Long term "high oncotype test" survivors
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Thank You so much Nottoday and I'm wishing you the same as well
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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.
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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.
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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!
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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!! 😘😘😘😘
Gina
Blessed47 year old--wife and mother of 2 teens in North Carolina
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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.
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MamaFelice,
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.
IOU,
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!
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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)))
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Greetings!
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!
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Scrafgal my score floored me too! When I heard the number 57, I knew immediately that it meant chemo!
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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.
This thread gives me hope when I read about others with high oncotype numbers doing well.
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I did not do radiation. I had no lymph node involvement and margins were clean with the mastectomy.
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I did not need radiation either...clean margins with mastectomy and had no node involvement and tumor was below the threshold (<5cm).
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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.0 -
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!
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I have an oncotype score of 57; it really concerns me. I feel doomed. I am doing four cycles of TC chemo, and then, twenty radiation treatments , and then, ALS. I feel the cancer will definitely be back. I had a lumpectomy.
3.2 IDC Er+ Pr- HER2- 0/2 nodes
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Hi Camille,
PR- seems like a recipe for a high oncotype. I got a high oncotype 3 years ago. I was terrified of chemo. But I got through it - same regimen as you, and I am fine. Funny thing is now I'm grateful. I think before the oncotype, based on negative nodes, we may not have been recommended chemo. And we really would have had a high risk for recurrence. With chemo, that risk is quite a bit lower. Also, from what I've read on this board, chemo is more effective against higher grades.
If you need someone to talk to, private message me. No need to go through this alone.
If you look under the chemo topics, you'll find ladies starting the same time as you. For me, being part of those groups was a sanity saver.
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Camille
I know how you feel...when I got my score of 46, that was the first (and only) time that I just cried right in my doctor's office. He then reminded me of what the score means: that I will really benefit from chemo and significantly reduce my recurrence risk...He said:" now that we know, don't look make yourself upset by rereading the report. We got our answer about chemo. Let's do this!"
I actually didn't take the report home just to be sure that I didn't revisit the issue. I started chemo 2 days later...finished in August....back at work. You can do this!! You just have to take one day at a time.
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I hate that test. When I got a 34 I felt like I was condemned. I had a horrible twilight zone dream that I entered a cave was given a number. I stood with other people holding the same number wondering if I would ever find a way out.
I think someone thought it was a good idea to give a simple number result to decide our treatment. That number seems to possess wisdom for the only way to proceed. My mo held it as the most reliable indication for treatment.
I wanted to know how and why I came out a 34, $4,000 to be given a number. I am so happy I snapped out of it and looked at the statistics with a different type of drug. I wasn't going to take tamoxifen I was offered AI drugs. Also I belong to a much less common cancer dx less than 10%. So the studies I felt held too small a sample size and additionly comparing tamoxifen to AI drugs was like apples and oranges especially with er+pr- category. Chemo also targets fast growing cells but my cancer was slow growing.
Both my breast surgeon and my mo asked to use my engineering/mathematical background to make my decision. Once I explained my assessment of my diagnosis and chose no chemo even with a high risk score they both accepted my decision without argument.
It is so frightening how little they know about cancer and treatment. It is a balance of risks, sometimes it is damned if you do chemo or damned if you don't. My advice for anyone is to look at your case and your health history and decide if you think chemo is needed for your case.
One thing I have learned through my journey is to use extreme caution when taking medication.
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Someone made a comment that lower pr % tend to have higher oncotype scores. (I quickly looked back but could not find that comment now). Anyway I curious about that. I need my case I was er23/pr10 on the tumor that was tested. My score wasn’t 39. I guess in my case My er was not too high either though.0 -
Legomaster,
As I understand it, PR+ opposes ER+ in a good way. So if one is ER+/PR-, the oncotype score will be higher.
Also, as I understand it, even 20% ER is interpreted as positivity for treatment assessment, regardless of PR status. It's a matter of the extent to which the treatment will be useful (I think). I was 95% ER/90%PR...and my medical team was totally happy about that PR, given my ER!
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1OUGIRL here - Boy has a lot happened since I last posted. My oncologist decided I needed a test to see if I have any mutated genes that might explain why I got breast cancer at 42 because I have 2 daughters and they would need to know if there is a mutation in my genes so they could get checked out themselves. I did the test and found out I have the Chek 2 gene mutation (shocked is an understatement) and I found out that my daughters would have a 50% chance of having the mutated gene themselves. They were checked and they BOTH have the mutation. Breast surgeon told me that to be sure it does not come back in my breasts I could have a Prophylactic Double Mastectomy with reconstruction. I am now 3 months out from having that surgery and still recovering. My oldest daughter has had the same surgery and my youngest daughter is preparing to have surgery. The doctors said that they have a 50% chance of breast cancer if they did not have surgery but that percentage would go down to about 7% with surgery. They didn't need much convincing after that news. To Frenchgirl63 I want you to know that my onco score was a 52 nearly 14 years ago and I still have not had any signs of a recurrence so don't feel doomed. My doctor said that every year that goes by is a great sign. Please be encouraged ladies because we really are SO fortunate that we have the Onco test so that we can get the correct treatment so that we can stay alive for a long time and really live! P.S. Regarding the Chek 2 gene mutation, it also seems to make colon cancer risk go up a little bit so I had a colonoscopy and all was clear on that front. I will have to have a colonoscopy every 5 years as opposed to every 10 years but I take things one day at a time because that is really all anyone has - we have today, I refuse to worry about tomorrow I am just so thankful to the Lord that I have had nearly 14 years from the time of me finding the lump to live very happily with my fantastic family.
