Can we have a forum for "older" people with bc?
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SV where are you?????????
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((((((Kathy and Sherlock))))))). OK, I need to print the past few pages out to try to get caught up on all. Got back from the Ocracoke Jamboree on Sunday and have slept for two days!!! ERRGH-one step forward - 10 steps back, But this time last year I was chained to a bed I was so ill fro surgery and infections and had not had chemo yet. And GD don't you dare beat yourself up for taking time to write and worry about your GS-WE are there with you!!!! and these things are really important-truly he is the luckiest biker alive!! OK, quick pix of me and Dave on the car ferry to Ocracoke island. More later.
I am just so freaking tired and nodding off. Thanks for all of the support for jane-just heartsick and her husband Bruce is just lost. i don't know what i'd do without you all. ok next big ta-do is the first reunion here on the Outer Banks. We have a mansion rented and the link showint he house is posted by Barb, a few pages back. Come one and all-I woudl love to see and 'meet' everyone-feels like I know you all already. If anyone is not feeling well, we will care for you and truly the house is so amazing, you can spend the entire time in bed and still feel like you've had a vacation!! Hot tub is on the deck overlooking the Atlantic! All tonight-sweet dreams to all, XXOO, SV
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SV, I so wish I could join you guys but can't afford it and never know how I'm going to feel from one day to the next, plus I have told my sister I can't go to Louisniana to visit because it hurts me to sit for that long and she would be upset with me. (there are people in La I don't want to see.) But please post lots of pics. Darla
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ok girls.i have been on the computer and the phone all day.as most of you know i dont want to do the rads. and or the meds.sooooooo.i called my insurance provider who has an on call nurse 24/7 and told her my story.actually i was looking for an alternative Dr.which tney are gonna search for.yea right good luck...BUT...she told me something that i must run by you ladies.I read her my path report(as best as i could)90% er SP1 strongly intenalty ER.and 30% PR 1E2 w/moderate to strong intensity score 1+ weak incomplete membrane staining in any proportion of tumor cells.This NURSE told me if i remove my overies or adrenal gland i do not have to do anything else.
I NEED HELP HERE..
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well
i would listen to my doctors
if you don't trust them, get a second opinion from a doctor
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all my drs want me to do what the onc. says.period.rads.5X a week for 6 weeks plus arumusin for God knows how long.I dont want to do either for many reasons.
what i would really like to know is if anyone ever heard of this.it just sounds so easy.1 more surgery.hey i had 3 this year and BINGO im done.Im likin that a lot.am i losing my mind?
BTW i changed my diet slowly,gonna go to health food store for some stuff the sistas told me to get and try to live my life.
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Granny, if you were geting these questions from your very best friend in the world, what would you tell her to do?
Please consider carefully.
Love and blessings
Ginger
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Granny, I think it would be a good idea to get another opinion...why not ..and then
have the new oncologist explain to you exactly what and why think the way they do
you deserve to understand your information..
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If i was getting this info from my sista,daughter or best friend i would tell her to get the overies OUT> my mother died from ovarian cancer.i had pre cancerous cells 2x in the past there.i had 7 D&cs. i was told in the past to get everything out but i was in menapause at age 40 and i thought i knew everything.I SHOULD HAVE HAD IT DONE THEN.THIS FEELS SOOOO RIGHT.
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Granny-the sole reason for the rads is to clean up the breast area. There is always the possibility that there are some nasty cancer cells still lurking in the breast. The duty of the radiation is to destroy them. I truly don't have any idea what this nurse was talking about. Best of luck in whatever you decide to do.
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I know what the rads do.they kill the good and the bad.i had a pet scan and im considered NED.the dr told me 100% no cancer in my body.the positive node was removed.the cancerous tumor was removed.
Im gonna have to do some more research about this.hey its like sooooo easy.she said its all hormone related.so take out the overies and there is no more hormones...right????
it just sounds too easy...im gonna see my internist on Monday and run it by her.Then imm go to the GYN and see what she says.I was just wondering if anyone ever heard of this.
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Granny, I had a complete hysterectomy in 1996. That was 14 years ago, so given this train of thought I shouldn't have gotten breast cancer right?
I don't know what the insurance company nurse was trying to tell you but it doesn't make full sense. I would not call my insurance company for medical advice. I would talk to my Doctors.
I too am tired of treatment and would love to be told I didn't need anymore but that isn't going to happen for me. What I want is the very best chance at no recurrance.
