Tamoxifen & Port
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URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=9447
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Topic: Tamoxifen & Port
Posted By: Maz
Subject: Tamoxifen & Port
Date Posted: Dec 29 2011 at 3:05pm
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Hi: Has anyone with TNBC been advised to take Tamoxifen? Also, has anyone had their port left in after chemo 'just in case' cancer returned in the next year?
Very concerned about both recommendations by Mayo oncology nurse. Will talk to oncology doctor next week.
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Replies:
Posted By: Charlene
Date Posted: Dec 29 2011 at 3:24pm
I had my port removed less than a month after my last chemo. I couldn't wait to get rid of it. My tumor was 5% positive for ER. I was not advised to leave my port in or to take any hormone treatment.
Charlene
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DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Posted By: 123Donna
Date Posted: Dec 29 2011 at 4:33pm
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I still have my port in. I get it flushed every couple of months. Since I've had a recurrence, I'm fearful of having it removed at this point. Maybe after another clear scan I'll take the plunge and get it removed.
Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: CindyKS
Date Posted: Dec 29 2011 at 8:14pm
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I still have my port. I guess it is part of my twisted logic that if I keep it I won't need it again. (Also the surgeon did a good job placing it and it doesn't bother me at all)
Cindy
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Age 42; Dx 4/10; IDC; 2.1cm; lumpectomy; ACx4-taxolx4 every 2 wks; Radx37, BRCA 1/2 neg
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Posted By: sweetjolieblon
Date Posted: Jan 15 2012 at 10:36pm
I still have my port in place and flushed every three months when I see my Oncologist (unless used for other procedure like my heart cath). It is a small, low profile port and it doesnt bother me at all. I suspect after a year or so it will be removed. I think it is probably pretty standard to leave it in place for a bit.
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Joan-Diagnosed March 2011-IDC Grade 3 Triple Negative, Sentinel Node Negative,Lumpectomy margins not clean, Bilateral Mastectomy with reconstruction
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Posted By: cheeks
Date Posted: Jan 18 2012 at 6:54pm
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Maz,
I still have my port in also "just in case"
Blair
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Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Posted By: christina1961
Date Posted: Jan 18 2012 at 9:03pm
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I was told that I would have my port for about 2 years. I am going to ask my oncologist about this next time I see him (which should be in six weeks) because the plastic surgeon said he usually takes them out at the time of delayed reconstruction which may be sometime this year.
I am 5-10% positive for ER receptors with moderate intensity of staining (Allred score of 4) and have had 2 out of 3 oncologists recommend tamoxifen. The 3rd oncologist said I could take it but it might not do much and if I had side effects she didn't see why I had to continue taking it.
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2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.
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Posted By: BamaRachel
Date Posted: Feb 19 2012 at 10:33pm
I had my port taken out a couple of weeks after finishing chemo. I had reservations about taking it out too early, but mine failed right before the last treatment, so there was so use in keeping it. My oncologist wants me to take one of the newer Tamoxifan (can't remember the name) drugs after I finish radiation because my tumor was very slightly positive for estrogen. I'm not looking forward to taking the drug, however. Have wondered if the positives for taking it outweigh the negative side effects of the drug.
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DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.
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Posted By: tanya2011
Date Posted: Sep 28 2012 at 4:09am
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Hi everyone, I was told to keep my port remained in for at least a year and a half. I finished six rounds of taxatere and cytoxin in Aug 2011 ( last year) .I really wanted my port removed ,oncology insisted on a big no.I am stage 2 ,negative nodes,and chose a mastectomy and my scans after chemo rounds showed no cancer ,so that is why I wanted my port removed and also is was painful at times,by Feb of this year I found a blood clot in my neck,I was getting routine blood work and flushing every 3 months and no one caught this but me,woke up swelled out in my neck and one arm was slightly bigger than the other,but again found this on my own,as I did the lump in my breast,so if my cancer is to ever return I will have my port in only as long as needed medically,after research and talked with other women with blood clots and ports,you would think docs would keep a closer eye on patients educate them for warning sighns.my clots were caused from the cathetere in my port that quit working and just having cancer and chemo alone can cause a blood clot.so 4 months on coumadine 5 mg daily then the end of this past July had the port remoed and chose to have my left breast removed (since I am trippl negative) had expanders put in at the same time and chose implants.I will be ready for my permanent ones in 4 months. In my state I was denied the brac1 and 2 test no medical coverage at the time,no funding called everyone,so after seeing 3 docs and many letters I chose in the end both breast removed,but no regrets I will be here to see my 38th Birthday a little over a month.Not sure what was right or wrong at the time though,still feel I should have lissoned to myself in the end after my chemo and just had the port taken out.Education and clots that was never discusssed and I was so focussed on the word cancer alone never thought of my port.
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Posted By: 123Donna
Date Posted: Sep 28 2012 at 8:18am
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Tanya2011,
Have you contacted the King Lab to participate in their free genetic study? All you need to do is fill out a questionnaire and send in a blood sample. Most doctor's office will draw the blood for you free of charge. My onc's office was happy to do it after I told them about the study. Here's a link Steve posted about this study:
http://forum.tnbcfoundation.org/important-tnbc-studyking-lab_topic9642_page6.html - http://forum.tnbcfoundation.org/important-tnbc-studyking-lab_topic9642_page6.html
Eligibility Criteria for the study are as follows:
• Invasive breast cancer diagnosed at age 40 or younger, regardless of family history, OR
triple negative invasive breast cancer diagnosed at any age, regardless of family history
AND
• If in the U.S., prior commercial testing for BRCA1 and BRCA2, regardless of results of
that testing.
Maybe you can still contact the King Lab and let them know you were unable to get the BRCA testing due to financial reasons. Maybe they can offer some solutions to help you get tested.
Donna
PS: I got my port removed last month and wish I would have done it sooner. After finishing tx from the recurrence I was scared to have it removed. It gave me some type of weird comfort as if it was removed I'd be jinxing myself. The longer I went the more it bothered me having it in my body. I also heard stories of other women having problems with blood clots and I started having problems with my port drawing. It was rather liberating to have it gone.
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: sweetjolieblon
Date Posted: Oct 01 2012 at 9:53pm
I stilll have my port. My onc leaves it in for 2 years due my my diagnosis of invasive ductal carcinoma. I have it flushed every three months when I see my onc for a check up.
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Joan-Diagnosed March 2011-IDC Grade 3 Triple Negative, Sentinel Node Negative,Lumpectomy margins not clean, Bilateral Mastectomy with reconstruction
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Posted By: tanya2011
Date Posted: Oct 02 2012 at 11:45am
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Thank you Donna, I will try that link.. (never hurts) ..Again thank you for the info.
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