Can we have a forum for "older" people with bc?
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Jo..I finished up with arimidex almost three years ago now and it took 1-2 years to have the effects slowly wear off...even now I get some of the muscle aches, especially above my wrists..
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Are there any post menapaulsal women who after dx of early breast cancer decided not to do radiation or taxmoxifin? I was dx with high grade dcis with ner- and decided against treatment after surgery. I was one of the unlucky ones whom in a year had a recurrence...although its still dcis.
I'm hoping it won't happen again before I'm 65, then I'll have Medicare and can afford a mx with reconstruction...if my next mammo is clear, I'm one happy camper.
I know nothing more than 2 lumpectomies..so all the med's and treatments are unknown to me. My bc surgeon is seeing me every three months. I'm almost 3 months from surgery, and hopefully it won't happen again.
It's too bad that we have to wait until we are 65 before we're given medical help. You can have it in our state, but when I pass away my family has to pay the state back with what I leave. So..I don't get treatment...and look for natural cures. But after research, I feel good about the alternative approach and I'm glad the $ force me to look elsewhere.
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Barry - you don't have any insurance? When is your next mammagram? My oncologist told me if I did not have a mastectomy I would then need radiation.
Are you having to pay for your lumpectomy yourself and what about the mammagrams?
What state are you from?
Damn insurance!
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Hmm, did I miss something here. I thought the ACS had resources for those without insurance but in truth I never checked into it as I go to the V.A. I thought I heard others ( in other parts of this blog ) speak about those things. Maybe I'm wrong....I at least am happy that you seem ok with alternative methods of care, but surely there is something for those who don't have or can't get insurance. I'll certainly be thinking of you Barry.
I have been on Arimidex for about five months now and seem to have very few reactions from it ---knock on wood. Sometimes I will get a sort of stabbing type pain, but it's not bad and does not last long. Have gotten those in both sides --- not just operative side. Now and then I will feel some warmth and when it comes....it sort of feels like you stuck your finger in an outlet but again it's only mild....noticeable but mild and is of brief duration. I do still have some foot neuropathy and clomp in the morning .... but all in all, I feel fortunate as nothing is so bothersome that I feel the need to concern myself with it
Susan....not trying to answer for anyone but Jan, Rita, and I are all from Illinois. Rita stated a thread ( Illilnois Ladies with BC ) and I have been there since I started treatment back in December 2007. I'm from southern Illinois....2 hours south of Rita and 4 hours south of most of the other Illinois ladies that are mainly in the Chicago area. As always it seems this darn disease either happens to some very wonderful women or sure brings out the very best of them -- I suspect both statments are true. I certainly believe that my association with all of them and all of you here certainly encourages better aspects of myself and I am very grateful about that. I think of everyone as being somehow better than me......but we are all uniquely ourselves in truth and in that regard just different which is good.
Having said all that I leave you with a hope that you all have some of the pretty sun that is out here in southern Illinois and that you have a truly fantastic Sunday.
Jackie
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In Oregon, you are automatically put on Oregon Health Plan (if you are not insured) when you are dx with bc. But, if you are dx after age 55...the condition is when you die, you pay them back...your house or whatever you own. If I did that then everything I worked for, to hopefully give to my children, would belong to the state. I would be basically living in a state house. Now if I was under 55 then it is all clear and free..I owe nothing. That doesn't seem fair. I wasn't going to owe anyone anything when I die. I guess its a matter of pride.
The Susan Koman foundation paid for my mammogram and biopsy. I am grateful for that. Seeing a rad/onc for a consult appointment cost me 1300.00 which I have not yet paid for.
I feel pretty comforatable with what I'm doing right now. I have connected with the alternative board but there are too many negative people harassing those of us who chose the alternative approach...so I looked for another thread for support. I feel that since I've chosen natural treatment I don't fit anywhere.I should just forget the whole thing and just move on. The only reason I stayed with the community board so far is because my last dx was 100% multifocal high grade dcis and I'm not quite sure the cancer thing is over...in a year I'll have Medicare.
Thanks for listening.
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Barry, I'm sorry to hear that people do not agree with your personal right to choose whatever you feel comfortable with regarding your own treatment. I was fortunate ( though some people may question that ) as having come from a very small town with very little work right out of high school I went into the service. It was an eye-opening experience in many ways but the point being that I qualified for veteran's benefits ( medical care ) through these long years afterward since I was 18.
A few months before I was diagnosed and right before I started treatment for a non-healing breast bruise we lost our Health Insurance. I was nearly in a hysterical panic before I recalled ( I never wanted to have to ask anyone for anything ) that I would more than likely qualify for V.A assistance......and they have been more than I could have ever hoped for and I even suspicion that I might in many ways be getting better care than if we still had our Bristol Meyers insurance.
