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trip2
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Posted: May 29 2008 at 9:55am |
Hubby,
So glad that tumor is not to be seen. 
Hooray is right!
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Stage 2 2003
Stage 1 2007
BRCA 1+
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susanb
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Joined: Mar 02 2008
Location: United States
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Points: 110
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Posted: May 29 2008 at 11:50am |
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Bette;
I was offered a lumpectomy and I insisted on a mastectomy, and my surgeon said that if I was going to take off one than I should do both. Why did I go with the mastectomy? Dx at 46 with a mother and grandmother who died of reoccurring breast cancers I didn't want to take the chance of cancer returning in my breasts (my mammogram was negative even though I had a 1 cm tumor). Not excited about the reconstruction (I have silicone implants) but that's another story. I figured that I couldn't afford (both health wise and financially) to have breast cancer again so off they went. Or as my husband puts it "your tits were trying to kill you so they had to go". I've also had all the girly bits removed- a total hysterectomy as that there is some thought that my grandmother may have also had ovarian cancer.
Everyone has to come to their own decision about their treatment but I do not regret my mastectomy for a minute.
Susan
DX at 46 (2 years ago!) TN grade 3 ki-67 at 54 negative nodes clean margins 4 rounds AC bilateral mastectomy
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sdreyer
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Posted: May 29 2008 at 12:09pm |
My mom opted for bilateral just as a personal choice she only had disease in the left breast but said at 50 with BC she would rather be flat chested than lopsided since she does not want to go through reconstruction. We were surprised how cute she looked with no chest my sister and I asked the surgeon if we could get a family discount to have ours done too :) No more sweaty moons in the summer, can wear anything and don't have to worry about what bra to wear or if it is sticking out, can go comando all the time! My mom is almost 2 months post op and she is still great with her decision. Now we just have hurdles with the mets taking over. She was diagnosed in March and by April 15 we found out she had cancer in the left breast, lung, liver, clavicle and femur and just 2 weeks ago found out she has more in her skull and cervicle spine.. they didn't check her head when doing the bone scan we were told there is no treatment for it anyway so why look. Both the surgeon and the onc were surprised when all the mets showed up because of 7 nodes removed only 1 had disease.
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Betty Trouble
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Posted: May 29 2008 at 12:18pm |
Thanks, Beth Anne. Doctors names and numbers would be a big help. I'm happy with my surgeon (Clarfeld at Overlake) but haven't decided definitively on reconstruction surgeon yet. As for a matching set, I understand they will put an implant in the other breast to match the one they reconstruct.
I'd like to keep the surgeries to a minimum, obviously, and do the expanders at the time of surgery. However, can they do radiation with the expander if the margins don't come back clear after surgery?
I was sitting in chemo this morning mulling all this and thinking I do NOT want to go through all this again!
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Betty Trouble
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Posted: May 29 2008 at 12:26pm |
Now y'all have me thinking I should just lop 'em both off!  I do want to reconstruct but at least I wouldn't be lopsided in the interim. I find myself staring at my bras when I do laundry and just shaking my head with wonder.
Guess I have a lot to think about over the next couple of weeks. Oy!
Thanks, everyone.
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KatePV
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Joined: Apr 20 2008
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Posted: May 29 2008 at 12:39pm |
Everyone has to make the right decision for themselves, so think carefully about it before you do it. I was so sad when I started radiation because they put tatoos on my breast and they will never look my saggy, breast fed ones. . they were not pretty to start with, but they were mine. I nursed my babies with them and now one looks very different from the other.
I honestly wished they would have removed both breast, but both the surgeon and oncologist said it was not medically necessary and if I wanted it later I could do it then. I got diagnosed and had the lumpectomy and sentinal node dissection within 4 days of getting my biopsy report back. Mine was grade 3 and they wanted to move right away. I did chemo and still have 15 more radiations to go. I think about having a double mastectomy daily. My mother had her 19 years ago and she is still with us. Maybe in a few months I will go back and have it done. I check my breast everyday wondering if there is another lump.
