Introduce Yourself

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Rose Cafe523
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Re:Introduce Yourself - Sunday, March 20, 2011 7:43 PM
Let me say this from a perspective of a nurse and not an oncology nurse.  They may beable to access your veins on the side that is allowed for now, but after chemo, and years later, these are even harder to access with not many options.  You will then find that as you get older, they even have more trouble getting into veins on the side they are allowed to go in to, due to the chemo on the veins they used!!!  I would insist on a port if it was me. 
Rose
 Pink Impacts Forever
5-23-06 DCIS High Grade
Strong family history BC/OVCA
denied(lost appeals)out of network surgery
10-30-06 BM SICA left,DIEP right
Nodes Neg No chemo or rads 
Revisions along with LAVH/BSO/TVT 1-23-08
Biopsies x 3 10/20/08,neg
Bone scan 2/23/11 spot on R frontal and occiptal bone
PET/CT scan 3/4/11 negative

maggs56
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Re:Introduce Yourself - Tuesday, March 22, 2011 6:02 PM
Thank you so much for your encouragement. 

I have decided to stick with the chemo.  I know it is best to do so.

I am concerned now about the port vs. not using the port.  The doctor wanted to use the port and the oncology nurse said I had great veins and didn't need it.  I hope she did not make a mistake - perphaps I will talk to her about it.

Tricia Keegan
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Re:Introduce Yourself - Tuesday, March 22, 2011 6:23 PM
Maggs,

I'm so glad you decided to stick with the chemo and know you've made a good decision you'll be glad of in the future.

As to the port I hope you'll learn from my mistake, I refused one and by the third chemo was waiting an extra two hours with so much stress/pokes etc that I requested one then!!
To this day (almost six years later) they still have trouble finding a vein for blood draws etc, the veins don't recover and this for life so do think carefully before refusing the port.  I wish I had had one from this beginning as these drugs are so toxic they do damage your veins:(
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

GreenSleeves
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Re:Introduce Yourself - Friday, March 25, 2011 11:49 AM
I'm new to the Forum and don't have a clue how to navigate or post.  I just got off the phone with my oncologist to ask about how to refer to my condition here - people post all kinds of abbreviations that I don't understand!  LOL.  My cancer was diagnosed in September of 2010.  It took 3 surgeries to get clean margins - the final "size" of the tumor was 1.2 cm.  I don't really understand stages and grades - he said pT1B0, grade 2, neither fast nor slow-growing, estrogen positive 95%, Pra positive 80%.  Atr2Neu Negative.  I haven't a clue what all that means or how to abbreviate for my posting information.  I had radiation, the radiation doctor wrote "5000 cgy" but because of the boost I had 6000.  Not sure what those numbers mean in reference to other people's posts that include things like "RADS 30X".
 
My family history of breast cancer is strong - my Mom, my Mom's older sister, and my older sister (who died from the disease in 2004).  I would like to know what positives/negatives there are about having the genetic test - I have a son, and one remaining sister, who has a daughter.  Would having testing on myself be valuable for them?
 
I have been prescribed but not yet taken the first pill of Arimidex - I will start today.  I've read about side effects and have serious concerns and would love to ask questions here... but I don't yet know what questions would be important to me.  I feel like such a newcomer, and I'm very confused. 
 
My radiation ended 5 weeks ago, and I've got no serious side effects.  However, a woman I met said my body is still changing as a result, and I may still develop problems.  My oncologist disagreed - he said side effects would most likely have shown up already, and how I'm feeling today is probably how I will continue to feel.  I sure hope so.
 
I would love to be taken under the wing of someone here and taught how to navigate the forums and how to post my questions and find the answers.  Please send me a private message here at the Forum - I'm happy to have found a "family" of survivors I can talk to!
 
Thank you for any help you can give me!
 
GreenSleeves (because I have a green thumb.... lol)
<message edited by GreenSleeves on Friday, March 25, 2011 4:27 PM>

Her Dotness
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Re:Introduce Yourself - Friday, March 25, 2011 12:26 PM
GreenSleeves, welcome! You'll soon learn how to make your way around the site. Don't hesitate to ask if you can't figure out how to get where you want to go or how things are done on the site.