Best wishes
Ginger
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Something you need to consider. I already had no ovaries and had a hysterectomy years before I was diagnosed with bc yet I still got it from IMO, the hormones I took during menopause. So by that nurse's advice, I should not have gotten bc. However, I was told that I had to take the Arimidex because my Adrenal glands still produced some estrogen. So I think this is why she was advising getting rid of the Adrenal glands. However, if you are concerned about problems, maybe you better ask your doctor what you might be bringing upon yourself by having surgery on the Adrenal glands. I think they are very important to our body and if they weren't why weren't all the rest of us with hormone positive bc told to just "get them out" with our ovaries and we were home safe. I don't think it is that simple. IMO, your best advice is to have a good talk with the Onc you feel you respect the most and follow his advice or get another opinion.
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I called the ins.co for an alternative dr.and somehow i ended up speaking to the on call nurse.
i know it sounds strange and im gonna check into all of this.im not running tomorrow for surgery #4.ha. i did tell her i did not want the rads or meds so she was giving me options.
just keep in mine the most important thing..I WANT QUALITY NOT QUANTITY.If i have 14 yrs before it comes back ill be 84 yrs old.
I havnt told anyone but you.i think my friends and family will bring me to the nuthouse.
i luv ya sistas for all your concern.
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Medgal sweetie.the key here is yrs ago you had them removed.YRS>>> i love and appreciate all your concern over this matter.I too took hormones during menapause for over a decade.im sure that added to the bc.i know it sounds soooooo simple but hey you girls know me...i want simple and i want it done...
it looks like id better talk to my dr. and/or get another opinion.like i said im not running tomorrow to get another surgery...feedback is what i wanted and thank you sistas for that.it looks like you are all in agreement.sooooooo off to the nuthouse ill go.
when the hell is this journey gonna end.damn im sooooo tired of it.doin all this work on the computer all day.my eyes are closing.
again i luv all of you for sticking together kickin my butt.
God bless each and every one of you...hugggggggggggggs
K
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Granny, I am with most of the others. I too had a total hysterectomy several years previous to my cancer diagnosis. I think many of us had parts of this journey we would definitely have liked to have skipped. There still is so much it seems that is not known about this disease -- what is known is that as previously mentioned.....rads is pretty standard across the boards to knock out any stray cells -- especially the few that may escape during a surgery. And Armidex or drugs like it as we all usually have some hormone issues going on no matter what we have taken out. Even with total hysterectomy...my cancer was being fed by estrogen.
None of us know --- if it might come back, if it does when? if it does where???? We all want QUALITY --- but it could return in two years, 5, or 10... or maybe never... ..no one knows. To me the surest thing was to do what I could now and then I would not be looking back and second guessing myself. I have done all I could or am still doing it....no looking back, no worrying about woulda, coulda, shoulda. I'm just living every day --- thankful that enough WAS known about all of this to have a fairly straight-forward protocol. Not everything is known......but this is what they do know --- that this is the best chance for long term survival . Not a one of us really knows how long we have --- but I knew that I wanted to give myself the best chance I could to live the rest of my days....how many ever there are, with as much health as it is possible to have. I did not want to even look at it as a quality versus quantity thing --- because I am not completely certain if that is even up to me. I think my Creator may have some plans too and just in case we end up not on the same page......I'd like to cover my bases with what is known as a winning strategy.
I hope I'm not coming off as harsh, as I sure don't mean too......but a lot of people I talked too said having radiation was like a walk in the park to them after many of the other txs and operations.....I found that to be totally true for me. Also, while I do have some aches and pains from the Arimidex --- they are mainly more of a nusiance -- well worth it to me to know that the medication is filling up the cells that cancer could get into and grow --- as I'm 65....I figure it is good training actually for the aches and pains I might have when I actually do get old in 20 or 25 years.
I'll be praying that you get good answers from one or more Oncologists that make sense to you and that you feel you can trust. Then do what makes you comfortable and secure.
