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All TopicsForum: Triple Negative → Topic: Calling all TNS

Topic: Calling all TNS

Forum: Triple Negative — Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: May 1, 2010 11:59 PM, edited May 2, 2010 12:02 AM by Titan

Titan wrote:

I think that we tn's need to have a sign up list like some of the other threads have...maybe put your age, and also what treatment you have had or are now having.

What to do you think?

I can start: age 50, diagnosed at age 49 1/2, lumpectomy, 4 AC Dose dense (every two weeks) and 4 Taxol, Dose Dense every 2 weeks. 35 rads (including 7 boosts) mammogram every 6 months for 5 years (I think). see the onc every 3 months for 3 years, see the Bs every 6 months for 3 years (I think). see the rad onc 1 year after rads...probably won't see him any more after that... I think this may be a good way to get all together...we can still have separate threads..but sometimes it would be nice to just go to one thread and have a cry or concern without worrying about not being on topic What do you all think? ..


Diagnosis: 3/18/2009, IDC, 1cm, Stage I, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Jul 31, 2012 05:31 PM FernMF wrote:

Got thru #1 treatment with no problems (so far)... the room and nurses were personal and not too clinical. I felt way younger than all others there. At 56 I guess I am young (not!) Love the picks and the drawn in eyebrows made me smile. Thanks all. Get the white cell booster tomorrow and hope to be well enough to go to work on Thursday.

Dx 4/2012, IDC, 1cm, Stage I, Grade 3, 1/1 nodes, ER-/PR-, HER2-Surgery 05/07/2012 Mastectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right); Prophylactic Mastectomy (Left)Chemotherapy 07/31/2012 Cytoxan, Taxotere
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Jul 31, 2012 06:13 PM Lory48 wrote:

CT scan results- liver is clear, but they noted a 3mm spot (noncalcified nodule?) on my lung. Primary doc is goign to consult with my oncologist and see what he wants to do.

Lory
Dx 10/10/2011, IDC, 5cm, Stage IIIb, Grade 2, 2/26 nodes, ER-/PR-, HER2-
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Jul 31, 2012 08:38 PM browerl wrote:

Hey fern you start chemo at 9:30 tomorrow and I get my head shaved at 9:30 both traumatic steps that we have to take, at least we can do it together.

Loretta
Dx 6/7/2012, IDC, 1cm, Stage I, Grade 3, ER-/PR-, HER2-Chemotherapy 07/17/2012 Cytoxan, Taxotere
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Jul 31, 2012 08:47 PM dgcote wrote:

Luck is not on my side here lately. Friday I had my 2nd chemo had a bad reaction throut closed up couldn't breath, a little benadryle cleared that up fast. Then this morning i woke up to numbness in my right hand as the morning went on it started to hurt then swell. Did not panic till it turned red then purple called nurse was sent to the ER. After waiting seems forever they did an ultrasound found a bloodclot in my neck and right arm from the port.

Out of work again was so glad to be back to work so my head would be filled with anything but my own thoughts.

More Doc apt. and more meds. Oh Joy.

Dx 4/15/2012, IDC, 3cm, Stage II, Grade 2, 0/1 nodes, ER-/PR-, HER2-Surgery 05/31/2012 Mastectomy (Left)Chemotherapy 07/06/2012 Adriamycin, Cytoxan, TaxotereChemotherapy 07/06/2012 Cytoxan, Taxotere
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Jul 31, 2012 08:47 PM, edited Jul 31, 2012 08:51 PM by dgcote

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Jul 31, 2012 08:49 PM, edited Jul 31, 2012 08:50 PM by dgcote

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Jul 31, 2012 09:10 PM onvacation wrote:

dgcote - ((((HUGS))))

Kim
Dx 1/30/2012, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jul 31, 2012 09:16 PM LuvRVing wrote:

Tif - do they like mini-golf?  CoolCrest is pretty nice, it could be an evening thing.  What you guys need is a break in the heat and some rain! 

