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

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  • samedaynurseJan
    samedaynurseJan Member Posts: 162
    edited February 2009
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    I think......that the response to this thread in a mere 24 hour period shows there is a definite need and want for a forum of this nature and there are more than just a few interested, and I feel even more will join in as it becomes more well known. As far as what the *age* limit for old should be.....anyone who wants to consider themself *old* or interested in the things we are discussing certainly can.....I tried looking through the other forums to see if one or another isnt used but all have some following and therefore are important to someone.....I hope the Administrators will give this one some thought and come up with an idea that makes everyone happy, even if it means we just have to continue on this thread

    jan

  • samedaynurseJan
    samedaynurseJan Member Posts: 162
    edited February 2009
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    Thanks for the explanation Jo.....it all made a great deal of sense , when I had my surgery, my surgeon told me that if my sentinel *nodes* showed any carcinoma of any kind that she would proceed with a complete axillary dissection right then and there and that it would add another hour to my surgery.....as it was my family waited 45minutes for the sentinel reports to be finalized.....I too had a good sized area of tissue removed in hoping for clean margins first time around and also got them, you also need a certain sized cavity for the Mammosite insertion to be *good* I would think the amount of fluid you had collect post op did have something to do with that number of nodes.

    How long I can take Arimidex is on the top of my list of questions when I see the Oncologist next month....I am 98% Estrogen positive and I would like to continue on it for as long as its safe and for as long as it works, although I say that now while I am SE free , I do however know people who have sailed through 3-4 years already with minimal SE and Im hoping that will be me. Have you made any dietary changes or eliminations in an effort to reduce and estrogen increase ??? Do you do specific supplements ?

    Its all this big circle of events that you have to try to stay in control of but sometimes you wonder....get well....fight every day to stay well....sooooooooo that you can work and keep your health insurance and not find the whole thing so stressful that it ultimately affects your health again *whew*

    I didnt even know that people were allowed to stay on Arimidex beyond 5 years.....thats very interesting to me.....

    I dont usually have this kind of time to devote to posting.....but Im enjoying it today :)

    jan

  • klp
    klp Member Posts: 1,454
    edited February 2009
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    My BS said similar...if any nodes turned out positve then the surgery would be more involved and take longer. Also would need drains. Thank heavens for me that wasn't the case. She removed 2 nodes, both negative along with tumor and clean margins. I consider myself very fortunate. Surgery was easy and I healed quick. And the breast looks the same as the other one..scar underneath that you can't notice. SNB scar is also very faint now.

    Is Arimidex now the gold standard for post menopausal women? My onco didn't have a concern prescribing Tamoxifen for me when I mentioned the expense of Arimidex. It really wasn't the fact I couldn't afford the drug but concerned mainly with the SE that went along with it. My bones are good so far and would like them to remain that way. 

  • kmccraw423
    kmccraw423 Member Posts: 885
    edited February 2009
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    Bump

  • PaulaLS
    PaulaLS Member Posts: 21
    edited February 2009
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    Hi Ladies, Thanks for the replies.  I still have one drain but it should be removed tomorrow.   I know I will feel much better getting that out.   Jo, thank you for the nice words about the photo.  I was showing off my Steelers scrub top (whoops - I see you are from OH - a Brown's fan maybe?)  Samedaynurse - are you a nurse?  I am a school nurse but admittedly not a very bright RN when it comes to breast cancer.  I chose the mastectomy route due to having one area of IDC and a second area indicating atypical LH.  I would have had to have two lumpectomies (with questionable cosmetic results) for those areas so chose the mast (2/11/09) hoping to avoid the rads also.

    It is good to hear that others have supportive husbands.  Mine is cooking dinner now.  I am getting quite spoiled.  I am sure thankful for him! 

  • crazy4carrots
    crazy4carrots Member Posts: 624
    edited February 2009
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    Jo and Jan:  I agree completely!  We post-meno ladies do have some different concerns, chief among them (I think) would be what the lack of estrogen is doing to us, now and in the long run.  Osteoporosis, high cholesterol, bp and diabetes concerns for example.  I sure don't want bc to return, but I also worry about the long-term effects of AI's; my onc says that, for  the forseeable future, I should remain on Femara. I do want to hear what the rest of you are doing, and how you're handling everything.

    Let's either keep this thread going, or else start a new forum for Post-Menopausal BC.

    Cheers,

    Linda

  • mikita5
    mikita5 Member Posts: 60
    edited February 2009
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    ...if any nodes turned out positive then the surgery would be more involved and take longer. Also would need drains.  When having a mammo, do you only get drains if the nodes are positive??
  • anondenet
    anondenet Member Posts: 261
    edited February 2009
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    I had cold flashes. I don't know if that was post meno stuff or low thyroid.