I turn 40 next Monday and am so sad to be 40, bald, no eyelashes/eyebrows and fat. I used to be pretty with nice blonde hair and the little bit of hair coming in is grey! how did that happen? I guess I should be thankful that I am alive and have 7 children and a husband who needs and loves me.
Good Luck with the decision you choose, but don't wait too long.
Katie
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Beth Anne
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Joined: Apr 24 2008
Location: Clairnbridge, Ireland
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Posted: May 29 2008 at 12:42pm |
Hi Betty,
Yes they can do radiation with expanders in... with that being said there are not many Radio onc's out there that are willing to do that. I am going to start radiation next week, I will be going to Dr.Mehta at Swedish Cancer Center he is one of the only ones that is trained on how to do this with the best results.
I made sure I had all of my doc's all on the same page to work together. I started by going to the Radation Onc's and made sure that he was willing to do radation with the expanders in... Then went to the breast surgon to let her know that I had the Radation onc on board, then madee sure she was will to let my reconstruction doc place the expanders... the I went to the reconstruction doc and let them know I had all of the other doc's lined up and ready to go if she aggreed.
Now this all might have worked out eaiser because all the doc's work at Swedish, I know in Bellevue they are not all so alined or so I have herd.
I will send you a priviate message with my phone number if you want the phone numbers of doc's at Swedish..
Take Care,
Beth Anne
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Dx 5/07 DCIS Stage3 gr9 A/C x 6, Abrax x 16 Bi-Mass 2/08
Navelbine x 12, finished radiation end of July 08. DX Brain Met's 2/09StageIV
CK3/09.Brain resection4/09 WBR
Dreaming of dancing with Ned!
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Betty Trouble
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Posted: May 29 2008 at 1:07pm |
Thanks, I have heard really good things about the folks at Swedish too. Things being relatively equal I opted to go to Overlake since I live in Bellevue which makes things more convenient. The reconstruction guy I have been considering is at the Polyclinic on Capitol Hill.
Katie, I sympathize with you as I'm in the same spot. Bald with about 6 eyelashes and 10 eyebrows. I hate looking in the mirror. The 'duck down' that is starting to grow back on my head - I can't really tell what color it is yet so I prefer to think that it's blond and not gray. I'm single, so this is all so hard. Toss in hotflashes because chemo threw me into menopause and this is just the pits. The weight gain is hard but I am hopeful that once I'm through the chemo I can start to exercise more. Walking and yoga are great but they don't seem to be enough.
But, it is what it is, and I'm alive. :)
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Beth Anne
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Posted: May 29 2008 at 1:20pm |
Hey Me again.... The guy at the polyclinic is good at his work but has a crapy bedside maner... my onc warned me about him saying "nothing warm and fuzzy about that one". My OB in Bellevue, also told me how good his work was...
Dr. Miles  (at Swdish)on the other hand has had breast cancer and has been through the surgery.... so she gets it.
I understand wanting to be close to home, I go into Swedish from Snohomish... Yeah looking forward to next month starting 7 weeks of radation and doing that drive everyday  with gas being $4.05....
Beth Anne
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Dx 5/07 DCIS Stage3 gr9 A/C x 6, Abrax x 16 Bi-Mass 2/08
Navelbine x 12, finished radiation end of July 08. DX Brain Met's 2/09StageIV
CK3/09.Brain resection4/09 WBR
Dreaming of dancing with Ned!
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Betty Trouble
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Posted: May 29 2008 at 1:28pm |
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Yeah, gotta admit I was not super impressed by his bedside manner but I have heard great things about his work. And have seen some of it too. On the plus side, apparently he works quite well with my surgeon so I guess there's something to be said for that.
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Beth Anne
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Posted: May 29 2008 at 1:33pm |
Betty,
Keep in mind you will be seeing him for all follow up's and expanding... 