Michelle - read my blog at www.mch-breastcancer.blogspot.com - Be kind to one another!
Dx 6/15/2010, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR-, HER2-Dx 3/29/2011, IDC, 4cm, Stage IIIb, Grade 3, 4/21 nodes, ER-/PR-, HER2-Dx 5/11/2012, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2-
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Jul 31, 2012 09:26 PM Titan wrote:

mmizerak...if only it were that easy!   get treatment, be done, cured, whatever......however, we all know too much about this crap..that sometimes...it isn't that easy....

I dunno...all I can say..is that once you are done with treatment...work on getting yourself back to somewhat normal..it takes awhile both mentally and phyiscally but yeah..it can be done...someone said it is like an elephant in the room...at first it is huge but as time goes on it gets smaller...and that is true....

at one year out I was excited ..at 2 I was thrilled..at 3 I was really excited..but now I just want it to be 4 years...it just never ends...lol

Hey Cocker...miss you girl..glad you checked it

And Bernie..you keep me laughing on a daily basis...love it..keep those jokes coming

Dx 3/18/2009, IDC, 1cm, Stage I, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Jul 31, 2012 09:43 PM Tazzy wrote:

Wanted to check in and say hi to you all.

I'm not even going to try and respond to you all, leave that to Cocker - who's MIA again???

For those going through treatment I am sending you such positive vibes and hope you have minial SE's.

Inmate, Bernie - I love those pictures.   Embrace what we are now and what we were eh?

So my time is almost here... surgery Thursday.  In a very calm place today - was a total wreck yesterday.  I keep telling myself that this time next week I'll be in recovery mode and that as each day, week passes this will be in my rearview mirror.  then onto rads, but that's in the future.  One day at a time eh? 

Thinking of you all xxx

You never know how strong you are until being strong is the only choice you have
Dx 1/12/2012, IDC, 6cm+, Stage IIIb, Grade 3, ER-/PR-, HER2-Surgery Mastectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Right)Radiation Therapy ExternalChemotherapy 01/27/2012 Adriamycin, CytoxanChemotherapy 04/20/2012 Taxotere
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Jul 31, 2012 09:46 PM LuvRVing wrote:

Tazzy - best of luck with your surgery!  Yes, one day at a time!

Michelle - read my blog at www.mch-breastcancer.blogspot.com - Be kind to one another!
Dx 6/15/2010, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR-, HER2-Dx 3/29/2011, IDC, 4cm, Stage IIIb, Grade 3, 4/21 nodes, ER-/PR-, HER2-Dx 5/11/2012, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2-
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Jul 31, 2012 10:15 PM Tazzy wrote:

Thanks Michelle.  

You never know how strong you are until being strong is the only choice you have
Dx 1/12/2012, IDC, 6cm+, Stage IIIb, Grade 3, ER-/PR-, HER2-Surgery Mastectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Right)Radiation Therapy ExternalChemotherapy 01/27/2012 Adriamycin, CytoxanChemotherapy 04/20/2012 Taxotere
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Jul 31, 2012 10:21 PM Cocker_Spaniel wrote:

No Taz not MIA just quietly sittin here reading everyones posts. Not much happening in this paert of the world at the moment so not a lot to tell you but thinking of you ladies. 

Went to my oncologists appointment before rads today. She said I had a 50/50 chance of a recurrence.  What do you ladies think of that, excellent, great, good, ok, not bad, lousy, terrible or ugh.  A bit like being pregnant and you wanting a girl and getting a boy. 

Great pics Inmate. You take such a wonderful picture. Very photogenic.

Hope - glad to hear from you and sending a huge big hug.

Tazzy - will be thinking of you on Thursday. All will be well.

Heather at last.  You were missing in action longer than me.  Great to have you back with us.

