CALLING ALL STAGE I SISTERS
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Redheaded - That is what I heard from onco, 2.5mm is to small, I saw some with 6mm or so got test I think pencil eraser is like 5-7 mm
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kimag:
I feel the same way you do and I still worry. Again, I was told my tumor at 2.6mm was too small. They need to do the test 3 times. Results would not be accurate. In all the research I have done, small t1a tumors ( less than 5 mm) are not recommended for Onco testing and have excellent prognosis. NCCN guidelines do not recommend chemo for tumors this small - the risks of chemo far outweigh the benefits. I just pray this is so. All the best. Kathy
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I know the reason I had chemo is because my tumor was HER2+even though I am stage 1a grade 2.0 -
Dancermom - they test three times? That is good to know.
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Kathy - thanks, how are you feeling on Tamoxifen? Was your hormonal therapy optional too?
I did call today the company doing Oncotype test and was told they need at least 2mm of invasive tumor, however with such a small tumors when local pathologist is done with his test usually there is not enough material anymore.
I guess we will always wonder if treatment is adequate but it would be so nice to have a support of low Oncotype score still nothing is for sure. It is almost 6 weeks post surgery for me and I can't yet get over it and some how find myself again. It is a process and probably takes time, so far I cannot sleep at night, I would seat and wonder till 3-4 am , I just can't get my self a sleep earlier, I think to much and stress to much and it is not healthy as we all know stress feeds cancer too. I do not want to take more meds, I still struggle with Tamoxifen decision maybe I will finally flip a coin as my MO says he is fine with me doing whatever I decide..
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I do think we always hope that our docs have the right treatment in mind for us. I also worry because I am not having to do chemo right now. But I trust that my docs have things under control and if I need to change something as we go along they will.
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hello ladies,
I just found this site and I'm so happy I did.
I just wanted to know if chemotherapy will stop my periods, or is it normal to have it every month?
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I had the same thought about the oncotest as my IDC was under 2 mm. In my mind, I just have to trust my Dr and the fact that it doesn't seem anyone else with tumor so small had the test. I did start Tamoxifen to give myself the best chance. I understand what you are saying about having peace of mind with a low Onco score, but from my understanding with such a small sample the result would most likely be skewed high. Sigh.
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In large data cases prior to oncotypedx, breast tumors 1 cm and under (node neg)had very good prognosis.....even today, somewhere in the 97% range. Her+ and triple negative and young age were the key factors to increased recurrences. In Europe, the stat went to a little over 98%. I didn't have it. It bothered me but it's all water under the bridge now. I found worry doesn't change anything except steal happiness from your day. I have a couple of friends, same age, have passed on from OTHER things than cancer. It's a crap shoot. One has to reevaluate their lives, their spirituallity etc. acceptance of what life happens and move forward no matter what. If this is too much, one can ask for help and make sure you don't do any journey like this ALONE. XOXOXOXO
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Well said BluePearl!
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I guess In my mind, the smaller the tumor the better off you all probably are.
If your insurance doesn't pay for it, I"d hate to go in the hole and get insignificant sample result. I think it was like a $3800.00 test. My tumors been someplace I've never been-CA! And the people at that lab are so nice and knowledgeable. Its really fascinating what they can do.If you had a sentinel node and it was clean, then I'd follow doctors recommendations.. If you are Estrogen/Proges positive, I'd do the hormone therapy. If t helps prevent a reoccurrence in a distant point (bones, brain, lungs, liver) I'd consider it time well spent. Those aren't things they can cut out of us......I think the sleep issues are just here to stay. I didn't sleep after diagnosis. Then during rads, I kinda got back in the groove. and now with the Arimidex, I am struggling with my sleep again. But I know now its a side effect and not stress over the cancer anymore. I just focus on getting my 2-3 miles walk in every day and trying to eat better and following what I"m told to do. My PCP told me this would just be a notation in my medical file and if yours is smaller than mine, you are in the same boat. Lets be thankful for those powerful new mammograms.
My best to you both!
Red
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Hi everyone and welcome to the new ones. I don't post often BUT with all the postings about size of tumor (Stage) and the OncotypeDX test I had to jump in here. I was Stage I (half still in the duct and half had become invasive). Pathology reports showed that the GRADE was a 3 making it aggressive. That is what prompted my onco to do a Oncotype test. It had nothing to do with the size. The test determined for my onco what my tx plan would be along with the fact I was ER+ PR- and Hers2+. Originally he had hoped I would only need the Herceptin and either Arimadex (which I could not take) or Tamoxifen which is what I am on now. That was not to be because my breast score was excessively high. In the beginning it was explained to me that the Grade is more of a determining factor rather than the size. Just a footnote........my onco is very aggressive about treating BC as his first wife died of BC.
