Petrified
I am going to see my oncologist today for my final pathology report. I am scared. I am afraid she is going to tell me I have to do chemo. I am afraid she is going to tell me I have to do an axillary lymph node dissection (1 out of 3 tested positive on sentinel). I am afraid the grade had changed from 1 to higher. And God only knows what else. I am just flat out scared. I feel like I am being sentenced for something I didn't do.
Nancy
I know, I know - take a deep breath. It's not working.
Comments
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Nancy, just keep positive as much as possible. It will be what it will be as much as we wish for other diagnosis. I pray that it stays low grade and you don't have to have chemo, but if you do, you will get through it! So many wonderful women here were just as scared until getting their treatment plan in place and made it through with flying colors. BC stinks...no doubt about it. We hope you get good news.
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Nancy - You can do this. One step at a time. We're right there with you.
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Nancy 2581,
I know exactly how you feel Nancy it is really frightening at first when you learn about the diagnosis. But believe or not you will be okay with what you learn from the oncologist. Chemo is not as it was many years ago. I had 4 months every other week of very strong chemo and I did really well. I drank tons of water , took all the medicine they suggested, and ate small meals all the time to get the protein my body needed. Best of luck with your meeting.
Karen
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Hi Nancy2581
How are you doing today? How was your meeting with the MO?
Hoping you have a plan of action and are feeling a bit less stressed.
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Hi Nancy -
If it helps, my final path report staged me much lower than the initial biopsy. Tumor grade did not change. Hang in there!
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Hi Nancy
Hope you've had good news..........but if not........don't worry too much!
My Dx changed after my surgery & biopsy.......was told I wouldn't need chemo etc.......but that changed........Scared stiff doesn't cover it........I was petrified......
But.........I'm here over 6 years on and doing very well.........thank you.
It's a scary time..........no doubt........very scary...........but whatever treatment they recommend.........just get your head down.......get on with it & you'll soon be out the other side.........
xx
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HI ladies - thanks for checking in. I was a mess for that pathology report. And that dreadful positive lymph node bought my ticket to chemo. I will be starting July 22nd. As I mentioned in another thread I still have to do a PET/CT scan and an echo. Scared they are going to find something else wrong with me and then I will literally fold. This cancer thing really messes up your mind - ugh.
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Sorry you have to go through this. It just stinks! Chemo is not fun but it was doable. I had no nausea at all. I was able to exercise all through chemo. I had down days when I was tired but it was very doable. I hope you are just as lucky. Since I used cold caps to keep my hair, no one knew I was going through chemo unless I told them. I would run into people and that didn't know and they never noticed anything because I was still exercising and looking like myself. Hang in there! Hugs!!! -
Nancy -- your anxiety is totally understandable -- I felt like I was holding my breath from the time of the first biopsy until I got my final treatment plan. Even though we "know" that the odds are on our side, it is a tough slog. Be kind to yourself during this waiting period -- see if you can spend more time with others, get outside, do things you like, etc.Ridley
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sorry nancy - that really sucks. The curveballs that get thrown at us can bring us to our knees. I do like the quote I've seen here about "we never know how strong we are until strong is the only choice we have" of course you don't have to be strong. In fact IMHO a good meltdown is quite therapeutic . Thanks for updating us. I hope you can find some things this weekend that take your mind off this crap. Hugs.
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Nancy did your MO order an Onco Type Dx for you to see how
beneficial chemo would be? I would ask to have this done before starting chemo. Best of luck to you sweetie.
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Nancy
Sorry to hear about the chemo but I am sure you will do really well. If you have any questions don't hesitate to ask. There is a lot of experience on these boards
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She wouldn't do the oncotype dx test. She said if I were postmenopausal she would have done it hands down even with the one positive lymph node, but because I am premenopausal she said that that phase of the test is in the trial phase. She said she could put me in the trial, but then if it turned out to not be an accurate test when you are premenopausal then I would have missed my chance to do all that I could to kill the cancer. Here's a link that says the same thing http://ww5.komen.org/BreastCancer/OncotypeDX.html
I am okay with it I guess. I do want to feel I've done all that I could to kill off any cancer cells. My only concern is that my cancer once again came back grade 1 (at least that didn't change sheesh) which is a slow growing non aggressive (although I don't believe that either since it found it's way to my lymph node)cancer. How well does chemo battle grade 1 cancer cells? Anybody have any thoughts on that?
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nancy,
I would seek a second opinion. Onco type DX is not just for post menopausal women. I've never heard of if. But it's only for ER pr positive BC.
I read there's a lady had one positive node with low onco score so her MO didn't recommend chemo.
Your MO should not have just brushed you off like that.