    My grandmother was diagnosed at 70 and would not let them operate. She had a boyfriend and didn't want to lose a breast for him. So she did nothing. Refusing treatment may have been more common in her generation when mastectomies were automatic.

    In later years, I visited her in the nursing home where she developed dementia and died of a stroke at 86. We can only guess that the the tumor was slow-growing or no growing. I don't know if us older ones are less likely to have aggressive disease.

  • GramE
    GramE Member Posts: 2,234
    edited February 2009
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    Melissa and Moderators, as you can see, I have made many posts on many threads, but THIS one is at the top of my "concerns" -- age or "older" person things.   I was a host on a grief recovery website and we had 3 distinct groups for widows - Over age 50, Under age 50, and general widowed.   

    It may not be necessary to set a specific age for "older" and no one is going to ask for ID if a person appears to be "young".   There are those who may have a mother, aunt, grandma, or wife who falls into the older group.    

    I had a very interesting conversation recently with a woman in her 30's.   She said her life expectancy is 40 + years, where mine is 20+ years.   Kind of puts thing into perspective when one plans for the future.   Just a few thoughts on making this a separate topic.

    Nancy 

  • mzmiller99
    mzmiller99 Member Posts: 220
    edited February 2009
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    I so agree about the many other forums!  I bet we'll have a plethora of seasoned women joining us. 

     I'm looking thru the forums wondering if there are any young, single, African-American, gay men, with LCIS, who have just had surgery and are waiting for results.  WinkHmmm, guess I'll just say good night!

  • mandy1313
    mandy1313 Member Posts: 978
    edited February 2009
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    My aunt was diagnosed in the UK at age 91. Because of her age the medical system  did nothing at all. She is now 100.  (and yes, she did have a wonderful birthday and received a card form the Queen).

    I am an "older" person and some of my concerns such as already high cholesterol may not be the concerns of our younger "sisters".   There probably is a need for this forum but I wouldn't close it to anyone....you never know what we might learn from anyone.  I think "Older"breast cancer patients would suffice as a name.  

  • binney4
    binney4 Member Posts: 1,466
    edited February 2009
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    Hi, all,

    Enjoying this new thread, and hope it'll turn into a "place of our own". I was diagnosed and treated in 2001, then five years on Arimidex. My oncologist then switched me to Femara. I did okay on the Arimidex, but the Femara really did me in, with major joint aches and depressing hair loss, etc. So we had a talk, and since my percentage of ER positive was low (17%) we decided to quit it. There really are no studies showing what the ideal time to stay on them is yet. And of course while they feel like a safety net there's no guarantee they'll keep you cancer free. Also, he told me that if I kept my weight down that would help reduce estrogen production also. Sooo...working on keeping my weight down. Which is actually somewhat easier now than when I was on the AIs (it kept creeping up despite all my efforts -- very frustrating!)

    Anomdenet, I love your story about your grandmother. Good for her!

    Paula, I too chose mastectomy hoping to avoid rads, but the tumor was too close to the chest wall so I had to do it anyway -- very hard adjustment for me, as rads scared me more than chemo. Well, heck, the whole thing's plain scary!

    Anybody else dealing with lymphedema?

    Be well, all!
    Bonnie

  • klp
    klp Member Posts: 1,454
    edited February 2009
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    No lymphedema here...so thankful for that!Smile
  • samedaynurseJan
    samedaynurseJan Member Posts: 162
    edited February 2009
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    Evening to everyone.....what a great response this thread is getting !!!!!

    Paula....I am indeed a nurse, full time in the Recovery Room of a very busy surgical center , and also not particularly brilliant about breast cancer. Up until my own diagnosis, my grandma and my cousin were my main sources of information and that was really very little. Now Im turning into a walking talking bc text book and Im not sure I really like that either....actually , like all of us, I dont really like anything about any of this, to quote my 3 year old grandson " Its stupid....I HATE IT !" and age has nothing to do with that part, does it......That IS a great photo Paula , we are all young at our ages now.....and having bc isnt going to change that, yes ????!!!!!!

    I agree that anyone from any thread anywhere anytime should join us and read and ask and talk for anything we can help with just as I would go to other threads if I were looking for something specific......I have read some of the hormone boards about Arimidex but decided to come to my own conclusions.

    Here is some of what I know from my own Drs about the Arimidex......if you start your therapy with a strong normal Dexascan you have a much smaller chance of bone loss.....if you start with osteopenia or osteoporosis the concerns and precautions are much greater. I have a normal Dexascan and so I was advised to take Calcium 1200mg, Magnesium 500mg, Vit D-3 1000U plus fish oil and I have added glucosamine. This should offer me enough protection to stay out of bone loss danger.....actuality remains to be seen but I believe it. Fish oil and diet should help cholesterol......and weight, well, I am going to struggle with that forever anyways so I will just work a little harder.

