MIDDLE-AGED WOMEN 40-60ish
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Hi Elimar - what you wrote is exactly why I am getting a second opinion. Since I am HER2+ - which in the insurance world means chemo - they will not do (pay for) an oncotype on the her2- tumor. I had bilateral breast cancer. My MO feels that since he doesn't know the oncotype score he is going on a path that would treat it as if it is aggressive. So I get AC DD x4 - then 12 taxol and herceptin and then finish up with herceptin for the balance of the year. He did not break down the risks/benefits due to the fact that he does not know the score for the her2- tumor. For this reason - I am going to Moffitt cancer center for a 2nd opinion on the chemo regime. My MO is very supportive of this decision and will go with what they suggest if it is different than his current plan.
Oh and thanks for the welcome - I have posted on this thread a couple of times but only recently and in the middle of where artificial flavorings come from LOL
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linda505, both your cancers are ER+ and grade one, which are "normally" slow growing breast cancers as well as being small. I can't believe either that you would be getting ACT!!!! That Taxol can really do a number on your heart as has already been mentioned (I think that's the one). I didn't get ANY chemo with my ER/PR+ HER2-, 1cm WITH micromets and ITCs! I'm over 5 years out. For me, if I recur, Tamoxifen will be my first line of defence. AND I had a very, very rare kind of breast cancer, Papillary, which is less than 1-2% of all breast cancers! When I got it, there was only ONE mention of one patient on Google about it. Really stumped my surgeon. Now it's more prevalent in records on Google. I would think that the Herceptin and Tamoxifen would be enough - BUT remember, we are NOT doctors!! We only comment from experience we've seen on this board of almost 150,000 women. When I first joined there was just over 40,000.
Lakegirl, your tumour is bigger and the grade is more aggressive. Don't panic about the nodes, they did their job. I had micromets and ITCs as noted but my grade was never recorded! Stumped my onc, but I was glad to not have to do chemo.
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thanks barbe - and that is why I want a 2nd - I have combed through this board and can't find anyone who has gotten ACT for my diagnosis.
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Linda, Yes, I guess that HER2+ is throwing everything off. I am not up to the minute on all the chemo decisions out there, but I was thinking that with (targeted therapy) Herceptin, that it was sparing some of the women from having to do the full monty of regular chemo. With your tumor being Grade 1 (which is supposed to indicate a slow-growing tumor, therefore not the most aggressive) how effective can the AC/T be anyway? Please do report back the info. you get from Moffitt, as I can always learn something new.
Lake, Wow! With ER+ being 95%, it sure does seem like the Tamox. would give the greatest benefit. The decision for chemo is not just about "uh-oh, it's in the nodes." It is about the kind of cancer it is. Maybe, since you are Grade 2, your doc figures it is growing fast enough for chemo to be effective. However, the criteria used to determine the Grade are also a part of what determines your Onco score. So, again, IF the Once score is correct, you have to wonder how effective chemo will even be.
Isn't it just a shame that the methods used to determine WHO gets WHAT are not as sophisticated yet to spare so many women from getting the "shotgun approach" style of treatment. Still got a long way to go.
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Thanks again - and both of my tumors are highly ER/PR + both are over 95% - one is actually 100% on both er and pr
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I suggest getting the 2nd opinion, if only for peace of mind. I wish I would have done that back in 1996 as I thought my medical team was proficient and up to date. Wrong assumption! Can't remember the reason now because it's been so long, but went for a 2nd opinion after I was almost completed with chemo. He also sent me for a blind 3rd opinion to one of his colleagues, later found they were both authorities even though a little out of my geographic area. Bottom line: both 2nd and 3rd MO agreed I didn't need chemo in the first place but since I had finished 3 rounds, suggested I finish with the 4th and call it quits, which is exactly what I did.
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THANK YOU all...I have someone in mind, but not sure how to go about it. Do I contact the 2nd MD or do I talk with my MO 1st?
When I initially met with him, he was receptive to the idea re: 2nd opinion. He mentioned Barnes Hospital in St Louis and Northwestern in Chicago. Do you just go with whom they throw out there or do you find your own? So many questions, so little time!!!
