Aug 12, 2017 09:15PM JJLA wrote:
Thank You so much Nottoday and I'm wishing you the same as well :)!
All Topics → Forum: High Risk of Recurrence or Second Breast Cancer → Topic: Long term "high oncotype test" survivors
Posted on: Aug 8, 2008 12:54PM
Is there any long term survivors who have had a high oncotype score. I know that this test is relatively new but I also know that it has been on the market at least 4 years. So I know that "long term" regarding this test isn't very long term. I had it done 3 years and 4 months ago. My oncotype score was 52. My onc told me that the test had been on the market only about 8 months. I'm just curious about others who have had an extremely high score and are still clear (so to speak). I am doing great with no signs of any kind. Is there alot of others out there? By the way, I love this site.Log in to post a reply
Posts 391 - 405 (405 total)
Aug 12, 2017 09:15PM JJLA wrote:
Thank You so much Nottoday and I'm wishing you the same as well :)!
Aug 16, 2017 03:25PM 1OUgirl wrote:
Hi everyone. It's 1OUGIRL. I started this thread many moons ago. I just noticed that some have sent me PM's. I didn't even know that I could get private messages so please forgive me for not responding. It's been 12 years since my breast cancer and I'm still going strong. Just had mammogram and an MRI and all is still clear. I wanted to update you on what has happened to me. When I was diagnosed I was young and had 6 (mostly older) sisters and no breast cancer in family and could not understand how I could have gotten breast cancer while none of my family had ever had it. I got a new Oncologist and she wanted me to take the mutated gene test this past year. I took it and they found that I had the chek2 gene mutation. That explains a little bit - I guess. They now want me to do a complete prophylactic double mastectomy with reconstruction due to this mutation. I am scheduled for that in September. BUT the thing that is so bothersome is that I have 2 children - both girls or I should say young women now and the doctors wanted to test them also. We have received my oldest daughters test back and she also has the mutation so doctors want to perform the same operation on her. My youngest daughter should know within the next week if she has the mutation. My sisters are all beginning to take the test because they and my daughters have a 50% chance of having the mutation since I have it. What's more, if my sisters have it then their daughters have a 50% chance of having mutation. If they don't have mutation then their children don't have to worry about it because it only goes down through the parent to child. Both of my daughters have only son's and the doctor said it just raises their risk of colon or prostate cancer a little bit - thank the Lord. From my understanding, there are hundreds of variants of this mutation and the doctor said I have one of the most rare ones and they do not know enough about this mutation to safely leave tissue in my breast and I don't want to revisit this disease with my children so they are considering this huge operation also. It's a lot to take in but the oncologist said that it is better to NEVER get the breast cancer than to have had it and THEN remove tissue. My breast surgeon told me that I am really doing well because I have not had a new primary with this mutation. I want to take NO chances - this tissue is history! I know that this has nothing to do with distant recurrence but I wanted to let you ladies know that I'm still HERE!!!!! Praise the Lord.
Aug 16, 2017 05:12PM Hopeful82014 wrote:
Hi, 1OUgirl - It's great to hear that you've done so well. Examples such as yours are very encouraging.
In regard to your decision about (and your daughters') prophylactic mastectomies: if you 3 haven't had the opportunity to sit down with an excellent genetic counselor and explore your risks and options in depth, it would be a very good idea to do so. I'm not saying don't do the mastectomies, just be sure you're going on more than one or two opinions when making those decisions. In your shoes (and your daughters') I would absolutely seek a second opinion at a major cancer center. Good luck to all of you.
Aug 16, 2017 05:33PM QuinnCat wrote:
1OUgirl - hi! Always look forward to your posts as you are the one I discovered early only in this cancer mess who had gotten past more than a few years with a high oncoscore. Mine not as high as yours, at 39, but my MO at OHSU said it was the second highest he had seen. (I've seen many higher, here, since he said that, but it still leaves an impression). Over five years later and still NED.