I don't know about any of the other "seasoned" ladies here, but I for one applaud you for doing what you think is best for you. Many of us....for whatever the reason, may not feel alternative type therapies were for us.....in my case I had two different kinds of cancer....one non-aggressive and one aggressive so I wanted to hit it with everything I could......but in my heart I feel no one here would belittle you or be scornful of your choices. Perhaps it is because cancer just strikes the worst fear in some primal deep way that people are unable to be more accepting of something that apparently seems too mild in approach to them. We forget what one baby aspirin a day can do. Anyway.....please do stay around and post here please.
As well......here's hoping for a good year of sound health and then Medicare.
btw.....there might be a decent reason for it, but I for one think it's terrible to have to choose between health options on the basis of because you have cancer at a certain age you may have to give up everything you worked for all your life.
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I couldn't resist......I'm sure there are several "kathy's " here besides me!!!Do the hot flashes ever go away????
Barry, I'm also in OR!!! I don't have health ins either BUT we are raising a grand daughter so we qualify for the FHIAP program. (Family health insurance assistance plan) We pay a percentage of the cost of ins based on our income. We have Kaiser ins...
I'd love to stay and chat but laundry is calling......
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Same Q as TDbear,
DO the hot flashes ever go away? Or is this just something you deal with from now on?? I had periods regularly prior to chemo, but I am now at "post menopuasal" levels!!! I think I went through chemo and menopause at the same time!!! (May was well get it over with I guess). But still have the "flashes"....
Spring.
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Hi, I just joined this group. I was recently diagnosed by mammogram, had US bx which was positive for malignancy. I am having a "lumpectomy" on Tuesday (although there is no actual "lump" that anyone can palpate.) I have been recommended to have 34 radiation treatments starting in 2-3 weeks, and 5 years Arimidex.
I am 68 years old. I also have almost 20 years' experience in medical records cancer registration and cancer reporting. I now work for three pathologists, one of whom jokingly (or not) told me I probably know more about prognosis than he does.
Anyway, I am concerned about radiation and Arimidex. I had a hysterectomy at age 31, ovaries remained in place. My doctor told me some day I might have menopausal symptoms. As I said I am now 68 and never had any menopausal symptoms. So I wouldn't know a hot flash if it bit me in the neck.
Anyway, my medical oncologist told me Arimidex might be associated with osteoporosis, so I should probably have a bone density scan. Terrific! The Arimidex will leach the calcium out of my bones. What is the treatment? More calcium? Calcium so I can have my kidney stone problem exacerbated? Why does one treatment just lead to another problem?
Trying to keep my sense of humor about me.+
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Hi Cheyanne and welcome. Not much I can add here. I had lumpectomy, then 6 mos. of chemo so radiation was sort of a walk in the park. Worst thing was I had to stay in a motel thru the week to get the radiation daily....takes more time to get undressed and positioned on the table I think as the actual radiation application. If you follow their guidelines you should do well. They will suggest or give you creams and lotions to use which will minimize skin damage.
I have no real side effects from Arimidex ( I may be somewhat in the minority here ) but had a total hysterectomy a few years back. A warmth --- fairly transitory --- now and then. I don't think any se is for sure....for anyone, Your body just makes of it what it will. I also think Arimidex is one of the newer drugs and less or less severe side effects as some of the older meds I think. I was surprised when my oncologist said that was his recommendation for me...don't know why.
Will be thinking positive for you on Tuesday. Please stay in touch.
Hugs,
Jackie
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Welcome Cheyanne--No one (primary, onco, or surgeon) was able to palpate my tumor, so thank goodness for mamos and US. I had lumpectomy, SN biopsy, and port inserted during the same procedure- -I'm very glad I had the port put in.
Ah, "Seasoned Ladies": we could start a Chemo Flashers organization--our uniform could be trench coats emblazoned with the pink breast cancer ribbon. We might consider pink undies to wear under the coats?? I alternate between sweltering and freezing--pretty much like Missouri weather, now that I think of it. I hope the coming week is a good one for all--we'll get through this! Helen
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I am ER/PR+ and HER2-. I am fortunate in that I work at home and go over to the pathologists' office in the hospital 2-3 times per week. The radiation therapy facility is right across the street from the hospital. Hopefully I will be able to drive myself, hopefully I will be able to work (I only work 8-10 hours per WEEK.) Well I have to keep working, there is nobody to take my place so the only option would be to quit my job. I am NOT looking forward to radiation OR Arimidex. I do not know the cost of Tamoxifen versus Arimidex. Can anyone tell me? I am not at the present time having a problem with coverage for drugs, but it would be good to know.
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I have most emphatically told the doctors I do NOT want chemo. They are not advising it. I am skeptical enough about the radiation and Arimidex. I asked my surgeon, what if I cannot tolerate either radiation or Arimidex? He said well, I could stop. But will cross that bridge when I come to it.
