No chemo then chemo?
Oh boy, I am just starting to discover that every knew piece of information is nothing but a fast ball of stress, My oncologist switched my appt from the 31st to the 11th. I had my first meeting on Jan 23rd with a "stand in " oncologist that stated with the size of my tumor and the er+pr+ her- status then chemotherapy will not be in the cards. I leapt for joy when she told me this news. I also stated that I wanted the oncotype dx done. She looked as me and said I might want to leave well enough alone. I could clearly see her point but I also feel the test will give me more insight on how to live my life. Since my BC I have been living a far healthier lifestyle. It was pretty good before but I have still stepped it up a lot.
I am wondering why did they move up the appt. The March 11th date will be exactly 11 weeks since my surgery ( chemo can be done up to 12 weeks after surgery ) I am so scared that the oncotype test can back in the high numbers and now I must revisit the chemo question. I read so much into every little thing that happens!! The upside is they only scheduled me 30 minutes with the oncologist. I am thinking 30 minutes is not long enough to tell someone they need to start chemo ASAP.
Man I am getting my panties in a twist over this,
Comments
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Hi Timerdog. I know its hard to do, but dont read too much into it. And if you're anxious just call your Oncos office, They'd rather you call them than worry yourself until the 11th. Do you know when the tissue sample was sent in for the Oncodx test.? You can call their customer service number and they'll tell you if the tumor is finished being typed yet.
Good luck - hope everything turns out fine.
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I wouldn't read much into it either. Chances are they always wanted to see you sooner than later. Someone might have cancelled and now there is an opening. Your onc might now be out of town on the 31st. The results of the oncodx test came in early so they can have you in early.
I also look at it as you can get nothing but good news. Either the oncodx tests says you don't need chemo or thank goodness you got the oncodx because it says you should do chemo… much better to do chemo than have mets in the future and regretting no chemo.
But I hope you don't have to do chemo. Good luck and keep us updated.
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I did run into my family Dr. at the grocery store. She came up to me and asked how I was doing. She is really an amazing woman. I told her I wasn't sleeping and was having horrible anxiety of this appt. change ( if you really think about it what is the big deal? ). She said to call the office on Monday and we shall see if they have the Oncotype results. At least that way I will not have to wait until Friday.
Bevin, I had the test ordered on Jan 23rd, I know the results take 10 days to two weeks in the States. Not sure how long the results take in Canada.
Lago, I am not sure I believe in Chemo for my size of cancer and the stage. If I had had a larger tumor and more aggressive stage then yes, but I am really on the fence and if the test score if in a grey area I am pretty sure I will be declining chemo.
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Hi Timerdog- I think we can all agree that this bc journey gives new meaning to the term "ups and downs" when it comes to one's emotional state. I'm sorry to hear that your "stress meter" is currently in overdrive and certainly understand why that is!
When I first read your post, I was certain that I'd see either your HER2 status as positive OR not yet determined. A large majority of the time when the early stats come in for Stage Oner's told chemo not likely, a positive HER2 determination made later reverses that decision and suddenly you go crashing into the chemo world. That was my experience.
However, it doesn't seem to be yours. I know the medical world is different in Canada but I admit to being really surprised at your Onc's comment to "leave well enough alone" and forgo the Oncotype test. Then it occurred to me that from what she has seen of your particular cancer, she already knows you would score low? I can't imagine that she would say that if she thought there was a possibility you would test high enough for chemo to be considered. Like you, I would want the test anyway. A surprisingly high test score does happen to us early stagers. It's not common though and doesn't seem likely from the information you've posted.
So when all that anxiety talk is ruling your head, keep that in mind. If I've learned anything in this experience, it's the universal truth that stressing over the unknown only makes life more difficult for me. It's difficult enough under these circumstances so I really work on accepting that "it is what it is" and saving energy until I DO know what it is. Does that make any sense? Notice I said that I WORK on that? It's been a constant process and sometimes I do better than others.
Your stats put you in an enviable position in terms of prognosis. My guess is that there are thousands of bc women out there willing to switch places. The odds are in your favor that your appt. was pushed up for reasons totally unrelated to you. Know that on the off chance something has changed the no chemo determination, you WILL get through it. And you will find all the support you need right here.
Wishing you a positive outcome and all the best as your journey continues. Please update?