Glad you were genetically tested. Somewhat like you, I was the youngest female of my generation of siblings and cousins of my mother and 2 Aunts who had breast cancer (and later, another 1/2 sister of theirs, so 4 of my 6 Aunts from my maternal grandmother had BC, while my grandmother, who presumably carried the gene based on her siblings, lived to 89 without BC). I remember passing menopause and thinking I was home free as those three all got breast cancer at age 52, though I still sensed it was genetic. I just got lucky as did the rest of my generation. Turned out one of those female cousins, unbeknownst to me, had BC two years before me (and she is two years older than me), and got genetically tested per my results. She was negative! Her brother was positive though. You just never know if and when and it takes a large sample population to approach the 50% mark.
I cannot speak to the decisions your daughter or daughters will make, but I agree, second opinions are always good. As far as yourself, I think you are making a wise decision. A friend of mine, recently diagnosed and 13 years out from BC, has BC again. She lost a sister to BC and both initially dx'd in their 40's. When she had her genetic test, only BRCA was being tested for. I assume now she will get further genetic testing. She did a unilateral mastectomy for the first go around and only recently did a DIEP for the first mastectomy. So glad your new MO was very wise!
Aug 19, 2017 09:24AM MamaFelice wrote:
Thank you ladies for sharing your courageous BC journeys! I have connected to you all as I too have a similar case in terms of IDC, higher grade, micro lymph node involvement, etc....and though every body is different in how they react to the treatments, the doctors still place the same treatment options in the table.
I have my surgery-- BMX w/o recon-- scheduled for 9/5, and then chemo will follow. Right now, Cytoxan & Taxotere are being recommended....4 to 6 cycles. I cannot have ACTbecause I already received my life dose of adriamycin 24 years ago when treated for Hodgkin's lymphoma (this BC is considered a long term SE of the rads to my chest received), and the heart cannot take any more adriamycin. Since I am dealing with many major SEs from treatments from lymphoma, I can't help but want to know more specifically what this chemo will actually do for the cancer since I will be removing my breasts And axillary lymph nodes (& assuming with God's will the rest of my nodes will be clear of disease)...... catch a "possible" floater? And seeing how the chemo is an adjuvant therapy to surgery with really only a small percentage of weight in the scheme of treatment....I guess my question to those of you that have gone through the chemo-- did you feel it was worth it for that small move in percentage?
Anyone like Meow13 that chose to forgo the chemo and go right to endocrine treatments? This is of course asking women with more "aggressive" early breast cancer with things like higher clinical grade and nodal involvement. I guess, I am glad that I am not the only one that the docs seem to be leaving the choices for me to make. When I had my lymphoma it was "chemo & rads or die"-- and this is all quite a bit different of an experience.
Thank you all for reading my long post and empathizing in any way you can! Would love to hear what your docs shared with you as to the benefits of receiving chemo and what it's purpose is in beating this disease. Blessings to you all!! 😘😘😘😘
Blessed47 year old--wife and mother of 2 teens in North Carolina
Aug 19, 2017 11:39AM MargoChanning wrote:
Hi 1OUGirl, thanks for your update and thank you for starting this thread. I had a score of 40, so it's indeed heartening to hear of a long term survivor like yourself. Best wishes to you and your family as well. I hope someday soon they get all of this genetic business straightened out, but in the meantime I'm glad people like me -early stage with negative nodes - are able to take advantage of the Onctotype test and get chemo which *might* eradicate any cells left after surgery. I'm in the fifth year of Aromatase Inhibitors, mostly taking Letrozole, and having discussions with my former MO (current one at an HMO is useless) and reading up on everything related to the whole 10 years on AI debate. I will need to make a decision by end of year about staying or getting off the AI misery train. Thanks again - hope you continue to thrive.
