CALLING ALL STAGE I SISTERS
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I had oncotype done on both of my tumors. The larger (11 mm), lower grade was 14 and would have had no chemo. The smaller (7 mm) was grade three and Oncotype 42. That required chemo even though so small. Getting your score is an excellent guidepost and your MO can help you understand. It's great progress to not overtreat with chemo.
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Hope everyone in the path of the storm is ok. Also hope tx is not interupted or at least not for long. Much love.
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Concerned about my sisters in the path of Sandy....
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As am I Val
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I am worried too...was talking with her on facebook then nothing -anybody hears from Sheila please give a shoutout and here is hoping everyone on the east coast is safe
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i am a perfectly odd example of too many scans in my opinion...I was grateful the first go round- having all the scans thrown at my stage 1 for a baseline...BUT..here I am having been given a chest ct as result of some discussion that suggests a LOWdose ct may be called for in long termsmoker....onc pushes it pushes it...I say, well, ok, the low dose spiral ct like some are saying...i go it is a full bore with contrast ct..I am furious call the doc from there and she says oh no, we must YOU DON"T WANT US TO MISS ANYTHING...so i do it and I am unhappy and scared...i call to get results after alternately freaking and being angry...she tells me bloodwork is fine ct was fine..i ask them to upload results...something still feels odd about the whole thing...she mistakenly included her order along with results...it said patient was complaining of severe shortness of breath! BS BS BS BS BS...she or a friend has interst in said imaging center and it was a way to get insurance to pay for massive ct scan...so i was pissed and will no longer see this crackpot who congratualted me on my AI working since estrogen so low to which I informed her for 99th time I am not on AIs and I take nutritionals to mimic AIs-she is a tool
So, that would be ok...i was not happy with extra radiation but ok...so I go to breast doc for my 6 mos ultrasound and breast exam...all looked fine but she was very worried about my hernia(s)...so I go see my plastic doc (whom I love beyond compare)- he is a general surgeon as well reconstructive, etc...anyway he freaks over the hernia and orders a abdominal ct scan...which I needed because it was all confusing in there and nobody wanted to open me up without seeing inside (my hernia popped on top where men's usually present) along with umbelical hernia...anyway...i tell him I had chest ct full scan three weeks before and he is angry over uncessary radiation...so here I am in a position of needing a CT scan after having a bogus one. It is evil. Now i see him on Friday to discuss surgery...so many women can't get adequate testing and then those with great insurance canbe abused. I have had to let fear of what may have been cooked with all that stuff and the sad thing is I could not even enjoy getting a two year "you are doing great NED" since I was freaking over all this other crap.
ARGH
sorry, had to vent.my point is...i think many are undertreated and many are overtreated. ACK
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You sure you have a right to be upset, annette!
This month beiong OCT . a LOT has come out about over tx of certain BC.
Nobody would say I was overtreated (* Lx/ No rads. no als etc ) BUT I wish I had never had the LX! With my early stage BC and the fact I didnt end up doing rads anyhow, I think these " great mammos" that show everything so early worked against me.Now, I have lymphedema - which never shows as " NED".
My best guess is that with my other illnesses, if I had left this sucker alone , something else would have killed me and this would have shown in the autopsy. I will always believe this. In fact, the LX may have caused seeding. I know the SNB caused LE.
I had 2 chest x rays the yr I was dx with BC. Why ? Just give me the anti Bs WITHJOUT the damn chest x rays ! Two in 2 months- ridiculous!!!
There are too many tests and too much over-tx today. There is NO proof it has helped, and we are still walking for the cure !
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ah, i hear you. it is confusing and scary and nobody can agree on anything. The cure is often worse than the BC. I do not regret my BMX in any way shape or form. It was my choice and I Insisted on it. Personal decision to be made. It is all the rest of the bs that flies around and it ticks me that people who really need MORE help cannot get it. It is wrong. Too many people playing God. I would never post as an authority on anything except my own self. All we can do is share what we know, study a lot and make our own conclusions. Because nobody is always exactly right. BC, like most cancers, is too varied and particular to each individual. What is right for one is wrong for another with the exact same diagnosis, stage, grade, etc. Because we each have different dna, blah blah.
The so-called onc had suggested the following scenario...try every approved AI (including those often prescribed that are not recommended) until I could stand side effects and she would then prescribe Bonita (or whatever it is for your bones) and toss in some ativan and an anitdepressant to offset the chaos...and ehatever else I may land up needing as a result of side effects. Really? So I stick with my routine and only kept the ativan -I only take .25 mg once on really amped days....to which she said that is not even atherapeutic dose...I explained any more than that makes me sleepy and she told me my body would adjust and get used to it hahahaha...
oh well...again, I stress, this is what MY plan is nobody elses. Not fond of telling people what the MUST or SHOULD do. It is irrational and dangerous.
