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Tamlyn110 View Drop Down
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    Posted: Jul 31 2009 at 4:16pm
Hi, I am new here although I have been reading posts since I learned of my diagnosis on June 29, 2009. I was diagnosed with IDC, grade 3, TN.  After my petscan they said it looks like I have lymph node involvement. I am sceduled for a bilateral masectomy with reconstruction (expanders) on Aug. 5.  I am scared to death as I read all the stories of how painful the expanders are. I'm also scared that I have made the wrong decision in having a masectomy let alone a double one. My tumor is large for the size of my breast and I do have "mutifocal" i guess they call it (more than one spot in breast) so I feelbetter about the one with cancer being removed but the other one I have fibrocystic diease so it hurts alot so I figured I would have it removed also and they would both look similiar. I guess I am just looking for some reassurance that I did not make a "bad" decision.
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ratherBdiving View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ratherBdiving Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 4:57pm
Hi Tamlyn -

Welcome to the forum.  I am new myself.  I was diagnosed in April with TNBC, Stage 1, Grade 3.  I chose to have bilateral mastectomy with expansion reconstruction as well.  I chose the bilateral mastectomy because there is such a high chance of recurrance, I just wanted to do everything possible to stop this now!  I also had lumps in the non-cancer breast.

I have to say that I am happy with the decision and I haven't found the expanders to be that bad.  I have some prickly kind of pins and needles sensation on my breasts at times.  I had my first expansion about 2 weeks ago (125 cc per side).  It wasn't horrible...just felt like pulled muscles for a couple of days afterward.  Doctor offered Valium but Ibuprofin worked fine for me.  Your breasts will feel pretty hard.  Massage with soap or lotion really helps loosen them up.  You may feel folds or ripples under your skin which is odd.

You have listed many good reasons to have chosen bilat mast.  The recovery for the mastectomy is going to be the same whether you have the expanders done or not so you may as well start the reconstruction process right away.  I don't think you have made a "bad" decision in any way and, although it isn't fun, I hope your experience goes as "well" as mine has.  Good luck and let me know if you have any more questions!  Take care!
dx 5/09, age 35, IDC TNBC, BRCA-
stage 1, grade 3, 1.2 cm
bi-mx 6/09, expander recon, SNB - neg 0/2
A/C 4x DD, T/Carbo 12 weekly, completed 12/10/09
NED 12/31/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 5:24pm
Dear Tamlyn,
 
My daughter Lori was dx in June 2007 and was Stage11A, also grade3, but no node involvement and she did have a mastectomy. Lori had reconstruction one year later, last June..2008, and she was also multifocal, as after an MRI they found another tumor behind the nipple.
 
Tamlyn, I sometimes wish she would have had the other breast removed, and had she tested positive for the BRCA gene mutation, (she is negative), she would have. No one can tell you if you have made the right decision, that is yours and yours alone. Was that the surgeons recommendation, and what information did they give you before you made that decision?
 
Have they recommended chemo or radiation, and if so did they tell you which chemo you would have?
 
Tamlyn, we are from Altoona, PA and Lori lives in Hollidaysburgh, which is about 12 miles from us. JanetK is from Pittsburgh, and there are a few more women on the site from you area of PA also. Lori is now 47, may I ask your age and where you will be having surgery and treatments? Lori had surgery at Magee Women's in Pittsburgh, and her chemo and rads here in Altoona.
 
Since you are just beginning this journey, I will send you a private message with my email so that I can send you all the directions for retrieving info from the site.
 
Many hugs sweetie, and welcome to the site....these amazing women and men will be here for you every day.Wink
Hugs,
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tamlyn110 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 5:49pm
ratherbdiving-
       Thank you so much for the welcome and the great reasurrance. Believe it or not you made me feel better. Please keep me updated as you go through everything and hope all goes as well as it has been.
 
