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

Forum: Older Than 60 Years Old With Breast Cancer — Meet other women who are similar in age and dealing with age-appropriate issues.

Posted on: Feb 7, 2009 07:29PM

Posted on: Feb 7, 2009 07:29PM

Northstar wrote:

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. 

DX 8/15/08, ILC, 5.1 cm, Stage IIb, Grade 1, 0/2 nodes, ER+/PR+, HER2-, Oncotype DX 11.
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Sep 16, 2012 10:42AM illinoislady wrote:

hope this makes it:

The beauty of a woman is not in a facial mode, but the true beauty in a woman is reflected in her soul. It is the caring that she lovingly gives, the passion that she shows. The beauty of a woman grows with the passing years. - Audrey Hepburn

Each day I am thankful for nights that turned into mornings, friends that turned into family, dreams that turned into reality and likes that turned into love. ~~~Elizabeth Kuebler-Ross Dx 9/27/2007, IDC, 5cm, Stage II, Grade 3, 0/3 nodes, ER+/PR-, HER2-
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Sep 16, 2012 02:40PM chevyboy wrote:

Yes Jackie!  That MUST be us!!!  I'll have to remember that every time I look in the mirror.... Wink

Or like today when every single bone in my body hurts!  First it was my ankle, now it's up to my knee, and it just hurts to move.... But I am beautiful.

WinkUndecided

Don't walk ahead of me, I might not follow. Don't walk behind me, I may not want to lead. Just walk beside me & be my friend. Dx 11/2009, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 16, 2012 03:03PM - edited Sep 16, 2012 03:06PM by w6uqfcgomeo

Hi Chevyboy & Termite:    Thanks for the posts.  THANKS HEAPS for making me laugh.  I have not laughed that hard in over a year...!!!!  Just love what you said, in fact, I am going to start using it when I describe what I have been through.  I feel I have a family now that really cares.....THANKS HEAPS. 

First, I don't want to forget to tell you more about what I did regarding the vit. d and high estrogen situation.  Due to the fact "traditional medicine" had let me down, I went back to a homeopathic clinic I had been to for food intolerance testing.  They really opened my eyes and it might help all of you that read this too.  They said that the traditional aromatase inhibitors (etc.) block the pathways, but by doing that it robs the bones, heart, etc., of what the body needs to work well and that is what causes a lot of side effects for women on the aromatase inhibitors.  So, they  tested my saliva hormones to see where the imbalance was and they were right, my progesterone and DHEA were off.  So we supplemented those two.  Then we also tested the serum hormone levels at the same time.  We also discovered that part of my hormone problem stemmed from adrenal deficiency (lots of stress thru the years) so we addressed that.  END RESULT....my Estrogen (estradiol) is now below 5 (was 56), Vitamin D is now 73 (was 14).  So....I am very happy about that.  That will help to stop feeding the cancer so that is good. 

I hate to tell you that there is more to the nightmare I went thru.   There was a second specimen that was submitted at time of surgical biopsy.  The picture the different oncologists I saw (prior to surgery)  was not very pretty....." 1 cm. IDC, no clear margin (within .01), second specimen looked very suspicious, multiple microcalcifications thruout the breast."  So they advised mastectomy with SNB.  I told all of them I wanted to know about the second specimen and they agreed.  I left that to them to deal with (big mistake).  I was so traumatized by everything all I could think of was getting the "thing" off.  So I went ahead with the Mastecotomy and SNB.  

  We don't know if the second specimen was ever tested, they tried to say it was not given a diagnoses for over 2 months due to the fact it was "not oriented," which means where it was located with respect to the other specimen.  But, neither specimen were oriented and it did not stop them from testing the first one.     They said after my surgery, that it had been tested and was benign, but we now think it was thrown out during what is called pre-anaylitical processing (meaning in the beginning).  I now think maybe there was other cancer in the 2nd specimen, most likely, more aggressive which would account for the high Estradiol and low vit. D which goes along with more aggresive BC, and would explain a higher score on Oncotype DX (MO agreed with this). 

If that was not enough, when they did the surgery the "stooge" that did it did not prescribe an antibiotic for after surgery, so guess what, I got a hospital acquired type of drug resistent staph MRSA infection  (can cause death), which I might add she did not even tell me about until I got copies of my medical notes from her.  Due to the infection the drain plugged up and they had to open me up again (in office) clean everything out, culture it, and put drain #2 in.  I had drains for almost 30 days!!!!  She (the surgeon) even said in her notes I was doing "too much housework" and that caused all the problems....of course she later has to retract that statement.  I also had nerve pain (damage?) from the SNB and will have to have another surgery to correct the "balloon" that is under my arm......The posse idea sounds better all the time......