Everyone have a great day:)
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Not fond of telling people what the MUST or SHOULD do. It is irrational and dangerous.
No no....none of us should.I hope everyone understand I was just expressing my own frustraton and while I do ask for opinions - hell, I dont even do what my DR says ! Never worry I would take advice from ' an internet buddy' without extensive research and my own final decision :>)
THX0 -
Purple32 & annettek make the very good points that, as well meaning as everyone is on these discussion boards, those reading must remember that even if someone with the same of similar Dx posts about themselves, there may still be individual differences where is MAY or MAY NOT apply to you (and it is next to impossible to really know.) Also, consider what is written on BCO as one source, but definitely seek out more; or use what is posted here to open up some Q & A with your doctors.
I am very fond of telling others that they should and must be their own advocates, or have an interested loved one speak up for them. You simply cannot hand the reins over to the "healthcare team." because you can't know where their interests lie. Am I being paranoid? Annettek has just illustrated the point that sometimes you might be urged to be a part of someone's pet project or special interest, without them being up front about it. So sorry you had to get the extra CT rads exposure, annettek. I am always fearful of that myself. (One of the low points of my treatment was getting a set of preliminary CTs for a Mammosite that ended up not happening. Not really the docs fault, other than they made a bad guess that I would be a good candidate but I was not. To them, it's just a tiny bit more radiation--no biggie--but it's my body so I'll be the judge of that.))
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I worry that all the noise about over treatment is code for 'less care' and/or 'the old will die soon anyway'. I was diagnosed at 71 and would have had IDC in my chest wall if I hadn't treated it (BS had to go to chest wall to get a clear margin). I have a mammo scheduled for 1 year, no blood tests have been mentioned, and all the onc did was a manual breast exam.
The same is true for prostate cancer in men. Until they can tell whether a cancer is likely to be a problem or not, they need to be very careful. My husband is able to get the PSA test only because his uncle had prostate cancer and his father died of it.
That said, Annettek should be angry. I would be absolutely furious.
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I read an article in Prevention about the two schools of thought regarding early detection and mammos every year vs every other year. The every other year side believes that your cancer may be detected 2 years earlier, but all that accomplishes is that you know you have cancer 2 years sooner. My cancer was not detectable by exam by me or the doc. I have no node involvement. Likely I fall into what they term as the "mammogram sweet spot." I had the lumpectomy and the rads. I wish I hadn't done the rads now; I think surgery alone may have been enough, but who knows? It was growing for 5-7 years, so whose to say there were not cells surrounding the lump? There are risks and repercussions for both arguements and both treaatment plans.
As I've said on another thread, I made the best decision I could at the time and second guessing myself won't change anything. It is what it is and I can't change it. All I can do is live as healthfully and happily as I can. So now I work at adding life to my years and not letting worry take any amount of time from my life. :-)
BTW when I had lung surgery years ago, they took so many xrays that I used to joke that if they took anymore I would golw in the dark. Now my MO wants me to have one each quarter. For what purpose? He does comprehensive blood work. If my numbers aren't off, why should I risk the add'l exposure? If my numbers are hinkey, than we can discuss it. He's gonna love me. First I refuse the drugs and now the xrays. Sorry, but the effects are cumulative and I'm not volunteering for anything if there is a non-radioactive alternative. I already have to have bone scans. I'm not goose stepping anymore for anyone!
OK, rant over.
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The discussions of early diagnosis vs. overdiagnosis, what to treat, how to treat it, and how to follow up, etc. reflect to me, at its essence, the yearning most of us humans have for certainty and predictability. We think that if we can count on something - a test, a surgery, a treatment - we are able to maintain some semblance of control. This disease, unfortunately, has shown many of us how little control or certainty we actually have. For better or worse, knowledge evolves. So while much is known about BC at the present time, so much remains unknown. It's not a comforting thought. But it's better than the state of knowledge 20 years or 10 years, or even 2 years ago. One of you said, 'it is what it is.' Yup. I think our job is to be as informed as possible, make the best choices we can, and to put one foot in front of the other.
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301724 - I have always said that our perceived control over our lives is an illusion, even for those that don't have cancer. I have cancer, yes, but I can also be hit by a drunk driver (or a sober one for that matter), have a tree fall on my home in a tornado or hurricaine, be the victim of a random bullet, or a host of other things over which I have no control. I have always wondered if it would be better to know if you were going to die or never know what hit you. I waffled between the two. I don't waffle now. Ignorance, in some cases, really is bliss.
