Oncotype Dx - Regrets?
In September I knew little to nothing about Breast Cancer. Until I was diagnosed with Invasive Lobular ER/PR+ (Node negative after Sentinal Node Biopsy) Please excuse any of the word that I may misspell, I have not known them very long!
I was scheduled (gratefully) for a Bilateral Mastectomy the following week and found comfort and relief in what I still today so thankful that I endured. Followed with 3 more surgeries that involved further reconstruction and Implant Replacement (I didn't ask to be a B cup after surgery, so they replaced the implants)
But, the thought that never leaves my mind was the involuntary testing and treatment decisions that my Oncologist made. - Oncotype Dx is something everyone might be familiar with and comfortable with putting all their faith in... I am not!
My treatment after an Oophorectomy (Surgical Ovarian removal) and being prescribed Aromasin for 5 years, is nothing more than that...
I am and will always be convinced that it will just come back. The cells that may have survived outside of the "Clear Margins" that were achieved on Surgery #2 are being inhibited, not being a Doctor I can only see this from my own perspective, as a patient and trusting my gut feeling.
I sadly have friends that are also fighting this disease, and I know that everyone is different and has a different diagnosis. But, last Friday one of them passed away at her 5 year survival anniversary.
Oncotype Dx determines if you can or should have Chemotherapy. My Oncologist said that because my score was low (a 4) that I would not benefit from Chemo and that it would do more harm than good.
I would never regret the harm... I will forever be wondering if it has already established itself in a distant location, Metastasis is always on my mind. Day in and day out... I can't shake the feeling that it's growing somewhere else and won't be discovered until it's too late.
I had no MRI's or CAT scans offered to me.
I wish they had given me Chemo, every minute of the day!
Comments
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If you don't fully grasp what that "harm" constitutes it is hard to understand when doctors use that reference. Understand that permanent and daily pain, hearing loss and tinnitus, damage to your bone marrow's ability to make new blood cells, cognitive impairment, fatigue that does not go away, osteoporosis, permanent hair loss, permanent neuropathy, and many other conditions are caused by chemotherapy. These are not isolated cases. You will read here that chemo is "doable" and that you will "get through it", but you need to read further and realize that many of us are dealing with fallout from having received chemo that will affect us for the rest of our lives. If chemo is unlikely to help you, and with your Oncotype Dx score that appears to be the case, why would you want it and risk these potentially life-altering problems when testing has shown there is no benefit? You are unequivocally in the low category, not a gray area. It is important to acknowledge also that chemo is not a silver bullet. It does not work for many of us - if it did there would not be the recurrence rates that there are, and people would not progress from early stage to stage IV after receiving it. This board is littered with those stories. May I gently say that rather than chemo what you really need is some assistance in coming to terms with how to handle moving forward without so much fear. The anxiety surrounding recurrence can be a debilitating thing and I'm not trying to minimize that, but I can guarantee you that those of us who have had chemo still worry about recurrence, and pray that it worked for us. Having received it doesn't erase that. I wish you the best and hope that you can find a way to live your life with joy, and that you can look forward to a long and healthy future.
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I agree with SpecialK.
I would be more worried if they had NOT done the Oncotype. I lobbied and wrote letters and it finally got funded here a month after my surgery. I will never know my score now and that makes me uncomfortable. I understand the uncomfortable feeling of not doing everything. Prior to surgery I talked to a therapist because I was feeling similar. At first they said only surgery and I would be great, but I had involved nodes. If you just can't shake the feeling you might pay for a CT scan on your own for some peace of mind. But with clear margins and no nodes you do not need them from a medical standpoint, regardless of your oncotype. Here the extra scans are only done if you had lymph nodes involved. Chemo is way worse than I ever expected, and I was an oncology nurse and thought I knew the reality. And the side effects can be permanent, as are some of the effects on your organs. This disease is terrible and steals so much from us, including peace. I pray that you will find some peace and joy again. Also it might help you to research the science behind Oncotype, what it checks for you individually and the studies showing the effectiveness of it. When publically funded health care (canada) decides it is effective and more important than the tumor size (etc) to determine individual benefit from chemo you can bet that wasn't taken lightly. It's 5 grand a person and for it to be approved by a system already deeply in debt speaks volumes to me. I hope that one day soon you will rejoice that it was 4 and not 44. I am glad you voiced your concerns here, many times my frantic thoughts have been eased by the wise words of women here. I hope you find the same.
