MIDDLE-AGED WOMEN 40-60ish
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(((ANNETTE)))
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Colleen, I don't know how to say this except that ER+ is a slow growing cancer. We normally don't recur in the first 5 years. It's after the 5-year mark that we have to be more vigilent. After Tamoxifen are you going on an AI?
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Barbe - I'm VERY aware of that: have had many discussions with my MO who has said that if the ILC comes back, it's likely to be 10 - 15 years out. So the usual significance of the first five years is diminished significantly. I tell people that in person, when they're all "ooooooh - three years!"
And why have all of this follow-up, as though we're looking for something now? The theory is that just because I had a slow-growing, organized, hormone-receptor-positive cancer the FIRST time, it doesn't mean that I won't whip up something different in the next couple of years. We have no clue why my body allowed cancer to grow in the first place, right? We have this interesting game going where "of COURSE we won't find anything - but we're still going to look closely every six months." So yes, she's planning a fun AI for me after my Tamoxification is done - she's mentioned Femara - and who knows what after that? I get that I'm in this long-term, sadly.
And while I didn't throw a big party and actually feel relieved or anything at the three-years-since diagnosis mark, I was still glad, because any day without identifiable cancer cells is a good one. I don't like how Tamoxifen makes me feel, even though on some level I am happy to have something to take with a known track record of preventing more cancer of the type I had, so being halfway done with taking it is good.
Heartandsoul - I haven't heard of the "Emperor of All Maladies," but I like that impressive title, so I'm going to look it up. I'm all about reading on the cheap. I have a Kindle, but the library is my friend, and here in Texas we have tons of "Half Price Books" locations. Not great for new releases, usually, but if something's been out for even a few months...
Joni - Went to Disney with the band for four magical days at the end of May. 175 of my favorite teenagers. It was character building - my daughter's group has known each other too long, so the friendship honeymoon is over. It wasn't a matter of, "Oh, I'd prefer not to do that type of ride, because I get motion sick." It was more, "I am SO not going to walk ALL THAT WAY for that STUPID ride you want to do, because I have NO interest!!!!!" Then we have a girl who tends to not take care of herself, creating all sorts of drama with her self-induced dehydration. (She did it last year AND this year.) God forbid you cheerfully ask her to drink her water: all of her friends (except my daughter, thankfully) look at you like you're an overbearing monster. I suppose on some level, they all must enjoy having to sit with her while she doesn't feel well or rush her for treatment to first aid or wait for paramedics...
Overall, I had a great time, but this may be my last gig as official chaperone. I want to be a "Tagalong" parent, without the responsibility for getting the kids up at the butt-crack of dawn and checking to make sure they're in their rooms in bed in the middle of the night. One mom checked herself into first aid at Epcot for a four-hour nap in the A/C. Sadly, I was SO envious - what a GREAT idea! I'm several years older than she is, so on the one hand, if SHE was so tired, it wasn't just me. But on the other hand, this is how the band director likes to run the trip: a tired, busy high school kid won't get into trouble. The end result is exhausted adults, especially those with a "new normal" from Tamoxifen.
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And Barbe, gotta say, your word choice was not much better than just coming right out and saying, "Woman, why are you celebrating? Three 'clean' years with a highly ER+ cancer is virtually meaningless - you're going to have to worry for at least three times that long!" Just sayin'.
Luckily for you, I "get" it, so there was no "happiness bubble" for you to burst.
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As one with a slow growing cancer, I have to say, you gotta get to the third year before you can get to the fifth year or tenth year, so why not mark it in some way. At this point, some of us don't know if we are in a fool's paradise or not. Three years may not be worth renting a party inflatable over, on the other hand, if you get to fifteen years, will you still be able to jump as high? Enjoy the Now!
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with Elimar 0 -
I celebrate every day. I choose to live 'in the now'.
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I haven't reached even two years on Tamox. yet, but now I am wondering...Do most of you Tamox. takers plan on doing an AI after your five years is up? Has your doctor already mentioned it to you? I never asked mine and he hasn't said anything along those lines yet but I'm still early in the game.
My own feelings about doing an AI are: No, thanks! BUT (there's my big-butt again) I have osteoporosis in my family. I kind of have a feeling that my bones might be able to hold their own o.k. without any outside interference. I'm also afraid of AI joint pain, 'cause I have fibromyalgia pain already, and I think even Tamox. has worsened it a little. I am avoiding AI's to the extent that, even tho' I will probably be fully menopausal before my five Tamox. years are up, I'll just stay on Tamox. anyway (the devil I know.)
Disturbingly related (if I am understanding it right) is that women who are menopausal when they come off Tamox. actually lose bone at a quicker rate than the average menopausal woman does. A rebound effect. Oh, yay! Just can't win.
Never say never...who knows what will be available in three more years. If something new for estrogen loving cancers shows up, I'll have to consider it.
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Should I not have rented the jumping castle? Or, wait, certainly I'll be more able to jump in it now than I will when I'm 60. On the other hand, entering a jumping castle at my age on a day when it'll be 101 with very high humidity and lots of sun would probably be suicidal...
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elimar I kinda feel the same way you do. My onco has mentioned that if I go through menapause that he will switch me to an AL for 5 years. Currently I have sever hip joint pain either caused by tamox or rads not sure which and they don't really know either. I have to take 200mg Celebrex 2 times a day just to be free of pain and to walk without a limp. I have heard how hard AL's are on the joints. I don't need any additional help in the joint pain division. At this point I say I will pass.
