CALLING ALL STAGE I SISTERS
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BosumBlues, to answer a few of your questions for me:
I was ER+ 100% / PR+ 57%
Although our Dx is similar, I had a grade 1 rather than a grade 3. Tumor size was 1.1 cm x 0.8 cm x 0.4 cm. I have to honestly say that once all the path reports were final, there was no real discussion from any of my physicians about whether to do chemo or not. I think it was the total collection of information that influenced everyone not to recommend chemo. My Oncotype of 18; highly ER+; relatively small tumor size; grade 1; Ki-67 of 12% (14% is often used as cut-off point for considering chemo); no positive nodes and no isolated tumor cells; clean margins; no LVI; post-menopausal status, etc. all pointed to chemo not being an added benefit for me. If I had been grade 3 I think I might have questioned the doctors about possibly having chemo.
You asked if I worry at this point and what I'm doing to stay healthy: Yes, I do worry at times but not about what treatment route I chose. I worry, like I imagine all of us do, of what if I end up being one of those in the minority percentage who does have a recurrence down the road. I'm trying to accept that there simply aren't any absolutes in the world of cancer. I feel I lived a pretty healthy lifestyle before cancer; but I've upped my game a bit. I used to seriously exercise maybe 3-4 times a week - now it's daily or at least 6 out of 7. I eat no meat other than fish, eat mostly organic, low carbs but a decent amount of the good fats and next to no processed foods. I also bought what I call a "serious" water filter for my drinking water. I don't know how much any of that will influence the future regarding cancer, but figure it's a healthy way to live in general.
Both my MO and RO say to keep doing what I'm doing. They say the two things studies definitely show to help reduce rate of recurrence is exercise and keeping your BMI on the lower end. And my MO throws in his personal opinion on stressing the organic aspect.
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Such a confusing topic. One I've wrestled with since day one.
Warning, I'm going off on a tangent here...some of you that know me won't be surprised! But no one please take offense! It's just that good health or bad health doesn't seem to be the catalyst. Just look around...1000# people? skinny people? organic food, junk food, used to be no eggs, now you can have eggs...only thing I believe is a factor are pesticides. Of course, the use of plastic materials has not helped but I've nuked my share of them! I have a close family member with terminal lung cancer, healthy, non-smoker, very strict in what he eats, all that was so he would never get seriously ill. Didn't help. But, I see another family member that weighs 300 lbs and she's never eaten a healthy item in her life yet, no cancer in her. Heck, she never had a pap on a regular basis and no mammograms until she turned 60. No cancer in our family line yet one of us has cancer and it happens to be me! The other victim is not blood related. He has no cancer in his family either. So, while some of our testing is based on genetics, how reliable can it be? I have no idea, mainly because I'm not a geneticist and I don't think they know for sure themselves. If they did, there would not be a disclaimer on our results.
Which test, which doctor, which opinion and which drug drives us all to the point of not knowing what to believe. What causes one woman to survive indefinitely and another live only a few years, both with the same DX, same treatments, all the same? Now here we stand, still asking the same questions. We have more drugs, more tests but not more answers. Even doctors can't agree, researchers can't agree on the data even though they are looking at the same data. Plus, there isn't enough data on anything. One says chemo, one says rads, one says tamox, one says AIs, one says doesn't matter. Two or three opinions and they can all be different. They don't even know if it's 5 yrs or 10 yrs....that's changing daily now.
So, what's left? Ourselves. Just us. Trying to wander thru this mess with only our DX and our gut feeling to get us through. You can't compare. If you do, you will make it worse trying to figure out if your treatment was the right one or not. A few weeks back, I saw on here where a lady died of BC. According to her bio, she was a Stage 1. All of a sudden, she was so ill from all the complications you could imagine. I became fixated on reading back and back as far as I could go to find out how this could start and it seemed to just happen. Well, that scared the chit out of me. Especially since my MO said it didn't matter if I take an AI or not, my risk was very low. So, what the heck does he know? His partner might have told me to do something else. But, I'm doing what he said. Is he right? I hope so cause if not I'm checking out earlier than I should have to.
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hi I just found out my tumor markers went up and I'm freaking out. Any advice?
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Cmreina, take one step at a time. While breast cancer blood marker tests are promising, they're not absolutely conclusive (http://www.breastcancer.org/symptoms/testing/types/blood_marker). When do you meet with your doctor(s)? What treatment are you currently on? We're here for you!
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mema - It IS confusing and a crap shoot. When I was thinking of not taking the tamoxifen and I told my brother the gynonc it only make a 2% difference, he said "Yeah, but you don't want to be one of those two people." I often wonder if I'd had DCIS if I would still be worried about recurrence. Probably. That is just me. I don't dwell on it though. Heck, in my heart of hearts I really don't think it is coming back. Initially I was terrified to get on thse boards. The sad stories scared the beegeezus out of me. Now I camp out here, a lot. My motto now is to just do the best I can, as long as I can, and try to live a caring and peace-filled life.