Beth Anne
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Dx 5/07 DCIS Stage3 gr9 A/C x 6, Abrax x 16 Bi-Mass 2/08
Navelbine x 12, finished radiation end of July 08. DX Brain Met's 2/09StageIV
CK3/09.Brain resection4/09 WBR
Dreaming of dancing with Ned!
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Possum
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Joined: May 28 2008
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Posted: May 29 2008 at 4:13pm |
Hi Betty,
I had breast conservation surgery for a stage 1 (18mm) tumour and am currently having chemo. I will have to choose in the next 6 weeks or so if at the end of the chemo i wish to proceed with 4 weeks of radiotherapy or have a bilateral mastecomy and reconstruction.
This has come up because of the type of tumour (TN and basal features confirmed by the histological staining of markers in the tumour) possibly being linked to an inherited BRCA1/2 mutation. Even though I do not have a strong family history of Breast Cancer I have elected to be BRCA tested. If it turns out I carry the mutation then I will most likely opt for bilateral mastectomy and oophorectomy due to the increased chance of developing another cancer. If it turns out that I do not have a BRCA mutation then my Drs have offered my MRI scans as screening tests if I elect to keep my breasts.
The choices are not clear cut and usually very personal and individual but having as much information as possible helps I think.
Possum
Edited by Possum - May 29 2008 at 4:31pm
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TN G3 Stage1,dx 22/02/08
SN bx (3 neg nodes)
Tx FEC100(3cycles),Taxotere(3cycles)
BRCA1 Unclassified Variant
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kirby
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Posted: May 29 2008 at 8:37pm |
Christie,
I only had 4 treatments of AC. That was protocol then. Dose dense wasn't being used yet either. This was 2001. I have sometimes read how much chemo they are giving now for comparable dx and it is hard to have faith in "did I get enough". Then I have to find my place of logic and tell myself I can't change what has already happened and I am 7 years out from dx.
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kirby
dx Feb. 2001. Age 44 Lumpectomy
2cm. no nodes stage 1 grade 3
4 rnds AC, 35 rads
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CarolinOmaha
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Posted: May 30 2008 at 3:46am |
Betty,
I did a bilateral although my tumor was only in one breast because I had also been told it was easier to match them afterwards. But even more importantly, my breast cancer was discovered while preparing for breast reduction surgery. It didn't make sense to remove one and then have the other still reduced - why not do both at the same time.
My tx. was cytoxan & taxotere - my insurance wouldn't approve any of the platinums or even Xeloda which I had asked for because it was adjuvant therapy for me.
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May your heart always be joyful,
May your song always be sung,
May you stay forever young.
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trip2
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Posted: May 30 2008 at 4:05am |
Sdreyer what was your mom's pathology at diagnosis? I noticed you said she had only one positive node. She's got a battle on her hands but sounds like she has a loving family to support her.
Everytime I read about the spread your mother has I am amazed. Was she good about getting her mammos every year? I wish I could give her a hug.
Going flat chested does have it's good and bad. My surgeon told me there was no going back, wanted me to atleast talk with a plastic surgeon but even last year I was not aware they could do it all at one time. I didn't want anymore surgeries so went w/the mast and to be honest I regret it.
It is just so final! Of course I'm not talking about the ladies who have no choice in the matter.
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Stage 2 2003
Stage 1 2007
BRCA 1+
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trip2
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Posted: May 30 2008 at 4:17am |
Good morning Possum,
I was reading your post with interest and came to the part where you said your tumor was basal. Was this on your path report or did they test it separately? Whether or not you are basal atleast for now seems to play a big role in this trip neg situation. I would like to find out how you can get this done. I had read it had to be done by a special test.
Yes having all the information you can, doing your research, asking questions will help you to make that decision which as you said is very
personal and one you have to make yourself. You will have time to think.