Hugs, Jackie
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Hey GD, ya'know, truly I bought all of the TV market spin on BC and all of the foundations and "we've come along way baby." i fear the truth is that, other than the fact that chemo is big business, i truly do not think any onc i have met knows much about RECOVERY and healing. I feel like I am being treated by a group of clinicians-who are supposed to be experts in cancer, who are working with only half the 'puzzle pieces." Of course they know a lot about prostate cancer and all the studies done on men (well not all)....but when it comes to BC...all they could tell me of value was in the Path report and that was that my tumor is the kind that comes back in the lungs and bones-oh goody. I have been told to 'report' to the doc if I have a headache that won't go away or bone pain that won't stop. UUHHHHHHHH...me thinks, isn't that a bit late? And here I thought they shot gold seeds or something into your body that attach to cancer cells and allow docs to track any new growth-NOPE, I am told. Even though a guy friend who had prostate cancer got the "seed" tracking system put in him. And to sound even more stupid, this is how it was actually explained to me by clinicians. And I was told to lose weight because body fat contains estrogen-oh joy!! I feel like I am working with docs who want nothing to do with me because I don't fit the ONE treatment model!! I wish cancer would get cancer and die, as a close friend says. And I understand the 'being so ill' that ya cannot go anywhere. I just wish I had a magic wand. There are so many of you i would love to see!! Meantime here is some horsey candy for the eyes. XXOO SV
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wow, I just ended up w/ huge letters from something, this is the 2nd time i've tried tonite. im way over the limit ondays not slept..basically, the way i understand it, if your ovaries aren't functioning ( i have one, its the size of a pea) and im in menapause, so then, it comes from yeah, you guessed it BELLY FAT.. im too weak from last surgery to excesize, and that's the only way i lose weight. cant even count how my belly looks,, cause i hav e"chemo Bloat" suppossed to be the real medical term for it.. seems your intestines fill w/ gas during tx. stretch, and never go back..kinda like the radiator hose in your car when its' old..(and i feel older than dirt)
th e new GI dr. says we have to "watch" cause my intestines have already been shortened long story..and its a good chance they will burst, or spring a leak.. kinda like "leaky gut" instead " leaky intestines" isn't this roller coaster ride fun? LOLsarcasm here.. praying for all you lovablee ladies....
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Having a hysterectomy before breast cancer is not the same as having it after....if you already have breast cancer and it is ER + it is fed by estrogen. Getting rid of the source is the idea here. Estrogen is in many areas of of body or so my onco explained it to me and the hormonal treatments either block it or keep it from being produced??....at least I think that is what the difference is in the drugs. Having a hysterectomy before BC is not going to prevent someone from getting BC, but I think it would help prevent a recurrence if removed after. Just my two cents worth, but am not sure a onco would agree, but I do know there is a difference with the timing.
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Good morning, ladies! I'm approaching my 8th radiation and the extremely good-looking student technician is still there. He kind of looks like Sawyer on "Lost". I've decided, what the hey, talk about eye candy. And he's fun to talk to, so I've decided he's like a perk now.
And SV, love the horse eye candy - keep it up!
I'm having terrible leftover side effects from the chemo - it's killing my knees and my back. I have to walk with a cane! I mentioned it to another patient in radiation - actually I just said my back was killing me - and she said her knees were hurting her. I said, me too! She said it was just some of those leftover SEs we can expect from chemo for up to a year. I spoke with someone at the BC Center yesterday - but not about that - and she said chemo hurt her knees, too! Who woulda thunk it? If they had told me about that, I would have said, "forget the chemo, then!". Just kidding, but I really don't like not being able to get around. Nothing helps except pain pills - heat, ice, elevation, nothing. They said it's leftover from the Neulasta shots they give you.
Fall finally arrived here in the Deep South last week. It's just beautiful - my favorite time of year! Plus, my house sits in the middle of 8 acres of hardwoods, so they're changing colors now. I have a private drive that looks like it came from a postcard of the English countryside, but I'm right next to the city. Wish I could walk down it!!! I don't own all the land, thankfully - the taxes would be outrageous. I just have an acre, BellSouth (or AT&T, I don't know who they are now) owns 2 acres behind me and the swim & tennis owns 5 acres across the street. You can bet the attorneys around here checked into developing it, and the land is protected from the original landowner. Then I called the Arthur Blank Foundation (he's one of the founders of Home Depot). He's so nice - he buys up land in large parcels that are close-in Atlanta to protect it from developers. So, they're backing me up in protecting these woods. Plus, there's Trees Atlanta - Ive had to call them before, too, when somebody started cutting down trees. They can get an injunction to cease & desist immediately. I feel like any woods that have survived around dense development need to stay. My son was walking out of the house the other day and saw a buck standing in our driveway. It was huge, he said. He was so thrilled! I've seen lots of deer, but he's never seen one. We are about 8 miles from the city limits so that's about as close as a deer can get with millions of people around it. There's a creek in the woods, so he just followed the creek no doubt to our house. It runs under the expressways to Mercer University, which has about 50 undeveloped acres but still I know the wildlife around here is crowded. I'm just grateful for corporate benefactors like Arthur Blank - he's a nice, nice person.