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Lakegirl - I found my own - only because I knew that I wanted to go to Moffitt as they are considered Florida's top cancer center and they have a specialized breast cancer area. I told my MO after I made my appt only because I knew i was seeing in the a day or so after I made the appt. When I told him I was getting a second he was happy to give me a recommendation. I did contact my insurance company first to make sure that they covered 2nd opinions and made sure that Moffitt was in my network.
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Lakegirl, I only went for a second opinion one time (not for BC) and I didn't want a colleague of my first doctor which, with the limited options in my city, meant I had to go out of network. If you end up doing that, you will have to probably sign a few forms so that your new doc can get access to your history/surgical report/pathology because they might be on a different computer network. If you have your own copies, you can take them to your appt. Or, in a large metro area, you could possibly find someone within the same hospital system, but a different practice.
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My big news was that yesterday, when I was in the kitchen, I felt a single grain of rice with the ball of my foot. The other day, for the first time, my toes could tell that the bath water was hot. I must be making progress with my foot neuropathy, but the changes are really imperceptible on a day-to-dy basis.
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el, that's FABULOUS news!!!! I'm sure you have shared it on a neuropathy thread. It will give so many others hope....
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Elimar ...congrats!!!
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Elimar - positive progress! Yay!
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I was diagnosed with Breast Caner last summer when I was 44- stage 1 grade 2-- My surgeon kept telling me because of my age to prepare for chemo, he referred me to an Oncologist. I went to see the Oncologist and he had me meet up with the chemo coordinator who coordinates trials with the Mayo Clinic. He went on to tell me the trial was where they illuminate the drug that harms the heart and then they follow to person after to see if it worked. I asked my Oncologist" and if it doesn't work I am what dead?" His answer was " pretty much" I was shocked!!!
He sent me down for blood work and chest x-rays to prep me for chemo but when I came back, because my niece at age 33 had just been diagnosed before me, I asked him then if I could have the Onco test ran. He looked shocked I knew about it and said " sure if that is what you want"
A nerve wracking month followed and the test came back with an 18. When I went to get the results, he was running over an hour late, ran into my room told me your test is back, you do not need chemo. Gave me a script for Tamoxifen and told me it had been around for over 30 yrs and no side effects.. NO SIDE EFFECTS? Ummm where has he been? Then he told me from then on I could see his nurse practioner I didn't need to see him anymore unless I developed symptoms. Symptoms of what? he never did answer.
I swear he was upset I knew about the Onco test and didn't agree to be his lab rat. Really what good would it do to follow someone who chemo wouldn't work on anyway?
I decided enough was enough I could not trust my life to a guy who acted that way and I wanted to know why I didn't need chemo. A new Oncologist joined the cancer center so I made an appointment on my own with him. Wow what a world of change. He sat me down showed me a chart on why with an onco score of 18 that chemo was more a risk then a benefit for me and he showed me how Tamoxifen would help me the most. We discussed side effects and what symptoms to watch for and then he had me get some genetic testing because of 4 family members with breast cancer this year and my sister passing from stomach cancer at a young age years ago could all be linked. Luckily after waiting 3 months that genetic test for the Ecadharin gene was negative!! YEA!!
So yes sometimes for peace of mind its ok to ask questions and get a 2nd opinion I am sooo happy I had. Why have chemo if a person does not need it. This way if I ever have reaccurance they can still hit me with the big guns and I will know I am doing all I can.
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ndgrri: So glad you spoke up. I also had difficulty getting a oncotype test. But insisted and ended up, like you, with an 18 and for my situation, chemo was not deemed beneficial enough to warrant the harm. We all have to continue to be advocates for ourselves. Our medical team sometimes wants to do everything so there is no argument in the event of a recurrence that possible treatment was missed. I am comfortable with my decision to refuse chemo and hope you will be also.
I am grateful every day for breastcancer.org. There is no better site for good gouge from caring people who are going through the same circumstances. Together, we are a force to be reckoned with!
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Thanks for your story, ndgrrl, which illustrates what I was getting at. Also, age is not necessarily a factor, if the cancer is not one of the more aggressive ones. I had an Onco score of 18 too, and my doc said I would get 2%-3% lower risk against recurrence (statistically) if I did chemo BUT he didn't like to go that route unless the benefit was 5% or better because of the risks involved.