Of course I survived, God only know how, had to have LOTS of therapy, had lymphadema all across the chest wall....an absolute nightmare...  At the same time I was trying to deal with my MO over the lab situation.   The disappearance of the tissue means we could not get the genetic code for my cancer.  That means that even in the future if a new discovery comes up for treatment, etc., I won't be able to take advantage of it without the code. 

I'm sure you won't be surprised to hear that I decided I would take legal action against the lab, main oncologist and surgeon for all of the above...But, even that is not easy.  It seems the attorneys don't want "difficult" cases and just want the easy, high price cases.  I am continuing to work on that.  My current MedMal attorney has spent over 6 months reviewing it and just can't seem to find the time to work on it in order to tell me if they will take the case....I am marching into his office and getting my material and looking now for another lawyer.  It is a blessing I used to be a legal secretary and also had extensive medical training (medical unit secretary, medical records, billing, had anatomy, pathology, etc.) 

Can't wait to hear what you think of all the above....

Thanks for your support....Mary

Dx 9/7/2011, IDC, Stage IB, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 11/11/2011 Lymph node removal: Left, Sentinel; Mastectomy: Left
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Sep 16, 2012 05:10PM chevyboy wrote:

Little Mary.... You don't want to KNOW what I think of what they did to you!!!  Your whole venture in dealing with these Doc's was a nightmare!  At least you walked away with your "good" breast, and maybe both arms in tact!  I would go after them all with a Gattling Gun! 

And yes, I know how all those other meds can "change" things with us.  For instance, while taking Tamoxifen, I went deaf.....  And that's no big deal, because I quit taking it on my own, after figuring it all out myself, and was diagnosed with permanent nerve damage, so I now have some fancy-dancy hearing aids. 

About hiring a lawyer.... yes, I think you might have a case, IF you have permanent damage....But like me, I was told that unless you lose a limb, or something horific, sometimes the trouble you have to go through isn't worth it!    And most lawyers would want their money up front, and that's even if they don't win your case! 

Mine would have been with the drug companies that made my generic Tamoxifen...But since I took all the pills that made me lose my hearing, I can't say for sure WHICH company made the ones I was taking.  I did report it to the FDA,  and the companies that make the generic, but I never heard back!  And so far there is not a class-action law-suit going on.  I don't know if I could PROVE that it was the Tamoxifen that caused it, without MORE cases being reported with the same deafness issue.   There ARE quite a few more women, who this has affected, but not enough for "them" to take this seriously yet. 

Anyway, since you could sue your bevy of bean-heads, that might be worth going after!   But you would need other Docs to testify, and sometimes they don't want to get involved..... See what an attorney says....  See if they think you have a case.  Tell them that your "Posse" is "on the ready" and we will be out there when the whistle blows!  By the way, what town do you live in??  You said in the US... Like some corner of some little town in the middle of the dessert?  And they have one hospital which also serves as a grade-school?   I've never heard of such ineptness!! 

So that's my 2-cents.........  Would just LOVE to hear those guys trying to explain all the mistakes they made with you!  They do not deserve to be called Doctor's!  Maybe "Doc's in training"....but not be able to get near any people who need help.... Just do surgery on each other! 

Okay....  guess I fixed THEM!!  Wink

Don't walk ahead of me, I might not follow. Don't walk behind me, I may not want to lead. Just walk beside me & be my friend. Dx 11/2009, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 16, 2012 06:25PM w6uqfcgomeo wrote:

Hi Chevyboy:  Thanks for the wonderful encouragement.   Although I live in a small town (only last 8 years) in the middle of Washington state, I traveled to Spokane, WA to get medical care.  Quite a big place which I THOUGHT had good care....Went to larger facilities but that mistake was they were running you thru like cattle and not taking the time needed per case.