Sounds like looking into genetic testing might be a good idea as definite as your unfortunate family history is. You might speak with your sister about her getting tested, too. There would be a greater risk for your children and hers if both of you test positive for the gene markers. While you'd know something if you get tested, you'd both have more information if each of you gets tested or at least goes through genetic counseling to find out if testing is recommended. One of you might be positive for one or both markers and the other negative, so only one of you being tested wouldn't necessarily provide any helpful information for future generations.

There are women here who know a lot more about that than I do, so I'm sure someone will come along who can advise you far better than I've been able to do.

Know that you're heartily welcomed to our supportive group nevertheless.

Dot
 
[Edited to remove info no longer needed thanks to Tricia's being so prompt on the spot to provide that useful link to the Welcome area. I was wracking my feeble mind trying to recall where that glossary of abbreviations was, so THANKS MUCH from me, too, Tricia.]
<message edited by Her Dotness on Friday, March 25, 2011 5:23 PM>
dx 11/29/10 DCIS/IDC
1/5/11 lumpectomy, SLND 2+, ALND - 
T1c, clean margins!
er +/pr + (My little nasty was an estrogen drunk, said my med onc.) HER2 -
Chemo: TC Done 4/30/11 
Rads:  Done 6/30/11 
Arimidex 7/11-? 

Tricia Keegan
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Re:Introduce Yourself - Friday, March 25, 2011 3:53 PM
Hi Greensleeves,

This link will help you navigate your way around the board if you check the F&Q  http://apps.komen.org/Forums/tt.aspx?forumid=3
 
There's also some info there on the meaning of some of the abbreviations used here and some words you may see in your pathology report and what they mean.

It sounds like you found this fairly early, the hormone positive is a good thing and means arimdiex will help you avoid a recurrance, you'll know the questions you need to ask as you go along.  I've been taking it for five years and just had some joint/bone aches which can be helped by taking a supplement of glucosamine/chondroitn daily.
I think any side effects are worth it to avoid a recurrance:)

I don't think you should have many side effects after the radiation but may feel an itch or sharp pain now and then which is nothing to worry about.  Sometimes months later a few women can feel a hardened area which may feel like a lump but is usually scar tissue from the rads, if you do happen to have this have it checked but don't panic:)

The her2 status being negative is good too as if positive it usually means a more fast growing cancer, so all in all it looks like good news for you so far!

I did'nt have genetic testing but many of the ladies here did, there's an excellent site to help advise you but I don't have the link to hand, if you google Facing our risk....or facing your risk  it should come up (sorry can't recall the exact address right now.

Good luck as you begin your arimidex and hope it goes well for you and please feel free to ask any questions or send me a private message if you need to. If you check out the hormone therapy thread you'll see a lot of questions about this med that have already been asked which may help!
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

alli3300
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Re:Introduce Yourself - Sunday, March 27, 2011 9:23 AM
Hello!

I am Alli.  Diagnosed June 15, 2010 at 39.  I had a scare in '08.  Surgical biopsy and all good.  Films in '09 were clear then not clear in 2010 and here we are.  I knew from the minute that they were doing my mammogram in June that it was cancer.  The films were taking too long for them to take.  The feeling that something was wrong never went away and my instinct was confirmed when my breast surgeon called me on June 15 to give me my diagnosis.
Diagnosed on 6/15/10 with early stage 1 DCIS
Lumpectomy 7/15/10, no node involvement
Re-excision in August
Finished 36 rounds of radiation on 11/4/10
Started Tamoxifen on 11/11/10
First post treatment mammogram on 2/14/11 and NO EVIDENCE OF DISEASE!!!!!!!!!!!!!


JulieS
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Re:Introduce Yourself - Sunday, March 27, 2011 12:38 PM
Hi Alli and Welcome!
There are lots of friendly women here and a few guys so fill free to jump in to any post you want to reply to  or ask questions.

