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Old 10-23-2014, 08:18 PM   #1
kitty9
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Smile 10 years NED 19 positive nodes

I first noticed symptoms under my arm two months prior to my diagnosis. I had been getting undressed and lifted my arms up to remove a necklace. It was then I noticed a strange “vein” under my arm. As I have an autoimmune disease that can cause clotting – I ended up in A&E were they scanned my axilla using ultrasound. No clots were detected, but I was but on heparin and I made an appointment with my rheumatologist. He said it wasn’t anything like a thrombosis and suggested I had a mammogram.

I saw a breast surgeon with my negative mammogram report, which ordered an ultrasound. Still NAD. Around this time the vein seemed to disappear. I noticed red flushing on my breast every time I exercised or had a shower – but it was put down to hormonal changes and I was put on high dose evening primrose oil!!!

A couple of weeks later I noticed petechial spots on my breast and was diagnosed with Mondor’s disease by the breast surgeon. Higher evening primrose oil dose!
I had completed the trio of testing which excludes most breast cancers – mammo, ultrasound and examination by an expert. I was supposed to relax now.

Finally took to the internet and found images of cording in the axilla just like mine. I convinced my husband to ring up to get yet another appointment, my third in 7 weeks.

At this appointment a biopsy under ultrasound (if they could find something to biopsy) was planned. My husband had to fly to the UK for his mothers funeral, so I went it alone whilst my mother looked after my sons.

At the ultrasound, a student was practicing on me under supervision. She saw something behind the nipple that she questioned, but was told it was just nipple shadow. Thank God she persisted and said what about from this angle then?
The radiologist was called and he said the same thing – just nipple shadow until she showed him an alternate view.

I’m not sure if I was glad or not that they had found something at this stage, but at least I felt I wasn’t going mad. And anyway the radiologist said don’t worry it won’t be cancer!
The radiologist didn’t want to do the biopsy then as it was 5pm but I said I wasn’t going anywhere. The usual number of biopsies taken is 2-3 but for some reason he did 5. At this point he said if it was me I would want to be sure – Hmm.

The following Monday I was due a call from my breast surgeon. He rang at me and began very jovially saying he had my results. Suddenly he stopped mid sentence and said he couldn’t say any more as the results weren’t all in. I asked him what he meant and did I have cancer but he simply kept saying he would ring me when the full results were in. (I gathered later that his secretary puts all the “good” results on his desk for him – but she hadn’t noticed that only 3 biopsies were returned and the others were to be re examined.) Thank God the radiologist took all those samples.
I was so devastated as I knew why the results weren’t all back – but again thought maybe I was just over reacting. I phoned a friend to ask how she would interpret what he said – and then I knew I wasn’t .
My husband was still in the UK so I opted to wait a couple of days for him to return for my official results – even though I knew. Within this week I went from having one node palpable to 3.
I had surgery the day after my results. Lumpectomy , total axillary clearance – 23 nodes removed.
The pathology showed grade 3 HER+++, er-, pr- with 19 positive nodes and some spread into the axilliary tissue.
Bullseye!

I completed 4 rounds A/C and 4 of taxol
then had 30 high dose rads to breast and axilla and supra clavicular nodes.
At this point my oncologist asked if we would consider Herceptin. At this time it was not available in Australia without self funding. After paying for one year the funding came through- but I was not eligible for any further treatment because I had already received Herceptin. I decided to go the 2 years as there were no clear results on one versus 2 years at the time and I had lots of nodes.

On the way I have had some minor (!) upsets.
About six months after finishing radiotherapy I developed tingling and numbness in my fingers and forearm. Nerve studies were inconclusive – was it from my cervical vertebra, radial nerve damage from radiotherapy or spread?
I had the full scans – the radiologist reported lung secondaries – but my clever radiation oncologist decided it was lung tissue irritation.Phew!

I get what they think is low grade infection in my breast tissue on and off – which initially was of great concern as it mimicked my original symptoms of breast cancer – redness, swelling etc. I have to take high dose antibiotics for several weeks when it flares up, and I cant take high dose steroids without it resulting in a massive reaction.

After four years my oncologist told me to worry about other health problems as they were more likely to kill me! I then discovered I had high cholesterol and very low vitamin D.

What’s changed.

I took up skiing after 20 years and am now, as my son who was 5 when I was diagnosed and am now a strapping lad) says “ a nervous expert”. Well after a broken arm one year and a broken leg the next moguls are no longer fun.
I went to Uni as a mature student.
I continue to exercise as I always have and did throughout my treatment (with a bucket by cross trainer) and still maintain a strenuous routine. Pity it doesn’t result in a svelt body!
I never have bad hair days.
I eat lots of chocolate.

Not so good news.

Last year I discovered I have a genetic disposition to breast cancer, not BRCA 1 or 2, but what they call multiple low risk genes . I now discover that I am at high risk of a second primary breast cancer. Bummer! I now get yearly MRI ‘s and Mammograms which means I am screened 6 monthly forever.