Jan - I just don't know what to do with myself up here away from home.  Once you have had your treatment the day just drags.  I really want to be at home and see how my old fellars cafe is going although he tells me he does better and better every day.  My daughter tells me the same so I know its true.  He's working ten hour days though so hopefully he will be ok.

Thinking of you ladies and hoping side effects are minimal and everything is ok for you all.  Oh yea my old fellar said that my Chloe hasn't been well and he thinks she is missing me.  Not even chewing anything, must be sick lol. Bless her little heart, until I get home and see what she has done. Love to everyone. Annie

Dx 11/3/2011, IDC, 6cm+, Stage IIIa, Grade 3, 4/11 nodes, ER-/PR-, HER2-
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Jul 31, 2012 10:54 PM JazzyJ wrote:

Hi All! Just a quick note to check in. Had my fourth and last A/C today, YIPEE!!! Now on to Taxol. Thanks again to all who aided with the comforting tips including Claritin, Watermelon, shave the head early, etc... So much GREAT advise from caring people who know what it's really like!! Not a walk in the park, but manageable.
I got an extra bonus since my sister and very best friend from Chicago is visiting for Two weeks! Sheila and Hubby celebrated with a cold Ale with dinner .... I had Ice Water :-(
Inmate - You are a Rock Star! So full of spirit and life all around you!
Tazzy - Good luck on Thursday. Will be thinking about you...
Just wanted to check in to let you all know that you are in my heart and prayers. I continue to be so grateful with finding you all xoxoxox


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Jul 31, 2012 11:11 PM JAN69 wrote:

Cocker - I can understand how slow your days must pass.  That, and wanting to be home to cheer the old feller on.  How are your hands and fingers?  Hope they are back to normal by now. 

Tazzy - Holding your hand during surgery.  All will be fine.  Surgery was the easiest part for me.

dgcote - How frightening!  Things can only get better!

 OK ladies who are reading/have read those Shades of Gray:  Heard on news tonight that there is an epidemic of pregancies since the books came out. Just sayin'

Hope all of you get some heat relief and much needed rain. Jan

Dx 1/2011, ILC, Stage IIIa, 6/12 nodes, ER-/PR-, HER2-
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Jul 31, 2012 11:13 PM DorMac wrote:

Cocker - Your oncologist said you had a 50/50 chance of a recurrence AFTER chemo and rads? That seems very high - I was told those odds if I didn't do chemo by my onc. Anyone else given odds? Hope she's not right.

Doreen 

Dx 12/2011, IDC, 1cm, Stage I, Grade 3, 0/7 nodes, ER-/PR-, HER2-Surgery 02/10/2012 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection, Sentinel Lymph Node Dissection (Left)Chemotherapy 04/17/2012 Cytoxan, Taxotere
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Jul 31, 2012 11:30 PM LuvRVing wrote:

Jan - I read the Fifty Shades book.  Glad they weren't around when I was in my 30's...I might have ended up with a few more kids...lol!  I'll never look at pink champagne the same way, ever!

Doreen and Annie - statistically, there is a higher risk of recurrence with stage 3 than with stage 1.  That said, it either happens or it doesn't.  It's all pretty much out of our control.  There are women with DCIS who end up with distant mets and women who have stage 3 with lots of nodes involved who come out on the other end and go on to live out their lives.  My RO from Dana Farber told me I had a 10% chance of recurrence after BMX, DD chemo and intense rads.  And here I am with mets in less than four months after finishing treatment, and I've been on metformin the whole time.  It's just so unpredictable.

