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Can we have a forum for "older" people with bc?

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I am an "older" woman with breast cancer (I was diagnosed at 65 and am now 66).  I notice that most of the posts seem to be from people younger than I am (often by quite a bit...).   I'd love to "talk" with others my age, exchange info about their diagnoses, effects on their lives, etc.   I see that there is a forum for young women.

Someone suggested that maybe it's that older people aren't so computer-savvy or aren't used to being in online discussion groups.   However, for those who are, it would be great. 

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  • klp
    klp Member Posts: 1,454
    edited February 2009
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    Hello Northstar

    I'm an "older" woman that was diagnosed in October of last year...I am 73. I'm retired and spend a great deal of time on my computer. My dx is below.

  • carol1949
    carol1949 Member Posts: 48
    edited February 2009
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    Northstar,  I am 59 and I enjoy the chat room, which you might also enjoy.  It has ladies of all ages and I am certain some are older than I am.

    Though, I know there are lots of people that use the suggestion boards.... perhaps some of the younger people use them as it is more convenient due to work, families, etc.

    Try coming on the chat room some evening.  People are normally very welcoming and you will get that hang of it soon.

    Regards,

    Carol

  • Sierra
    Sierra Member Posts: 180
    edited February 2009
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    Hi

    I was just thinking this

    and wish they would have one

    I am older too, a young Senior

    shall we say

    Lets hope, shall we

    PM me any time

    Hugs, Sierra

  • samedaynurseJan
    samedaynurseJan Member Posts: 162
    edited February 2009
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    Hello to everyone......this board is a nice idea even if it means we have to identify ourselves as being *older* I just turned 60 a few weeks ago.....my birthday present was my bc and the surgery and radiation that followed....Im back to work full time doing ten hour shifts almost none the worse for the wear....sometimes I get a bit exhausted but wonder if I didnt do that before my diagnosis to....Im taking Arimidex and hoping to just poo poo any side effect that comes my way and enjoy this little insurance policy for the next 5 years hoping there will be something else to offer by then or perhaps another five years on Arimidex.

    Rock on Kathleen.....and by all means get the best new breasts you can get !

    jan

  • kmccraw423
    kmccraw423 Member Posts: 885
    edited February 2009
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    I say "Baby Boomers Unite!"

  • klp
    klp Member Posts: 1,454
    edited February 2009
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    My onco wanted to prescribe Arimidex but I told her I would have to pay $100/90 pills. I asked if I could go on Tamoxifen, and she agreed. Other people I know have taken Tamoxifen for 5 years and then went on either Aromasin or Arimidex later. If Arimidex goes generic I will most likely take it after 5 years of Tamoxifen. So far I've had no SEs with Tamoxifen.

  • samedaynurseJan
    samedaynurseJan Member Posts: 162
    edited February 2009
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    So far I have no side effects whatsoever from my Arimidex.....I know that some people say they dont come along until you have been on it for several months, but, I have a couple of friends who are much further down the Arimidex road than I am and are practically side effect free except for some joint pains. My tumor was 98% Estrogen positive and 87% Progesterone Positive so I am thinking the Arimidex is the best insurance policy I can get my hands on.

    One of my biggest concerns right now, esp in this economy, is keeping my job and my benefits, we Baby Boomers who are not yet 65 fall into that terrible category for getting any kind of health insurance in the years prior to Medicare without working for a fairly large company and now of course we have the *black stamp* of bc next to our names.....my file from bills for this surgery and treatment is HUGE, never having a health issue before , even as a nurse I didnt realize what even a *non complicated* bc costs. I actually wrote letters to the President and my own congressmen about my opinion on the health care stimulus objectives because they dont do anything to help me or other people in my situation, even though most of us have contributed to the system our entire lives.....*oooops, stepping off my soapbox*

    Have a great Sunday everyone !

    jan

  • klp
    klp Member Posts: 1,454
    edited February 2009
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    I had heard recently about Arimidex going generic...not sure the source. My onco did mention an assistant to help pay for Arimidex but after hearing about all the SEs I opted for Tamoxifen.

  • GramE
    GramE Member Posts: 2,234
    edited February 2009
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    I am glad you started this thread.  I had my 63rd birthday in January, have been widowed almost 6 years, and have made a lot of changes in the past couple of years.   Sold "our" house after being there for 36 years and moving to be closer to my one and only son.   I was dx 3 weeks before my son's wedding.   