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Mema/farmer lucy, I think "crap shoot" is such an appropriate phrase for all of this. Percentages? Every step of the way I was told "there is only a tiny chance" you will (whatever...advance to the next stage in the game...from mammo to biopsy, etc)....well I WAS that tiny percentage. From looking at the above posts I am wondering what my true chance of recurrence is because if it is by cm then mine should only be 1-2%. I think I actually did the math wrong but my mind is fuzzy regarding the oncology appt. I THINK he said 1 in 10 without it and 1 in 20 with it. So that is 10% without Tamox. I have been thinking 20% and 10%......oh well I am just going to take it. Tired of worrying and wondering.
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farmerlucy, yep, I agree. I don't want to be in that percentage, even if it's small. I don't worry as much as each day goes by. I tried staying off the boards too but it's a social outlet for me now. A place to vent, to laugh, to learn and to forget about yourself for awhile. I'm learning to do the best I can, move forward and make decisions that I think are the right ones for my body. I have to live with all the unknown and questions, we all do. I'm sure the pressure is on many researchers because of groups like BCO and women that are organized and making loud noises. For that reason, we should all continue our quest whether it is color based or not (pink groups), it shows our strength in numbers and that's worth me wearing some silly hat or whatever, going to a luncheon to raise funds, or being here to learn about other sites. We all owe that to this disease, to not be quiet, to do anything it takes to beat it, even if we have to do crazy things to make those "experts" work harder. I like we can gather up and say "what the heck?" We need answers. I like that we can challenge our medical teams. It shows that we won't be complacent about our healthcare. Plus, it drives them crazy 'cause most dislike educated patients. And BCO is one tool to help us educate.
Okay, I can stop now. But, I hope you all keep talking to your doctors. Keep the pressure on. farmerlucy, my daughter and family live north of Tulsa. I raised her in Pryor and I lived later in Tulsa, then in OKC until moving to TX. I miss being there sometimes!
Happy, happy Sunday! I should go to church, but here I sit. I'm so badddddd.....
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farmerlucy - Your outlook on life really makes sense to me. While I want to be aware of the statistical percentages, focusing on them daily doesn't make for peaceful days. I especially like your motto:
"to do the best I can, as long as I can, and try to live a caring and peace-filled life."
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Woohoo!!!
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Aw thanks Manu. I stole it and paraphrased it from John Wesley. "Do all the good you can, by all the means you can, in all the places you can, at all times you can, to all the people you can, as long as you ever can."
mema - If you're ever headed to/ from Tulsa from TX I'll treat you to a glass of tea. I'm right on I-35 so of OKC. If today is any indication that tea would be good right now! Hot Hot Hot!
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I like your modern up-dated version better, farmerlucy. It's to the point; shorter; plus I can remember it!
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I think we gotta choose a good doctor and do a little research, be true to ourselves and whatever our gut is telling us is right, and then do it and forget about it and go on living our lives.
I have somewhat changed my diet and definitely changed my exercise routine, but I refuse to let the CANCER be in charge of me. I am slowly separating from my obsession with every twinge and test result. We just gotta suck it up and keep moving forward, whether it is one step at time or like a whirling dervish.
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I agree, Redhead. At least I'm trying to!!!0 -
Yep moving forward is the only choice we have.
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Mema--the one in the 2nd row looks a lot like Eleanor Roosevelt......
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My fellow BC Sisters...I am a few days away from being a 5 year survivor. I lost my account of 5 years ago so had to start over. I had a modified mastectomy followed with chemo. I made so many wonderful friends from this site. I got to meet in person two lovely fellow BC sisters in person which I met here. I have long standing relationships with several other sisters via the net. As a near 5 year survivor I can honestly say this group saved my life! I was down most of the time and this group picked me up and taught me so very much! Hang in their ladies, it does get better! I kept a journal part way through my chemo and I highly recommend writing a daily journal. To this day I have only tried to read it once...but for me its my journey. Sending lots of {{HUGS}} to every person reading this posting.
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Nice to "meet" you Nadine!
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Been following, but not posting.
Nadine, what a nice encouraging post. That was nice of you to take the time to do that.
I am still taking baby steps and in the "what if" stage!
You're right, this forum is a life saver~
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Hi Nadine- I am also just a few days away from calling myself a 5 year survivor. I use the date of my surgery, as I count that as the cancer coming out. I also read here alot but hardly ever post anymore, I am due for my Onc visit tomorrow, breast exam and mammogram coming up soon. I am wondering if after 5 years, no more appointments unless symptoms or lumps appear. Not sure but will find out soon I guess.