And let's not forget what a powerful force our brain is. Studies have showed that negativity, and conversely, postive thinking, prayer, meditation, etc., have measurable effects on our bodies. I will do what I can by eating right, exercising, making treatment decisions, etc. The rest I'll leave to God. He has much bigger shoulders than I do. :-)
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But it's better than the state of knowledge 20 years or 10 years, or even 2 years ago.
301724
I'm not completely sure I agree with that .
I stand by what I said. If not for this " better" high tech mammo my BC would not have been seen. NOBODY felt it... not .me, the gyn dr, BS, RO or MO.
Now that I haver LE AND I did not get the so called 'benefit' of rads and feel the meds are wrong with my other ills, I honestly prefer it was left alone.Had I been more informed - as so few ppl are - about LE maybe I would not have had that surgery at all. I only know how I feel for my situation, and that is what it is ! :>)
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Sheila just posted on FB that her power came back on and she is frozen but fine. So hopefully she will get a chance to get on here soon.
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Thank You to all my sisters.....
After 41 hours in darkness Power is back.......I'm OK but the rest of the East Coast don't seem to be OK...
Listened to the radio the last 2 days...
Now I will put the TV on and see it with my own eyes
I didn't check the posts ...don't know who didn't report yet....
♥
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Glad you are okay, Sheila!
Cozy up w/ some heat.0 -
Thanks purple....I'm nice and cozy now
elimar i'm back..thanks for looking for me...
Hugs to all♥
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((((( Sheila )))))
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Sheila.....so glad you are:)
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I am glad every one rode out the storm pretty well. I hope repairs go fast. It will be interesting to see how the east coast handles this disaster, and compare it to Katrina. Really interesting to watch. (Although certainly easier to watch than to experience! ). Much love to all.
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Im alive and kickin!!!!!!
rough ride....no heat still in my bldg.
Im in Brooklyn now.
Please pray for all the people that have not made it....
My both nieces still have no heat nor hot water.
freekin bitch sandy....you took my husband away...now you spoiled my birthday
what else do you want??????
dont know when ill be back cause this puter suks and my phone is dead.
hugggggs everyone Grannydukes
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Thank you for that! I appreciate your reply. I'm curious...do any of you ever go a day without thinking about how you had breast cancer? Yesterday I went back to the same office building as my MO and PS. But it was for the BRCA tests. All the old feelings came back and it felt so strange. Like going back into your old elementary school. I have only been to see my Onc. once. This all feels like such a dream. Luckily I have 2 boys and a great husband that keep me busy and happy. A good friend of mine that has non-hodg lymphoma told me 'this is your new normal'. There was something comforting about that to me. Bc the whole time during my diagnosis I kept longing for 'back to normal'. She told me that eventually you will become comfortable with your 'new normal'.
I appreciate your reply though. I laughed about your nurse smiling. Too funny! I'm so lucky with my early stage and I feel it in my heart. I caught mine early (myself). The whole experience has been positive. I never let myself think negative. I remember that one sentence 'unfortunately yours was cancerous.' After that I decided I would never let it beat me down. Not that I did not have bad days or thoughts but I quickly followed them with positive thoughts.
I hope someday I can help someone the way one of my BC friends helped me. That is the way I will thanks her....by passing the love on.
Thanks for your reply!
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Kim I just celebrated my 3yr cancerversary... believe it or not it does get a little easier down the road, though 3 yrs ago I wouldn't have believed it, and there are many days now that I don't think about having had breast cancer. I can't speak for everyone of course because each of us are so very different and unique. But my life has gone on and I am a survivor! I let people know that when I get the chance to give them courage and hope and other days I'm just me... I am a nurse, a wife, a mom to 3 wonderful kids and a grandmother of 6. I'm busy and tired but I love it and wouldn't have it any other way.
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GRANNY! Sheesh....smackin my head...you were right in the middle of this ...so glad you are ok buddy- BIG HUG
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Its sooo sad here.Brings me back to sept.11th.
Another Historic event.
Sometimes I think I lived too long.
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"We are all just walking each other home." Ram Dass
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Granny, I hope they kick relief efforts into high gear for all of you! I hope everyone is at least safe by now. It's gonna be a long road back for all of you. Much love
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no granny...you have most definitely NOT lived too long...it just makes us weary sometimes...even when we are ok, seeing/feeling the stress and pain of others...it just makes you human...thank goodness...there are some where nothing affects them beyond what directly affects them...that is not being alive...you, on the other hand...ARE VIBRANTLY ALIVE AND COUNTED FOR:))))
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