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I am afraid there are no guarantees no matter what you do to prevent return or mets. I had a score of 25 for my ILC and did not have chemo. As my onc said when I made the decision -- it is a crap shoot. If you continue to follow BCO you will find stage one women who do everything and still progress to stage IV and stage IIIC women who never have another problem. Of course if I develop mets I will wonder if chemo would have saved me. But the nature of ILC is that chemo is less effective and so there are those who have had chemo who still progress. Age was also a factor for me. I am 69 years old and so the trade off of time spent sick due to chemo vs the potential benefit of longer survival is different than if I were 40. That is my life expectancy is not 40 years not matter what I do, and so I did not want to spend a year sick and bald. So far I am ok, as far as I know. Of course all the aches and pains that accompany getting older cause me worry. I have not had any scans and hope that I don't need an;y. A scan can only tell you how you are that day -- it cannot see very small cancer cells that might be poised to launch the week after the scan. So while you can regret not having a baseline scan, it still wouldn't be any guarantee that there would be no mets ever. Finally, while it is hard, try to just live with your decision.
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Looking back I am very angry I suppose!
I wasn't asked and didn't sign anything. If I did it certainly wasn't explained to me.
My OBGYN had looked up my Pathology while we were discussing an Oophorectomy and she saw Pathology was back. So I called and they simply said, word for word... A different one is still pending! - Shouldn't I have known what it was? Or was it too much for them to have the decency to call it what it was? To me, that has put me off the test... It felt like it was hidden testing, I was insulted by the flippancy! This was only weeks after my Diagnosis and I was so vulnerable and not in a good place! (I don't think I am now either)
Then came all the people who had a friend, who knew a cousin that had a neighbor.... They advised and criticized me to death!My Father asked twice if it was really Cancer and were they sure? - His wife felt the need to tell me 3 times that "That's what killed her Sister!"
My own Sister's said people get Lumps all the time!
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Well I guess you will have to decide for yourself whether to be happy that your risk of dying from breast cancer is much lower than many others, or you can worry yourself to death that it is not zero. It probably won't help much to tell you that no matter what you do it is never zero. It will either return or it will not. And that would be the case even if you had chemo.
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It will come back if cells left behind are now sitting like little, ticking, time bombs!
Oncotype is 10 years old... I love Guinea Pigs, but I don't want to be one! -
I feel I was kept in the dark and uninformed. I wasn't asked or consulted with, just checked my scars and asked what Medications I am taking. (Only what they have prescribed)
I am the only person I know that was not given the option of Chemotherapy. I think I should have had a choice! -
Clarrn, I'm British, but ended up in the US 27 years ago (ran away from home to NYC) I was born and raised in Havant, England. I remember the NHS a little. But never needed it for anything serious since I was 4 years old.
I have deep, deep trust issues. It's just my personality to not take any chances... If it ever comes back I will definitely blame not having Chemo. - I have no one at home to support me and 2 friends with BC! I fear leaving my children alone in this country, even though they are almost grown up and my youngest graduates this year!They are all I have and I want to be here for them, they have no family either. My Dad isn't going to be there, my husband ignores or won't talk about my BC. With everyone saying I'll be fine it brings more doubt. I can't relax or let my guard down, remember when I said I needed the NHS when I was 4? My mother gave me 16 fractures!
Anything medical triggers memories, I want to shut this down and never think about it again... I can block some things out. But this is waiting for me everywhere I look! -
kayb - "As you said, you're a layperson here, and don't have the background to understand the science!"
I did not say I was a layperson. I am a Registered Nurse, my Onc background is extensive! - I have not recently worked in Oncology and Oncotype Dx was not used when I graduated.
How can you possibly say I should think of myself as having received the best advice? I don't trust my Doctors -- Period!
They withheld treatment options by not discussing them with me. I did not have a choice, I am angry and don't want to die! I disagree that Chemo would not kill distant cells. Because that is exactly what it does. I'm not into this Hippy, peace, love and organic food movement!
I want to stay alive! - If you were not a layperson you would know that you cannot make an assumption or Nursing Evaluation without first obtaining a full patient history!
