Should I expect chemo?
Comments
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I am waiting to meet the oncologist for the first time. I was dx with IDC, stage 1,grade 1,no nodes, ER+PR+ Her2-. I had a mastectomy and I am hoping to hear from anyone with the same dx who has already started treatment and what that treatment was. I don't meet the oncologist until the end of June and I am just curious if I should expect chemo. I am 47.
Thanks
Lynn
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Mary Lynn, I have the same diagnosis. I got biopsy results 2/11/08. I had a bilateral mastectomy (my request) on 3/26/08. I met my oncologist before my surgery and was reassured. I asked my oncologist about an oncotype test and she requested it. It made my choices much more clear. I opted to do the 4 rounds of chemo (TC) that my oncologist recommended.
I am 65, very good health, post menopausal. I am also taking Femara (AI) daily and infusions of Aredia (to strengthen bones) every 3 weeks.
My 1st chemo was 5/24/08. On 5/26/08 I got very nauseous and i think I threw up my toenails. My onc gave me medicine that stopped that immediately. He also said it would not happen again since he now knows exactly what I need to avoid that. We shall see! Tx #2 is 6/13/08.
Oh, I have a husband/wife oncology team.
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Beegirl,
Thanks for the post. I was thinking that by having the mastectomy and that because my nodes were clear that I would avoid the chemo. I wish I knew more on how the oncologist makes the decision on what the treatment will be.
Good luck with your remaining chemo and I will be thinking of you.
Lynn
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One more comment. My tumor was .9 cm, originally thought to be 1.6cm or 1.9cm. 10 nodes removed - all negative. Surgical pathology report ER+ PR- HER2 -/+?.
The oncotype report gave much clearer results - and different - ER+ PR+ HER2-. It also made clear what the statistics were for recurrence with or without chemo. My onc said it was my call.
I decided to drop my chances of having a recurrence as low as possible. I have not regretted any of my decisions - yet.
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You look like - what was your oncotype number? Mine was 21 and I chose to do chemo which my dr felt was a good decision.
Marylynn - does the oncologist have your records? If they do then they probably felt you could wait until the end of June and maybe are thinking you don't need chemo.
My case was pretty much the same as yours. I got two opinions, both said I was a classic textbook case and felt I would come back with a low oncotype number and not need chemo but the number came back higher then they both expected. If I knew then what I know now, I would have asked them to start the oncotype test right after surgery. That way the results would have been back for my first appointment and I would not have been given false hope for no chemo.
Good luck - hopefully you won't need chemo and if you do it's just a temporary bump in the road to a healthy life.
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ACS standards are chemo for over 1cm, no nodes, ER/PR+, Her-
I was over 1cm, but grade 1, stage 1, and post-menopausal, so my doctors didn't recommend.
The determining factor is often whether or not you have been through menopause, and also whether you have other medical conditions that make chemo problematic.
Oncotype numbers can help, but don't forget that many of our oncologists have 20 or more years experience with this, and we shouldn't ignore that knowlege.
Both the oncologists I consulted are considered among the best in our area, and they both agreed.
Sue
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Hi Lynn, I was diagnosed Aug 07, had right mastectomy with expander, had them exchanged for implants in March, It was 1.7cm, stage 1, grade 1, perimenopausal, er/pr+, her-, no nodes. My onkotype dx score was 12. I chose not to do chemo. I am on tamoxifen. So far so good. good luck with your decision. Before the onko test my oncologist suggested chemo because of my age but when the score came back 12 I chose not to do it and he felt okay with this.
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Hi Lynn, I was diagnosed Aug 07, had right mastectomy with expander, had them exchanged for implants in March, It was 1.7cm, stage 1, grade 1, perimenopausal, er/pr+, her-, no nodes. My onkotype dx score was 12. I chose not to do chemo. I am on tamoxifen. So far so good. good luck with your decision. Before the onko test my oncologist suggested chemo because of my age but when the score came back 12 I chose not to do it and he felt okay with this.
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MaryLynn,
Just wanted to make sure you're familiar with the Oncotype Dx test that so many have mentioned.
Here are a few links about it:
http://www.genomichealth.com/oncotype/faq/hcp.aspx
http://www.genomichealth.com/oncotype/about/pat.aspx
http://www.breastcancer.org/treatment/chemotherapy/new_research/20060126.jsp
Oncotype Dx is a test done on a tumor that can give you a likelihood of how much added benefit you would get from chemo. A lot of women with ER+/PR+/Her2-negative, Stage 1 cancers can have a low recurrence score, based on their tumor genetics and the protection they will get from taking tamoxifen or an aromatase inhibitor. If you have a low recurrence score, you and your oncologist can discuss whether you think the small added protection of chemo is worth going through chemo, in your judgment.
