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 03:29PM

Posted on: Feb 7, 2009 03:29PM

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 15, 2012 11:03AM w6uqfcgomeo wrote:

Hi -  This is my first post.  I have been reading a lot on this website.  I look forward to getting to know all of you who post.  I have an unusual situation.  I was diagnosed last year at the age of 66.     My tumor should have made between 50 and 150 slides with cancer on them for testing.  Unfortunately (we don't know what happened) there was not 1 slide available for testing.  That meant I could not get an Oncotype DX test done or any other test to determine the aggresiveness of my cancer.  I then found out due to my low Vitamin D and high Estradiol levels that I would have scored higher on Oncotype DX and most likely needed preventative chemo.  The result was I could not get treatment because they could not tell what would work or not work.     I am taking supplements to address both the vit. d and estradiol issue.  Has anyone heard of a similar situation?           

Dx 9/7/2011, IDC, Stage IB, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 11/10/2011 Lymph node removal: Left, Sentinel; Mastectomy: Left
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Sep 15, 2012 11:38AM illinoislady wrote:

w6ugfgomeo, hi and welcome to you.  You didn't say where you were from ( that's ok ) but I am amazed at your story.  I have never heard of someone's slides being lost, but I do know to never say never as it seems that is just when something will happen.  Judging from your Dx line......at least it was IDC and does not look too scary.......there again, you really would like to be aggressive in your treatments if you can......and those slides would have been so helpful. 

I'm not up on a lot of canser info.....but I would have think....since you are able to have supplements to get your D and estrogen to acceptable levels.....that you might not need chemo. 

Also.....it seems to me that the MO could have come up with something for you to do.  The flip side though is that there are individuals ( no way to actually tell ) who have for a variety of reasons done nothing or next to nothing and never had a problem again.  They are though the minority.....partly because we know as much as we do.....most people end up doing a prescribed regimen.....so we don't know now how many would be in that category.  The worst part is not knowing why......of course, having the why's would help so much to treat period.  Some day.....but the end is not in sight yet.

I do hope you will keep coming back.  These are a great group of women. 

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 15, 2012 11:57AM chevyboy wrote:

Hi w6ugfgomeo...   So WHAT now???

Do you mean you had the surgery, and they cannot give you a final pathological report?  Ask that nit-wit Doctor again....!  They MUST have some way of telling you what grade, and type your cancer was, AND how big!    It is having the final path report, that they send in, with tissue, to test to see if you DO need chemo!  Did you have radiation???

Tell us more about you, so we can come and shake some sense into your Doc's head!!!   If he says you probably don't need chemo, then maybe you don't, and the same with radiation.... Some women refuse, but most of us go through it, to give us better chances, or in other words more assurance that every cell is gone... (if we can ever be sure)

And ask about taking Tamoxifen, or Femara, or Arimidex!  If you are ER & PR positive, those are usually given.... 

So let us know, because we might have to form a posse, to make sure they are taking care of you!    

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 15, 2012 01:00PM edithesther wrote:

Wow !! feel like I have just landed in a crowd of wonderful funny and supportive friends. My eldest daughter rang this afternoon then collected me and took me to the library to help little granddaughter pick her books. By the time we left there I was feeling better, got to look forward to getting through this and living my life as before. Thanks .

Dx 8/23/2012, IDC, <1cm, Grade 2 Surgery 9/20/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel
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Sep 15, 2012 03:45PM Beth1951 wrote:

Just got back from my consultation in Seattle. THANK GOD, I went for a second opinion. the results are the same, double mastectomy, but I have two experts handling my case.

I go in on October 17 to Swedish.

 These docs are prescribing expanders and I am a little freaked out about the pain and discomfort. But,once they explained how the instant implant my other surgeon wanted to put in following the mastectomy had problems I felt so much better

So, now I have to do my homework. Get rest and get ready for the marathon.

Any suggestions on where I should look to learn about the expander process ?