I do eat a healthy diet and am very active 'weather permitting'! -
BrigitteB sorry you feel like this, but you know that chemo does not kill cancer STEM cells. It kills others but many people find there are still residual cancer cells after chemo. I have trust issues with doctors too and took second opinion, even had second pathology done at different hospital. So I get where you are coming from but stressing like this will not help your immune function or well being, so how can you come to terms with it? I found BC triggered lots of old medical trauma for me and therapy has helped quite a lot. I hope you find peace soon
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BriggitteB - if you have experience in health care, then you know that as a patient you are your own best advocate. Take control of your care and your medical team. Do your research and make the rest of your health care decisions fully informed with a team you trust. Please consider some form of medication to help your anger and anxiety; many of us here on BCO have used something either for the short or long term. Wishing you peace as you come to terms with all you are going through.
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BB i agree with you and yes most definately you should have had a choice and you should have been told about oncotype testing. Quite frankly (my background is also nursing and weirdly my personal/family story closely resembles yours lol) there is way too much weight being put on the oncotype test and its intrepretation. If you look at the science its just more of the same , we dont even truly know all of the steps or mechanism of metastasis . I have spoken at length to pathologist that specialises in BC and the general feeling amongst them is that its being put on a pedastal.
At the end of the day one has to do what feels right for oneself.. but we need information in order to do that. An example for me was that yes they did oncotype but my tumour was big and i did some research only to find tumours over 5cm or more than one tumour were excluded from the studies that evaluated it. Also these studies were retrospective and while its better then nothing, having research experience, no way im trusting that.
I think we all go through the phases almost like the phase of grief, and sometimes we get stuck and cant move forward. BB you cant change what happened or decisions made we just have to find a way to let go and thats different for everyone and most of us need help to do that.
Take Care
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Sorry that you have such a difficult past. I have a great past with lots of support and I still needed professional counseling. I think you should explore that option. I hope you find what you need. But in my opinion that isn't chemotherapy.
Would you feel more confident if you got second and third opinions or do you just not trust any doctors? Also your statement about the full patient history and assessment is exactly what the doctor was doing by checking the Oncotype. He/She was trying to get the full picture. Due diligence. Your consent was not required because by going to an oncologist they have the right to examine you and Oncotype is part of the assessment.
I am sorry that the Oncotype thing is such a stressor for you. I think you will find only advocates for it here.
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I can't speak for everyone with low oncotypes - but I was not personally offered chemo as an option either. I was told it would be of no benefit and possible harm. My oncologist would not do it. I suppose I don't know what she would have done if I had insisted, but when she said that if they treat 100 women like me, only 2 benefit, I was more than willing to take the chance that I was one of the 98. My BC was caused by radiation I had 20 years ago. I am living the harm that is caused by overtreatment - secondary cancers, hypothyroidism & thyroiditis, skin cancers, heart & lung problems, neuropathy. I know I will spend the rest of my life dealing with cancer(s), but I am in no hurry to get any chemo. Honestly, it does not cause me any stress or anxiety (after so many years you just stop worrying and deal with what happens).
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I know how you feel, I chose chemo. But what they have told me is that chemo only helps when there are actively dividing cells. Anyone who has had cancer may have dormant cells. Chemo will do nothing to wipe those out and they will sit and wait for the opportunity to grow. My own mother had bc and clean nodes at 65. The cancer came back in her lungs 15 years later.
Tamoxifin shrunk them then.
What we need is a real cure, not this horrid chemo that kills us while it cures..
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I have to tell you why i chose chemo. I went to two top cancer hospitals and both told me "no chemo".
Then, I asked one onco, "If you were me, what would you do?" She stopped in her tracks. She thought long and hard. Then she said "I'd do it". That was the deciding opinion. But how revealing!
Still, after my first infusion with T/C I'm considering stopping. This is very very hard!
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I am a little confused. I thought OP had a low Oncotype score of 4 so she did in fact have the test. The issue is not being offered a choice of chemo. I wish I had the choice of no chemo so it's ironic isn't it. Anyway, I do hope you can live without such worry about reoccurrence but that's my worry as well. No matter how hard I try to put it out of my mind, it's always a nagging feeling and it's exacerbated by every ache, pain or unusual feeling. Good luck to you.
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I'm going to repeat what others have said. The oncotype test has been done and can't be undone. Knowing that you are an onc. nurse, it is surprising that your docs were not forthcoming about doing this test. But again, that's water under the bridge. The oncotype test has a pretty good track record. Perfect? Guaranteed? Of course not, nothing is when it comes to bc. You simply have to work with what we've got. As many have commented, stem cells are not touched by chemo, nor are the dormant bc cells. Imaging won't pick up mets until they're at a detectable level. There is simply no way to detect, with reasonable accuracy, those little renegade cells. This would make anyone nervous, but that's reality. Oncotype projects such a tiny, possible, benefit for you that it's hard to understand why you would take the risk. Lastly, your current situation and past trauma could well be helped by counseling and meds, not by putting very, very strong chemicals in to your body, which even then, wouldn't guarantee a recurrence. More does not equate to better. Wishing you the best and hoping you find a way to overcome this and enjoy life to the fullest!
