MIDDLE-AGED WOMEN 40-60ish
Comments
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elimar: Yes, my Oncotype score of 14 got me out of chemo. (And you're not grilling me.) I got the results 4 days before I was supposed to get my port installed. I feel very very lucky. I found radiation to be pretty easy, and so far (4 1/2 weeks) Tamoxifen hasn't given me any SE. I wouldn't mind the SE of weight loss, but I'm still having to fight to get the pounds off. Oh the perks of middle age...
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I also recommend myfitnesspal.com. (free app) I use it on my mobile, easy to use while out and about. If I have a moment somewhere, I can update my diary, look up foods, etc. Keeps track of your weight, exercise, water as well as calories. You can set your goal & work from that. Very easy to use.
I feel like I should be on E-LAB. Maybe I'll stop over there, been a while. Too "a while". HA!
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Myfitnesspal is a great app. I use that one too. I've managed to lose 7 lbs over the last 2 weeks. I think nerves are playing a bit of a role in it. Not exactly the way i want to lose, but I'll take it.
I have found that my water intake truly directly affects my weight flucuations. If i drink my 8-10 glasses, i lose weight. If i drink less, i gain... weird. -
elimar, TAB55's oncotype has proven what I've been saying all along. Slower growing cancers - Grade 1 for TAB - don't respond to chemo!! Chemo only works on fast growing tumours. I read this a while ago when the oncotype was first becoming available and have mentioned ER+ breast cancer as being slower growing too. Isn't it wonderful that TAB was able to avoid chemo that wouldn't even have WORKED on her cancer!!!! THIS is the kind of news we need to focus on. The oncotype testing is now available in Canada for the past bit, in Ontario and BC at least. Don't know of other areas. It's about time!!
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Barbe1958- what about grade 2. That is not slow or fast. I hate the whole in the middle thing like some others with their onco scores being in the middle and not knowing what choice to make. I had a score of 6 but 17 positive nodes. I could very well be doing this whole chemo shit for nothing.
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Barbe: I agree with you! The thing I like most about the Oncotype score is that it's looking at MY tumor. It doesn't really matter what the averages are (Only 1 of 8 women get BC, so we're living proof that the odds don't mean squat!), all that matters is YOUR cancer. How fast it's growing, what it reacts to, and what it doesn't. Everyday I think how lucky I am that I had that test. My MO didn't mention it, and when I brought it up, he said, "That's for node negative women." I told him that I had read research about women like me (ER+, Her2-, post menopausal) being good candidates for the test. He agreed, since I was grade 1, but what about other women like me who don't do the research, or don't mind being pushy? (I'm excellent at being pushy!) I would still be in chemo right now, and have radiation in front of me. Instead, my radiaition is behind me and I'm taking a Tamoxifen with my multivitamin each day. No muss, no fuss...
Dianarose: Not that it matters what I think, but I would have gone for chemo too if I had 17 positive nodes. I probably wouldn't have bothered taking the Oncotype test. That's just too many cancer cells trying to get out to wreak havoc. But, you're right. There are no guarantees. We make the best decision we can, and try to enjoy life while we can. It must have been frustrating for you to have such a good Oncotype score with so many positive nodes. Life can be such a bit¢h sometimes.
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Tab55-The onco test was done after my lumpectomy with 4 positive nodes. My mastectomy 3 weeks later revealed the other 13 nodes and other fun stuff. The MO was upfront and said I could very well be doing chemo for nothing, but I have gone through 5 rounds and the end is in sight, 15 days, not like I am counting down or anything. I am glad it shut down my ovaries though.
I don't think I totally understand the whole estrogen thing though. Is it the cause of the cancer to begin with or is it what keeps it going once it starts. I have asked the MO and he talks in circles and you know no more when he is done.
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Dianarose: That is a bummer for you! My understanding is that estrogen feeds our cancer, but doesn't cause it. But, what do I know? I'm glad you'll be done with chemo in a couple of weeks! We'll have to celebrate.
