Would you mind sharing your age at time of diagnosis?
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47- no family history, premenopausal
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47, no family history, premenopausal. Now post menopausal after 11 months on tamoxifen. I had to find new oncologist, mine quit, and new guy told me I should've had chemo. First onc said no, did oncotype and got a 14. New onc said he wouldn't have ordered the oncotype since I was premenopausal, but added the score was good. Any thoughts on that? Really messes with your mind when you're told 11 months later that you made the wrong choice. Kim
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just turned 48 when diagnosed, pre-menopausal, no family history. Kim, I am being treated at a hospital with a Breast Center. All the docs look at all the patients every week so its like getting 2nd, 3rd, 4th opinions at the same time. If you have such a place nearby, I highly recommend it. My hosp ordered oncotype with the biopsy, I assume that they do he same for everyone. I am oncotype 23, intermediate. My doc said that I would not have had to do chemo except for they found Cancer in one of my nodes. That combined with the oncotype indicated chemo. I don't know what they would have done if my score was low like yours. Most important thing is to have confidence in your doctors, which is sounds like you lack. Perhaps you should look for another hospital
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Hi Kim,
I definitely feel where you are coming from. I've worried about about not having a mastectomy and delaying my chemo.
But I wanted to add my thoughts about your situation. I was 41 when I got an oncotype score of 13. Like your new onc, my oncologist didn't want to base her recommendation on the oncotype score at all. From memory, she talked about two issues. First, she believed that the study groups used to verify the oncotype dx test contained mostly postmenopausal women, although there was a proportion ?like 20% of premenopausal women, with more 'older' premenopausal women in most of the studies. So therefore she could not know whether the studies' conclusions that oncotype dx score predicts recurrence (not all the studies came to that conclusion) really applied to premenopausal women. The studies never actually analysed premenopausal as a group. That's maybe what your onc is talking about.
The second issue my onc had was she believed that the (averaged out) absolute benefits of chemo are much higher for premenopausal women than the often quoted 2-3%, which I believe some studies found for post menopausal women. She thought the (averaged out) absolute benefit of chemo for premenopausal women at 10 years was more like 7-11%. Keeping in mind that those averages are specifically for premenopausal women which would include very young women 20-35 yrs, 'mid' and 'older' premenopausal women.
In recommending chemo to me, my onc also factored in that, without chemo, I still had roughly 10 more years of being premenopausal. Also, I had about 5 - 6 cm of high grade DCIS with numerous small tumors throughout, so multifocal, which may have higher recurrence rate. Also, at least one study has shown greater recurrence rate for women with bc less than 5 years from last childbirth or while breastfeeding. My cancer was also grade 2. In the end, I did chemo with an oncotype of 13 and largest tumor less than 1 cm, and age was a factor but not the whole story.
As you know, in deciding whether to have chemo we think about the possibility of suffering short and long term side effects. Even other cancers, heart or bone damage. A lot of women in your situation would not have done chemo. In your favour are grade 1 single tumour, low oncotype and 47 years (certainly not old by any account, but at least closer the natural drop in estrogen).
Sorry to hear your new onc has inadvertently managed to drop a bomb on you. Not thinking, obviously. Does he even know whether he would have definitely recommended chemo for you? Probably not. Maybe he's just blurting out relevant factors in your situation and one of them is that your oncotype score is good.
Probably more important as far as treatment goes are the anti-hormonals. I'll take them for 10 years if I can tolerate it. Stupid breast cancer.
Just wondering, are you sure you're post menopausal? I mean, did you have blood work done? Because technically, post menopausal means at least 12 months since your last period. Could it just be that the tamoxifen is stopping your periods? I have no idea whether this is true or not but someone told me that about 25% of women taking tamoxifen experience irregular or absent periods.
