The waiting room!!!

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Tricia Keegan
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Re:The waiting room!!! - Friday, January 31, 2014 5:19 PM
Thats wonderful news Rena and I can imagine how relieved you all are:)
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
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Rena
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Re:The waiting room!!! - Saturday, February 01, 2014 8:39 AM
Thanks, Tricia! Very relieved!
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

Tricia Keegan
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Re:The waiting room!!! - Saturday, February 01, 2014 10:52 AM
I was sad to receive   an e mail late last night from an ex Komen friend telling me the cancer was back, she doesn't have any other details as yet but I'm hoping any treatment will be minimal so please keep Sue in your thoughts that this has been found early.
<message edited by Tricia Keegan on Saturday, February 01, 2014 4:39 PM>
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

scootersmom
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Re:The waiting room!!! - Saturday, February 01, 2014 2:54 PM
Will do.  
Tina    
dx 2/1/11 DCIS
Lumpectomy 2/27 results DCIS/LCIS Stage 0 ER+ PR+
Bi-lateral Mastectomy 4/26 with expanders 
6/3 Surgery to remove contaminated expander due to infection.
7/22/11 Surgery to reinsert the expander. 
10/11/2011 Surgery to replace tissue expanders with implants.
 
 




GeoWolf
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Re:The waiting room!!! - Wednesday, February 05, 2014 7:21 PM
Hi everyone.  I feel a little odd asking questions here since all I have been told is that they saw something on my US.  I have a strong family history of breast cancer so of course every time they see something I start to worry.  I need to decide if I should insist on a biopsy again.  (I did about 16 months ago and it was B9) 


It doesn't help that the hospital where I had my testing done can't get their act together so I've been in limbo for a month.  Longer if you count from when I had the MRI in early Dec. They wanted to compare my last mammogram and US (done in early May) to it before deciding if they needed to do more.  The problem was I had that one done in Texas and it had to be sent to FL.  They kept claiming they didn't get them.  Finally my doctor got frustrated and told them to do another US for themselves, since they had one there from Oct of the year before they could use that to compare.  When I went in they measured 2 spots.  One was the spot I'd had biopsied (B9 - Fibroadnomia) at that hospital the year before.  The other was a new area and it was very uncomfortable since they were sort of pressing on and twisting my nipple.  The tech told me "You should hear something tomorrow."  Which concerned me because it's always been "in a few days" or "less than a week."  Only I didn't hear anything that day or the next or the next...  After a week I started calling.  The radiologist is out of town until next week.  The radiologist should have it done by tomorrow.  It still says it hasn't been read." After 3 days of calling and arguing - "The radiologist is looking at it right now.  Someone will call you as soon as it's done."  Um no!  I kept calling and getting excuses.  (Yes I talked to supervisors)  Finally 4 weeks after I'd had the US they called to tell me the radiologist rated it BI-RADS 4 with a low suspicion.  Then she added that it was rated 4a, but that they wanted a biopsy.  Which was fine with me, because I'd rather be sure.  With the BIRADS 3 last year I had to fight for one.  I wanted it because my cousin had a 3 and her doctor was the type who wanted to be sure since her grandmother and aunt (My greats) both had breast cancer. It was stage II.   The problem is that now I'm in Texas.  Which I didn't think was a huge deal except that 1st the sent the films to the wrong address and without a room number on them it took an extra day for them to hunt them down.  My doctor here called me and said that she didn't look at the films but the report described the spot as "mostly round" or at least I think that's what she said.  She told me that cancer is rarely symmetrical.  For this reason she wonders if they are being to cautious by rating it a 4 instead of a 3. (I believe the same radiologist read them both)  She wants to send my films to the place that did my Mammogram/US last May and have them take a look and decide if they think I need a biopsy or if they want to do another US to decide.  At this point I'm rather frustrated.  I was prepared for one and having answers.  I suffer from anxiety and this is  making me anxious.  I am worried that this person will decide that I don't need the biopsy that the other hospital told me I should have.  I wonder why I should trust this new person more than I would trust the one in Florida?  But I hate having to fight to get something done.  And this small voice in the back of my head says that if I do a biopsy now it will once again come back as B9, but if I put it off it might not.  Which I know is silly.  Of course I don't want to have a biopsy every year but I'm going to be 52 in a few weeks and it would seem that sooner or later things would stop growing in there. Right?  I guess I'm trying to figure out if it's unreasonable for me to argue over this if that is the only way to get a biopsy.  Here is my family history


I am - Negative - for known BC genes - Unknown for family members who had breast cancer as none of them were tested.  