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Marybe: I agree with your post about the hysterectomy "before". The point I was trying to make in my post was that since I had already had no ovaries, my bc must have been fed from estrogen either before the "hyster" or from other parts like my adrenal glands. I sure would not want to fool around with surgery on the ags when I can take the Arimidex instead. Just wanted GD to know that. Frankly, I would be shocked if a good Onc would advise her the way that nurse did.
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just got back from my exercise class and wanted to check in to see what my dear sistas had to say today.
thank you all for taking the time to mull this thing over with me.
as usual i did not sleep well last night thinkin and thinkin like a crazy person.
Medgal you are so right about the onc.she would never tell me to do the surgery.
I dont want to mess with the adrenal glands,just want the ovaries removed.
Marybe- I think you understand what the nurse was trying to tell me only you put it together much better then i did.
now that i am at the 3/4 mark im worst then at the beg.the last step is the hardest.everyone says just do what the drs.say.been there done that.its now my turn....its the final step that is sooo hard.only because I hate my choices.THIS STEP IS ALL ABOUT THE SIDE EFFECTS. yea i know i may not have any BUT how many people dont??????I know my body.I really dont think it can take what the drs.are offering me.
Did anyone ever hear about Radiowave therapy?
Can anyone come here and shoot me now?????????????
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GD... just some things to consider:
There is no way your surgeon or oncologist can say EVERY single cancer cell was removed from your breast tissue at time of surgery, even if you had a mastectomy. Radiation therapy to the breast is to kill off those possible cells that could either create a new tumor in the breast or even travel to remote body parts and start a metastasis. If you choose to have a lumpectomy you are pretty much buying in to the radiation follow up. Usually, but not always, mastectomy means you do not have to do rads as there is a better chance alll malignant cells are removed. Assuming good margins, etc. But not 100%.
If you are post menopausal your ovaries are not a significant source of estrogen, maybe not at all. But you still produce estrogen from adrenal glands and fat cells. Pre-menopausal women do have oophorectomies (to remove ovaries) but it is not standard in older women (unless you are worried about ovarian cancer due to family history). Removing adrenal glands would be draconian I've never heard of such a surgery. You could never remove all your fat cells but losing weight is a good thing if you can.
LCIS may have different prognosis and treatment than IDC which most of us have and have been treated for. You might get more pertinent info on a thread dealing with LCIS. Ditto HER2+... I am pretty sure that raises other treatment options.
A nurse who works for the insurance company may lean toward less treatment... think how much money is saved if you don't do radiation TX. Mine cost $1000.00 a day for 36 days
And I think that is cheap compared to some of the chemotherapy drugs! If you are serious about avoiding radiation and hormone therapy you should read the natural girls threads where they try to find natural ways to prevent cancer from coming back through changes in life style, diet and exercise and vitamins and spplements... stuff like that.
The best our doctors can do is share conventional wisdom with us. None of the treatment comes with a money back guarantee. What we in this thread have going for us is that we are older and generally not dealing with an aggressive disease like some of our younger sisters.
I wish you could find a doctor who you trust and who would spend the time to explain your treatment options better.
Good luck
pam
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HI Gals! I have been AWOL in Boston where the stupid hotel wanted to charge me 20.00/day for internet. WHAT????? So I had a lot of catching up to do. GD, I had the Canadian Rads protocol (16 tx, higher dose). It was very do-able, but you do get tired around week 3. You and I have talked about my view on AI's so do not let my decisions affect you because WE ARE ALL DIFFERENT!
On a different note: My new avatar is a pic of Marybe and me from last weekend on Weston FL. I can't believe I met someone shorter than me (except my mom who is 4-9" and shrinking). We had a great time and will have another great time Dec 3-6 in the Outer Banks! Anyone who wants to come, PM me for details.
So while I was in Boston, I had dinner last night with redsoxfan (Muareen). We were rads buddies and we had a blast eating and having cocktails last night!
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I just listened to the tape i made when i went to the onc.this was before the last 6 nodes were removed.b9.i positive SN. she explained exactly what pam said except about the rads.she knew i didnt want them.yes she explained it to me but she didnt push it.only the Arumisin.only because the Arumidex almost ripped a hole in my stomach.NOT LISTED AS A SIDE EFFECT. I do like her very much.