    The insurance issue is one I can get on a roof top to spout off about.   I quit work when my husband became ill and never went back.  Because of my "resources" I do not qualify for anything free.  Even with what I thought was a full medical coverage policy, I was denied MAJOR expenses.  I then found a new policy, which is expensive, but cheap in comparison to what I would have to pay for one treatment, scan, or lab work.  

    I am ER/PR negative and Her2 positive.  Anyone else out there in the "older" section with the same?       Nancy 

  • samedaynurseJan
    samedaynurseJan Member Posts: 162
    edited February 2009
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    Hi Nancy,

    Im so sorry for the loss of your husband.....I too have just one son, my story is a little different from yours but similar, my husband fell off a roof at work in 2001 and had multiple serious injuries, I went back to work full time out of necessity and we sold our house of 32 years , moved to a Townhouse to be closer to my son who had been married a little over a year and was expecting his first child. I am still and always will be the breadwinner and benefit carrier.....so it scares me to death to even think of being *sick* for any length of time. I would be interested in knowing what kind of policy you got and how

    I think there is a woman on our Illinois chat board who is our age and ER/PR negative and Her2 positive , I will check on the board to see if Im right and then I will ask her to put in a post over here , unless of course Im wrong :)

    Smiling at the word *resources* and nothing being free.....and completely understanding. I am very much a *do something about it* person and if I knew what to do about correcting the health care situation I would.....I orchestrated all my surgery and radiation treatments in record time but when you are up against a brick wall it really doesnt budge.

    We now have 3 little grandsons.....who I very much intend to see grow up....the baby is 2 today so we are off for birthday cake and party....

    jan

  • Pattyb0639
    Pattyb0639 Member Posts: 5
    edited February 2009
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    I am also a "young older" (age 55) and I think it would be great to have a forum for those of us 50 and older.  Kathleen, I noticed you are from Ashburn, Va and so am I.  We moved here in July 2008.  Would love to get together if you are interested.  I love the testicle remark!!Tongue outPatty
  • GramE
    GramE Member Posts: 2,234
    edited February 2009
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    jan:  I used an insurance broker who has the ability to hook you up depending on various factors, including where you live.   I am at a major disadvantage being "single" and cannot hook onto a spouses policy, which I am told would be significantly cheaper.   And I think this plan is no longer available to new people since the first of the year.   

    I am in Alexandria, VA.   Anyone like a trip to Old Town for the farmers market and stroll around the town?   I think they start the first Saturday of April, but they close up shop around 10 am -- start at 6 am -- an EARLY event or way to start the day.    

  • mikita5
    mikita5 Member Posts: 60
    edited February 2009
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    Hello. I, too, am in the 'older' category. I would love chatting with other bc ladies.  I think it's sad, but I think my family is tired of hearing about bc. When I was diagnosed, everyone was so wonderful. They called, showed concern, dropped by....the whole works. Now, the only person who calls in my daughter in another state. My sister who was supposed to be my rock, may call once ever 2 weeks. Hubby, when he heard me telling a friend on the phone that I was thinking about the rest of a hysterectomy (had ovaries out in Dec '08 but not cervix or uterus), yelled "why don't you just take off your arms and legs too.....they could get cancer too".  He has no idea how that hurt. I've decided not to talk to him about it anymore. If he wants to know anything, he will have to ask.  THEY JUST DO NOT UNDERSTAND. 

    BTW, I am 56, I'm in West Va. Wondering if I have any close neighbors??

  • klp
    klp Member Posts: 1,454
    edited February 2009
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    Hello Mikita

    What a horrible thing for your hubby to say to you...gee now I know why I'm not married anymore. When were you dx? And how is your tx going? Sorry you're not getting the support you need. This BC board is here for your support...great people.

  • mzmiller99
    mzmiller99 Member Posts: 220
    edited February 2009
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    Add me to the ranks of moldy oldie!!    I'm still teaching kindergarten, but getting so ready to retire.  Darned economy.

    Lefty - If you hadn't posted here, I'd never have known that we were boomers, although, you're older...na na nanana!  I'll be 63 in Nov.

    Mikita - I know what you mean about not wanting to talk cancer with the family...or friends, for that matter.  And, as rude and thoughtless as your husband's remark was, it made me laugh - just a typical male response. 

    It doesn't seem possible that we youngsters could be this old!  How did it happen? 