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Nancy...it seems you have a lot of confidence in your MO. And while the OncotypeDX test has not been as strictly validated for your personal situation, it still can give you some important info that can tell you more about how your cancer cells behave. As you have mentioned, your tumor is Grade1. You also tell us you have concerns about your cancer behaving more slowly. And you are aware that chemo works better on faster growing cancers. Of course, being premenopausal and having a tumor that is estrogen fueled is an important issue that needs to be addressed. Recent studies have suggested that having a node positive, may not be so important if you are highly ER positive and have a low KI 67 score in addition to that Grade 1 classification. So what does this all mean? GET THE ONCOTYPEDX SCORE! It can give you potentially more information about how to treat your tumor. Although I wasn't node positive, I was Grade 1 and premenopausal AND with my rare type of tumor, the OncotypeDX was not strongly validated for my type of cancer too! But the info gave me and my MO more info to guide my treatment. Recall I told you on another thread to read about ovarian suppression and the SOFT and TEXT trials as well as the RxPonder trial. While none of the trials have concluded, you should discuss all of this info with your doctor. Furthermore, there are newer trials using newer chemo. I recall my doctor telling me if I decided that chemo was what I wanted, then he would have discussed with me "lighter" chemo BECAUSE MY TUMOR WAS GRADE 1.
It just seems to me that without the benefit of knowing what your OncotypeDX score might be, you are dismissing potentially valuable info. That said, if you trust your MO and are comfortable, then that is okay. I just think that if your insurance will pay for the test, then why not have it done? Knowledge is power.
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nancy.... Here is another scenario...let's say you complete chemo and then a few months later, your period returns. Premenopausal women can now be given the choice of 5 or 10 years of Tamoxifen based on the Atlas study. However, without the results of the OncotypeDX test, you will not have that piece of info to guide your future treatment. Furthermore, a new study was unveiled at the most recent ASCO meeting and it tells us that with O\S, patients that are premenopausal can take an AI instead of Tamoxifen. Results aren't known yet if the AI will increase survival...but early evidence tells us that AI is superior to Tamoxifen for postmenopausal women.
Now, if you are at a higher risk of recurrence and are over 40, you may also be a candidate for several bone building infusions with Zometa which also might help reduce risk of recurrence.
So, getting the OncotypeDX test will give you more info for deciding how aggressive you might wish to be for future treatment.
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I was premenopausal and my MO ordered the oncotype test. I don't know why that is an issue. I was told however that tamoxifen for ER/PR positive grade 1 tumors is the best defense. -
hello sweetie, once you know all and all is in place things do get better,I am sending hugs your way, HUGS!!!!!!!!!!!!!!!!!!!!!!! this too shall pass you will get through, take it from a 20 yr Survivor(Praise GOD), we are here for you, and know what your going thru. msphil(idc, stage 2, 0/3 nodes, L mast, chemo and rads and 5 yrs on tamoxifen) P S and diagnosises while making wedding plans.
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I'm okay with it. My sister in law was with me when the doctor was explaining grade 1 tumors and chemotherapy. I must have temporarily zoned out because I do remember bringing it up, but not a damn thing she said after that. My sister in law did and explained it to me the way the oncologist did. My tumor also had LVI (little bastard) and there was a 2.8mm tumor in that one lymph node. I've just decided I want to do all that I can to hopefully never have to do this again.
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Nancy....I understand you are doing chemo. That's fine. However, once you are finished with chemo,there are more decisions that will have to be made based on the aggressiveness of your tumor AND the findings of additional studies. While you are receiving chemo, your physician can still request that the OncotypeDX test be done. And if your insurance company pays for it, then absolutely have the test done. It will give you and your physician important information going forward.
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I didn't have the Oncotype test and I didn't insist on having it done because it wouldn't have changed much in the recommended treatment plan. When I asked about Oncotype my MO told me that considering my relatively young age - I was 54 at the time of diagnosis - and good overall health she would recommend aggressive treatment no matter the Oncotype score. I agreed with her approach. So I am curious about what additional decisions after chemo this test may matter for if the patient is relatively young and healthy. Such a patient should probably do hormonal treatment if indicated whether the test score is low or high. What kind of info will it add to the picture that may alter treatment decisions after chemo?
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Muska, this is pretty much what my onco said to me as well. I am 51 and according to them healthy. They seem to think I have a lot of years ahead of me and want to treat aggressively. Hope I come out of it feeling as healthy as I do now. I'm pretty sure my onco didn't order the test for the same reason as you.
Voraciousreader's post up above may answer some of your questions.
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muska, based on your signature, you would NOT be a candidate for the Oncotype DX test. When I was diagnosed, I was 53, premenopausal and healthy. For patients, premenopausal, HER 2 NEGATIVE patients, with slow growing Stage 1 and Stage 2 tumors, there are a number of studies unfolding which should help guide future treatment. What needs to be discussed is 5 or 10 years of hormonal treatment as well as Zometa infusions. Still premenopausal? Adding ovarian suppression. Knowing your OncotypeDX score SHOULD give ONE MORE PIECE OF INFO ADDED INTO THE EQUATION AS TO HOW AGGRESSIVE ONE NEEDS TO BE WITH FUTURE TREATMENT.
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Nancy,
My situation was similar to yours - I was 39 at diagnosis, they found 1 positive node (had 18 removed and 1 had 2.5 mm of cancer) and my doc (at Sloan Kettering) would not do the Onctotype test. My grade was 2.