 The problem is I will be 5 1/2 hours a way from home for the procedure and will be staying with my husband in a motel .

I just want lots of tips on how to manage this all in a safe way 

"Tell me, what is it you plan to do with your own wild and precious life ?" Mary Oliver Dx DCIS, 1cm, Grade 3, 0/1 nodes, ER+/PR-
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Sep 15, 2012 04:52PM illinoislady wrote:

Beth...so glad you got the second opinion.  Some people get more than two.....but that could cause some confusion.  You can do tissue expanders, but you as well can do I think dorsal or lateral flap surgery.  I only had lumpectomy.....so I am not a good one to ask about this, but I would gather information on all of it.  Maybe you did and I'm not recalling the info you presented before. 

Any sort of surgery can present problems....nothing is problem free....if the Dr'.s you consulted for this second opinion are used to dealing with expanders.....then likely they would feel much more comfortable presenting that option to you.  I would just make sure to read and study about all of them and I'm sure you can find a wealth of information not only in the front of ( beginning sections of Bc.Org ) but you could probably find whole forums and threads which discuss pros and cons.  Other than that or along with that, I'm sure there must be many references from material that you find here which you can read. 

Thank goodness there are places like this one and an Internet to help us get connected to help.  I am wishing you well and probably some one else will come on here and talk to you as well.

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 15, 2012 04:53PM termite wrote:

Welcome Edithesther, SusannahW, w6ugfgomeo and Cindi74,  sorry you have to join this forum but everyone is here is great and very helpful especially when one of us is feeling blue.

I have a 6 month visit on Monday with my OD. A little nervous but always am before appointments.  I am 63 and 2 1/2 years out. I have been following the posts this week but have not written for awhile. The last two weeks I have felt so tired that I have been going to work and then just laying around the house and going to bed early.

Today is beautiful out. Wish it would stay this way for awhile. I forced myself to clean the house today before dg came to  spend the day with us. She is only 3 and would not know the difference but I would. It was good to play and spend time with her.

Hope everyone has a great weekend.

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Sep 15, 2012 07:39PM mommarch wrote:

Welcome to all who are new.  Sorry you have to go through all of this, but this is a great group for support.

I had my six month mamo and ultrasound yesterday and they said it all looked good.  Dr. will have report on Monday.  I took myself off of the cymbalta, my stomach was really bothering me.  I had been on 30mg once a day for 6 months.  I just went cold turkey and so far so good.  I did not take my ambien last night because I was really tierd and thought I would sleep, that was a mistake.  A  miserable night.

DH found out he had arthtic knees, is to do some excercises and take some medicene, Dr. gave him a shot of what ever in his shoulder and it is better today.

Why is it so many bc patients have trouble sleeping after the chemo is all over with?

We had rain here in West Texas, started late last night and continued until around noon today, it was a nice gentle rain.  Temps have only been in the 50's, we fnally had to turn on the heat for awhile to get the chill out of the house.

I was 63 in May and went through treatment last year, I do feel older, the tamoxifen does make me fatigued, it is hard to get things done.

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 15, 2012 10:26PM - edited Sep 15, 2012 10:38PM by w6uqfcgomeo

Hi to all my new friends.  Sorry for the delay in posting I was off line.  Thanks IllinoisLady and Chevyboy for your support and everyone else too. 

I should have been more detailed when I sent my post.  I live in the US.  I did get a pathology report which told all the details below, that was not the problem.  The problem started when my MO said the lab  could not do any tests (Oncotype DX, Ki-67, etc) because there was not enough slides with cancer on them.  MO and I were told by other path. labs that a 1 cm tumor should have yielded between 50 and 150=200 slides with cancer on them for testing.  But, the lab said there was not even ONE slide that could be used for testing.  My MO thinks they threw it out by mistake, most likely in the beginning during gross examination.  They have covered up  whatever they did up for over 5 months.    That is why we could not get the genetic code (for future treatment) or determine what treatment would  or would not work now.  My MO said he was back over 30 years in trying to figure out what to do for me.  Sad thing was he could not think of anything to do that he felt would work for sure (other then addressing the vit d and estradiol (elevated hormone) situation.  The Oncotype DX would have shown how successful the hormone therapy would have been. 