    My daughter tells me that I'm lucky that I got cancer at this age, because now it's "old lady" cancer.  Meaning, of course, that it is generally easier to treat and less aggressive.  As a women;s health practioner, I hope she's a bit more sympathetic with her own patients!!

  • karol61
    karol61 Member Posts: 36
    edited February 2009
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    Hi,

    I'd love to talk to other BC survivors in my age group. I turned 61 today. Hope that all of us "elders" are well. Talk to you all later.

    Karoline 

  • karol61
    karol61 Member Posts: 36
    edited February 2009
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    Sameday nurse: Keep up that stance on your soapbox all you want Cool
  • kmccraw423
    kmccraw423 Member Posts: 885
    edited February 2009
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    Karol60 - Happy Birthday!  Contact me anytime you want to talk.

    Mikita- I know exactly what you mean.  Boy do people run out of patience fast!  They may have heard everything before but they don't live with it every second of every day.

    Patty:  I sent you a PM.

    Lefty:  I am up for a trip to Old Town in April.  We can finalize plans when it gets closer to Spring.

    Insurance:  Errrrrrr!  I was laid off and on COBRA.  My old employer did not get some contracts they were counting on and were going to cancer all employee insurance.  Thank God they got enough revenue in to avoid cancelling the insurance.  But you are right, there is nothing out there if you are not 65 and not already insured.

    Good night ladies.  Stay strong!

  • mrscrj
    mrscrj Member Posts: 4
    edited February 2009
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    I too am a seasoned  woman. The package is 61 years old, but the contents are ageless! As the saying goes.. that's my story and I'm sticking to it!

    The subject of insurance is a very frustrating point for hubby & me. He was retired in 2001 after over 30 years with the assurance there was an "annuity" that would cover all of his BCBS insurance until he reached 65 and I would have the same coverage for a very modest monthly payment less than $300 mo. It was one of the reasons he stayed with the company and put up with a lot of stress and frustration. Well, after a couple of years, the company realized this was costing them too much (several had been "retired") and they phased down the amount they paid. When hubby asked about the "annuity" that had been in the neighborhood of $45K, he was told the company originally used the wrong word and it was no longer there. We are permitted to continued to get the coverage at a rate of $1555 for both of us monthly.

    Even though the payments take his monthly SS chk plus some, it was a blessing when the BC was found last year. So far, the total amount billed to the insurance company is over $220K, by the time they did their magic with write offs and all, we were only expected to pay a total out of pocket of $4K. We did end up paying about a thousand over that because of confusion about co pays, but should be getting most of that back. 

    So, it's been a good news, bad news kind of thing. Writing the monthly check reminds us how the company basically misrepresented the situation but I'm so thankful we had it when we needed it. And can only hope and pray the "let us" continue to keep it until each of us reach 65. 

    If anyone is wondering, the retired employees couldn't bring any lawsuits because they were required to sign a release to not take any legal action when they were retired (laid off). 

    One good thing is that the Lord has provided the income we need to make the insurance payments every month!

  • GramE
    GramE Member Posts: 2,234
    edited February 2009
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    Happy Birthday, Karol.  Welcome to everyone else.  Susan, old lady disease... my onco said since it took me 62 years to get this, I could live to 100.  AND, my mom is going to be 96 in April - she is a 47 year BC survivor, had bi lat mast back in 1962.   

    I fear what will happen with Medicare once I reach 65. BTW, by the way, my last "amount due" was $ 18.60, for over $18 K worth of treatment.  

    Have you all had surgeries?  I had lump and SNB in December, after 16 rounds of chemo.  Herceptin is every 3 weeks with my latest tx last Thursday.   HUGS,  Nancy 

  • samedaynurseJan
    samedaynurseJan Member Posts: 162
    edited February 2009
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    Morning everyone and happy birthday to Carol......

    So far no one has responded to me on the Illinois board about being HER2+ but last night was Oscar night so that could explain it......

    I had a lumpectomy and SNB in Dec of 2008 also followed by Mammosite Radiation which turned out to be a blessing so that I could get back to work quicker, one week of being on a crazy and exhausting Merry Go Round but then it was over. I still have the Mammosite created cavity in my breast which takes quite sometime to heal and I wonder how that affects my first Mammogram which comes up in June.

    My grandma also had bc.....and died at 96 of a blood clot to the lungs nothing about her bc ever came back.....I have a cousin who is a 15 year survivor and moving forward.....I figure at my age....if I can get a 30 year survival I will be one happy camper.