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Hi kmag:
I am on Tamoxifen and was fine at first but an having some issues now, primarily leg pain. I have an appt. with my oncologist on Tuesday and will be discussing then. My concern is that I have read a lot that Tamoxifen does not work as well with PR - even though I am ER+. However, I have been told that is not true since my ER was 81% + and that was a good thing. In Oct. I should be post menopausal and then would want to switch to an AI. I have read that an AI works well with ER+ PR- so I am hopeful. Other than that I feel amazing. Work out every morning now at 5:30 am and have lost 30 pounds. I have finished my breast reconstruction last Thursday and I am so very pleased with my results. I just pray this never returns and things continue to go well.
All the best. Kathy
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Hi Norma, size do matter too at some point - some of us simply cannot have Oncotype test done due to not enough invasive component, the company which does test said they need at least 2 mm to do the test, mine was 2.5 mm and some was used by local pathologist so there is no more 2 mm of IDC in one piece to do the test.
I agree that grade is very important in the decision, with grade 2 being in between is a hard call, I saw people having chemo for grade 2 and some as me are not advised chemo - that is when oncotype comes handy if it can be done.
Dancermom how long are you on Tamoxifen?
I wonder - and this is not to judge -only me thinking about options of treatment, different approaches and our own personal choices
how does it works that many will opt out from chemo if they only have few % cut from risk as chemo has a lot SE but still consider taking Tamoxifen for same or smaller reduction of risk even it does have SE too ? I guess I am much more scared about Tamoxifen, increased risk of uterus cancer and more because it is new for me, I did have chemo in the past and it was not the greatest time in my life but I did ok,
I am more for no to Tamoxifen then yes but I still cannot find a peace , still has not reached the decision I feel I can live with...
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Kimag, I feel for you-----And you need to make a decision soon because you won't have to do rads with the type of surgery you did, correct?
My Mo told me that I had to do the Aromatase Inhibitor (Armidex, Femera, Aromasin) I stressed over the damn pill the entire time I was doing my radiation. He won. I am on Arimidex. He told me that with 12 months of it behind, me, I will only slightly improved my risk reduction. With two years, it goes up a little more. If I get to 3 years, it was like 50% and 5 years, really excellent.
So I started it, and every time I refill it, I think that's another 30 days gone. (already on my 3rd refill) And if it gets to where I can't do anymore, then we will jump to the next drug on the list.
If you start, you can decide to stop at any point, just make sure you understand how much bang you will get for your effort along the way.
If you are on the fence, you can always get a second or even a third opinion. GET YOUR DOUBTS RESOLVED, find someone whose medical opinion you trust or your anxiety will take over. ((HUG))
And try and remember that the people who post about the drugs usually are the ones with side effect issues. A whole lot of silent ones are taking the pills w/o any side effects, or find the side effects tolerable. I bitch about stuff, but it isn't anything I can't live with compared to the cancer coming back.
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Congrats dancermom on the workout/weight loss. Jealous--I've lost 13 lbs but then I get the munchies about once a month (must be building up week to week) and I gain and have to re=lose. I'm walking 2 miles most days and a friend wants me to do a Ti CHi? Class???? I know I didn't spell it right.
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Redheaded - thank you a lot for you insight, I may ask for 2nd opinion.
I hear a lot that I can start it and just stop it feeling bad I guess what I am afraid are long term effects that won't be seen right away but after few years. I had radiation in the past and 18 years later developed BC radiation induced at the time of radiation I felt great. I Now the cancer I had in the past is not treated with such high radiation or even no radiation at all as the docs learned more about long term side effects and real risk for secondary issues. I do not want my BC back and would do what I can but I do not want another treatment induced cancer or serious health issues too
I know we always hear more about bad stuff, bad experience as happy people rarely post, most of my info and fears come from medical article or stats of SE after given trial. So I am torn a part, maybe a part of it is that I am still in kind of shock that I got another cancer, after one battle with cancer 18 years ago I though I fight my part in life and now can forget about it, silly me...I always wanted to practice Thai Chi, it also calms down, works on anxiety - never had chance so now thinking about it more seriously.
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Hi Dancermom, curious, how do you know that you will be post menopause by a certain date? I have never heard of anyone knowing when that was going to happen...? if I begin Tamoxifen - it seems it will put me in phase like menopause but no one explained exactly what it means once you take it... I have concerns about it - anyways love to hear how you know your date0 -
I too am Curious.
My RO was floored I had the date of my last period for her, (2006) then she realized I had a surgical lmenopause and she cracked up when I told her it was the only day my period had ever been early,and it started the morning of my surgery just before I left for the hospital at 6 a.m.