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Dianarose, HER2+ cancer grows quickly, ER+ cancer is known to be slower (with grade considered). BUT, you had 17 positive nodes. I'm surprised they even did an oncotype on you! The test is for the very gray areas and I would do chemo if I were you. 17 positive nodes isn't a gray area! But I have to ask, why DID they do the test and if you came back as a 6, why ARE you doing chemo? (though I would push for it)
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Relating to being Grade 2: To me, with my Grade 2 being in the middle of the "aggression" scale, I was happy to take the OncoDx, but the joke in that was that I fell into intermediate range there too. Score 18. However, in my pathology, my grade was broken down into it's three components and I knew that the rate of growth (mitotic rate) had received the lowest score possible, a 1. Knowing that helped me to pass on the chemo. I figured my B/C didn't grow quick enough to take on major damage from chemo. (Barbe, mine could not grow any slower, but my OncoDx score was not Low. I think it does follow the pattern you suggest BUT then a crazy exception pops up. Ask Eph. When those rare cases come back unusually high, I have often wondered if it might be an error, but it may just be the randomness of B/C once again. I don't know of anyone who re-tested after a "surprise" high number, but maybe they should have been.)
D-rose, Don't forget, you had more than one cancer going on simultaneously so, of course, the nodes on one side could have had cells from one tumor (OncoDx score 6) and the other untested side could have been more aggressive, could have been Grade 3. It probably was considering how many nodes it got into. I'm guessing at that.
As far as Grade 2...way, way back when I joined BCO, a member wrote to me that although it had its own grade, it really came down to Grade 2 (behaves like Grade 1) OR Grade 2 (behaves like Grade 3) as far as aggressiveness is concerned. I think OncoDx helps split that hair.
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Hi everyone - I haven't posted in a while, but interested in the oncotype - dx and chemo. My surgeon did another type of the same test, and my rate for recurrence came back as low. However, because the cancer spread into one node and broke through the node, chemo per my oncologist was at that point inevitable. Hopefully not going through the pain of chemo for nothing....have round three of AC tomorrow.
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butterfly, I think we've said a couple of times that as soon as a node is affected that chemo is pretty much a given. I'd certainly have pushed for it no matter what my oncotype was! We are under the impression that they don't even test women with nodes involved, so I'm surprised a number of you got the oncotype though you had node involvement!
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Is it strange to be node negative with a onco type 32?
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Yep!!! And that is why they had to invent the oncotype test!!!! Is that what you had as a score? You and your team must have been surprised! ER+, HER2-, no nodal involved and a score of 32! Wowza!!! See, before it was just guessing, now the test is helping women like you that would have been denied chemo. Way to go!
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Yes. I haven't seen my MO yet, I see him Thursday. Curious about the course of treatment. Nervous too. I am 40. With two very busy kids and a single parent. Headed back to work after having bmx three weeks ago.
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My Mamm Results:
Negative/Benign Findings
Good Lord, such stress......
Hugs to everyone from one less stressed-out gal!
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Dakota212, Your info. seems to imply that your B/C was found early...and (with OncoDx score of 32) it's a good thing it did not go unnoticed for very long. What I mean is, even the most aggressive grade cancers start out as Stage I, they just "outgrow" that stage quicker than the lower grades. So, they caught yours before it got to the nodes. I call that lucky!!!
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Valjean: Congrats on the results of your mammogram! Time to celebrate.
Barbe: You can still skip chemo even if you have a few positive nodes (like me). You just have to be Er+, Her2- and post menopausal. You can read about it here. Of course, time will tell if that was the right decision for me...
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Elimar- I had a ton of ILC and DCIS and LCIS. I also had a small IDC. My boob was very busy. I just hope the chemo killed any thing that was left over. All doc's involved were shocked that my onco score was only a 6, but do we know how much tissue is actually used for the test. I don't know if both the ILC and IDC were tested. It doesn't state that. I will have to go back and see what the mitotic rate was. I am sure when I read it when I was stressed to the max I wasn't sure what everything meant. All said and done, I am just looking forward now and I have an infusion tomorrow and one next week and finish the Cytoxin pills on the 5th of Nov. Done with that crap and moving on to rads. On a positive note the side that had cancer and rads 8 yrs ago had no cancer. So I guess the radiation worked.