    Taking my husband for a small surgery ( we gage them all as big or small :) today......have a happy Monday !

    jan

  • kmccraw423
    kmccraw423 Member Posts: 885
    edited February 2009
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    Gosh, it is great to hear about women surviving until their nineties and beating breast cancer.  My grandmother had breast cancer when she was 40.  I don't remember much about it because I was a little kid but she died from a hospital infection 40 years later which had absolutely nothing to do with her breast cancer.

    Mrscrj:  I loved your opening line.  If you don't mind, I am going to use it!

  • GramE
    GramE Member Posts: 2,234
    edited February 2009
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    If you want to keep this thread in the Active Topics list,  just post "bump" and it will go up to the top of the list. OR you can check the box  and add to your favorites.   When you log on, it will appear in your favorite topics.   

  • klp
    klp Member Posts: 1,454
    edited February 2009
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    I don't remember getting hot flashes where I was really bothered by them even when I went thru natural menopause at age 50...

  • klp
    klp Member Posts: 1,454
    edited February 2009
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    No Jo my onco wanted me to take Arimidex but because of expense we went for Tamoxifen instead. I can't imagine now getting hot flashes more than 20 years past natural menopause.

  • GramE
    GramE Member Posts: 2,234
    edited February 2009
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    No hot flashes here in  a LONG time - maybe  10 years ago.   I did not have Arimidex.  I like the term "seasoned", gonna use it instead of "senior citizen".   

  • PaulaLS
    PaulaLS Member Posts: 21
    edited February 2009
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    Glad I found this thread.  I was almost 62 when diagnosed, and have believed I have different issues than younger women who are diagnosed with BC. I was diagnosed 12/12/08. After getting a second opinion I had a mast 2/11/09 with SNB and immediate reconstruction with silicone implant and alloderm sling.  I am healing slowly, feel pretty good, am looking forward to getting my second and last drain removed tomorrow, and wondering when I will be able to return to work.  I feel like I gotta keep working due to insurance coverage (I am so glad I have it) but would love to retire.  My husband has been wonderful, supportive and caring throughout.  I know I am very blessed, but still occasionally whine.  Are there any "older" ladies out there with similar experiences?

  • samedaynurseJan
    samedaynurseJan Member Posts: 162
    edited February 2009
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    This is so very good.......I feel so in touch with each of you !

    Paula, you and I had our surgeries on the same day.....12/12/08....wondering why they suggested a mastectomy for you....location ? and JO how comes they did a full axillary node dissection ? You know, we try not to second guess ourselves , and I was very confident in all my decisions but you do wonder what formed other peoples decisions.....

    I too would love to retire and play with my three little grandsons more but the health insurance is like a huge neon sign in my head flashing 24/7

    My husband has been amazing throughout all of this.....totally my rock maybe our *seasoned* marriages have a hand in making that happen .....he changed disgusting dressings and cried with me and for me and really never left my side throughout the worst parts of this journey. Now that the worst is over things are more *normal* whatever that means, but we have a new closeness that will never change. He and I went to High school together......

    I am on Arimidex and so far am experiencing NO side effects at all....I didnt have many hot flashes when I went through menopause, in my line of work, I meet a lot of women my age who are on Arimidex and most of us who are post menopause seem to have more of the joint and bone pain than the hot flashes....Im prepared for that and Im religiously taking the supplements that were suggested to me by my Drs.

    A good friend of ours just lost his wife to her bc.....but the fight and the story are good....she was diagnosed in 1977 had her mastectomy and her chemo and her rads and had no reoccurence whatsoever for 26 years....her reoccurence was treated successfully for another 5 years and that all started back in the days when there was one surgery and one chemo and everyone got it no matter what. I believe we live in the age of good things......and this thread, will be a very good thing :) DH did well with his surgery this AM......back to work for me tomorrow

    jan

  • moderators
    moderators Posts: 8,065
    edited February 2009
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    Hello All, 

    I like the idea of having a forum for "older" people, however, I am concerned about setting this up for a number of reasons:

    1. many people on the boards are "older". That is, how to define "older"?

    2. We have soooo many forums as it is, that we aren't too keen on the idea of adding to the long menu.

    3. We want people to find others who are in a similar situation (breast cancer diagnosis, age, background, where they live), but worry about having simply too many categories.

    Your ideas/feedback are welcome.

    Thanks, 

    Melissa