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Barry - I don't get it. If you are under 55 years old you get on the state's dime for health insurance but if you are over 55 you have to pay them back? What kind of cockamamie system is that? What is the rationale?
As to hot flashes I went through menopause about 11 or 12 years before breast cancer. Never had a hot flash or mood swing. I hear the hot flashes are horrible as well as night sweats. My sympathies to those going through it.
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CheyanneWelcome to the club that no one wants to join!! But here you will find the best group of Ladies!! I also did not want chemo and was to busy to deal w/ rads EVERY day so I opted for a mast.and Tamoxifen ....almost 4 years down the road I found a lump on the mast site...Yup it was back with a vengeance! So I spent 2006 doing chemo and rads! It wasn't a walk in the park but doable.
I'll leave you this blustery evening w/ a poem my GD wrote in 2006
( she was 14, and we raised her since she was 3)
For every
Mother who has it
Sister who saw it
Daughter who got it
And everyone who fought it
For every
Man who cried
Brave soul who died
Woman who lost her hair
And endured "that stare"
For All
the pain
the chemo brain
the tears
Over the years, I've found
There is no way you could ever take this woman down!!!
I will Survive!
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Thank you Illinoislady for your encouraging words. I am not familiar with many of the treatment or meds you all are on. I hope only that it works for all of you and for complete recovery.
kmccraw423...it's a horrible health system and I think something should be done about it.
If I had invasive cancer, I would had bit the bullet and most likely done more. For now, its waiting and hoping it doesn't recur again before my next birthday.
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This whole insurance thing is a scam. I was laid off and on COBRA. At one point my ex-employer thought they would have to cancel all employee insurances. Fortunately, they must have gotten a contract because it didn't happen. However, I need to find another job, at age 62, or face a loss of insurance in November.
In the interim, when I thought I was losing COBRA, I looked at various plans. Because I had insurance for more than 18 months I was eligible for a HIPAA conversion where they would have to cover pre-existing conditions. Problem is they can charge you a pretty penny for that insurance with large deductibles.
I won't be eligible for Medicare for almost 3 years. Yikes!
Good luck Barry. I will not only pray for you but will keep all my fingers crossed!
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Hi Cheyanne...welcome. Just wanted to add my two cents about the radiation. Most of us have handled the rads pretty well. You just have to show up every day which is a pain but you're in and out in no time at all. My skin held out really well and so far I've had no side effects except for a build-up ridge of tissue around my scar area. It keeps getting narrower all the time. Hang in there. You will find the right plan for you.
Rita
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Cheyanne, I refused chemo and tamoxifen for my bc treatment but I did do the rads, my skin blistered a bit which I treated with silvadine, I had no fatigue, did not work outside of the home but was raising an active 2 year old at the time and caring for my elderly Mom. I agree with Ritajean, most annoying to go every day, I scheduled my apts for the 1st one of the morning and wore a pajama top with no bra. The techs called me flash because I was in and out so fast. Good luck hon, every one is differant, and it is all scary.
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Cheyanne, I did not have chemo because I had the OncoType DX test with a score of 5. I did have radiation, 33x....had no problems. My skin did not get burned or really even red. The rad techs were very nice and that made the procedure even easier. The biggest drag was going in every day. I was usually in and out quickly unless x-rays were needed or I had to see the rad onco.
When I saw my oncologist after finishing rads she had a prescription for Arimidex. I told her my co-pay would be $100/90 pills and I really didn't want to put out the money. Also I didn't like the side effects like bone loss, aching joints, etc. so I opted for Tamoxifen. This drug was cost free and I haven't noticed any SE...I've been on it over a month.
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I heard that for persons that lose jobs and go on Cobra, the gov't is going to pay 65% of the cost in this new "economic stimulus." Not sure if you qualify or if it is even in effect yet.
Susan B.0 -
This has absolutely nothing to do with anything, but could all of the Susans speak up? I
work in a very small school district (around 75 employees) and there are 7 Susans here just in the elementary wing. And, of course, I'm the oldest by far!
And Cheyanne, I agree, the rads were not bad. But, I had the IMRT, a three week course of stronger doses, and I think that made life easier.
Just have to let you know, when I was young and played cowboys, I was always the Cheyanne Kid!!
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yup lots of us old Susans around, is my best friends name also and we are both Susan Marie. my sisters name was Patti another common name I answer to still when I hear it. lol Mom used to yell Patti ! NO! Susie ! anyway get over here now!
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Right now, I'm going to have the lumpectomy tomorrow. I'm not real keen on the radiation, but I guess I will give it a try. I am really not keen on any Tamoxifen or Arimidex, but I guess I'll have to see when the radiation is done. I am not going to have any chemo. What is IMRT? That hasn't been mentioned to me.
