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01-08-2011, 10:02 PM
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#1
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Senior Member
Join Date: Apr 2007
Location: Mississippi
Posts: 600
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To talk of Ports, and markers and DIEP
Hi everyone, I have been lurking occasionally. Busy teaching and learning. I have a few questions.
The good news is that the PET I had in November was good. I was scheduled to get my Port out. When I saw my oncologist he told me that he would rather I waited because my tumor markers were up. My tumor markers have been up before and nothing changed in my PET scans. Anyway, I am waiting and he is testing again at three months and six months. Then with any luck, I will get my port out.
My real question has to do with DIEP reconstruction. I am planning on scheduling it in July (that's when I am not teaching) and I know there can be a long recovery. I hurt so much after my mastectomy that I swore that I would not do this but I do not like wearing a prosthesis and I have noticed that I have been less active because of it. What is it really like, what kind of recovery time did you have, do they work on the other breast at that time, whendo they do the tattoos, etc.? I have spoken to the surgeon but I didn't think to ask him everything. It is scary.
Leslie
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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01-09-2011, 07:20 AM
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#2
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: To talk of Ports, and markers and DIEP
Leslie,
Great news on your PET scan, and hopefully the raised tumor markers mean nothing. Especially since they've been elevated before.
I had immediate DIEP flap reconstruction, and the recovery wasn't too bad. But of course, since fat was taken out of my stomach, the recovery involved abdominal surgery. My chemo did not start until six weeks after. I did only one breast, and I never bothered with the tattoo.
Mary Jo on the board had DIEP flap after her mastectomy, I believe in both breasts, and she can probably give you more information about not doing it immediately.
I would agree about the convenience of either flaps or implants. They do give you a certain amount of freedom. Since I had a DIEP flap from the beginning, I've never really felt like I "lost" my breast.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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01-09-2011, 10:16 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: To talk of Ports, and markers and DIEP
Hi Leslie!
Soccermom also had delayed DIEP reconstruction as well and as Joan said, Mary Jo also had delayed diep.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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01-09-2011, 12:23 PM
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#4
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: To talk of Ports, and markers and DIEP
Hi Leslie,
Yes, I did have bi-lateral DIEP reconstruction 3 years after my initial surgeries. I am assuming from reading your signature and from your post that you are having uni-lateral reconstruction.
I did not find DIEP to be as bad as I had anticipated it to be or from reading the comments on breastcancer.org from other women who had uni-lateral or bi-lateral DIEP. Don't get me wrong, it isn't a "walk in the park" but not as bad as I thought. However, saying all that, my surgery went perfectly. Surgery, recovery and post-op. Going into the surgery I was healthy and in good shape...so that probably helped or surely didn't hurt.
The 2nd phase of the surgery, the revision phase, is done at a later date. They will lift your other breast (if having uni-lateral) at that time and do whatever other revisions need to be done. I didn't have my revisions until 1 year after the initial surgery but you do not have to wait that long.
Any other questions just ask.....also, if you'd like my phone number to talk so we can talk that way, please feel free to ask.
Happy to help....
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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01-09-2011, 09:06 PM
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#5
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Senior Member
Join Date: Apr 2007
Location: Mississippi
Posts: 600
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Re: To talk of Ports, and markers and DIEP
It would be unilateral. I thought at first that I would not be doing this. It might be some time between the DIEP and the revision. I am fitting this in around the college schedule and then there are the classes that I am taking. It was good to hear that you had a good experience. It sounds like most of yall have been happy wit the results. Thanks. Mary Jo, it might be helpful to call you. I am not going to have the surgery until July ( I am teaching first summer semester) so ther is no hurry.
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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01-11-2011, 06:59 PM
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#6
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Senior Member
Join Date: Apr 2007
Location: Mississippi
Posts: 600
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Re: To talk of Ports, and markers and DIEP
I looked over that last message and realized that my typing sucks. I would like to hear from more of you that have had the DIEP surgery, especially delayed surgey.
Leslie
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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