Maternal:  2nd cousin age 52; stage II (She had yearly mammograms) Cancer free for 10 years - Great Aunt unknown, but 50's. - Great Grandmothers on both sides.  Both in their 50.  Both died of breast cancer in their 60s.  


Paternal:  Aunt - age 49; Stage II, (14 months between mammograms)  She has been cancer free for about 2 years.  She is only one month older than I am.  Aunt - Age 56; She is now Stage IV (not sure of time between mammograms. Over a year, but less then 18 months.)  Grandfather - Unknown age, but believe to be early 50's.  (He didn't like to talk about it and only his wife and youngest children even knew.  However he didn't tell them until they were adults.  They were under 5 when he had the [font="verdana, sans-serif; font-size: 9pt; line-height: 115%"]Mastectomy.  His other children were grown or living with my dad.)  2 of my dad's other sisters had [font="verdana, sans-serif; font-size: 9pt; line-height: 115%"]hysterectomies in their mid to late 20's for what they were told was cancer.  One says it was a partial hysterectomy and that is how she had another child later.  The other had mental issues and no one has any further details, other than that she claimed to have cancer again but was never willing to talk about what kind.  She has since passed (age 70) of unknown causes.  My dad's other sister died of Lung Cancer at 63 or 64.  
[font="verdana, sans-serif; font-size: 9pt; line-height: 115%"]

Thank you for any thoughts. 
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scootersmom
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Re:The waiting room!!! - Wednesday, February 05, 2014 9:03 PM
Wow--What a run around.  If you are not content with the follow ups from your doctor, maybe you should find another one.  Is it possible to find a "breast center" or specialist in your area for a second opinion?  It's a shame that they make you wait this long and still don't tell you anything.

Good luck.
Tina    
dx 2/1/11 DCIS
Lumpectomy 2/27 results DCIS/LCIS Stage 0 ER+ PR+
Bi-lateral Mastectomy 4/26 with expanders 
6/3 Surgery to remove contaminated expander due to infection.
7/22/11 Surgery to reinsert the expander. 
10/11/2011 Surgery to replace tissue expanders with implants.
 
 




GeoWolf
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Re:The waiting room!!! - Thursday, February 06, 2014 2:22 AM
It really isn't my doctor who is the problem.  It's the hospital in Florida.  My my mom's sister died suddenly in Nov and I went down for her funeral.  We decided to stay for Christmas and I didn't want to delay the MRI.  It just seemed like a cursed thing from the start.  I went in Nov but I had a cold and I couldn't breathe in the machine so after 15 minutes I had to give up.  I don't think it helped that it was the same hospital my aunt had passed in 2 weeks earlier.  I had to wait for my next cycle, which thankfully came.  I've only had 3 in the last 10 months.  Then the hospital has been the problem since then.  Someone from my doctor's office has been talking to me at least weekly and often twice a week trying to get the info.  They have been very "on the ball" over this.  They didn't actually have my info in their hands until today.  I was just a little shocked that they wanted a second opinion.  I really just want the biopsy so that I can be sure.  I do know that they sometimes downgrade what they see on a mammogram once they look at it on an US.  I just don't know how it works with an MRI or even if or what the MRI was rated.  But my feeling is that given how long it took to get my results, that a radiologist would rather it turn out to be a lower score and therefore something that was on the line he would tend to see it as a 3 instead of a 4a.  Not that I think they would intentionally lower the grade.  Just that there is no way they are going to make it even a tiny bit higher.  For that reason I'm not sure I would ever trust the 2nd opinion if they wanted to lower it at this point.  But I'll admit I tend to over think things.  I also hate waiting and that is another problem.  Waiting 6 months for another look to make sure they were right.  I don't want to fall on the wrong side of the odds no matter how slim they are.  I also want to know what others would do or did, about having a biopsy, with borderline scans.  