I celebrate with you Nadine.
The BCO boards have been a life and sanity saver for us all.
Best wishes for the future
dsgirl
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I'm new here, stumbled upon this site while searching for post surgery answers: how long does it take for the implants to drop after surgery? I have permanent implants, not expanders. The doctor assured me they are much bigger than before (I was barely a
, but right now I feel like they are smaller 😔Suggestions on sleeping? I just got my tubes out 2 days ago, but the move from recliner to bed didn't go as planned. I can sleep about 2-3 hours before I have to get up, stretch, walk, my back is so sore!
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It took several months for my implants to drop. I went the expander route, and like you I slept in the recliner at the mx and the exchange. A few weeks later I moved to the bed with a nest of pillows. My back was sore too from the stretching of my pecs, I put the adhesive self heating muscle ache pads on my back and elsewhere. Muscle stretching is tough stuff. The reconstruction forum is quite active so you may get more answers there. Divecat recently had one-step recon and she could help also.
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Welcome to BCO Kmenditto
The stretching of your pecs and other muscles usually causes back pain and we are sdorry for that but give our best wishes for a good recovery and increased comfort soon. You'll get excellent feedback on here and there is lots of resources to read too.
The Mods
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I stopped taking anti-hormonals 3 weeks ago after 3 years. I just didn't want to deal with them anymore, Buddha belly and hair loss Also didn't show up for surgeon's appt since I am sure these lumps are just cysts. So we'll see how it goes. Am working too hard to fit in an appt anyway. Will have mammo in Aug sometime and let MO know at my appt of my decision. I feel as though with Stage 1 grade 1 no nodes I want to forget about this. My bad. I just want to drive cross country with my tag trailer. Sorry for posting, as I have not been on the boards for a long time . I just had to put my feelings out there after being gone from the boards for sometime, and wonder if any one else feels like this?
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Hi I love flowers. Let's beat this disease
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hi I was told last month I was stage 2 in left breast but going back after surgery told it was stage 1 and lyth nond were clear just have to get over 14days of radiation on the 20th this month hugs xx
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Hello all im new to all this . Was dx in May and had first lumpectomy July 30 and just found out I have to have more surgery due to unclean margins. Have not met MO or RO yet my BS said as of now I dont need chemo. When do you meet your MO and RO? I know I have to have radiation and Tamoxifin. Both scare me a little. I am glad I found this site and am looking forward to making many friends
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Hi Nancy and welcome. Sorry you have to have another surgery. I met my onc a couple weeks after surgery. Tamoxifen is not that bad for me, try not to absorb all the bad things you hear about it and try to judge for yourself. Good luck and see you soon.
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Nancy, I go to a "multi-disciplinary cancer center". They all work together, supposedly, to confer, etc. If you are not sure, don't hesitate to get a second opinion. My BS said she took my surgery results to the "tumor board" (other Drs), before making her recommendation of surgery. I met with my RO and MO shortly after DX, I think. I think it was actually my MO that spoke to me about chemo and RO about rads, not my BS. BS told me what type of surgery she thought would be the best. Sometimes they will do an onco-type and/or mammaprint test regarding chemo, also. Everyone is different and we all react differently to meds, chemo, rads, etc. Just be your own advocate and ask questions, if you are concerned about side effects, etc. It looks like you have the same DX as me! I had an intermediate onco score of 21; MO said it was up to me whether or not to do chemo. Luckily, none of my TX's were really hard on me and very manageable. I am on Tam now and have a few hot flashes, night sweats now and then, but nothing else. Keep us posted. Good luck with your up-coming surgery! Feel free to PM anytime.
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Hello, I am also stage 1, was dx after BMX on July 4th with 2.5 mm IDC. I was wondering how it is that some of us have chemo and some not... my IDC is grade 2, I cannot have any radiation due to past medical history and was offered Tamoxifen as an option not a must... I asked for oncotype test and was told my IDC was to small to do it... how would I know I should have chemo? Not all of us grade 2 have chemo, but for some oncotype comes high indicating chemo, if i cannot have oncotype results how to know?
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ncollet and kimag--welcome. I met my Med. Onc and my Rad Onc before my surgery. My surgeon said Ihad to see M.O. First, then the M.O. said, you have see the Rad Onc. because what if for some reason she feels that you aren't a candidate for Radiation, then you need to change your surgery type. So I did meet with them upfront, because you can bet if I didn't care for them, I'd want to keep shopping.Kimag I don't understand the statement about being too small. My mass was less than 1 cm ( size of a pencil eraser was how MO described it) and I had an Oncotype done. )
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