 |
|
10-20-2012, 03:46 AM
|
#21
|
|
Senior Member
Join Date: Dec 2005
Location: virginia
Posts: 99
|
Re: Recurrence after 12 years
JayKay, from another "lurker" and your note has brought me out. Have been NED for 8 years. Stage 2b, triple pos.( er/pr/her2+++) with SNB finding a couple of pos. nodes. Did the bilat surgery, chemo, rads and Herceptin. Arimidex for 7 years. As many have already shared with you it is all doable and we are "TOB" so there !! Also found this site doing research and love the info and support from all these Warriors. What a wonderful group !! From my lurking days.....this group will never know how much support they have been and continue to be to us lurkers. Thanks all !!!
|
|
|
|
10-23-2012, 11:02 AM
|
#22
|
|
Member
Join Date: Oct 2012
Location: Long Island, NY
Posts: 6
|
Re: Recurrence after 12 years
Newgg, you're living my worst nightmare. I'm afraid the same will happen to me in the future if not sooner. I have CEA that is rising steadily and they can't seem to find a reason why. Best of luck to you. Prayers too.
|
|
|
|
|
10-23-2012, 11:25 AM
|
#23
|
|
Senior Member
Join Date: Oct 2012
Posts: 646
|
Re: Recurrence after 12 years
Bria - please don't don't think that! Everyone is different. Now I'm just angry and ready to get on with it.
I honestly was reluctant to come "out of the closet" because it wasn't good news but I needed the support of this truly exceptional group
Best wishes to you, too
Janis
|
|
|
|
|
10-23-2012, 12:33 PM
|
#24
|
|
Senior Member
Join Date: Jul 2011
Location: ottawa canada
Posts: 367
|
Re: Recurrence after 12 years
When I hear you "swear" lol at those drains, I am reminded that I was to post this tiny point here...or large one...perhaps I will start a thread on it for new gals.
Drains: (was trying to put the thumbs down symbol here)
I had a drainless mastectomy June 2011. My surgeon did not believe in drains since he found that, statistically, fewer post-surgery infections occur when a surgeon does not leave drains in at the time of surgery. Instead, I went to him in clinic several times post surgery and he pulled out the liquid with a needle each time (it didn't hurt at all.)
Last month, Sept 2012, I had a mastectomy on my other breast (a skin-sparing, silicone-inserting cosmetic mastectomy). Brand new surgeon. Drains this time. Three drains! (I had a simultaneous expander insertion on the site of last year's mastectomy).
Having had two mastectomies, a year apart, one drainless, one with drains, all I can say is OOOOOOOOOOOOOOOOOOOOOOOWWWWWWWWWWWWWWWWWWWWWWWW!!! !!
Ladies: if you are about to get a mastectomy, look high and low for a surgeon who will drain you by needle during office visits after mastectomy instead. Do not accept a surgeon who will leave drains in you. How, my friends, how have you all coped with drains?? Agonizing! Painful! Shrieking in the middle of the night, I was, each time I turned incorrectly, etc. Nights of lying there saying "OW!" over and over again.
Sheesh! You all made it sound like drains were a bit awkward but nobody mentioned the pain where the drains meet the skin!!!!!!
When you are recommended a surgeon, before you meet him, ask his receptionist over the phone whether or not he ever does drain-free mastectomies.
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011
mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.
I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
|
|
|
|
|
10-23-2012, 12:42 PM
|
#25
|
|
Senior Member
Join Date: Jul 2011
Location: ottawa canada
Posts: 367
|
Re: Recurrence after 12 years
omg, Nancy! I private messaged you with a thing on chicago. You're Detroit, not Chicago. So sry my geography or my chemo/rads brain is screwed up!
Love,
Nora
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011
mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.
I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
|
|
|
|
|
10-28-2012, 05:13 PM
|
#26
|
|
Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
|
Re: Recurrence after 12 years
JayKay, sorry to read your news. As an 'early stager' who did hear the "c" word from my oncologist...your post affirms the fears that are always in the back of my mind! Although I did opt for a bilateral mastectomy back in 2005...and my tumor markers have always been low...the worry never goes away. I worry because I DONT have breasts to mammo, or BSE...and I have had so many xrays and scans...
You will kick this setback in the butt, grrrrr!!!!!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
|
|
|
|
|
10-28-2012, 06:25 PM
|
#27
|
|
Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
|
Re: Recurrence after 12 years
Its all been said, so will just send ((((hugs))))!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
|
|
|
|
|
11-02-2012, 11:58 AM
|
#28
|
|
Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
|
Re: Recurrence after 12 years
I've had a recurrence and I agree, it's a terrible shock but as the others have stated, there are so many treatments available and have been successful. Herceptin is easy - I did it for 6 years. You didn't mention radiation but I suppose you've had it, if not and this is in the same breast (or not), you will have it. I'm now 8 years out from my recurrence.
The shock will wear off and once you start on your treatment, you'll feel more in control and better.
hugs and love
sarah
__________________
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 11:15 AM.
|
Linear Mode