Nancy,
       Thanks for replying. I am 41. I found out last week that I am braca- which is good news, so I guess I was trying to justify having the other breast removed. I know overall I have made the best/right decision and I would have regreted only having the one done if that were the case. I am just scared and this is all coming at me so fast.  I do not know exactly what chemo I will have, everything will be determined after my surgery. They did say they they are pretty sure I will have to have it though. I don't know about radiation yet. I will be having my surgery here in Greensburg at Excela Westmoreland hospital and the oncologist is UPMC but they have a center here in Greensburg.
 
  I can't believe how overwhelming this all is. Just reading in these forums for the last month has helped me alot though and better understand everything and all I will be going through. I am so glad I joined and I look forward to coming here often for the great support of all the wonderful people on this forum. Hopefully I will be able be in the support category soon instead of the one needing it :)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kazza Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 8:09pm
Hi Tamlyn
Just a quick note to say I think you have made a great decision.  I had only one off, with multiple tumours and node involement.  Mine came off on June 30th which is also the day I got my true dx - a little different than the orginal.  I am constantly getting pains with no reconstruction - so at the end of the day what have you got to lose.  And I will constantly be scared stiff about the other breast and yet to have the braca testing.
 
I am not quite 40 but it did cross my mind at the time to have a bilateral - but the docs were not offering it.  Best of luck with surgery - we will be thinking of you.
 
Kazza
From Kiwi land
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mbventura Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2009 at 2:46am
Tamlyn...Where in Greeensburg do you live? I live in harrison city! Small world...I had my initial mammo in Westmoreland but opted to go to Magee for my surgery.  My oncologist is also UPMC but I'm seeing someone in Monroeville. 
 
They decided to do chemo first in hopes of shrinking the tumor so that I could have a lumpectomy instead of mastectomy.  Isn't anyone else having chemo before surgery? 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mbventura Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2009 at 2:47am
oops forgot to add that I am only 35.  This stinks @ any age  Approve
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tamlyn110 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2009 at 3:48am
Good morning,
 
    Kazza-
      Thanks for your reply. I really do feel better about my decision. I think the future and what I will look like after is just really scaring me. I am seperated so I think about is I will ever find anyone who will be able to accept the "new" me. I know I am getting ahead of myself, that I should just be thinking about getting through this and getting well and I do. I have 2 children son 21 and daughter 16. I will get through this for them.  I would like to be a grandmother someday.
 
mbventura-
    Thanks for replying, I live in Carbon. Do you know where that is? Did you have the braca test done? I can't believe how close you are to me. That is great. Do you have any kids?
Dx 06/29/09
bi-mx 8/5/09
Stage IIIc
IDC,TN, 3.5cm.,Grade 3 15/21nodes+, Brca-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ratherBdiving Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2009 at 7:26am
"I am 41. I found out last week that I am braca- which is good news, so I guess I was trying to justify having the other breast removed. I know overall I have made the best/right decision and I would have regreted only having the one done if that were the case. I am just scared and this is all coming at me so fast.  I do not know exactly what chemo I will have, everything will be determined after my surgery. They did say they they are pretty sure I will have to have it though. I don't know about radiation yet."
 
I'm 36, BRCA- and I know exactly what you mean about it all coming at you so fast!  You're cruising through life enjoying the sunshine and then one day you walk into a wall of absolute confusion and fear.  Once I had the chance to get my brain around everything, I chose to throw everything possible at this right away.  Besides the fact that TNBC has a high rate of return being a good reason to have bilateral, there are asthetic reasons as well.  I've spoken to many women who wish they had done bilateral so they looked the same.  Make sure you ask around in your area about Plastic Surgeons.  Get referrals and see pictures of their work.  I'm very happy with the way mine are progressing.  Believe me, you will find someone who will accept the new you!  After the final reconstruction and time to heal...you will be amazed!
 
Please discuss radiation with your onco because I don't want to speak out of turn.  However, I do not have to have it because the mastectomy removes the tumor and surrounding local cancer cells.  There is nothing left to treat with rads.  Chemo is used to kill off any wiley cells that have broken away from the tumor and have gotten into your blood stream.  I assume it will be offered to you.
 