I hope that this helps those of you who are early in your diagnosis and wonder if anyone gets there . Yes they do.
__________________
Diagnosed Oct 2004

Stage 3,Grade 3 Er-,Pr-,Her2 +++
19/21 positive nodes and some axillary spread

Rt Lumpectomy and axilla clearance

AC 4+ T4
6 weeks radiotherapy breast and axilla and clavicular nodes

2 years herceptin (36 doses) 3 weekly
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Old 10-24-2014, 06:14 AM   #2
Hopeful
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Re: 10 years NED 19 positive nodes

Kitty9,

Thank you so much for your story, which I am sure will be of great value to many who come to this site. I am glad to hear you are doing well and wish you the best of luck for the future.

Also, I love your picture!

Hopeful
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Old 10-24-2014, 03:10 PM   #3
KathyT
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Re: 10 years NED 19 positive nodes

Thank you for sharing your story, it definitely gives me hope!!
__________________
Kathy
38 years old!

January 17th 2014-mammo, ultrasound, biopsy
January 20th 2014- diagnosed, ER/PR+, Her2+++, Stage 2A
January 21st 2014-MRI, right breast only plus lymph nodes
January 23rd 2014- Pet scan-2 cm tumor, 3 lymph nodes
February 4th 2014-port insertion
February 12th 2014-first chemo treatment(TCHP x6 cycles)
May 28th 2014-LAST chemo treatment!!
July 10th 2014-double mastectomy
July 29th 2014-start radiation(30)
Sept. 11th 2014last radiation treatment!!!
November 12 2014-started Tamoxifen
January 20 2015-reconstruction begins, lat flap
February 4 2015-last Herceptin treatment!!
April 24, 2015- pet scan-NED!!
June 3 2015- exchange surgery, port removed!!
September 8 2015-hysterectomy/oophorectomy
September 15 2015-Revision of lat flap reconstruction
December 23 2015-nipple reconstruction
May 9th 2016-Mets to pituitary gland, liver and C7 vertebrae
May 10th-port put back in:(
May 17th- biopsy of mass on back
May 19th-started Herceptin/Perjeta
May 20th-5 treatments Cyberknife to pituitary gland tumor
June 9th-Started THP (will have 6 cycles)
August 17th-MRI of brain, significant reduction in tumor
😃, repeat MRI in 3 months. Received first Zometa
infusion.
June 24th 2019- Thoracic spine Mets, leptomeningeal Mets , 10 radiation treatments
Aug 1st- Ommaya Reservoir implanted
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Old 10-25-2014, 04:40 PM   #4
tricia keegan
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Re: 10 years NED 19 positive nodes

Congrats kitty, I'm nine years out and looking forward to the big ten next year!
__________________
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!
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Old 10-31-2014, 07:51 PM   #5
norkdo
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Re: 10 years NED 19 positive nodes

thank u very much for your abbreviated story. would love more details.
__________________
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
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Old 11-01-2014, 08:34 PM   #6
suzan w
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Re: 10 years NED 19 positive nodes

Congrats!!! Keep up the good "work"!!!!!
__________________
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!!
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Old 11-02-2014, 11:49 PM   #7
JennyB
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Re: 10 years NED 19 positive nodes

That is a very hopeful story thank you so much for sharing.
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 11-03-2014, 05:35 AM   #8
Pray
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Re: 10 years NED 19 positive nodes

Great life! Awesome story! Thanks for posting
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 11-04-2014, 06:59 PM   #9
Carolynvj
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Location: Barooga NSW, Australia
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Smile Re: 10 years NED 19 positive nodes

Thank you so much for this post.
Am having a particularly down day today (don't usually have too many but today is a doozy)
Your post has made me feel more positive.
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Old 10-11-2016, 03:24 PM   #10
Gemma
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Re: 10 years NED 19 positive nodes

Thank you so much for your post. I needed the positivity today while sitting in hospital after my axillary dissection and awaiting results ��
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Old 10-12-2016, 02:01 PM   #11
kitty9
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Location: Melbourne,Australia
Posts: 7
Re: 10 years NED 19 positive nodes

Now 12 years! Take care - Kitty
__________________
Diagnosed Oct 2004

Stage 3,Grade 3 Er-,Pr-,Her2 +++
19/21 positive nodes and some axillary spread

Rt Lumpectomy and axilla clearance

AC 4+ T4
6 weeks radiotherapy breast and axilla and clavicular nodes

2 years herceptin (36 doses) 3 weekly
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Old 11-01-2016, 06:24 PM   #12
suzan w
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Location: Naples FL
Posts: 1,744
Re: 10 years NED 19 positive nodes

WOW!!! Time flies! Great news!!!
__________________
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!!
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Old 11-04-2016, 07:19 AM   #13
tricia keegan
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Posts: 3,460
Re: 10 years NED 19 positive nodes

Delighted for you Kitty, it's eleven for me, many congrats!!
__________________
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!
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Old 11-10-2016, 11:16 AM   #14
caya
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Posts: 2,318
Re: 10 years NED 19 positive nodes

Great news Kitty, I also just joined the 10 year club!

all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
14 Years NED!!
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