Michelle - read my blog at www.mch-breastcancer.blogspot.com - Be kind to one another!
Dx 6/15/2010, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR-, HER2-Dx 3/29/2011, IDC, 4cm, Stage IIIb, Grade 3, 4/21 nodes, ER-/PR-, HER2-Dx 5/11/2012, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2-
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Jul 31, 2012 11:48 PM, edited Jul 31, 2012 11:49 PM by PinkyWI

The Fifty Shades of Grey comments made me LOL!  When I went for my 1st chemo treatment on 7/26, they showed me a shelf of books that I could pick from.  I asked if they had Fifty Shades of Grey and the gal laughed and said it certainly wouldn't be there any longer if anyone had donated it.  Well, low and behold, I got a copy in the mail on Saturday -- seems that my husband DOES listen to what I say -- sometimes.  He ordered the first book for me -- no chance of getting pregnant though so I will have some fun with it...I think. Wink  Sadly, I can't stay awake long enough at the moment to read it -- only on page 9 *sigh*

LuvRVing, I want to thank you for posting your blog site.  I read the whole thing -- you are an inspiration.  Hugs to you!

Dx 5/23/2012, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER-/PR-, HER2-Radiation Therapy ExternalSurgery 06/21/2012 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Chemotherapy 07/26/2012 Adriamycin, Cytoxan, Taxol
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Aug 1, 2012 12:37 AM bak94 wrote:

Feeling sad and stressed today. not necessarily cancer related. My bone scan was canceled because insurance has not approved it yet, they will, just hasn't happened yet. My sister is about to be foreclosed on, wants me to help her with...not sure what I can do for her. I can't help financially, she owes too much. She hasn't been able to find a job for the past 2 years. Yep, thats right, 2 years. I know it is bad out there, but just find ANY job. She won't venture out of her comfort zone and that is going to leave her out on the streets. Well, not really. She will be able to stay with my other sis or with her daughter, but they all have small places. She can't stay with me because I have animals and she is extremely allergic and has asthma. How am I going to help? I have no answers for her. There doesn't seem to be any welfare, she is 58 and has no retirement saved up, she is single, her daughter is a single mom of 2 kids, with no help from the father. Frustrated that I can't fix life. I can't fix a darn thing, I can't even fix my own life. How am I going to help her tomorrow? I guess I will help her write a letter, she is required to respond to the court within 20 days. There is no money to hire a lawyer, which is needed to decipher all the legal mumbo jumbo in the letter she just received. I guess I can only do my best to help.

12/02 stage 2b TN rt. lump, chemo, rads. 2nd time 4/05/11 new primary left breast. BRCA1+. Neoadj.chemo BMX 11/30/11 rads. Complete response to 6 ac then 12 abraxane/avastin. er 3% pr<1% her2 neg. Stage3or4?Depends on who you ask!
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Aug 1, 2012 12:41 AM BernieEllen wrote:

Dx 2/16/2011, IDC, 6cm+, Stage IIb, 0/3 nodes, ER-/PR-, HER2-
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Aug 1, 2012 02:04 AM christina1961 wrote:

www.newswise.com/articles/drug...

Dx 2/5/2011, IDC, 2cm, Stage II, Grade 3, 2/16 nodes, ER+/PR-, HER2-
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Aug 1, 2012 05:37 AM Cocker_Spaniel wrote:

Dormac - I had a 64% of recurrence before chemo and rads so I suppose 50% is better but it made me a bit down to only get that.

Bak94 - what a terrible thing your sister is going through.  Can she get any assistance of the state at all.  You both must be out of your mind with worry. When my girl was in a similar situation because her marriage broke up and she had no job for a while we used to help out by getting groceries for her and paying for school trips but it was a hard time for her.  There is a reason for this so people tell me,  I guess we just have to have faith that things will work out ok. Thinking of you and hoping a solution can be found.

Tazzy - my hand is holding yours for tomorrow just like Jan's. We will all be there with you. You will be fine and everything will go as planned.  Sending great big hugs to you.

JazzyJ - congratulations on your last chemo. I knew you could do it.  Taxol will be much easier on you.  So you go girl.

Luv - just keep away from those 50 shades of gray.  With your looks you will have every male around knocking at your door.  Shame on you for reading them lol.

Kathrynn - hey girl hows your neighbour who is one foot away and how is the gambling going, won anything lately.  Don't you start reading those books or we won't be able to get any sense out of you. 