I had my first dose of chemo (DD A/C) on Thursday.  Again, it hasn't been horrible.  I've slept alot and have a tiny bit of a sore throat...I think that may be from sleeping so hard that my mouth opens!  :)  Made myself get off my butt and go for a walk yesterday and walked a mile and a half before I knew it.  It just felt so good to get out of bed and be outside!
 
Anyway, that's my second 2 cents worth!  Hope you are feeling better about the path you are on and what you are facing.  Take good care!
 
ratherBdiving
dx 5/09, age 35, IDC TNBC, BRCA-
stage 1, grade 3, 1.2 cm
bi-mx 6/09, expander recon, SNB - neg 0/2
A/C 4x DD, T/Carbo 12 weekly, completed 12/10/09
NED 12/31/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tamlyn110 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 10 2009 at 6:46am
Hi Everyone,
  I got through my surgery(bilateral masectomy with expanders and removeal of right lymph nodes). It was not near as bad as I thought. I had it done on wednesday and came home thursday. I wanted to come home early because although my doctors are great the hospital is not. I could not wait to get out! I have 2 drains which are not that bad. The worst is the feeling of carring around what feels like a few bricks tied around my chest. Not bad pain just major pressure. I go see both surgeons tommorrow so hopefully I will have some answers. Thanks for all your prayers and thoughts through this trying time. Tammy
Dx 06/29/09
bi-mx 8/5/09
Stage IIIc
IDC,TN, 3.5cm.,Grade 3 15/21nodes+, Brca-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Aug 10 2009 at 6:56am
Dear Tamlyn,
 
Thank you for letting us know how the surgery went....I wanted to leave the hospital from the Recovery Room after my mastectomy! I understand the feeling.
 
Please review this article before you decide on radiation - the decision to have radiation is not a simple as someone stated if the tumor and breast is gone - what is left to radiate or worry about - if you have node involvement this article is relevant.  I had a mastectomy two years ago and fought for radiation and I am glad I did.
 

Value of adjuvant radiation therapy in breast cancer patients with one to three positive lymph nodes undergoing a modified radical mastectomy and systemic therapy.


Sub-category: Local-Regional Therapy

Category: Breast Cancer--Local-Regional and Adjuvant Therapy

Meeting: 2009 ASCO Annual Meeting


Citation: J Clin Oncol 27:15s, 2009 (suppl; abstr 507)

Abstract No: 507

 

Author(s): S. Dawood, A. M. Gonzalez-Angulo, W. Woodward, F. Meric-Bernstam, K. Hunt, A. Buzdar, G. Hortobagyi, T. Buchholz; Dubai Hospital, Dubai, United Arab Emirates; UT M. D. Anderson Cancer Center, Houston, TX


Abstract:

Background: Whether adjuvant radiation therapy should be utilized for patients (pts) with early stage breast cancer with up to 3 positive axillary lymph nodes treated with mastectomy and systemic therapy is controversial. This retrospective study was performed to determine if adjuvant radiation therapy had an impact on survival for this cohort of pts. Methods: 4240 pts with T1-2N0-1 breast cancers, diagnosed between 1980-2007, who underwent either mastectomy without adjuvant radiation therapy or segmental mastectomy with adjuvant radiation therapy were identified. All pts received systemic treatment. Women with >3 positive axillary lymph nodes were excluded. Overall (OS) and distant disease free survival (DDFS) were estimated using the Kaplan-Meir product method. Cox proportional hazards were used to determine associations between OS/DDFS and type of surgery after controlling for pt and disease characteristics. Results: 1336 (18.8%) had T1N0 disease, 1114 (26.27%) had T2N0 disease, 989 (23.33%) had T1N1 disease and 801 (18.89%) had T2N1 disease. Median follow-up was 54 months.5- year DDFS among women who underwent mastectomy and segmental mastectomy was 81% (95% 78%-83%) and 86% (95% CI 84%-87%), respectively (p < 0.0001). In the Cox analysis, pts who had mastectomy without radiation had a significantly increased risk of distant recurrence (HR = 1.39, 95% CI 1.14-1.70, p = 0.0013) than pts treated with segmental mastectomy and radiation. When looking at subgroups, no significant difference in DDFS was observed between the two groups in pts with lymph node negative disease. However, for pts with 1-3 positive lymph nodes, pts treated with mastectomy without radiation had significantly increased risk of distant recurrence compared to pts treated with segmental mastectomy with radiation (HR=1.614, 95% CI 1.198-2.177, p = 0.002). This difference was most pronounce in the subset of patients with T2N1 disease (HR = 1.794, 95% CI 1.220-2.637, p=0.003). Similar trends were observed for OS. Conclusions: This study provides provocative evidence for benefit of radiation therapy among pts with 1-3 positive axillary lymph nodes who are treated with surgery and systemic therapy.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote NewJerseyMom Quote  Post ReplyReply Direct Link To This Post Posted: Aug 10 2009 at 7:15am
http://www.sciencedaily.com/releases/2009/01/090126082534.htm
Read this and you will see why you made best choice. I have multi focal too and considering mastectomy on other side this year.
This can help you feel bettter about your decision too.
 