Kim (also)
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Jacobs and Oneday, thanks so much for your responses and information. My first onc, (she), was at a very reputable breast cancer institute in St. Louis, around my age, and trained under a doc who has now moved to MD Anderson to further his studies, trials, with a 2 million dollar grant. Second onc, (he), is a bit older. He is here in my small town, though both are with the same hospital system. First onc said she didn't think I'd need chemo even before she ordered the oncotype. Long story, but I had the lump for 30 years. Obviously wasn't cancer the whole time, different docs always said it was a cyst. I never got a mammo, though, my bad. Though last doc wanted me to get one just due to my age, no concerns about the lump. Move forward five more years....I'm about to turn 48, developed heartburn, so thought I should get a doc here in town and get a checkup, cholesterol, mammo, etc. She immediately freaked about the lump, which was quite large in my small breast, but I didn't freak, I had it so long, always changed sizes depending on the time of the month. Well, after mammo, biopsy, it was cancer, 2.9 cm. I had mastectomy, it had spread a tiny amount (first onc's words), into one node, other 11 were clean. Oncotype is good for up to three nodes positive. First onc and radiation onc both felt I didn't need chemo, there was a 50/50 split on radiation among 4 radiation docs, since I had small amount in one node. I went with the no docs since I had the mastectomy. Radiation doc said I had an "old lady" cancer, very slow growing for my age. My Ki 67 was a 3 out of 100, which means slow proliferation rate. First onc said chemo goes for fast growing cells, mine were slow growing, therefore more risk than reward in her opinion. She ordered oncotype to be sure, which came back a 14, which said I had a 9% chance of recurrence and would get a 1% benefit from chemo. She said I could lower that 9% by exercising regularly and eating right. I'm a workout machine now and eat much better. I was always small, 5'0, 100 lbs, but now have much more muscle and I don't eat fast food 5-10 days a week anymore, (blessed with high metabolism). I've only had fast foot 3 times in the last 11 months! All docs think I had the cancer for quite a while. Both oncs said I will be on Tamoxifen for 10 years. I'm hoping to stay on that instead of moving to an AI, as I've had no side effects except for missing periods. Yay! I think I was beginning menopause last year, as I had skipped a couple periods, and once I started the Tamo, have not had the hint of one since. I had blood work done two weeks ago, which indicated I was post menopausal. I was shocked, as I've had not a single hot flash. I'm always cold, so I kind of welcomed a hot flash, but none yet. After writing all this, I feel a little better, ha, but still a little uneasy. I was totally at ease with my original decision, moved on with life, but since last week, every ache or pain I have, I immediately think it could be cancer running through me. Of course after I left new onc's office, I thought of a lot more things to question him with. I go back in February, where he's going to do another cancer antigen blood test. Oh, he also was impressed with my scans I had after the mastectomy, CT with contrast, bone scan. He said they were so clean. He said they usually find something, not necessarily cancer, but mine were totally clean, which he agreed was very good. He did say that if I was his patient originally, I would've had chemo. (I say it was still my choice, though)
Thanks so much for listening/reading, ladies, and responding. It truly helped me to vent to others who have been through this. Time to just move on and hope for the best in February! Kim
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Had just turned 40
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40
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55
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42
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35, married less than a year.
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Diagnosed 15 days after my 23rd birthday.
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Age 42 when breast cancer first appeared; age 45 when local chest wall recurrence happened 9/2014.
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37
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61
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50 and just a few months from my 51st birthday.
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50
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78
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should have added had regular mammos until 70 when they stop in our health care system (not very sensible as bc likelihood increases with age) picked up on CT done for totally different reason so big shock no family history.
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36 at first DX, 43 at recurrence
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45
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Less than a month after my 43rd birthday.
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41. I was doing my required wellness activities to obtain my employee benefit health insurance. I was the fittest I have ever been and needless to say, also the most surprised.
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44
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56
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590
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I as diagnosed at age 44 with my first ever mammo. I had it done after my niece age 33 was diagnosed two months before me, my 1st cousin age 45 two months before her and then I bugged my sisters and one was diagnosed age 60 two months after me, all in 2013. BRACA negative.0 -
I was 43 and turned 44 a month later. My mammogram didn't show anything in January, but I found it in October after some breast pain. Drs had reassured me that it was probably a fibroid, unfortunately the biopsy indicated otherwise. I am currently undergoing radiation therapy-2 weeks to go!
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33 - a few days after my first wedding anniversary
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43
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Dx a month after my 31st B-Day
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