end is what feels right for you. As a person who is 12 years out and living a high quality of life despite some lingering side effects, I'm very glad I went for the most aggressive treatments my doctor recommended. But I'm not you. You have to lay out the risks and benefits and then decide without a crystal ball to guide you. The decisions I made about treatment were the most agonizing of my life. In retrospect they were right, but at the time, there was no way to know.
9/ 9/10 7:25pm
Thank you, Phyllis, for being so candid with me. I did agonize over my decision, but in the end, I chose the chemotherapy. I will say it is not easy. My first treatment will be one week ago tomorrow. I tried to go back to work, (teaching) but was not able to. Now it looks as though I have to lay that part of my life down, since my body's reaction will not allow me to. I know God is holding me up, and I trust that when this is over, I will have no regrets and get to my "12 years out," too. Thanks again.
9/10/10 6:24pm
Janet, hang in there. If you are on a three-week chemo cycle, the middle week is the worst. You'll start feeling better just in time for the next treatment. I had two different types of chemo. I was on summer vacation from my teaching job when I started chemo, which worked out well because the first set of drugs I had left me extremely fatigued. I did teach during the last part of chemo and during radiation. I was fortunate to have a family who cooked and took care of me when I got home from work and collapsed! So although you may not be able to teach right now, if you want to go back, keep it as a possibility for when you finish your treatment.
I'm glad that I was able to give you some information that helped you decide. These decisions are so difficult, so whatever happens, don't second guess yourself.
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By Janet— Last Modified: 12/26/10, First Published: 08/24/10
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PJ, I read on another post that you had chemo and if there was recurrence you would definitely not choose chemo again, if the nodes were negative. MY nodes are negative, so CAN I have stray cancer cells anywhere else? I'm just trying to understand how this all works. My surgeon told me yesterday that he would without a doubt choose the same treatment for his own wife that he is presenting to me. I was given the choice between mastectomy and lumpectomy saying I would have the same survival rate. I was NOT given a choice about the chemo once I was declared HER2+. I have four children ages 7 - 14. I want to choose what's right for their sake.