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Hi Sparkle:
Once I go without my period for a full year I an considered post menopausal. My last period was a very light one and it was in Oct. of 2013. Prior to that I did not have a period for 4 months. When they did my blood work in January when I was diagnosed, the blood work indicated that I was post menopausal but they will not consider you that until you go one full year without a period. This is what all my doctors have told me.
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Also, I am 54 years old.
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Dancermom...i was 1 month shy of being 54 when i was Dx
My last period was July 2004 and i was told the same thing and was treated aggressively
was diagnosed April 8 2005
welcome to all new sisters
♥
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Dancermom thank you for explaining that - no one told me so know make sense. Redhead - if your last period was in 2006 - did you have cancer in 2006 and again in 2014? what surgery did you have in 2006?I had strange things happen - I had my regular period the week before my surgery - sort of why I decided to pick the following week for my MX, but two days after surgery (8 days after had my period) - I got it again - heavy, nurse said that can happen post surgery as the hormones all operated on in MX and all the shock to body - they get confused,, and had it for 5 days while was feeling like hell - and then it stopped and 8 days later, again I got it HEAVY for 4/5 days and then it waited 19 days to return and now it is almost 26 days and not gotten it again yet - but haven't started any Tamoxifen - just been really anxious, having bad insomnia and worry over thinking about this whole cancer situation and how can convince myself that trying Tamoxifen is a good idea... still on the fence on that decision and my focus now is to try to sleep, take the Zoloft again, and try to handle the pain associated with reconstruction and all that goes along with all the rest...
I do appreciate hearing if anyone began Tamoxifen and had some side effects that WENT AWAY after a while and how long took before SEs subsided (I hear lots women get nauseus and vomit or have stomach problems - the other way (runs), is that true???
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Sparkle - I had the nausea the first week, and then it went away. Consider effexor as well as it reduced the hot flashes, helped me sleep, and evens out the emotions. Tamoxifen is the main tool in our arsenal. I hated the thought of taking it, but when I saw it was often the first line of defense for those with stage iv I knew I needed to take it.
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Sparkle--I had bad fibroids so I had a hysterectomy in 2006 to take care of that. They said my uterus was comparable to a 4 month pregnancy. I had had a Myomectomy (just removal of fibroids) in 1996, but 10 years later I decided to just rid myself of the parts I wasn't using). Totally unrelated to my breast cancer--everything was biopsied to make sure, as my GYN was very particular. I am 57.0 -
Kimag---sorry you are having the dreaded C a second time. Things have changed a lot and I would suspect for the better. I have a dear friend who had breast cancer in the early 90's. BRACA gene testing wasn't done. She has it again, they have tested her and she is positive. But she has the most positive outlook about kicking it a second time, and she keeps saying she can't get over how much better it is now compared to what she remembers from her her first go around. I used to have 5 rules, but I can only think of 3 right now.
1. Always do what YOU think is right---if you don't and something goes haywire, you will never quit blaming yourself.
2. Always a set a place for the unexpected guest---you don't plan on a lot things, but there is joy to be had in them. ex: the late life baby, the friends you meet you wouldn't have w/o the cancer, etc.
3. A good time to laugh is anytime you can.
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I will chime in as a "silent one" on tamoxifen. I've taken it since the beginning of Jan 2014. I am 47 years old - no signs of menopause at the time. I don't feel any different since being on it. My periods have been as regular as clockwork ... in fact, the only thing I may have noticed was a slight decrease in appetite (but that may have been wishful thinking : ) ... no weight gain, bone pain, hot flashes - nothing out of the ordinary.
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Same here Piano girl. I am still waiting until after the exchange next week to go back on it to see if depression MAY have been a side effect for me. So hard to say if I was down because of the whole cancer things or if it was the med. We shall see. My mood has been better during the week I have been off but maybe that's because I am about to have the exchange.
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I started Tamoxifen in March, Rads in Late March. Onc Dx score 7. Only side effects to Tamox has been hot flashes due to "instant Menopause". Some sleep disruption due to hot flashes. Although the doc thanks I could have a few more periods. ( Hope not!) I had some rough days of fatigue at end of Rad. Battlleing the bit where my mind thinks I am100% but then my body reminds me I am only 3 months out of rads. Getting back into exercise is for me, harder than I thought. Less heat tolerance, higher resting heart rate, mean I have to take things slower than I want. Glad the ladies here are taking care of themselves and staying informed!
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Having a lot of pain today from my SNB site and on my left side and straight across my left breast. I am swollen today too. I am 3 weeks post op and have to have a re-excision. Does the pain ever stop?
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