Hope and strength,
Julie S
Bothell, WA
dx 5/07 IDC
lumpectomy 6/14/07 1.5cm
er/pr + Nodes negative
finished rads 9/13
Tamoxfen 9/07- 8/09
Arimidex 8/09-

Her Dotness
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Re:Introduce Yourself - Sunday, March 27, 2011 1:32 PM
Hi, Alli, and welcome!

Grats much on the latest mammo. No more bc is what we all want, that's for sure! Of course, we all wanted none of it to start with...oh, well...

But, I must say that I'd likely never have met the many wonderful people on this site had I not had the dubious luck of getting bc. Life hands you some good things along with the not-so-good ones, huh?

Dot
dx 11/29/10 DCIS/IDC
1/5/11 lumpectomy, SLND 2+, ALND - 
T1c, clean margins!
er +/pr + (My little nasty was an estrogen drunk, said my med onc.) HER2 -
Chemo: TC Done 4/30/11 
Rads:  Done 6/30/11 
Arimidex 7/11-? 

sharonma
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Re:Introduce Yourself - Sunday, March 27, 2011 10:07 PM
Greensleves,
About the genetic testing.  Your oncologist is usually the one to order the test, and should order a consult if your family history warrants.  It starts with an interview with a certified genetic counselor.  It is an extensive interview that takes about two hours.  You should come to the appt with a detailed family history with information  of breast, gyn, or pancreatic cancers and age of onset.  If the counselor determines that you are a candidate for the test, and if so you will have blood drawn, and sign a consent.  Then the results are given in an appt about 2-3 weeks later.  The test is about $3500 so you want to be sure your insurance company is on board and has approved the testing.
Although I have a moderate family history, I was negative.  The good thing about now my daughter ahs the documentation to start screenings at age 28.
So I hope that helped with the genetic testing question.
And welcome!
They will probably not test any other family members unless you are positive.  It's surprising how many are negative, even with a strong family history.
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,  

scootersmom
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Re:Introduce Yourself - Thursday, March 31, 2011 1:31 PM
I am new to "Kolmenville".  I was diagnosed with Stage 0 DCIS and after my lumpectomy it was discovered I have LCIS as well.  Since my margins were not "clean", I now get to have a mastectomy at the end of April.  The surgeon had a wonderful manner about him and has been extremely caring.  I've met with the plastic surgeon as well as the oncologist.  What nice people.  They are much more caring than the nurse who is trained as a "breast health navigator" at the hospital.  After my biopsy, she was the one to give me the news about the DCIS.  Talk about unnerving.  Immediately she began asking me who the surgeon was going to be and who the oncologist was that I was going to use.  I just eight words change my life forever!!  What the heck??  Does everyone carry around these names in the event that they might need them??????

I've met some caring people during this "trip" and some that are just idiots.  Anyone else have this issue???

In addition, I now need to choose if this will be a single or double mastectomy.  This is the most troubling for me as I am trying to decide and be comfortable with the decision.  So far the genetic test showed that I do not have the breast cancer gene nor do I have the gene for ovarian cancer.  Has anyone else undergone the same thing?

 
<message edited by scootersmom on Thursday, March 31, 2011 1:50 PM>

JulieS
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Re:Introduce Yourself - Thursday, March 31, 2011 2:11 PM
Skooters Mom,
Welcome to the club no one wants to belong to...I am glad you found surgeons and oncologists that you like.  It is the biggest step in this journey...liking and trusting our drs.
I hope you can find answers that will make the choice easier for you, we each need to decide what is best for ourselves.
Hope and strength,
Julie S
Bothell, WA
dx 5/07 IDC
lumpectomy 6/14/07 1.5cm
er/pr + Nodes negative
finished rads 9/13
Tamoxfen 9/07- 8/09
Arimidex 8/09-

Tricia Keegan
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Re:Introduce Yourself - Thursday, March 31, 2011 2:56 PM
Hi Scooters Mom,