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Edited by trip2 - May 30 2008 at 4:18am
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Stage 2 2003
Stage 1 2007
BRCA 1+
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Betty Trouble
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Posted: May 30 2008 at 4:41am |
I just wanted to say a couple of things to the group. You are all amazing! I'm not a support group type, but these forums - and this one in particular - are so very helpful in understanding the many, many ways this treatment can play out. It's dizzying to think about, but hearing what you all have been and are going through is so much more helpful in some ways than standard research.
For all the junk that's out there on the internet, it's also a great vehicle to unite so many of us. When I have my 'woe is me' moments - and I do! - I'm grateful to draw strength from women who have been through this and kicked it's a**. It reminds me that we're all stronger than we think we are.
So a hearty thanks for taking the time to share your stories.
Happy Friday!
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Beth Anne
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Posted: May 30 2008 at 5:02am |
Hi Pam,
I didn't have any special test's done it was just in my Path report and showed up on the breast that wasn't known to have cancer, when I asked my onc about the meaning of basil cell found in the other breast he told me that it was the beging of the cell's turning to cancer.
Although there has been a lot of information come out about the importance of basil cell's and TNBC....  Not sure if that helps answer your question or not....
Happy Friday 
Beth Anne
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Dx 5/07 DCIS Stage3 gr9 A/C x 6, Abrax x 16 Bi-Mass 2/08
Navelbine x 12, finished radiation end of July 08. DX Brain Met's 2/09StageIV
CK3/09.Brain resection4/09 WBR
Dreaming of dancing with Ned!
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trip2
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Posted: May 30 2008 at 5:13am |
Thank you Beth Anne,
Yes it does help. I couldn't find a thing mentioning basal on my path but will look again.
My Onc didn't understand what I meant when I asked him about mine being basal or not.  I tried explaining and he got irritated with me and I could tell it was the end of the visit.
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Stage 2 2003
Stage 1 2007
BRCA 1+
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sdreyer
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Posted: May 30 2008 at 10:29am |
trip2 wrote:
Sdreyer what was your mom's pathology at diagnosis? I noticed you said she had only one positive node. She's got a battle on her hands but sounds like she has a loving family to support her.
Everytime I read about the spread your mother has I am amazed. Was she good about getting her mammos every year? I wish I could give her a hug.
Going flat chested does have it's good and bad. My surgeon told me there was no going back, wanted me to atleast talk with a plastic surgeon but even last year I was not aware they could do it all at one time. I didn't want anymore surgeries so went w/the mast and to be honest I regret it.
It is just so final! Of course I'm not talking about the ladies who have no choice in the matter.
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Pam .. Her doctor really didn't go into pathology detail other than DCIS ( which is one of the reasons we are finding a new onc) but my mom was good doing her mammos until about 3 years ago when she lost her insurance(loss of job) and up until then she was all clear she found her lump in the left breast june of 2007 but again no insurance she was trying to get insurance at that point and she didn't want a diagnosis to keep her from getting insurance then my grandpa had a heart attack and while he was hopitalized with that and we were all caring for my grandma who passed away while grandpa was still hospitalized.. this year has been a whirlwind of events  Anyhow in February this year I found a cheapo insurance for my mom and it only covered "well " visits so after she got the mammo done I found the Show Me Health Women program in Missouri that helped with all the finanacials and now it has flipped into state medicaid with the BCCT program. When I found this program I was blown away that doctors or hospitals don't make them known. Too many people put off or can do these test for lack of insurance and there are these programs out there that nobody tells you about.. it truly is sad .
Anway back to the pathology he told us DCIS and triple negative that's about it. I have requested all of her medical records to put in a book and to bring to the new doctor. And since my sister and I take turns with the doctor appointments I went out the other night and bought a voice recorder so that all doctor sessions could be taped for future reference in case we don't understand something or forgot something we have it. (we should have done this to begin with) my mom doesn't listen to the doctors when we go she just kind of zones out so we are her voice and ears.
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