Aug 19, 2017 02:50PM nottoday wrote:
When you have your surgery, you likely will have the opportunity to have the OncoType Dx test - or perhaps a similar genetic test - performed on a sample of the tumor. The results from that should give you a good indication of the benefit of chemotherapy and you can decide if the benefit is worth the risk. I had decided that chemo would have to buy me at least a 5 absolute percentage point decrease in the chance of distant recurrence. With my high recurrence score, my risk over 10 years was 27% without chemo; 10% with. The 17% percentage points were enough to make me decide to do the chemo.Of course, I dreaded it. I did 4 cycles of T/C. Oct 21- Dec 21, 2014. More scary than anything else. Minor side effects; few that have been lasting. And I don't regret it. You'll see that others on this thread have made other choices, and also believe they did the right thing for themselves. None of us chose breast cancer, so it's good that we have some choices in how to handle it. I wish you well.
So glad to hear that you are well, but sorry you're having to wrestle with tough decisions. I agree with Hopeful and QuinnCat about the need for more research and consultations. I don't know much about CHEK 2. Please keep us posted on how you and your family are doing. And thanks for starting this thread. It has been a good source of news and support for those of us in the high-scoring group. (The one time in life you wish your scores weren't so great! :))
Aug 19, 2017 03:22PM tessu wrote:
MamaFelice --- you asked "I guess my question to those of you that have gone through the chemo-- did you feel it was worth it for that small move in percentage?" My two cents: You post your pathology as Grade 3 --- like mine. Oncology scores are not done here in Finland, but my Ki67 (the risk test done here instead) was 80% -- very high. My oncologist said that chemo works best against cancers that are high grade like ours. Like for your lymphoma, treatment was presented to me as "do chemo or die". I'm only a short-term survivor,I go for my 2-year check-up the end of next month, so I'll see then if my chemo (plus Herceptin, which was still going at the time of my one-year check-up) was "worth it". I hope that whatever treatment you do take kills that cancer once and for all! (((hugs)))
Oct 17, 2017 08:24PM Scrafgal wrote:
I've been following this thread for about 2 months. It has given me great comfort, ladies. My oncotype was 46. When I found out, back in Feb, I was floored! Now that I am done with the mastectomy, chemo and look forward to my exchange surgery, I just think about the fact that the score gave me confidence about doing the harsh chemo. I am a healthy 51 year-old (other than the BC), so I decided to try to hit the cancer as hard as possible. Sometimes I wonder about the future, but IOUgirl, you give all of us such inspiration! I am planning to just live my life, going forward. I return to work around Thanksgiving!
Oct 17, 2017 08:30PM Logang wrote:
Scrafgal my score floored me too! When I heard the number 57, I knew immediately that it meant chemo!
Oct 17, 2017 09:40PM Legomaster225 wrote:Just curious, Scrafgal and Logan, did you have radiation treatment as well? I have bilateral cancer Oncotype 39. I had radiation on one side but not the other. BS did not think I needed it at all but I had a positive node that was cleaned up with chemo.
Oct 19, 2017 11:40PM Logang wrote:
I did not do radiation. I had no lymph node involvement and margins were clean with the mastectomy.
Oct 29, 2017 10:28AM Scrafgal wrote:
I did not need radiation either...clean margins with mastectomy and had no node involvement and tumor was below the threshold (<5cm).
Oct 29, 2017 04:24PM Legomaster225 wrote:Thank you both. My margins were clear also. Only issue is that we did not do any node testing on the left as we had no reason to suspect cancer on that side and nodes look good on MRI's. It was supposed to be prophylactic. Drs. think with that side being 100% ER, and having had chemo that the risks with doing Axillary lymph node dissection and radiation would not be worth the risks on that side My tamoxifen treatment would remain the same regardless and that's what will hopefully keep it from cropping up anyplace else. Glad to hear others also did not have radiation with clear margins.
Oct 29, 2017 07:30PM Scrafgal wrote:
I actually double-checked with my radiation oncologist, post-chemo, to make sure that the recommendation for no radiation was strong. It was a strong recommendation. I am at MDA ,and they tend to be aggressive. So, when they don't want to do something, there is usually a strong, data-based, protocol-based reason:) Also, there is greater risk when radiating on the left vs. right, as I understand it, so trusting your doctors probably is best!