Tricia Keegan
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Re:The waiting room!!! - Thursday, February 06, 2014 4:32 AM
Hi, if you put this in a new post maybe more people will see it and reply to you, but I agree that if you feel uneasy I too would insist on a biopsy.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

sharonma
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Re:The waiting room!!! - Thursday, February 06, 2014 8:13 AM
Tricia, 
I'm sorry to hear of Sue's reocurrence.  There have been so many "Sue" s here, but am thinking of a few.  Please let her know I am sending best wishes and hope for a full recovery.   

Hi wolf,
I know this must be extra frustrating because of the move. I was dxd  8 months after my last move.  Fortunately it was only about 1 1/2 hour away, so I drove back to get all of my previous mammos and records.

 If your gut is telling you a biopsy is needed, then maybe you can  make an appointment to sit down with the doc to discuss.  It might be more effective than back and forth calls and second guessing the rad report.  In fact you can request a copy of all of the reports to have for your own piece of mind.



 I'm not sure what you mean by,"...I'm going to be 52 in a few weeks and it would seem that sooner or later things would stop growing in there"

dx ILC/dcis excisional biopsy 5/30/08
r segmental mast (partial) snb 6/4
node neg stage1 gr ll
er+/pr- Her2 - Oncotype Dx 11
R mast 9/22/08 w DIEP
tamox,now AI 
BRCA 1 & 2 NEG
davinci hyst/bso,  

GeoWolf
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Re:The waiting room!!! - Monday, February 10, 2014 3:24 AM
I seem to be having trouble with the site, because I thought I posted it in a new post.  I'm sorry that I messed up.  I just can't even figure out where it posted.  :(   This site doesn't seem as user friendly as the infertility sites I belong to.   I don't think I'll try again because I don't want to end up in the middle of someone else's thread.  Thanks for your responses though.  

Hang Tough
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Re:The waiting room!!! - Sunday, February 16, 2014 11:15 PM
Great idea! I have taken a sit in the waiting room! I have a spot on my rib that we have been watching for the past 15 months. It has grown to an inch long. They can't tell what it is! One scan it says suspicious for a boney met then we had one that came back and said it could be a fibrous dysplasia. I had a bone biopsy and due to the location of the spot they ended up not being able to reach it! My next scan is in March. I have a new oncologist and she is starting me on Zometa this coming week. I have been having pain this whole time. Most of the time I handle it fine. Then every so often it gets to me and I lose it! So I am here in the waiting room, reading a good book and listening to my music!
Marianne
Diagnosed with Stage 3 Lobular BC 11/09  
Bilateral Mastectomy 12/09  
6 rounds of AC Chemo and 12 weeks of Taxol 2/10-6/10  
6 weeks of radiation 7/10-9/10  
Tamoxifen 7/10 until 7/13 Arimidex 7/13 until 7/19
Reconstruction

Tricia Keegan
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Re:The waiting room!!! - Monday, February 17, 2014 9:45 AM
Hi Marianne and welcome to the waiting room, I'm sorry you have this worry and can relate as I was in a similar position a few years ago with a spot on my spine, when they couldn't biopsy it my Onc ordered a PET/CT which confirmed there was thankfully no cancer uptake. I think shortly after I had Sciatica and the spot vanished by the next scan, thinking of you and please keep us posted when you can and good luck!
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

annette53160
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Re:The waiting room!!! - Monday, February 17, 2014 12:08 PM
Marianne thinking of you and hoping for good news next month.

Tricia what did the sciatica feel like?  I have been having pain from my buttox down my leg.  The pain seems to spike at the back of the knee.  Comes and goes depending on activity level.  Scared to mention it to my onc and have to start with all the scans.  Mamo next month and the nightmares are beginning!  I really think I have arthritis or sciatica but am not sure. 
IDC October 2009
Lumpectomy x2 to get clear margins
Stage 2a Grade 3
1/11 nodes positive 
er+
4 DD A/C
12 Taxol
Radiation
Femara

Tricia Keegan
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Re:The waiting room!!! - Monday, February 17, 2014 1:17 PM
Annette, this sounds like Sciatica for sure to me, in my case it begins low on the left side of my back, travels down my buttock and right down to my knee, its almost like a burning pain and I seem to have a flare up every few weeks!  When I saw the PT about it she showed me some exercises to do when I have the pain which did help, if you google them they're easy to find and I also used to belong to a Sciatica group on FB run by a male PT, if you do a search there it should come up and you'll hopefully get reassurance.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Rena
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Re:The waiting room!!! - Wednesday, February 19, 2014 7:49 PM
Marianne, I'm thinking good thoughts for you and hope you get some good news about this soon. I know the waiting is hard.