Ellen
Edited for spelling- duh
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Timerdog, just some other information for you. I think the cancer community is at the precipice of changing its thinking on stage. This is why you hear about "gentle giants" and "tiny warriors". Size doesn't always matter. What the oncotype is doing is telling us which tumors have a high likelihood of return. If you don't buy into the Oncotype rationale, it's not much use in having it done in the first place. Many doctors feel that it is replacing the staging for determiniation on treatment for ER+ patients. Tailor X trial will give us more results soon.
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timerdog I don't know if chemo is the right thing either for your size/stage/biology. My gut says ER/PR+, grade 1, small tumor, no HER2+ you are right. Hormone suppression might be the best risk/results for you.
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Timerdog, Perhaps your doctor has another appt on that day and needed to reschedule because of their schedule. Hopefully, that is the case. I am similar to your dx, however, I am grade 2. I asked for an oncotype test and was told it was not needed (by my onc surgeon). I have an appt. with an onc dr., so I will see if he would suggest differently. Otherwise, I will praise the Lord that chemo is not a treatment that will be of benefit to me. Hope all goes well for you.
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Just to add: grade isn't any longer a sure definitive. Different subsets seem to exist within the grades, and it's not as simple as "grade 1 doesn't respond to chemo" anymore. At least that is my understanding from my oncologist. We are incredibly lucky to have Oncotype to help us make further determinations.
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Thank you for all the replies.
Lago, I have followed your post a lot and I am always impressed by your compassion and knowledge, especially about tumors. I was led to believe that my tumor was 5 cm and was scared, no terrified and reading your post always seemed to help. If she can do it so can I!
I was relieved to find out that the tumor was actually very small. I even asked the oncologist, "are you sure"? when she told me the news. LOL
REKoz;
Your post made me cry, I really really needed to hear the words you wrote! Stressing out over the unknown is an art I have to learn and manage! I will keep those words in mind over the course of the next few days and try to be happy. My seven year old daughter leaves for Victoria BC to see her Dad on Wednesday so I plan to be upbeat as I will not see her for ten days.
Not sure if I mentioned but I am lucky enough to live in the only province in Canada where the Oncotype DX is covered by the universal health care system. The rest of Canada does not readily order the test unless the patient pushes for it and is willing to pay either by private insurance or out of pocket.
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Thanks timerdog. This site has helped me so I'm just paying it forward. Prior to my surgery I was so scared. After surgery I calmed down. Of course I always assumed I would have chemo based on the size and biology of my tumor even before I spoke with the onc. I never did have to stress about the decision because in my mind it was a no-brainer for my case.
*Remember I am no MD. I have read quite a bit and ask questions but your doctors are the ones with the expertise. I use this site for the basis of my questions and not for the answers.
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timer
hang in there-- these are indeed the hardest days-the time between the surgery and the decisions about treatment. It can drive a sane person wild-but now is really the time to get all the tests you need to be sure that when you are making the decision (and you will be the one making it) about chemo, you are making it with all the available information possible.
I am always preparing for the worst case scenario--- then I work myself backwards.... drives my h crazy, but it works for me. As I waited for the oncotype results I looked into wigs, found out about different chemos--but I was still crazy as a bedbug waiting...
My onc and surgeon both thought it would only be lumpectomy and radiation and hormonal therapies---but my oncotype was in the intermediate range, which meant I had to make a decision. I was pre-meno and have young children, so I did it.....
I hope you don't have to--- size used to be the determinating factor, but I think now they look at so much more.....my onc even told me that size was not what would push her in the direction of chemo--it is really the characteristics of the tumor.....
I know it is hard to wait--- bring someone with you to this appointment--- maybe have a digitial voice recorder.... you don't have to decide anything immediately, you just need to get the info and the dr. advice..... then you can take some time to think about it.
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As it turns out I am the victim of a really crappy medical hospital. The pathology that gave me the diagnoses of NO CHEMO was WRONG!!! I do not have a less then one cm tumor I have a 2 cm tumor and my Oncotype test is a 27. So I start chemo next week. The kicker is I ordered the Oncotype test!!! Me!! If I had not ordered it this little ( sarcasm ) mishap may have never been discovered! Not only am I consumed by fear and anxiety I am angry! I know that in a way I do feel grateful that I am intelligent enough to take my disease and do my own research but....I am no MD!!
I am off to the March Chemo lounge now to add my name to the list.
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