It has taken me months of very difficult (objective - divorce yourself from the situation type) work on my case so I could present it in a way the attorneys understand.  By the way, most medical malpractice attorneys take the cases on contingency, generally 40%.  They will tell you that unless the case has enough money the cost of hiring expert testimony (cost to litigate) is more then it is worth, so the trick is to find out what and how much you can sue for.  I have done my homework and even have a figure of how much per day it is costing me in non-economic damages ($93.77 per day to be exact).  My case would be for pathology lab breech of standard of care, medical malpractice against main oncologist for the way he handled the lab testing, his lack of testing for aggresive bc when he saw what was happening with lab, which prevented me from getting preventative chemo.  Also, I will sue for failure to handle the second specimen correctly.  The suregon would be sued for breech of standard of care (no antibiotics, not being checked, not handling 2nd specimen testing situation, unnecessary surgery and nerve damage, pain and physical suffering due to unnecessary surgeries, etc.).   Economic damages -  future medical care (complex) (around $7,000 per year, ((supplements, etc., not covered by insurance)),  counseling expenses, unnecessary SNB & Mastectomy, left arm nerve pain and permanent damage to reduced ability to fight infection, loss of best chance to receive best treatment, loss of future hope for treatment ((no genetic code which is in tissue)),, etc.  Non- economic damages - extreme mental and emotional trauma, quality of life damage, loss of peace of mind, loss of hope, etc.................You can see I have done a lot of work on this....

       O.K. enough about me, I want to try to help you my dear new friend, as best I can.  First thing to do, find out what the statute of limitations is for medical malpractice in your state.  Then determine when the situation occurred (time frame).   The statue starts to run when  you become aware of the situation.   The next thing you need to do is investigate all the medications you were taking to  make sure it is the Tamoxifen.  Look for known side effects.  You mentioned this has happened to others.  Contact them and join together.  You might call your pharmacist and he/she would be a good start.    While you are doing all of this, you need to get your medical situation in order.  By that I mean you will need testing to be able to prove that you have nerve deafness.  I am sure you must have had some tests (hearing, etc) to try to establish the problem.  Please tell me in great detail.  There is a special brainstem type test that does track a nerve response from brain steam to the ear.  I had it done, painless and quick.  I lost my hearing (rt. ear)  at 15 from nerve damage from the mumps.  Hearing aids do not work for nerve deafness.  They would have to establish how much hearing  you lost and then try (for your age) to determine the difference between what is normal for your age and the loss.  You might have a case.  Get copies of ALL medical records and tests and advise me from what I wrote above.  You will have to prove it was not any of the other medications you were taking.  There is a large lawfirm in CA I know about that handles a lot of cases regarding drug related damage (class actions, etc.).  I know the father of a young attorney that works there.  I will help in any way I can.  It would not really be considered a medical malpractice case, it would be a product liability case, a lot easier to prove.   You must establish the damage the hearing loss has done to you.  Not sure how to do that, would need to research how those types of cases are handled, but a good product liability attorney could help you there. 

Well, this is getting to be a book, I think I should let you have a chance to respond.  Mary

Dx 9/7/2011, IDC, Stage IB, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 11/11/2011 Lymph node removal: Left, Sentinel; Mastectomy: Left
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Sep 16, 2012 07:40PM illinoislady wrote:

w6,first I said you had quite a story......and now I'm saying you have quite a remarkable story.  If anyone had reason to sue it would be you.  I mean it is beyond my imagination that a Dr/Lab/head nurse and whomever else joined in the fiasco would not even have "great expectations" of being sued.  I do hope you can find an attorney who has enough staff to get into the records requests, and other lg work necessary to determine if this is worthwhile.  I admit on my part I have an emotional reaction.....you have no way to know just how to procure effective tx. for the rest of your life......while that dark cloud just sits on your shoulder. 

I'm go glad that Chevy and Termite were able to get some laughter going in your life.  At the best of times now and then a little gloom can hang around.....I can't imagine when it sounds the worst of times. 

I have lost some hearing too.....but I don't think from my meds.  I think it is just weakness in the family plus a lot of ear infections as a young child.  Right now I'm dealing with some cartilage that apparently got loosened up about a week ago.....we figure I twisted quickly some way and bingo.  I have an ace bandage, some instructions for hot and cold therapy, and some Tramadol just in case it actually starts to hurt.  I'm to baby it for ten days....sounds like a near impossibility to me......I have a job to go too......but it is not really hard or repetitive.....so I think I can manage.  The hope is that the cartilage will re-attach if I'm not too hard on it. 

I hope you all have a wonderful day for the rest of the day.