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Cross me off the hippy dippy list too! Eating well ( you don't have to go vegan or raw)and exercising are good for all, cancer or not! Since you are a trained medical professional, why not lean on the data and resources available to you, and your knowledge and background in oncology to clarify the ramifications of chemo?
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one last thought. Having made the choice to skip chemo I am always interested in these discussions. I see that OP says she was not given sufficient options. My onc told me that if my score had been higher she would not have allowed the "option" of no chemo. Her words she would have "hunted me down" and pushed hard. Perhaps OPs doctor didn't even think that there were options -- that chemo was actually not an option and so no need to present it. I think if a doctor has a patient with a bacterial infection they do not present anti biotics as an "option" likewise if it is viral infection anti biotics are not an option as they have no effect on a virus and could do some harm although many patients might wish to have them.
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river horse,
I understand what you're saying but it truly is the case of chemo NOT being an option in all bc situations. Chemo is really not appropriate for all! Such is the case for bacterial infections as well. I often get torn cuticles that become mildly infected. I keep them clean and covered and they resolve in a day or two. Antibiotics would be overkill for that type of infection, just as chemo would be overkill for some types of bc.
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I am someone who did have chemo oncotype 27--- so it was not a hard decision and it was supported by my team. But, if I thought I could have done without it, I would have. I don't have too many lingering effects (some fuzzy brain) but it was hard and I had small children and was working full time--- I don't regret it, but if my oncotype had been a 4 I would have absolutely refused chemo.
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You've gotten some good comments here; I will just add my own.
If you have been recently diagnosed, your anger, fear, stress, anxiety, etc. are at an all time high. EVERYONE that comes here has the same response as you do...what if, what if, what if, what if....
Give yourself time to process this and accept the ugly reality of having had cancer. Then figure out a way to move on. I'm not saying forget about it or dismiss it. Yes, cancer is a scary diagnosis. Letting it run and ruin your life is scarier because you give up great days, months and years where you could be enjoying your life.
If you play the what if game....what if your cancer never comes back and you reach 90 and ALL THOSE YEARS were spent "waiting" for the return. A life wasted. What if...they find a cure in 5 years or a treatment that protects us till we die of something else?
And if you are so terrified that you did not get chemo, you can always ask your doctors to get the treatment...but know that chemo itself can give you different types of cancers.
No one who lives goes unscathed...each of us has "something" to deal with. The goal is not to live "perfectly." The goal is to LIVE.
Enjoy the years you are given. Hope for the best, plan for the worst and then move on.
My oncologist was SURE I would have a low onco score; he planned no chemo for me from the get-go. We were all shocked when I tested intermediate. But remember, the oncotypedx score does not tell you if your cancer could or could not come back; it only indicates if chemo would be beneficial.
And as many of us have posted...there are women with stage O (DCIS) that do drastic treatments and get a recurrence and there are stage IIIs that get minimal treatment and never develop mets.
Cancer is a crapshoot. Many of us here "did all the right things" and assumed we would never be here with a diagnosis....cancer follows no rules. To think you can outwit it or prevent it is setting yourself up for failure.
You pay doctors to be your team and help you. Let them. If you are not ok with them, get a second opinion...then move on.
Don't let cancer define you.
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exbrnxgrl. I guess I wasn't clear. I was trying to say exactly the same thing you said in your post.
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I hadn't had a Mammogram for years (maybe 4 or 5) because my Father-in-Law lived with us. He had Alzheimer's and I took care of everything for him until he passed away in his own bed in our home. I found out my husband was cheating on me and I was diagnosed a couple of months later in September.
I can not get the feeling out of my mind that it had already spread. They had to go back twice to get clear margins... I didn't like a staff member at my Oncologists office. She came talked openly about things that I felt were private in front of other patients and who knows who in the waiting area! I cringed and called her out on it by phone later!
