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11-13-2007, 11:26 PM
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#1
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Rebecca, I understand your concern...I had the same ones when it was time to remove mine. I'm Stage IIIA, her2/neu, 3+++, er & pr positive, 5 of 16 positive nodes, Richardson scale 9 of 9. I wasn't able to have rads either which worried me. But my current onc and my 2nd opinion onc up at City of Hope both told me to have it removed when I finished my herceptin. I wanted to leave it in at least till I hit the two yr mark. But they both insisted I get it removed.
I can tell you *now* I am glad I did it. (Its been out for almost 9 months now and so far NED.) (Knock on wood) There is no way to know when or *if* you will recur. So I am betting on I won't.  Positive thinking. You said your onc hasn't brought it up....next time get his/her opinion? That might help you decide. Good luck to you.
Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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11-14-2007, 07:08 AM
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#2
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Senior Member
Join Date: Aug 2006
Location: Rowlett, TX
Posts: 138
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Rebecca, when I knew I wouldn't be continuing Herceptin, I ASKED my onc if I could get my port out now. She didn't bring up the subject, but I couldn't see having my port only for every-3-month blood tests (and having to come in and get it flushed monthly). She thought about it and agreed, and I had it removed.
If I have a recurrance and have to get another, then so be it. But for now, I'm cancer-free and having NO port just reminds me of this every day.
Anyway, that was my thinking. Good luck.
__________________
Janet in Rowlett Texas
Dx July 2006 IDC 1.8cm, ER-/PR- HER2+ (FISH 7), KI67 High (60%) grade 3, TOPO II neg
Aug2006: lumpectomy, SNB (4 nodes neg), Stage 1
Jan 2007: Finished 6 cycles of TCH (Taxotere, Carboplatin, Her ceptin). Then Herceptin every 3 weeks.
Feb 2007: Completed Radiation
May 2007: Stopped Herceptin due to low LVEF (49%)
July 2007: LVEF now 44% -- starting Coreg
May 2008: Heart NORMAL! Yippee.
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11-14-2007, 01:27 PM
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#3
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Senior Member
Join Date: Nov 2005
Location: Philadelphia
Posts: 144
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Port Removal
My experience, went thru 4 months of dose dense chemo wo port. When Herceptin became available to me, I had to get port.
Although I never had any problems with it, one month after my last Herceptin treatment (was on Herceptin for 2 years) I had it out.
And I'm glad I did. If I need it again, I'll have it put back in but after nearly 3 years of feeling like a patient, I needed the reminder gona asap.
Just me, you have to decide what you're comfortable with.
Either way, Godspeed and Good Luck to You!
Ginagce
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11-17-2007, 06:55 AM
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#4
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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I will be finishing my herceptin in December and have decided to keep my port in for awhile maybe 6 months. My onc suggests removing it after the last herceptin treatment. I have a cyst on my brain that is being watched MRI every three months and am having a PET scan end of December for lump in my neck that does not show up on CT scan, so I am reluctant to have it removed with these issues. I just look at the removal as one more procedure I don't want to deal with and it is a safety net if the cancer comes back. Most patients recurr within 1 year after treatment. So I am keeping mine for a while.
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Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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11-17-2007, 08:28 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
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I still have my port and use it often as I see my onc every two or three months. It was never suggested to me to have it removed and it doesn't bother me. I am on and off herceptin (looking to go back on now as my tumor markers are increasing) so think it's best to just keep it for now. If I am NED for a couple more years I'll get it out.
Cathy
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Cathy
Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18
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11-17-2007, 10:06 AM
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#6
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Senior Member
Join Date: Oct 2007
Posts: 203
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Thanks
Thanks, everyone, for sharing your thoughts and experiences. I guess I'm going to go with my gut, as I have all along, and keep it for a while. It doesn't bother me, or make me feel more like a patient, and the thought of another "procedure" makes me sick to my stomach. Only 2 more herceptin treatments to go! and that makes me very happy (I've been going weekly for a year). And if I have to get the port flushed once a month, it's a good excuse to see my onc. I'm pretty sure I'll be in withdrawal after seeing him weekly for so long.
Rebecca
__________________
Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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