Titan - you too, what have you won at gambling? Have you been keeping up with the olympics.  I'm not much of a telle person but its so exciting to watch.

Thinking of you all and sending big hugs to all of you wonderful ladies. Annie

Big warm hugs to Inmate and Hope. 

Dx 11/3/2011, IDC, 6cm+, Stage IIIa, Grade 3, 4/11 nodes, ER-/PR-, HER2-
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Aug 1, 2012 09:14 AM Luah wrote:

Lory: Good to hear the liver is clear - what a relief! Hopefully they can rule out any threat from that tiny lung spot. I have something benign that pops up on scans - a holdover from some past lung problem I never knew I had.  

Bak: Sorry for what you and your sis are going through. I know what it feels like to want to try to fix a family member's life, very stressful - but ultimately all you can do is lend a helping hand where you can and look after yourself too.

Jazzy: Congrats on being done AC. Hopefully you'll find the taxol easier - I know I did. And my hair started growing back too!   

Fern: Congrats on getting through your first treatment. Don't be surprised if you find days 3-5 the hardest; that's when I felt most tired and achy. Be sure to rest as much as you can, but also get out and walk if you feel up to it. Physical activity - in manageable doses - really helps.

dgcote: Glad you got the ER... and hope you can get that clot under control. So often, it's all the unexpected side complications of cancer treatment that make life most miserable. But you will get through it!     

We've been through some things together/With trunks of memories still to come/Long may you run (Neil Young). Lx, ALND, 4 DD AC &12 weekly Taxol, 31 rads, completed Jul 10
Dx 9/14/2009, IDC, 2cm, Stage IIb, Grade 3, 1/14 nodes, ER-/PR-, HER2-
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Aug 1, 2012 09:39 AM Lady_Miz wrote:

Thank you Titan...I truly appreciate your thoughts!  Yes, it would be nice if everything were that easy.

Now, I need to take a poll of sorts and would like to see what y'all have for an answer.  I need to know how many of you did NOT have either a PET or CT scan throughout diagnosis, treatment and through check-ups.  If, like me, you had a bone scan and x-rays only.  I am starting to think that I am of the minority amongst TNBC patiens who have not had either a PET or a CT but wan to be sure before I inquire with my MO.  All of your input would be much appreciated!

Thank you and have a blessed day!Embarassed

Dx 8/26/2011, IDC, 3cm, Stage IIb, Grade 3, 0/4 nodes, ER-/PR-, HER2-Surgery 09/15/2011 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 10/14/2011 Adriamycin, Cytoxan, TaxolRadiation Therapy 02/23/2012 External
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Aug 1, 2012 10:11 AM TifJ wrote:

mmizerak- I had a CT and chest x-rays only. Insurance denied PET (saying because I was Stage 1, it wasn't necessary). I did not have a bone scan until I had low back and rib pain about a year later. Turned out to be nothing but strain from PT.

Michelle- an evening at Cool Crest might be good. We used to live not far from there. Can't go on weekend evenings-too many teenagers and lots of fights!

Tazzy- will be thinking of you tomorrow and wishing you a speedy recovery!

Bak- I wish I had some advice. I went through this with my brother while in treatment. He lost his home and ended up in a homeless shelter for almost a year. He is a very lazy person and had no ambition to find a job. I could not have him stay here as he has a muscular disease (does not contribute to the laziness!) and my home has lots of steps, besides my husband would probably kill him- my husband can't stand laziness! Anyway, his disease progressed and we were able to get him into an assisted living facility. He has caused me a great deal of stress in my life as he is ungrateful and thinks I (and the whole world) owes him something. While I doubt this in anyway mirrors you sister, just wanted to say I know how stressful it can be to deal with family members troubles! i hope a solution presents itself- and soon!