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I guess the thing I am most concerned about with radiation is the possibility of fatigue. I get easily fatigued under the best of circumstances. I have a job, I work at home only 8-10 hours per week, but have to go to the office at the hospital 2-3 times per week, post office 2-3 times per week, bank less often. There is no one to take my place if I can't work. The only option I would have would be to quit working altogether and I'm not ready for that. I really dislike the idea of being on a pill for 5 years, especially one that could have side effects of weight gain, or bone loss, or aching joints, or whatever. I told my surgeon I will give these things a try. He told me if I can't tolerate some of this stuff I can quit.
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Cheyanne - It really is doable. Even for us older folks.
I'd get depressed when I'd read how some of the gals were training for marathons, etc. while going through treatment and I was glad to curl up on the couch after treatment! However, they were young and spry!Yes, some do experience fatigue that changes their usual routine, but, I think most of us were able to muddle through. I got bone tired by the end of treatment, but I was teaching kindergarten mornings and driving 1 1/2 hours to treatment every afternoon. (And, is the most challenging class I have ever had! They wear me out even without rads!!)
IMRT is intensity modulated radiation treatment. Usually 15 treatments, higher dose.
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Hi, everybody. Guess I qualify as an older lady at almost 63 in a couple months. So, if you don't mind, I'll join your forum. It never occured to me to look on the internet for support groups, but in looking for something bc-related, I found this site. I, too, have had a lumpectomy, an expanded excision, and finally a right mastectomy done. Then, 4 cyles of cytoxin/ellance and am in my 6th treatment of 8 of taxol. I found the insurance question interesting, as I had gotten married in Oct. 2007, had a car wreck a week later, and finally had to quit work in January 2008. Was diagnosed with DCIS, plus 2 lumps, and finally LCIS in June 2008. Scared me to death, as I had no insurance and my husband will be 74 next month. But I found out that Medicaid pays for breast cancer 100%. At least, in Texas it does. Since that is a Federal program, I wonder, Barry, if that wouldn't be in effect in Oregon, also? Incidentally, I do not have to take radiation, but I will have to take 5 years of pills - which I know nothing about. Won't find out about them until April 20th at my next onc ov. In the meantime, I have 2 more chemos to live through!
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Swindham, Here's the deal in Oregon..if I were to go on Medicare...I couldn't work...and for now I'm the breadwinner. My husband retired early...so I can't afford not to work. A counselor from the hospital spoke with me about all this, and in the end...anyone 56-64 can be covered, BUT when they die...those HUGE cancer bills have to be paid back.
So if you are under 65, healthy, own a house, business or whatever ... when you die, it belongs to the state. The counselor said, isn't your life worth it? I said, its not fair that those 55 and under don't have to pay back the state. I said to him that for me it wasn't a life and death situation...although later on it could be if it were to become invasive. So...I did another lumpectomy and like someone said, keeping my fingers cross it won't recur and it does not before I'm 65.
But I wonder why the state decided women 55 - 64 should pay back the state. Something is really wrong with this.
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Hmmm, I am still a little baffled about all of this WHILE continuing to feel such irritation for you Barry. I always assumed....that you could work and be on Medicare at the same time. My Mom did it in California ( years ago though ) and my husband is doing it as we speak here in Illinois. I have always seen pictures of Oregon and thought it was such a pretty state but it sure is standing out to me now....and not for the beauty. I guess I take a little umbrage at the statement of your life being worth it....because even though it is, I don't see that as the issue. How much would the state really get......and why would they want to be land owners/property managers/ and the like. In other words....if I had the same sort of situation as you.....and I opted to sign away my house to them.....I feel certain I'm already way over what they could get out of my little 1500 sq. ft. house---well, I give up, but got to feel was there a legion of cpa's and others working out the make-break points to find that 55 was it. Just very unfair to have to deal with this discrimination when you have ( in so many cases ) an actual life and death....either-or situation and the mis-fortune of being 55. Isn't it bad enough to find out you have cancer. Jeesh !!
Welcome Sharon...glad you are here. Though we wish you didn't have to come for the reason we are all here....there is always room for one more.
I'll be checking back before I settle into my recliner for the rest of the night.
Jackie
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Well, I'm not going to be training for a marathon. Ever. And I am lucky, I only have to drive 5 miles to get to the hospital/radiation center. So I guess I will just have to try it out and see what happens.
By the way, my real name is not Susan, but it is Sharon. I hated my name when I was a kid. Didn't know anybody else with my name. Then I got to high school and found that Sharon was one of the most common names. My mom wanted to name me Susan, though, and she was talked out of it. So she called me "Susie" anyway and I hated that too.
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