Lakegirl, Since your tumor was bigger than those of the women replying, I wonder if you saw anything on your path. report about LVI (lymphovascular invasion?) I mean a few cells did get to your nodes, but was there anything mentioned that it could have spread into blood supply?
Welcome, navymominohio, and congrats on recently reaching your one-year cancerversary!
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Elimar...I don't remember seeing anything like that. I will have to check when I get home...it is gymnastics night!!!
Also...my oldest is getting a cold! Just what we need as we proceed into this chemo thing!!!
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Hey all,
Got my 2nd opinion from Moffitt today after a very nice coffee with SpecialK -(pic in March surgery thread). Moffitt has recommended TCH instead of ACTH and I am pleased with that recommendation - I will be talking to my MO's office tomorrow to make sure that we get that regime switched. I feel very relieved with this recommendation and am very happy that I DID get a 2nd opinion!!
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elimar, just had to say, that over on that vain thread, you are crackin my a$$ ^! i havent posted their yet, till i am worthy. i might be worthy after i finish catching up.....if you guys let me. i thought i was too smart and brilliant for you guys, but i think i was ...wrong..
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Oh, lookie! It's an article that finds that patients who are in on the decision making process of their own treatments are more satisfied.
http://community.breastcancer.org/forum/109/topic/739321?page=910#idx_27278
I hardly think that passes for news to anyone on these threads.
Now, before you get too happy about this article validating your feelings, check this moronic paragraph:
"The study, published in the journal Cancer, involved 305 patients at
that hospital undergoing radiation therapy [intended to cure their
cancer.](*) Participants had a wide variety of tumor types, including
prostate, breast and lung cancer."Yes, we can figure out that these were people who did not have mets and were receiving rads, mainly after surgeries, as a part of their treatment to kill cancer cells locally, possibly preventing recurrence. However, this wording sure reads like there is a cure for cancer, doesn't it? I got rads. Am I cured now? Because if I am, I guess I don't need to go to the many follow-ups and scans. Guess nobody needs to "Race" anymore either.
(*) I put the bold-face on the part that particularly galled me. Or, am I just reading it wrong? Just that everyone has the good intentions in mind? Well, I know enough women whose road to Stage IV was paved with these same intentions!
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Linda505, Is that 4 rounds of TCH. That's kind of like the "chemo lite" around here. (Not that any of it is light, really.) You can rejoice to have eliminated that Adriamycin!!!
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Yes Elimar - and I am VERY pleased!!
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kathec, You will have to PM me on which particular part you refer to? I have lost track of the many silly quips I make around these parts. They are legion.
p.s. I never let waiting to be "worthy" stand in my way. Ahahaha!
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Elimar...there is nothing on the path report about LVI. There is indication of the Nottingham Histologic score, do you know what that is for?
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Linda - Taxotere/Carboplatin/Herceptin? Or Taxotere/Cytoxan/Herceptin? I had the 6 with the Carboplatin and when I didn't have a complete response I was able go back & do Adriamycin/Cytoxan after more surgery. I was particularly glad to have the Carboplatin since I'm HER2+ also. They did add Perjeta to my first 6 rounds.
Hope you can continue to avoid the Adriamycin since it's known to cause heart damage, as does Herceptin.
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Aha!! Thank MinusTwo; as I was reading the posts I did recall that it isn't Taxol that hurts the heart, but I couldn't figure it out until you typed in Adriamycin. I think that's was did the damage for poor Marybe.....sigh.
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Lakegirl1, The score from that (based on three different criteria) determines what your Grade is. (Google it.)
Barbe, Yep, Adriamycin (on top of years of other chemos) was the last straw for our dear Marybe. I forget if she ended up getting CHF or just kidney failure. I can't remember that exactly, but I remember her smile.
R.I.P. - XO0 -
funny header, Elimar
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CHF elimar...and then all her organs shut down. She watched them put the IV in that would give her morphine as the pain got worse. They also let her dog (Jake?) come to see her....
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Barbe, Harley
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Elimar - thanks for the picture. Marybe is one of those angels I think of often.
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