I have struggled with this and felt my life was too much to trust to my team. I can see now how much from the beginning nothing was explained to me. I actually over-heard the word Oncotype. It was just being referred to as 'Pathology' I'm suspiscious and have not felt comfortable with anyone but my plastic surgeon. The Breast Cancer center is very popular where I live and every one speaks very highly of it.The first person I called when I was diagnosed passed away on the 25th, she also went to the same doctors as I did! - Our town had a tragic event at my son's high school the same morning and that has had a terrible effect on my mental status. I've been putting on a brave face and telling everyone that I'm fine when I want to just disapear and cry!
I found out by a phone call at work, went home and my husband didn't even get out of his chair to comfort me. Sorry if this sounds like a Pity Party, but it's all intertwined itself somehow!
Nobody mentions that I had/have BC in my house and my friends don't understand the difference between the subtypes.I want to Survive, I have nightmares about leaving my children.
I'm very scared and sick of being told "You'll be fine, my aunt/neighbor/cousin/friend/mother had that!" and "You can't even tell that's a wig!" - When I'm not wearing one!
I'm no one to bet against, but this is bigger than me and I can't control it... I was really happy and a fun person to be around if you knew me a year ago. -
That happy and fun person is still in there. You just need to sort through all this cancer garbage to find her again. Don't be afraid to reach out for help. Asking for help is not a sign of weakness. It is a sign of strength.
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If you only knew, my FB photos look like someone else!
(Glad that whole "Are you Linda Hogan?" thing has cleared up)
Please add me if you'd like to... BB
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Brigitte,
That is a whole lot of crap to deal with! Does your cancer center have a social worker who can refer you to a psych or therapist? Is there another oncology practice in your area where you might feel more comfortable? Forgive me for saying this, but it sounds as if you have several other issues to come to terms with, beside bc. The bc dx probably sent the whole fragile pile of crap crashing down. As to others not understanding, we have all lamented that. But, if they have no experience with bc, why should they? Until my own dx, I certainly had no idea about bc subtypes or just how variable the disease and the tx could be. You are still there, just overwhelmed by life right now. Help is there and meds too. Don't wait another minute to seek them out. Take care
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I have a question that needs an answer and then I can decide what to do next!
So now that I take Aromasin every day... Is that it? Am I done and just keep taking an AI every day for 5 years?
I had blood work that came back last week with elevated ALT's, but I got the results myself and my Onc hasn't called! (They were only 40, but still elevated)
The lack of information from my Onc's Office stresses me out, so not going back seems like my only option. What's the point? I would never let them put me on medication, that's a band-aide for the real issues that are making me feel this way that need to be addressed.
They had a therapist call me a couple of months ago after I complained abot my reconstruction, she was actually in her car picking her kids up from school! I feel very alone and get upset/tearful. I wake up in the night and vomit... I left a message for my Family Doctor on Friday, but have not hear from them yet either.
I've been making diet changes because of Aromasin weight gain... My body hates the healthy food, no joke, it really does! -
Brigitte,
Different mo's have different protocol for following up with patients. There is no standard. Please speak with your mo and ask him to outline exactly how you will be followed from now on. That being said, have you sought a second opinion or actively sought to change mo's? I don't know what ALT is, but is "only 40" still within normal range?
As for the therapist, there are many out there! Find another one. It is clear that you need support in dealing with this and moving forward. You seem to be seeking some sure fire way to detect/prevent metastasis. Here's the reality; There isn't any. As disturbing as that sounds, it is the absolute truth. You need to get to the point where,doing the best you can to maintain health, you accept that ugly truth and get back to living. Your worries and anxiety are stealing your life from you now, not bc. Find help. Keep pursuing it until you get it!
A healthy diet, balanced and not extreme, benefits everyone. Make changes at a pace you can handle and do allow yourself treats. Again, the goal is to enjoy your life. Coming up with a diet you can happily live with is possible, but be aware that even that is no guarantee of recurrence. So now, I have to ask you, what on earth were you eating before that makes your body hate a healthy diet? What exactly does your healthy diet include that's so upsetting to your body?
Bottom line... We all want to live. We do the best we can to either prevent recurrence , or in my case, keep the beast at bay. There is no absolute way to guarantee that bc won't come back or spread. So, get the help you need because right now, bc is taking your life by stealing your joy. That is one thing you can control. Not alone, but it can be done. I have lived with stage IV for almost 3 years, on Arimidex only. I have never had chemo. I saw a psych and take Effexor. I work at a job I love, travel, enjoy my daughters and granddaughter and try to give bc as little of me as possible. I do think about it everyday, but I refuse to let it steal anymore from me than it has to. Take care.
Caryn
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