    *giggling* a little at mzmiller.......

    I got a statement today.....insurance pending for treatments......very healthy six figure number.....enough to raise my stress level LOTS.....going back to the gotta have insurance issue, and now gotta hope it pays. Did any of you have Mammosite ? what makes Femara harder than Arimidex, does anyone know ?????

    be happy, be healthy

    jan

  • klp
    klp Member Posts: 1,454
    edited February 2009
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    My Dexascan in June was better than the previous one a few years before that. I had the D3 test and I scored a 74 so my Vit. D level is very good. I take calcium, fish oil, glucosamine, COQ10, folic acid, B-complex, C and D..I'm sure there is more but that's a start. I also walk my dog every day and go to Curve's 3x/week for a workout...

    I guess so far I'm the oldest one on this board...bully for me..heehee

    I had 33 radiation tx but no Mammosite..going tomorrow to rad doc for checkup. I had no burning, redness or anything from the radiation.

    I feel very blessed to go thru this breast cancer experience without problems. When I read and hear about others especially the young ones it makes me very sad. 

  • Marple
    Marple Member Posts: 10,154
    edited February 2009
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    Hugs klp.

  • swimangel72
    swimangel72 Member Posts: 142
    edited February 2009
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    Hi - I love the idea of this forum for women who are naturally post-menopausal. I'm 54, was dx'd last year at 53 and was postmenopausal from the age of 48. My oncologist put me on Arimidex - and so far, no real SEs (since last September).......originally I was very vocal against Tamoxifen because I read it increases your risk for endometrial cancer - and I already had a thickened endometrium. Seems the Arimidex has also solved that problem - which is a GOOD SE! I'll be finishing my Herceptin tx's in April - yay! but still have to go through Stage 2 of my free-tram reconstruction and also opened abdominal surgery in July to repair a very large hernia (the result of the MRSA staph infection I got at the hospital last year.) At that time they'll also be taking out my gall bladder - so while I'm not very worried about a cancer recurrence as of now, I'm extremely worried about getting another MRSA infection during these surgeries! MRSA kills more people in the US than Aids..........and the CDC and hospitals are NOT taking it very seriously! Sorry to get on my soapbox about this everyone.......I'm happy to be part of this forum!

    Bonnie I also ended up with Stage 1 lymphedema in my right arm - it started with painful cording which was only relieved when I found a certified LE therapist. She was wonderful - fortunately my insurance paid for everything (but not for my sleeve for some reason.)

    My DH has been my rock - and also my comedian! He makes me laugh and that has been the best medicine for me! Also my kids have been so wonderful - without them I'd only be half the person I am now. I have two daughters in college and a 16 -year-old son. He's my "movie-buddy" since my DH isn't fond of the movies (he gets too sleepy). I saw the Dark Knight with my son - and I can see why Heath Ledger got an Oscar - he truly deserved it  (may he rest in peace) even if I wasn't crazy about the movie itself - too much plot, too many characters and too much action.

    Talk to you all later!

  • samedaynurseJan
    samedaynurseJan Member Posts: 162
    edited February 2009
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    A Quick note before I retire the computer for tonight.....

    I truly hope Administration keeps an eye on this thread.....sees how we have all flocked to it....how positive and welcoming this group is and will be and reconsiders a thread for us under any name they choose to give us.....I was hoping that with the demise of the Political threads there might be room for us now.......if not, we can make ourselves very much at home right here.

    What a great group of women.......

    SwimAngel.....I so sympathize with your experience with MRSA....its one of the best reasons I have for working where I do and not at the hospital anymore, dont be afraid to speak up as to what you expect from your health care workers we are all expecting to hear it now...and should. My mom got C Diff on her last hospital stay, another hospital friendly infection.

    Kathy....Im with you about feeling blessed....totally.....scared still....but blessed for sure.

    Nite nite

    jan

  • Sierra
    Sierra Member Posts: 180
    edited February 2009
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    Hi Gals:

    wow, nice thread and nice to see a few mature sisters

    I still get hot flashes at night

    and as for the cold.. I live in Canada

    and have to wear nearly 3 scarves.. I really feel

    the cold a great deal now

    best to all wherever you are on the path

    Sierra :))

    ps.. Can any of you tell me if you
    are single, divorced or married?

    I am on my own
    more or less :)
  • mzmiller99
    mzmiller99 Member Posts: 220
    edited February 2009
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    Sierra - I'm married to my mom!!!  She lives with me and when I get home from school, she's got chicken and biscuits on the table and the floors swept!!  The best thing is, that I don't have to sleep with her!!  Wink

    And, I really do like this group of veteran warrior women!  I hope we can stay together.

  • mikita5
    mikita5 Member Posts: 60
    edited February 2009
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    Ditto on a new forum for post menopausal women!!!!!!!!