Barbe1958- I have read that they will do an onco test if you have just a few nodes involved. I had 4 at the time they did the test and I was hoping that it would really help me make my chemo decision, but it just made it worse. We didn't know about the other 13 nodes until they did the BMX 3 weeks later. A score of 6 and 17 nodes. I didn't know what to do at the time. I chose the CMF chemo because of the low score and didn't want to have all the harsher side effects from the other chemo. Not to say that CMF doesn't have it's own sucky side effects, but I have been able to go to work everyday.
My daughter and grand babies went back to NC last night. It was so hard. My daughter and I just hugged and cried. It's been an emotional day. We had my dad's burial service today. As my daughter would say, "mom, you are just a hot mess". Miss her already.
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Dianarose: {{{{Hugs}}}} from me to you. I hope happy memories of your time with your daughter and her babies give you comfort.
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I don't know how it happened, but somehow I'm about 7 pages behind. Way too many to read through, so please know that I hope everyone undergoing tests this week gets good results, and if you got good results in the last two weeks, I'm celebrating with you!
Tamox and/or Aromasin - I did 3.5 of tamox and 1.5 of Aromasin. Can say I miss them at all, but I was shocked when the 5 yrs were up. I know there are some women who have horrible side effects, but I think a good amount of us ... me included ... have milder issues and can deal with them, sometimes creatively! (Like the fact that I had to start going to bed earlier to compensate for the times I'd be up in the night with sweats.)
Hugs to you all.
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marlegal: Thanks for sharing your experience on Tamoxifen and Aromasin. I started Tamoxifen 5 weeks ago, and so far, so good. Except for the %$@#*! hot flashes.
But, those started as soon as I went off HRT. A good friend and I went to see "Menopause the Musical" a couple weeks ago. That was good laugh therapy. Did the night sweats dwindle away after you finished your five years?
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Tabb55-
Hot flashes while on Tamoxifen can come and go. I started Tam back in May, started having kind of minor hot flashes about a month later, but then they stopped. Then they started again. Now I haven't had one since early September! Between that and sporadic periods (I used to be very regular) Tam keeps me wondering. But believe me, I am grateful for being lucky with few, manageable side effects.
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TAB, your link took me to the oncotype testing site, not what I was expecting! Remember, the ER+ and HER2- means it's slow growing, so skipping chemo isn't unheard of. I think of Tamoxifen or Armomasin as "chemo" as in the fact that your are taking something for your cancer. I, on the other hand, am taking nothing! And feel like a sitting duck!!!
I think the biggest surprise I've seen is Dianarose! 17/17 nodes and an oncotype score of 6!!! BUT, ER+ and HER2-, which indicate slow growing...!! So, it's been there for a while.
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Had an infusion today and another one in a week. I think I am just getting anxious to be done. I was there for about 3 hours. Just wanted out. They do feed my friend and I a good lunch each time we go so that helps pass the time and I have 2 male nurses who are so funny. I then took my friend to my hair stylists to have her hair cut for her birthday. She was surprized and happy. She has been a true friend and has gone with me to all of my appointments, even my therapy and fills. What is funny is she is my ex-husbands new wife and we are best of friends. I think we understand each other and find myself telling her I am so sorry I didn't crash her wedding and kidnap her until she came to her senses.
Barbe1958- They surgeon thinks my cancer has been there from when I had it the first round which was over 8 yrs ago. Little bastards. I got my appointment to get set up for rads so if there are any left we will just nuke them. I want to open my own bakery next yr so forward I go.
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Barbe: You can read the same thing here. I agree with you about Dianarose. It's hard to reconcile 17 positive nodes and a score of 6!
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Isn't it possible that Dianarose's OncoDx score of 6 was from a different tumor than that which invaded her nodes? She had multiple lesions, both IDC and ILC in there.
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Elimar- It makes you wonder how acurate this test is if we are not sure which one is being tested for those of us with multiple tumors.
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Elimar- I do know that both were er and pr positive.
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My guess would be that they would send off a sample from the largest mass. In a perfect world, if there are multiple masses and one is IDC and one is ILC, I would think each sample would deserve its own test, but at close to $5,000 for each OncoDx test, maybe insurance does not allow for something like that. ???
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