Dx 8/30/2010, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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Aug 1, 2012 10:18 AM fishinurse wrote:

spoke too soon yesterday,hair is really falling out,its long and thick and instead of finding dust bunnies, i am finding hair bunnies. Have an appt to get it cut.But, after seeing everyone's "topless" pics, i am ok with it.Focusing on what i am thankful for.:)

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Aug 1, 2012 10:22 AM Tazzy wrote:

Thanks all for your wonderful well wishes... I know you are there with me tomorrow.  

mmizerak - I had chest x-rays, bone density scan, mri and CT scan just after dx.   Good luck.

I know I cant answer you all but am thinking of you nonetheless - wishing you all good, better days with as little stress as possible.

You never know how strong you are until being strong is the only choice you have
Dx 1/12/2012, IDC, 6cm+, Stage IIIb, Grade 3, ER-/PR-, HER2-Surgery Mastectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Right)Radiation Therapy ExternalChemotherapy 01/27/2012 Adriamycin, CytoxanChemotherapy 04/20/2012 Taxotere
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Aug 1, 2012 10:26 AM Mags20487 wrote:

bak--so sorry that you have this to cope with on top of all that BC throws at us.  I wish a could offer words of wisdom but I have nothing.  Is there no assistance available where you are through the government??

Cocker...so happy you are back.  50/50 does sound a little scary but you are a tough and scrappy lady who will come out on the sunny 50 side!

Le sucks--really bad.  Really not liking the reality of sleeves daily and MLD...

Tazzy--we will all be here with you during your surgery.  After chemo it will be a piece of cake--at least for me the surgery was easier!  Hugs and strength as you face this new page.

mmiserak--I have had 3 pet scans since DX in August last year.  One right away, then one in Jan when chemo done then another in April after getting an elevated CA 27-29 result.  My Onc loves the scans and I will be having another in Oct when i go back for my 3 month follow up...docs are all over the place with this.  Some scan some do not unless you present with symptoms.  My onc says at least with the scan we find it earlier if there is mets and can fight it down.  Sometimes it is an insurance issue also.  Have you flat out requested the scan and been denied an order from your onc?  If so perhaps change the approach and let them know the anxiety you have by not having had a scan and TELL them you want one. Or maybe your primary care doc will order one for you??

Maggie

I may have cancer but it will NOT have me! DX @43yrs old triple negative metaplastic. BMX 8/23/11. 4 taxol and 4 AC finished 12/29/11 35 rads completed 3/16/12 bring on the foobies!
Dx 8/17/2011, IDC, 2cm, Stage IIa, Grade 3, 3/18 nodes, ER-/PR-, HER2-
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Aug 1, 2012 10:30 AM Mags20487 wrote:

almost forgot...1 year ago today was the day I found the telltale lump and my life changed dramatically...wow..how quickly a year has passed by.

Mags

I may have cancer but it will NOT have me! DX @43yrs old triple negative metaplastic. BMX 8/23/11. 4 taxol and 4 AC finished 12/29/11 35 rads completed 3/16/12 bring on the foobies!
Dx 8/17/2011, IDC, 2cm, Stage IIa, Grade 3, 3/18 nodes, ER-/PR-, HER2-
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Aug 1, 2012 10:33 AM LuvRVing wrote:

mmizerak - I had a PET/CT, chest xray and MRI with my recurrence last year. 

Bak - so sorry about your sister's plight.  That's a horrible situation.

Tif - there's always ChuckE Cheese - they pretty much keep the riff-raff out of there.  And it will be air-conditioned!

I just went for a 40 minute bike ride.  Now I need a shower before the grandkids descend upon me for the afternoon.  I hope the skies clear up; otherwise, lake activities won't be much fun!

Michelle - read my blog at www.mch-breastcancer.blogspot.com - Be kind to one another!
Dx 6/15/2010, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR-, HER2-Dx 3/29/2011, IDC, 4cm, Stage IIIb, Grade 3, 4/21 nodes, ER-/PR-, HER2-Dx 5/11/2012, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2-

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