I dont think she would approve of removing my ovaries but im still pondering that.and i will beat this thing to death.
Again thank you all for all your wonderful words.I know they come straight from your heart.I love all of you.God Bless
huggggggggggggggggggggs
K
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Now little miss Kantalope! I think most Doctors/surgeons, will give us Radiation because even though our lymph nodes came back clean, the Radiation will still kill any little cancer cells running around in there.....that don't show up....yet! The gals here have given you so much good information & advice....& most of us have BEEN through some type of Radiation. I don't mean you should get it...just think about it. It just takes up a lot of your time....And mostly you will get tired! That was the main complaint.
Mine went so fast with the MammoSite device, that I didn't get tired until it was over, like after 10 days! THEN everytime I looked at the couch or bed, I took a snooze! But it all went away. I didn't do chemo....& with your low Onco score, sounds like you don't need it either.....but there is no test we can take, to tell if we need Radiation OR the hormone therapy pills! We just DO it, because WE think it helps us keep cancer from coming back again. And don't go gettin' anything else removed.....You would have hormones even withOUT your ovaries!
But even if you DON'T get Radiation, we all still love you!
Sheesh, you drive me nuts! xoxoo0 -
Me. too, CB. {{{{HUGS}}}}} to GD!!!
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Grannydukes, I wouldn't presume to try to influence you in any way, but I'm nearing the end of rads (only 4 more to go--YAY!!), and I can tell you how it's been for me. I'll have 30 in all, and I must say that looking back the time has gone more quickly than I ever imagined. I'm only now getting some of the fatigue that's supposed to be a side effect, and so far that's been manageable with naps, and naps, and more naps. My skin is really red, but no blistering, no peeling yet, and no pain. My center doesn't do tattoos, so I get marked with a sharpie and those marks get covered by clear stickers. I just wear my "radiation bra" w/o underwires and don't care if it gets dyed blue or green from the markers.
The main thing that's bothered me is just having to be there every day. The treatment itself takes about 5 minutes and much less now that I'm getting boosts only. Mainly I have female techs, but there are 2 males (both nice looking but nothing like the hunk you have, HnS ! One went to high school with my son and that freaks me out, but he's okay. It's not pleasant to lie there all exposed in front of everybody, but after all this, I no longer have any dignity either. Never in all my life have my breasts been seen by so many, but all of us know how that is!
I see the rad onc once a week and he's okay, no Mr. Personality, but okay. I know a lot more now than I did at first and I just sort of accepted that rads was what I had to do, so I'm doing it. I never realized I could refuse to have them. Chemo was another story because I was dead set against that because of a devastating reaction my sister had to it, and the oncotype score freed me of that worry (yours was 10, right, and mine was 11).
Anyhow, it sounds like you're considering everything very carefully and I know you'll decide on the best course of action for you, because you're the one that matters. It's making the decision that you can be comfortable with that's the hard part.
(((HUGS)))
Kathy
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Oh Good Lord, and to think, I was just beginning to fall into blissful denial!! And then i read all of these posts and have no idea what anyone is writing about. I just want to stick my head in the sand and not know no mo' about any of this. A guy with cancer who was a potter, made his own cremation pot and the gang from Charlotte tried to scatter his ashes in Silver lake at the Ocracoke Jamboree-yup, they threw it off the pier-forgetting that it had a top made of CORK! So 'Bruce" floated back up to the top of the lake in front of everyone. OMG-could it get any worse than that?? This happened for real when I was at Ocracoke. Some kindly sea captain took it out to the ocean. God, I hope noone who knew him reads this!! And the gals are on their way to the OBX Dec 3 for the first reunion...OMG, I cannot believe it. xxooooo, SV
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Good to hear from all of you ladies, Barbara, another trip, another visit.. did youalways "get around" like this heeheelol Im getting really a pro at " stealing " these pics, ladies, so keep them coming, i have a BC>O folder with all your lovely faces, and names attatched to them. so, does that mean i can now taes names and kiss a****??lol i'll not be able to make the outer banks this yr. so am counting on you, Barbara, to post lots of pics. too much movin around for me in 3 days.. so, do it for me, you guys.. sorry beantown treated you so shabbily, great to see Redsoxfan, 'cause i been one forever! 3jays0