Hope that was useful.
-Ren
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Post Options Post Options   Thanks (0) Thanks(0)   Quote GRANNY Quote  Post ReplyReply Direct Link To This Post Posted: Aug 10 2009 at 2:22pm
Dear Tamlyn,     So glad things are going well for you after surgery.  Sounds like you are hitting things head on and dealing with them as they come.  Keep that positive attitude! Julia stage 1 grade 3 no lympnode involment BRAC pending Bilateral breast reduction tc x 4 every three weeks dose 3 due on weds.August 11th  radiation following tc treatments
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vickyann Quote  Post ReplyReply Direct Link To This Post Posted: Aug 11 2009 at 6:35am
I have an expander,  for one and half years. I am havng surgery in Dec. The onky problem I have had wiht it was sleeping on that side. I swanm and moved my muscles alot and it did not  hurt. It is not that bad..It will be ok....
Chemo is much harder lol
Wink
 
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thenewme Quote  Post ReplyReply Direct Link To This Post Posted: Aug 11 2009 at 8:14am
Hi Tammy,
Welcome to the site!  I'm so glad to hear you're doing well after your surgery.  One thing I've heard a lot is that you have to make the best decision you can at the time and not look back.  I too had a double mastectomy and don't regret it for a minute, especially with TNBC.  I have expanders and won't have my exchange surgery until next July (GAHHH!), and as much as I complain about them (I call them my hubcaps) they aren't all that bad.  I think your perspective changes about what is bad, LOL!  I did need Flexeril (muscle relaxers) after two of my last fills for the pain and muscle spasms, but my PS did 120 cc each side each fill, and some people have more pain than others, so don't be afraid to ask for something if you have a lot of pain.  Best of luck and let us know how you're doing!
DX: IDC/TNBC 11/08 5-cm Stage IIb Grade 3. Age 39. Double Mast 12/08 (prophy right) with tissue expanders . ACx4-Tx3. Suspicious IM node. 25 Rads. BRCA NEG.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 11 2009 at 8:32am

Hi Tamlyn,

 
It is great to hear you are doing so good.  Thanks for letting us know.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Aug 11 2009 at 9:42am
And on the more superficial side of things, my friend tested positive for BRAC in January, had mast. in February w/expanders - and I saw her fully reconstructed chest last week.  They are BEAUTIFUL, I must say!  They look like they belong to a 20 year old (she's 52). 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote diane1234 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2009 at 8:13am