She explained it to me as "that test tells us the likelihood of recurrance within 10 years, I am interested in much longer than 10 years for you!" which of course was music to my ears. So I didn't push for the test and actually ended up glad I hadn't had it - I think if I knew that my score was low I would have had a harder time just getting through chemo and if it had been high I would be worrying even more than I already do about it coming back.
Regarding chemo - you WILL make it through. I did 4 rounds of A/C every 2 weeks and then 4 rounds of Taxol every 2 weeks. I would say for the most part I felt crappy for 1 week and then felt roughly 'normal' for a week before doing it over again. A/C was harder than taxol for me and the biggest issues were insomnia and constipation. And the steroids make you feel yucky. I would take all of the medicine they tell you to take, insist on sleeping aids if necessary and remember that you will recover.
When I started taxol I was so relieved not to have any more issues with my stomach that the numbness in my feet and the general tiredness felt very manageable.
Losing your hair is no picnic (I still sometimes think to myself, I can't believe I was BALD!) and it seems like it will never happen but it does come back.
Just take things one day at a time. I felt much better when I ate enough (for me it was like pregnancy, if I didn't eat I felt much worse) and I made myself take a few mile walk most days.
Hang in there!
Rose
PS After chemo I did also end up doing radiation. I remember being really upset because I was led to believe I wouldn't need it after a mastectomy and I think the emotional part of extending treatment really got to me. But that was VERY doable. In case you end up needing to do that as well!
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voraciousreader, I am not a statistician but it seems to me that we have a lot of information nowadays that we don't know what to do about. How reliable is Oncotype test to base future treatment decisions on? Speaking of aggressiveness is grade a better or a worse indicator than Oncotype test? Our starting points were not very different: you were 53 and I was 54, also premenopausal, healthy and HER 2 negative. "Slow growing" is hard to define because nobody knows for sure how slow or not slow it is/will be in each individual case. Too many factors to take into account and again, it all comes down to statistics that are just statistics, i.e. not individualized prognosis.
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muska...OncotypeDX gives you information beyond statistics. In fact, genomics are giving all of us more personal info that should lead to more individualized treatments.
According to Eric Topol, MD, he describes in his book, The Creative Destruction of Medicine, a future where clinical trials will be faster and less costly and give us way more info to make more informed treatment decisions thanks to genomics.
Without a doubt, ALL OF US want a treatment plan that ensures that we all live long with the best quality of life. Adding the info from the genetic tests is simply one more tool to help give us and our physicians helpful information to get there.
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Muska...and with respect to grade, according to the data that the OncotypeDX gives us, there are some Grade 1 tumors with high OncotypeDX and some Grade 3 tumors with low scores. The best scenario is when the the info from the general grading system matches up with the genetic tests. Make no mistake though, ALL of the info is important!
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voraciousreader, breastcancer.org has a good overview of the Oncotype DX test that everyone can understand. The test calculates the risk of recurrence, i.e. quantifies the likelihood of the cancer returning based on analysis of 21 genes that today's science knows about: Oncotype DX. Someone mentioned earlier the prognostic value of this test extends no more than 10 years. As you said, this is just one more algorithm.
I hope that some day, genomics will lead to individualized cancer treatments available to all cancer patients but until then I think we have to rely on our oncologists' experience and recommendations more than on any test.
Speaking of the grade example, what would you do with all that info if grade were much different from oncotype? which one would you trust more and base your future treatment decision upon? Looks like Russian roulette to me no matter what.
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muska...first off, I would find a doctor whose judgment I trust. If that means going to two or three doctors, or, starting with one and then moving on to another, then so be it. You ask, what would I do if there is a collision between one tool and another? Well, I would ask for additional pathology testing. If there still was an issue,then I would ask for a tumor board recommendation. As I have said, one should have as much info about a tumor's characteristics before choosing a treatment. Furthermore, we are going to see more studies unvailed using genetic perimeters which will likely effect future treatment. Whether we want to know or not the genetic makeup of our tumors, it will probably not personally matter much to any of us, because it will be routinely done like the Scarf Bloom Richardson and Nottingham tests are done today. There was a time not long ago when cancer was just cancer. Then there was the creation of grading, followed by estrogen make up, followed by HER 2, luminals and now genomics. Its a process of gaining insight into the behavior of a tumor. It really would be a more perfect world if all of the info garnered from all of these tests lined up perfectly, making it simpler to make treatment decisions. That said, I find it surprising that a physician wouldn't encourage using whatever tests that are available especially if the insurance will pay for it.
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My pathology was deemed to be grade 2, my Oncotype was 3. Three independent docs told me that Oncotype trumps grade - no doubt. One doc who is a renown cancer researcher said that some believe Oncotype trumps size, but most doc aren't willing to go there. He also said grade is outdated and subjective to the pathologist. I really wish I'd had a second opinion on grade. There is a chart on the genomic health site that graphs grade calls from local pathologists vs those at large institution for the same sample. Local pathologists appear more conservative with grade calls.
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