My Oncotype Dx score was 16, which is fairly low (below 11 is REALLY low, where almost everyone skips chemo), and I decided not to do chemo, with my onc's support. [Age also is a factor; I was 54, and my son was 24 -- if I had been 40 with young kids, I might have made a different decision.]
Maybe you can make sure that your tumor sample is sent for this testing so that your oncologist has your results in time for your first appointment? My insurance (United Healthcare) covered the testing with no question or delay -- but I have read that the company that performs the test, Genomic Health, is very good about absorbing the cost if a woman's insurance company refuses to pay -- so don't let that be an issue.
Wishing you the best,
Ann
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My oncotype score was 17 - right on borderline. The oncotype report said my chance of recurrence was at 11%. My onc said if I did TC 4tx it would drop those numbers to 7 - 8%, then with taking femara daily and aredia every 6 weeks, my chances of recurrence would drop to 4 - 5%. This would put my chances back to the same as someone who has never had cancer. That sounded good to me. She also told me if I wanted to stop at any time I could.
If my general health were not as good as it is, or if I were getting worse SE's from the femara or aredia, I probably would have had a much harder decision.
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Thanks so much for your input, I wasn't aware of the oncotype testing, thanks for the websites Ann. My family doctor had mentioned that he did not see chemo as part of my treatment, but both he and my surgeon did state that it would be the oncologist that would in the end make the call as to whether I needed it or not.
Thanks again to all,
Cheers,
Lynn
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Hi Lynn - I would encourage you to ask about Oncotype DX - may help with your decision. My diagnosis is similar to yours - except mine was a grade 3. Oncotype DX came back at 28 - the decision was made for me - needed four rounds of TC. Finished almost 3 weeks ago and now going on to radiation. I am 54.
Deb
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I would encourage going for the Oncotype. The research is behind the Oncotype. It doesn't matter what has been done for the last 20 years.
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Good news grade 1 stage 1. I had both and had the oncotype which came back in the low catagory (8) so no chemo for me just radiation. I am having a oophorectomy next week. I am 45 I was diagnosed in 2005. Stacey
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It is so helpful to read the information that you all write here. Thank you to everyone. I learn something every single time I check in here. I saw my breast surgeon yesterday and I decided on a lumpectomy with radiation for sure. After the surgery with sentinel node bx and then onco testing, we will be able to determine the chemo question. I am still very numb, and going through each day by just putting one foot in front of the other... going to work and functioning in a semi-normal way. Working helps to distract my head. I am planning to keep working through everything, except maybe chemo if I have to have chemo. I feel like I need to trust in my surgeon, rad oncologist, and medical oncologist. Trust... while still making my own decisions. I am so scared that my decisions are the right ones.
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2/24/2010
Hi-
I realize that the last post was from 2008...here's my story and experience with Onco (Genomic Health)
I was diagnosed at 30 on Dec 3, 2009 - IDC, 1.3cm, no nodes, ER+/PR+, HER2-, BRCA -, I opted for a dbl mast with tissue expander reconstruction (very pleased)- I too thought that since no nodes were involved that my surgical decision was to rid all that could have been infected, that it would create a slim to none chance for chemo- oh and I'm getting married 5/10...great timing!
So my doc and I do the Onco DX- my score came as 31!! My doc noticed something not right, I met with a oncologist (before knowing my results were in)- my doc had called the oncoligist- to let him know that something was fishy...so I met with the Onco, and he sees 31, and immediately tells me about the most aggressive treatment...upon leaving, I ask for copies and Oops, all of a suddden, he tells me that the ONCO test was based on an ER Neg- not ER+, which is conclusive by 3 tests...he would never have mentioned it to me if I didnt ask for copies...then he was suppose to send out a new speciman to Genomic (he leaves for vaca), turns out he sent the speciman back to the hospital that I had surgery- so It's now been sitting there for week, when my doc and I thought he sent it to CA...so 3 weeks after my ER+ speciman was to be sent out- the lab is giving me a hard time for a repeat test! Now. IF this redo (if they redo) comes high again, my window for fertility and chemo are closing in - I have been back and forth trying to get an explaination as to WHY the lab is on the brinks about not retesting- when my health is lying on it...so hopefully I will recieve some answers today-
Moral to my story is: Triple check everything and make sure you receive copies of everything in every doctors medical chart- I have everything down to the actual surgical notes
keeping my fingers crossed that they redo and score comes back LOW...