Hugs, Jackie

Each day I am thankful for nights that turned into mornings, friends that turned into family, dreams that turned into reality and likes that turned into love. ~~~Elizabeth Kuebler-Ross Dx 9/27/2007, IDC, 5cm, Stage II, Grade 3, 0/3 nodes, ER+/PR-, HER2-
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Sep 16, 2012 10:34PM w6uqfcgomeo wrote:

Hi -  It's Sunday night.....anyone out there?  Mary

Dx 9/7/2011, IDC, Stage IB, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 11/11/2011 Lymph node removal: Left, Sentinel; Mastectomy: Left
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Sep 17, 2012 12:27AM mommarch wrote:

Hey Chevy,

It is without the ambien that I have the horific nights and no sleep and crazy dreams.  With it I get a good nights sleep and feel great. I took it last night and I was so rested this morning, I got alot done today.  I stopped taking the cymbolta, cold turkey on Friday because I was having awful stomach nausea.  I have a feeling it was raising my liver enzymes.  I feel alot better since I am of of it.  I also noticed I was feeling very foggy in the mornings.  I think it did what it needed to to for me for the time If took it.    I can not take cholestrol meds because it raises my liver enzymes also.  My PA is gone from the office until 9/24, but I intend to see her as soon as she gets back.  

Take Care 

Life isn't about waiting for the Storm to pass...it's learning how to dance in the Rain! Vivian Green, writer and artist Dx 3/11/2011, 2cm, Stage IIA, Grade 3, 0/23 nodes, ER+/PR-, HER2-
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Sep 17, 2012 07:50AM chevyboy wrote:

Morning gals!  Mary, I'm hardly ever up past 8, Ha!  But I get up about 4 every morning........  I just can't seem to change those hours........  But when we go to Orlando, it will be perfect...Wink  But if I drink coffee, anytime after 2 in the afternoon, I'm up till about midnight!.... And still wake up at 4!

Mommarch, At least you seem to have it figured out....  Nothing worse than being sick to your stomach, unless it's being dizzy!  And those two usually go together....... 

Mary........You know, when I woke up one morning and couldn't hear out of my left ear....(I mean it was "plugged") I thought it was allergies..... I took Allegra, which did nothing.  Then my right ear did the same thing.  Went to PC, and she told me to treat it as allergies for a month... Allegra, nasal-rinses, etc.  I also tried holding my nose, and blowing, until your brains fly out your ears.  Nothing.  Went to ENT...all the tests....  "Yep, you have lost your hearing."  "Probably permanent nerve damage from something."  I asked him if the Tamoxifen could have caused it.  He said he couldn't say....  And even if it did cause it, it won't come back even though I quit taking it.

It's just me that is pretty darned sure it was the Tamoxifen.....  And I did find lots of articles on the Internet, and on BC.ORG I knew of 3 other women who say the same thing.   

The FDA wrote back, wanted names, phone numbers of any Doc who diagnosed this.  Of course my Oncologist would not have any part of this.  The ENT would not say what caused it for sure, and actually without that brainstem test, I'll probably never know...I just know I lost 100% word recognition in my Left ear, and 50% in my Right.  It hasn't gotten any worse.  I've had 3 tests, and it stays the same.

I do have copies, all medical records, and have sent them to my Docs, the FDA, the drug co. that made the brand I was taking. 

So without any Doc backing me, and at my age, I don't think there is even a slight chance that anyone would do anything with this.  In other words, there is no proof.  I know this has happened to younger women on Tamoxifen, but only a few out of thousands.  And there is still no warning on the label on that med.

I just didn't want to spend the $10,000 I had heard it would cost with an attorney here....  Especially because my Onco just left me flying in the wind, and even the ENT could not say what caused it. 

That is so sweet of you to "take this case"....Ha!  But honestly, I feel they would all say, "Well, she's old, and maybe this started when she was younger, and maybe that perforated ear-drum she had when she was 23 started all this...... 

I'll send you a PM, so I won't take up any more space here, but even my DH, was worried this would cost US more than it was worth.... At least I could "fix" my problem with hearing aids.... But you have to deal with your problems STILL!  

Okay gals.... gotta warm up my coffee...Wink   And thanks for caring!

Don't walk ahead of me, I might not follow. Don't walk behind me, I may not want to lead. Just walk beside me & be my friend. Dx 11/2009, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 17, 2012 11:27AM illinoislady wrote:

Be kind whenever possible. It is always possible.
Dalai Lama
Each day I am thankful for nights that turned into mornings, friends that turned into family, dreams that turned into reality and likes that turned into love. ~~~Elizabeth Kuebler-Ross Dx 9/27/2007, IDC, 5cm, Stage II, Grade 3, 0/3 nodes, ER+/PR-, HER2-

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