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Im just as cofused as the next person on taking the Tamoxifen. Thanks for the info gals. I just dont know about whats gonna happen when Im done with the Tamo and this helps. My sissy didnt have to take tamo, so she cant help me on this one. My Auntie took it for 5 yrs, but she is gone now so I cant ask her. Her passing wasnt BC related. She lived another 15 yrs after that. I dont recall her saying anything about more cancer treatments once she stopped the Tamoxifen. But then again she was in her 70s when she took it, so thats even more confusing now.
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Holy crap ladies! Calm down!! I tried to type the message to Colleen a couple times, trying to get it right...so I blew it! I just should have said Don't you know there's no cure for breast cancer? Why bother marking the years off???? I'm not on Tamoxifen OR any AI's!!!
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Wasn't it your daughter last year that didn't want to be in your chaperone group Colleen? Or was it someone else....?
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My MO keeps talking about me having my ovaries out since I'm not menopausal but obviously some of you ladies are taking the tamoxifen with ovaries intact which is what I want to do. Taking Als doesn't thrill me either. I already have arthritis and my mom has osteoporosis and very bad arthritis so it's hard to think about adding to the pain.
These decisions are difficult. I finished no. 8 out of 31 rads today so I know the decision time will be coming soon...
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I was menapausal when I started Tamoxifen and will stay on it for the full 5 years. There will be no switching to an AI in three years or five years. I have tried 2 of them and just can't deal with the SEs
Barb58 - I still have my ovaries intact - no worries there.
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I found out today that I'm gonna start Anastrozole (Arimidex) after surgery.
Look, the Barb(e)'s posted next to each other - the excitement of my day
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I feel bad about the name similarities....but I'm glad it's the excitement of your day reesie! 0
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Teka, can't remember another thread I was reading about the concept/term "cured." Kind of a paradox, isn't it, because both the statements below are true.
1. There is no "cure" for breast cancer.
2. There are women who received treatment, and remained cancer-free their whole lives.
In the first case, if there were a cure, women would not be dying from breast cancer.
In the second case, is it just splitting hairs that we say they remained NED? Why can't we say they were cured? Is the thinking that they just did not live long enough to have it reappear? Well, we can't live infinitely to test that one out, so for all practical purposes they were cured.
It's a tricky one, no? If I am lucky enough to have my cancer never return, I don't really care what label anyone wants to stick on it.
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I am on Tamox, am now menopausal, still ahve my ovaries and there was talk of AI in 5 years but since the thyroid cancer and the increase in arthritic pain issues my MO is not sure. Figures we will cross that bridge later. I cannot take celebrex and find I have to adapt to relive the pain, I have found that for my ankle pain a swedo ankle brace works well. I agree with El I don't care what lable as long as I stay in remission I am doing hte happy dance!!
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One of the things that stuck in my mind the first time I met my RO was that he explalined that we are never cured of breast cancer. We can live in remission for the rest of our lives and that is the goal but we are never curable. That was right after my surgery and it really scared me. I have since gotten over it. I don't care what they call it as long as I don't have it.
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Yep, and with my sense of humour and fun, you know I'M not sitting here sulking that I'm not cured!
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If by definition we are supposed to be considered "cured" then why is it that at the back of our minds we live in fear of a recurrance?
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It's tough when the clues (information we get & even the studies themselves sometimes) contradict each other.
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i so agree with the cured remission etc confusion...i will be more than happy to have no active cancer in my body...it made it once so the damn thing has the friggin recipe....just do my best to make sure the oven does not work
Went well today- only got the nips not fat grafting- he is waiting another month or two for nipples to heal so he can address any retraction and flatness resulting from making them and fill in ripples, etc at the same time -major point was he did not want to compromise blood supply to nipples- i trust and respect him so after i was done bitching at him it was all good
thanks for being here for me folks...means a lot.
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Just wanted to let everyone know, in case anyone notices I'm not around, that I will be gone for a little over a week beginning this coming Saturday.
I'm going to play with my Grandkids, ages 3 & a little over 4. Barbie dolls & trucks, swings & picking flowers, Candyland & Chutes & Ladders, Play Doh & dancing. I'm going shopping & hiking, I'm going to have some Margaritas
and try to find myself again. Or something close to the former me. And I'm going to stick my feet in the cold, cold water of Lake Superior! Burrrr !
I'll be around tomorrow packing so I'll stop by.
Edited to add: good news, Annette! Glad it went well.
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Have fun, Val. {{ANNETTE}}
I like the idea of NED. That works for me.
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My DH has been home this week on vacation--while I work so I am way behind on my reading and my posting!! Annette- glad your surgery went well!! Love the analogy about recipes and ovens!! Val--sounds like a great relaxing time! I am jealous of the Play doh moment tho!! Have fun!!
When people ask about my cancer "status"--I refer to FB--"its complicated'" My chemo,BMX and rads got rid of this cancer. NED. Who knows if I will get cancer again, but not going to sit around and wonder if and when. So its complicated.
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Barb58--I am pre-menopausal, too and didin't get along with Tamoxifen. I get Lupron shots every 4 months to put me in chemical menopause and take arimidex. So there is an alternative to having your ovaries removed.
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I had a hysterectomy but they didn't take my ovary. I just had a transvaginal ultrasound and they couldn't find my last ovary (had one removed at 21 yo), so I guess it just shrivelled up and died...sigh.
I sometimes feel very vulnerable without any chemical interaction against recurrence, that's all.
Jo, we are NOT cured. That's the point. That's why there are "Race for the CURE" events going on all over the world.
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Barbe1958, What do you call someone who stays cancer-free their whole life post treatment? (Besides lucky?)0