Hello this is only like my 3rd post. I have lurked alot and read ALOT. I am also a member of this tnbc club. I was dx 4/28/2009. I had a double mastectomy 5/21/2009 (the double was by choice) I was so fearful I want them both off. I began chemo on 6/15/2009. I completed #9 of my 12 weekly taxol on Monday. I will then move to 4 of something every three weeks. It seems the onc. told me it would be FEC. Unsure of that I am going to ask her about that the next time I see her. I had a 4.7 cm tumor that came out of NOWHERE..... I had 3/13 nodes. I had seen my obgyn dr. for a regular yearly exam the end of January and she did the SBE...and all was good. Was told see you next year....Then 80 day later I find a mound in my left breast....I had never had a mammo....I am 36 years old and ABSOLUTELY NO FAMILY HISTORY....so the protocol was to have first mammo at 40. Well cancer found me first....I did do the BRCA test and it did come back NEGATIVE...I dont fully understand this test. I dont know if testing BRCA positive means the cancer is more aggressive. Although I know they say tnbc is all very aggressive. I just know at times I am so fearful. I have 3 kiddos and am just reaching out to those who may understand. You all seem so knowledgable. I would love to know if ANYONE SURVIVES THIS.....I know all that I read is SOOOO FEARFUL!!!!!I was staged at IIB. Still trying to figure out how they even stage this stuff.

May God Bless Us All


Edited by diane1234 - Aug 12 2009 at 8:16am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2009 at 12:33pm
Diane, lots of people survive IIB TNBC!  I think on the order of 60% or thereabouts.   How well we do depends on how sensitive our cancers are to chemotherapy, and how aggressive they are in the first place.    Learning to live with uncertainty is the hallmark of cancer survivorship.   We have to learn how to live fully and well without any guarantees about our future.   It isn't easy, but the adjustment is possible, something every one of us manages in our own way.  Some people manage by always assuming the best, and not going 'there'.  Others manage by opening themselves up to all possibilities and trying to make peace with whatever happens.  We all do what we can to improve our odds, but know that ultimately it is out of our hands.  Some believers lean on their idea of God.  You'll probably have to explore to discover what way will work for you.  In any case, fear is completely normal. 
You have us to accompany you on the journey, whatever it turns out to be.

Love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2009 at 12:35pm

There are many others here much more knowledgable than me, but I can fill in a few holes for you - especially since we have similar diagnosis!  I'm sure someone else will jump in here and give you more detailed facts than I can.

You and I are stage 11b because our tumor was between 2 and 5 cm in size (the 2 of the stage), and we had lymph node involvement (the b of the stage).  It seems to me the majority of the triple negative breast cancers are grade 3 - which is in deed aggressive & and fast growing.  I am like you, I feel like my lump popped up out of nowhere.  That is why you want to hit it with the strong chemo if possible.  The good news is the grade 3 triple neg tends to really respond to chemo - meaning it kills it well! 
 
You should have had a meeting with the genetics counselor at your hospital to explain the  BRAC significance.  I too was negative, which is awesome news - be happy!  From what I remember, the BRAC gene mutation means you don't produce a protien which fights or prevents or somehow keeps breast cancer - and ovarian cancer - at bay.  If you are positive for the gene mutation, you have a much higher risk of getting these cancers - over and over again.  That's why the recommendation is bilateral mastectomy and full hysterectomy with the BRAC.  At least that was my Genetics doc's recommendation, and what I was prepared to do if I had tested positive.  But I didnt - and you didn't - hurray!
 
MOST breast cancers are in women with no family history and are negative for the gene mutations.  It scares me when I hear women say they haven't had a mammogram, but they aren't worried because there's no breast cancer in their family.  Yikes! 
 
Many, many women survive this!  This board is full of long term survivors!  The reason you are doing all of the surgeries and chemo - all this torturous treatment - is because it will give you a good chance at beating it and surviving a long healthy life!  If you are worried about the odds talk to your doctor - the odds are with you if you do the full treatment and come from a starting point of 11b! 
 
FYI - to read about stages of breast cancer look here www.breastcancer.org/symptoms/diagnosis/staging.jsp
 
And while you are at that site, have a look around - there's lots of good info there as well.  I find that educating myself helped calm me down, reading up and knowing what I could about each step along the way made me feel stronger. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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