Yes, I think we all met a nurse or Dr like that lol:)

I had a lumpectomy so can't help much, but check out the recon/surgery forum where you'll  hear from other's who had to make this tough decision too:)
Good luck and keep us posted!
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:Introduce Yourself - Friday, April 01, 2011 6:01 AM
Hi scooter,
Welcome to Komenville!
If you go to the surgery and reconstruction forum, there is a thread, "has anyone done that".  There was a lengthy discussion on this subject.  Although I must warn you, some of it is a little contentious. 
I had a ILC, with some DCIS and I had a single with immediate DIEP reconstruction.  I was brca neg.  I did not want to take the healthy breast, and have not regretted one minute of my decision.  It does mean every 6 month screenings for a few years, but I can live with that.
 The bottom line is, with all the opinions and experiences you read about and hear, only you can make the decision. 
I guess my philosophy was/is, that you can always take more, but you can't put it back.

I would ask for a new nurse navigator.  Doesn't sound like she is a good fit.
And good luck to you!
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,  

scootersmom
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Re:Introduce Yourself - Friday, April 01, 2011 2:08 PM
Thank you everyone.  I am still thinking very hard about my choice of single or double. I am not a candidate for immediate reconstruction.  The plastic surgeon will be there to install the expander and to stitch me up.  The reconstruction will be over two additional surgeries.  So this too has me stressed.  The only thing that I can do is to take it one day at a time. 

Again thanks for the input and the suggestions.

bluewillowskys
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new to the board - Friday, April 08, 2011 5:46 AM
Hi I am Lisa, 42, with three kids ages 25,23,18. I live in WISCONSIN and am Going through a divorce and was just dx with DCIS yesterday afternoon. My gut instinct had been telling me it was positive ever since i had the biopsy last Friday. I got the preliminary results from my family doctor. I have a meeting with my surgeon on Tuesday to start doing any other tests and figuring out my treatment plan.

Rigt now I am praying that it will only involve a lumpectomy and radiation. I dont know if i am strong enough mentally and emotionally to handle chemo or a mastectomy.

I do have good news in that I found out my female doctor is the director of the breast health center i am going to for treatment.

Tricia Keegan
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Re:new to the board - Friday, April 08, 2011 7:44 AM
Hi Lisa,

I'm so sorry to hear your diagnosis and especially at such a difficult time in your life, although I suppose there really is no good time for bc!!

Good luck with your appt and keep us posted on what treatment you'll be having:)
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

mary l
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Re:new to the board - Friday, April 08, 2011 8:26 AM
Hi Lisa, I am so sorry that you are going through so much and now cancer.  I am glad that you found this wonderful site.  There are many women and a few men who have all been where you are right now.  It is so helpful to be able to come here when you have questions, concerns or just need to talk to someone.  We are always here.  I hope you will come back and let us know how your meeting with the surgeon went.  I will be praying for you and sending my Best Wishes,   Mary L            
Diag. Oct 2003 with 6mm mass, IDC grade III ductal carcinoma in-situ, Inflammatory Breast Cancer stage IIIB, Her2+++.   I had A/C followed by Taxotere (only had 2tx as I had heart problems from it); Left Mastectomy followed by 35 rads.  Recurence in 9 months as skin mets to mast. site. tx Carboplatin/Herceptin,  stayed on Herceptin every other week for almost 4 years only stopping when my ejection fraction would get too low. off herceptin & ned 3 years in 2010

boody
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Re:Introduce Yourself - Friday, April 08, 2011 2:32 PM
Hi, I'm Carolyn and I've had BC for 2 years. I had a double mastectomy, my chest still hurts. Does anybody recommend a non-prescription painkiller? I lost my insurance last year.

Tricia Keegan
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Re:Introduce Yourself - Friday, April 08, 2011 2:36 PM
Hi Carolyn,

Please try to post your question on the surgeries/recon forum where you may get more replies and many others will see it.:)
Have you asked your surgeon about this ongoing pain???
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

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