Annette, good luck to you, too. I hope you get some relief soon.


Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

DJ64
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Re:The waiting room!!! - Monday, March 24, 2014 4:10 PM
Good luck Marianne. I agree with Tricia that does sound like sciatica Annette.  I had it once and it was a bummer.  Rarely does one read about another tumor in the other breast.  It can happen but it isn't the norm.  If you don't have other complaints like pain in a bone, not a nerve, coughing or pain on the right side by your liver, you will more than likely be ok.

I am waiting to see if we have another snow storm on Tues night into Wed.  I have an oncologist appointment and chemo.  The secretary didn't want to cancel it but I no longer enjoy trips in a blizzard.  I have one on Friday if the snow turns out to be a few inches.  Right now it says 7-8 inches.  I don't want one.  I just hope it stays out to see, rather go for my treatment than have a snow storm.  Never thought I would be saying something like this.
"Prepared for the worst, hope for the best and, live each day to the hilt"


Stage IV  lungs, lining, ribs, left scapula and left clavicle - Used all the hormonal drugs - tamoxifen, arimidex,  , Faslodex 250 mg,  femara, , drug break using own estrogen (progression in 7 months), rebooted femara (progression on next scan) Faslodex 500 mg ended 18 1/2 years on hormonal therapies - 2013,  Taxol - 2014 now on Doxil. 

Tricia Keegan
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Re:The waiting room!!! - Monday, March 24, 2014 5:20 PM
I hope you don't get much more snow DJ, its beginning to warm up here a little although a bad day today, fingers crossed your treatment can go ahead.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

DJ64
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Re:The waiting room!!! - Thursday, March 27, 2014 9:13 AM
On Tuesday the prediction of 14 inches of snow with high winds, I cancelled the oncologist appointment and the will give a treatment on Friday.

We received maybe 2 1/2 inches.  Just about all the business and civic places closed.  It was blustery ….  What a waste of people's time.  I am grateful for the little snow.  I want it to melt and adding another 14" to the snow we do have, no doubt it will take longer.

DJ
"Prepared for the worst, hope for the best and, live each day to the hilt"


Stage IV  lungs, lining, ribs, left scapula and left clavicle - Used all the hormonal drugs - tamoxifen, arimidex,  , Faslodex 250 mg,  femara, , drug break using own estrogen (progression in 7 months), rebooted femara (progression on next scan) Faslodex 500 mg ended 18 1/2 years on hormonal therapies - 2013,  Taxol - 2014 now on Doxil. 

Tricia Keegan
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Re:The waiting room!!! - Thursday, March 27, 2014 11:13 AM
I'm sorry the snow is delaying everything and causing such impact DJ, we get so little here that when it does snow the whole country almost shuts down!  Btw, I tried to find you on FB but there are so many with that name I gave up, will you try to find me and I'm under my name here:)
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

DJ64
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Re:The waiting room!!! - Monday, March 31, 2014 12:27 PM
Well, we only has about 2" but the whole city practically shut down.  They made such a hoopla that everyone thought it best to stay home.  I will try to find you on Facebook.  Have a great time with Rena.

Best to both,
DJ
"Prepared for the worst, hope for the best and, live each day to the hilt"


Stage IV  lungs, lining, ribs, left scapula and left clavicle - Used all the hormonal drugs - tamoxifen, arimidex,  , Faslodex 250 mg,  femara, , drug break using own estrogen (progression in 7 months), rebooted femara (progression on next scan) Faslodex 500 mg ended 18 1/2 years on hormonal therapies - 2013,  Taxol - 2014 now on Doxil. 

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