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Oops, I just counted back to when I was diagnosed and it was April 1, 2005 (April Fools Day - I really thought for a second when my doctor told me that she was joking - Haha) so I am nearly 13 years out and not 14 years out like my last post reads - but who's counting anymore? Teehee
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1OUgirl - you were the one that first gave me hope with my 39 score. Thank you for continuing to come back and check in, as it still heartening to see you are doing well. I have the brca2+ gene and it seems these genetic mutations create more aggressive cancers. Also, ER+PR- (luminal
is a more aggressive cancer than ER+PR+ (luminal A). I was highly ER+ and barely PR positive on IHC. Oncoscore agreed with the PR, and though I was still positive for ER, it seemed more middling, but I've never gotten a good answer why those two tests agreed on PR, but not on ER. Oh well, SIX YEARS out and still NED.0 -
Quinn, I just saw a new medicine for brca gene patients. It says you must first have been treated with chemo before you can try. $13,000 a month, did you see it? Just FDA approvdd for prevention sounds fairly safe as far as side effects.
I was never genetically tested because of no family history insurance payment was iffy. I am also 6 years out my oncodx was high like yours at 34. I never did the recommended chemo. I am doing great after 2 years of AI drugs.
But I do feel I aged more than I would have normally.
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1OUGirl,
You gave me such inspriation after my 46 score! I, too, thank you for coming back to inspire us all. I am so happy that you started this thread!
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So happy to have found this important thread after googling where to find others with high RS scores! I've read every comment (all 14 pages) and you have given me answers and hope. I am a former breast cancer scientist and now find myself on the other end of the spectrum.
As a scientist, I am fascinated by all of our 'numbers' and especially my own. It appears that I have a high number of ER (Path) and that they are highly expressing (Oncotype). I'm guessing from some of your comments that this is due to my low PR no longer 'tempering' my ER? I think this also might make me a good candidate for AIs down the road. In my research, we used estrogen to stimulate breast cancer growth, so I'm hoping, HOPING, by blocking estrogen synthesis that we will prevent potential cancer in other breast AND met growth. But my reading also suggests that PR may be low due to other non-Her2 growth-type factors (ie, EGFR, mTOR) and that these may still be 'feeding' the cancer.
Has anyone else speculated on why our PR levels/expression are so low?
Laura
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Meow - no I hadn't heard of this, but thank you for posting as so timely. A friend of mine has been Stage IV for 11 years and is in a trial at UCSF and sees Dr. Hope Lugo tomorrow with questions from me (my MO in Oregon is referring me to her for questions, but my friend and I are hoping by her mentioning me to her, I'll have an "in," as someone else was turned down for an appointment). Sorry that is long winded. I'm a texting her what you just said!
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Hi QuinnCat:
I think you mean Dr. Hope Rugo (with an "R"). You are currently NED and have never been diagnosed with distant metastatic disease? In such case, you are likely to be informed that Lynparza (Olaparib) is not appropriate for you at this time. The new FDA-approved indication for this drug is in certain BRCA-mutated patients with metatstatic breast cancer:
ASCO Post (2018): http://www.ascopost.com/News/58441
The above feature contains a link to the revised FDA label [1/2018] and the new breast cancer indication is:
"Breast cancer
in patients with deleterious or suspected deleterious gBRCAm [germline BRCA-mutated], human epidermal growth factor receptor 2 (HER2)-negative metastatic breast cancer who have previously been treated with chemotherapy in the neoadjuvant, adjuvant or metastatic setting. Patients with hormone receptor (HR)-positive breast cancer should have been treated with a prior endocrine therapy or be considered inappropriate for endocrine treatment. Select patients for therapy based on an FDA-approved companion diagnostic for Lynparza. (1.3, 2.4)"Of course, patients should always seek case-specific expert medical advice from their medical oncologist.
BarredOwl
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Laura and others,
Here's a paper I read in Nature about 3 years ago about the role of progesterone in bc: doi:10.1038/nature14583. I'd be interested in any other papers that describe the role of PR in breast cancer.
I recently read a meta-analysis ( DOI: 10.1056/NEJMoa1701830) looking at 20-year recurrence rates among women who had completed 5 years of hormonal therapy. In that paper, the role of PR as a predictor of recurrence disappeared after about 5 years; after which recurrence was related to the initial TN status. Of course, this was among women who generally were diagnosed before 2000 - before Herceptin and before Oncotype DX was available.
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