Meanwhile, I independently had my vit. d and estradiol levels checked after reading information regarding the importance of that situation.  My oncologist should have done it, but did not, I discovered it from internet reseach and had my primary dr. do it.  Vit. d level was severly low, it was 14, normal is between 100 to 155 I think.  Dr. said it needed to be over 75 to keep cancer from coming back.  My Estradiol was high, I think it was about 32, and needed to go down to 4 or below.  Took it to MO who said he felt that indicated a more aggresive type of breast cancer and that I would most likely have scored higher on the Oncotype DX test and would have needed preventative chemo.  But, he could not give the chemo without more information, so that is why I could not get the chemo treatment.  The preventative chemo would have had to be given within about 12 weeks pos-operatively.  By the time I discovered this it was too late.... I did have a mastectomy (left side) but no radiation. 

Wish I could get a big posse together with a lot of you to help whip the lab and MO into shape.  Unfortunately, my main oncologist is now history.  He was afraid to tell the truth of what happened in my medical records (about the path. lab situation), was afraid what the lab would do to him....I really told him off and, of course, said goodby to him...!!

Hope that answers some of the questions.....thanks heaps for the support I really need it now with all that I am going thru.....Mary

Dx 9/7/2011, IDC, Stage IB, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 11/10/2011 Lymph node removal: Left, Sentinel; Mastectomy: Left
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Sep 16, 2012 04:23AM chevyboy wrote:

Okay little Mary....... Sounds like a job for Superman!  They should all be ashamed of themselves for sweeping you in-between the floor-boards!  They were probably looking at a text book, trying to figure out what they were doing, while they did your surgery!

If you trust anyone of your "team"....(and I use that word loosely).... You might ask for one of the Hormone suppresants, or Blockers, like Femara, Arimidex or Tamoxifen..... Because with your ER+/PR+.... You would be prescribed one of those, just for further after-care.

It's probably good that you had a Mastectomy, and it's a wonder those Doc's didn't take off your arm or something!   I mean Holy Connoli, you must have been under the care of the 3 Stooges!   It's a wonder you survived so much rinky-dink blatherings that day!   Are you SURE you were at a medical facility and not at Jake's garage that day?

Yes, Vit. D3 is important....  At least your Primary has HEARD of that!   But honestly, sounds like you should do well.... and no thanks to your comedy of errors Docs!   We could all just shoot them, and put them out of their misery........Wink Let's get one of those stuffed dolls, and poke needles into them, to punish those guys! 

Oh well.... glad you are doing as well as you are!

Mommarch!  Be careful of that Ambien!  I've heard lots of women, (on this thread) talking about the wild and crazy things they do, while under the influence of that drug!  Have you tried Melatonin instead???   If you go to "search" at the top of this page, and type in Ambien, you will come up with lots of stuff on that.   Tamoxifen is another sleep robber!  But I took Melatonin, and THEN had to take truck-loads of those anti-diarrhea tablets.  So THEN I quit everything, and gradually went back to normal.  WAIT!!!!!!!!!!!!  It's the Tamoxifen that is bothering your sleep... (I re-read your post!)  I think if you take it for about 50 years, you should get your sleeping back in order.

Termite!  Sounds like you are doing better!!!!  See?  We CAN do it!  Just takes time.  And lots of pills, and chocolate cokes!

And BETH....I don't know anything about Mastectomies or tissue expanders...but go to search and type in those words, and a lot of threads will come up!  I've read some of them, but it's been a long time.

Okay kids..... gotta get busy.......... I'll be back later.......

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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