Take care- best wishes to all!!
A
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Hi A,
I don't have the same problem as you, it's an awful mess. Hope you get it sorted out soon as you really need to know. And congrats on the upcoming wedding!
My diagnosis is much the same as yours, 1.3cm tumour,- turns out I had some DCIS as well as IDC. I am 48 and premenapausal. We don't have the Oncotype test available in Ireland. Have had my surgery and told radiotherapy a given but am wondering if chemotherapy is on my horizon. Am waiting to see a medical oncologist.
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I see that most of the posts on here are pretty old, but this seems to be the closest section to what I'm dealing with. I am 37 and premenopausal; 4 weeks ago I had a unilateral mastectomy. (Got an implant at that time and reduction on the other side.) The path report on the tumor came back as 3.3 cm, IDC, Stage II, ER+/PR+, HER2 equiv., node neg. I am currently awaiting results on the Oncotype test, and have a PET scan scheduled for next week. I have been super positive and "calm" since my diagnosis but now I'm starting to get worried. I hate waiting; I like to have a plan, and something to work towards. This might sound dumb, but I'm almost afraid of my gene test coming back with me in the low risk category because then they might not recommend chemo, and I just feel like with my age and it being stage II, it might be best to have chemo. What do you guys think?
btw, best of luck, A., with getting your test re-done, and getting good results! And with your wedding!! That is so exciting!
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My gene test had nothing to do with my chemo recommendation. My gene test came back negative and, according to my post lumpectomy/sentinel node biopsy report, I had clear margins and no node involvement.
My tumor was 2.7 cm, (which put me as a Stage II IDC, ER+/PR-/HER-) and that, along with a few other variables, is what indicated chemo. My doctor used a chemo evaluation tool. I know lots of people put a lot of stock in the ONCO testing scoring, but I did not and would not, myself.
Frankly, though I'm not crazy about the idea of the side effects of chemo, I want to throw every and anything I can at this disease.
As it turns out, the scans my medical oncologist ordered prior to the chemo showed some swelling in two lymph nodes (which may be from the lumpectomy/sentinel node removal), and, something that caught me off guard, 2 lesions on my liver.
So it turns out that the chemo regime I just started would be what he recommends for the liver lesions, IF they turn out to be bad guys.
If you feel that chemo is what you want (not that any of us "want" it) please make your feelings known. I can't imagine an oncologist actually saying "no."
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Thanks Michele, I feel better hearing that your feelings are similar to mine; and what you said about the oncogene test. I completely agree with what you said about not liking the SE of chemo but wanting to throw everything at the disease.
I really hope your liver lesions are not a big deal. Do they have to biopsy those, or just monitor them with scans after your chemo? How many treatments are you having and how frequently?
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I hope so, too, horsedoc!
They are going to get an MRI first, I suppose to get a better look. A biopsy will depend on how the MRI turns out. The MRI is scheduled for March 8, then I know the results won't be back for several days, so I'm having to just put that thought process on 'hold' or I'll go crazy!
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I am wondering if any of you who have commented on this thread are still loging on and participating? I'm a new member here as of today. I had recent bilateral mastectomy with skin saving repair on 4/7/11 and am meeting with my oncologist for first time on 4/19/11. I had a 1.13cm invasive ductal carcinoma tumor, stage one, negative sentinel node biopsy (3 sentinel nodes taken, all neg), Er +, Pr+, Her2- tumor. I'm 52 and premenopausal. My surgeon indicated this wk that with my age i should see the oncologist and she will most likely ask for the oncotype test to help decide about chemo options. I read all of your posts, found them very interesting and helpful, and am wondering how you all are. This is the first online chat discussion I've ever done so I'm really new to all of this as well as breast cancer! I have done quite a bit of reading re breast cancer. I was diagnosed 2/25/11 so had five weeks to research prior to surgery. I have a background in medical
social work (17 years), and was able to choose excellent surgeons from our area. So far my recovery has gone well. Now learning now about what is next. Pls let me know how you are doing!! -
violin:
I had DMX on 9/20 with SNB and all was clear. No node involvement, 2.3 cm (stage 2) and I had the oncotype done. I was 59 and post menopausal at time of dx and oncotype was 19 and mammaprint was low risk so MO opted for no chemo - on Tamoxifen for 5 years.
Doing really well - just some weight gain
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To Jan508
What is a mammaprint? Have not heard that term yet.
Thanks
Sherry
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