  • Armadillo
    Armadillo Member Posts: 1
    edited February 2009
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    I was 60 yo when i received my br ca dx caught by yearly mammo; no family history.  The older we are the greater the risk.  Try this chat room; lots of older ladies here.

  • gymgirl
    gymgirl Member Posts: 12
    edited February 2009
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    Hot flashes? Oh my! I'm 58 and have been in menopause 4-1/2 years. I started flashing 2 years before that. And now I'm on Arimidex and still flashing. Day & night, like clockwork. Today was especially bad. I think our office manager had the heater turned up. I have an active job so I just kept going for walks outside in the rain to cool off. I sure don't like to think of myslef as old, but compared to some of the other women posting we have "more life experience."

  • kmccraw423
    kmccraw423 Member Posts: 885
    edited February 2009
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    Good morning ladies!  This is such a great thread.  I went through natural menopause at 49 years old.  I did NOT experience hot flashes, night sweats or mood swings (other than the ones I have had all my life).  When I would complain about how hot it was people thought those were hot flashes and I would respond "then I have been going through menopause since I was a little kid!"  I remember as a small child that I couldn't wait to get out of sight of the house so I could take off the sweater my folks made me put on.

    I think this site is great because we do have a lot of experience to fall back on - maybe not with breast cancer but with life.  I, too, welcome all who want to participate!

    It must be terrible to be young and especially with young children and face this beast.  As we age, and I am 62, we have probably already faced our own mortality.  I know I did in 2004 and, incidentally, I didn't like it.  Perhaps we can offer some perspective or support (which is what this whole site is about).

    There are so many really strong women on here.  It is humbling.

    Have a really great day or at least one without pain.  Hugs to all.

  • klp
    klp Member Posts: 1,454
    edited February 2009
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    Jo

    I have high cholesterol and high b/p...I am controlling the cholesterol with a natural product. I was on a statin for awhile but discontinued due to possible SEs. I was also controlling my b/p with a natural product until I started radiation. The rad doc wanted me to discontinue because they weren't sure if they would interfere with the txs. As of now I'm taking a b/p prescription..I think Tamoxifen raises b/p so I'll probably continue with the b/p prescription rather than going for the natural one again. While discussing Tamoxifen with my onco she said the chances of a blood clot or stroke was about 1% so I'll take my chances. I gained about 5 lbs. that I intend to take off soon. Have to increase my exercise and cut down on my calories..easier said than done.

    BTW Jo..Congratulations on your new addition!!! 

    Hugs to you, Sharon

    I have 2 girls and 1 boy, 5 grandchildren and 2 gr-grandchildren...one grandson is in the Army and another in the AF..I live alone with my dog and cat. 

     Looks like there are quite a lot of interested "older women" coming here...

  • klp
    klp Member Posts: 1,454
    edited February 2009
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    Jo,

    It is called Cholesterol Complete and I order it online at Seniorhealth.com...I also take fish oil. How much do you take?

  • klp
    klp Member Posts: 1,454
    edited February 2009
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    Jo,

    The main ingredient is policosanol which blocks the absorption of cholesterol. There are no side effects.

    The fish oil I take is from Puritan Pride..I only take 1000 mg(1 capsule)/day..enteric coated, no fishy taste

  • klp
    klp Member Posts: 1,454
    edited February 2009
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    You're welcome, Jo....one of my daughter's is named Josephine and I call her Jo. I can PM you the link to the site if you want.

  • klp
    klp Member Posts: 1,454
    edited February 2009
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    Well Jo you sure know a heck of a lot more about the ingredients then I do...I know niacin helps to lower cholesterol. I had asked my rad onco what he thought about soy in foods. He said the jury is still out on that so he didn't think anything was wrong with a little soy. I do believe the AMA and drug companies would prefer to keep us on prescription meds rather than safe, more natural products IMO.

    I can't blame you for being super careful with different ingredients, products. My only allergies are to penicillin and sulfa...

  • Motherof7
    Motherof7 Member Posts: 135
    edited February 2009
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    Hi,

    I am 65 and was diagnosed in December, 2008 with Stage 1 breast cancer. I have gone through my  radiation, and so far it's been o.k. I tried to walk every day after my treatments, however, I have had the flu for the last seven days, I am some better, but it's cold outside so I will try and walk tomorrow it's suppose to warm up. I am also getting Herceptin every three weeks. I will be given 10 doses of that, the first one was rough, but the last two were not so bad. Now, I am suppose to start taking Arimidex which is going to make my bones weak. I already have osteoporosis, just can't imagine why I was put on this since they already knew about my bones. My hormonone receptors were positive, so I guess that's why. I just have to leave it all in the Lord's hands that's all I can do. Hope you are feeling o.k. Hope this helped you in some way.