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Old 07-09-2013, 06:56 PM   #1
linn65
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Not any kinds of scans will be done!

Is the only reason to do a scan is due to symptoms? How would a person no because my oncologist said no scans needed and herceptin work.
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myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 07-09-2013, 07:26 PM   #2
'lizbeth
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Re: Not any kinds of scans will be done!

Hmmmm . . . I had a post chemo pet scan, and if I remember correctly mammograms every 6 months until I hit 5 years. There was also a breast MRI, and a brain MRI.

I had to be diagnosed with "general anxiety disorder" or something like that to get my scans. Frankly I think that is what the medical staff suffers from in response to my numerous requests for tests and information.

Yes, you have the type of doctor that doesn't believe in scans. But there are other doctors that use scans for follow up.

You can always get a second opinion.
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Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 07-09-2013, 09:31 PM   #3
Jackie07
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Re: Not any kinds of scans will be done!

My mammograms had been misread for three years staight! It was only when I requested it through the original surgeon that the recurrence was found just before the 4th year mark.

I had lost weight, lost jobs, ...

My point is that 'clear' scans can be misleading ... Pay attention to your physical condition and report any unusual signs to your doctor. Also check your family medical history/BRCA1/BRCA2 and find out if you are at high risk of any other cancers.
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Old 07-10-2013, 05:11 AM   #4
linn65
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Re: Not any kinds of scans will be done!

It does seem strange not to get any scans. I do have a follow up appt with my Breast Surgeon August 5th, so maybe he might do a mammogram on right side. It just seems strange since HER2 is in your blood system that they do not check with a pet scan or something. ONC said everybody's body would light up in different places and a person would be afraid all the time. Also, he said Stage 1V is different they do scans then, but I am Stage 111.
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 07-10-2013, 05:51 AM   #5
tricia keegan
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Re: Not any kinds of scans will be done!

My Onc only does scans with any symptoms or continuing pain and I think this is common, the usual rule of thumb is any symptom that continues for 2-3 weeks should be investigated more.
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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 07-10-2013, 06:01 AM   #6
linn65
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Re: Not any kinds of scans will be done!

Okay, just want to ask this question....When I had BC I had NO symptoms of illness at all just found a couple lumps in my breast that seemed to come out of no where. So I sit her and think if you have cancer in liver what would be a symptom?? Lung, I assume you would cough, brain?? I sure would want to catch it quicker than I did the BC if at all possible!! I think or feel like I am going to be just fine, but I like to know possibilities and am not trying to sound gloom and doom, cynical or anything else. Just curious.
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 07-10-2013, 06:46 AM   #7
Hopeful
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Re: Not any kinds of scans will be done!

One other thing to remember about scans: everyone has a lifetime limit for radiation exposure. Since it is not the practice to track cumulative exposure for patients, no one knows when you have reached your upper limit. Radiation itself is cancinogenic. It should be used sparingly and only where necessary. Asymptomatic scanning is not normally medically necessary.

Hopeful
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Old 07-10-2013, 07:10 AM   #8
linn65
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Re: Not any kinds of scans will be done!

It seems different doctors have different protocols with scans I guess. I read on here having scan anxiety, and I think I suppose I will not need anxiety because I won't be having scans! LOL

And maybe I did not notice and people that were getting the scans were in stage IV not III.

It also seems strange finishing up herceptin and just assume it works. I have gotten quite and education up close and personal on something I never thought I would. Hopefully, I can help someone else just like this board as helped me.
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 07-10-2013, 09:23 AM   #9
NEDenise
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Re: Not any kinds of scans will be done!

linn,
I don't know a thing about lung or liver mets.
And, I don't want to scare you... in fact I hope my advice will eventually put your mind at rest...

I was stage 3 also. My onc did not routinely do post treatment scans... the assumption being that Herceptin and the chemo did the trick.
For some reason I can't explain at my last Herceptin visit, I asked for a brain MRI. I didn't have any symptoms, I just had a gut feeling that my brain should be checked - because even the original PET didn't really cover my brain... and Herceptin can't cross the blood brain barrier. My onc said,"If you tell me you're having headaches, I can justify the MRI to your insurance company." So, I lied and said I had had 3 bad headaches that week.

She ordered the brain MRI, and told me..."They're not going to find anything, but at least it will put your mind at rest."

One week after that last Herceptin, I had the Brain MRI... and my onc had to call me and eat her words. I didn't have one brain met... I had two. And one is large and close to my brain stem... so it can't be surgically removed. I still wonder whether... if someone had thought to scan my brain sooner... would I have had an easier time. One thing I'm 100% sure of... if I had waited for symptoms to show up before I insisted on the brain MRI... it would have been too late.

Now, in the spirit of full disclosure, only 3% of HER2 BC patients get brain mets as their first and only site of mets. But why have insurance if not to make sure you're NOT one of those people?

Just my humble opinion. And naturally my own case colors my judgement on this topic. But... if I were you... I'd complain of bad headaches and/or dizziness... and get that MRI because your son needs his mom... and as I well know, there are no do-overs when it comes to cancer! (BTW - there's no radiation exposure with an MRI)

Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
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1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
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6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
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Old 07-10-2013, 09:41 AM   #10
SusanN
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Re: Not any kinds of scans will be done!

Hi linn...I will finish my last TCH treatment July 22nd...then Herceptin...I will tell you, being the anxious person I am...I asked my MO about scans, etc...he said "only symptoms"...I do have migraines...will see what happens from here...they have subsided a bit...
However, I am going to have to go by faith...my prayers...trust in God... ohhhh as tough as it may be, to walk that out!! I DO NOT want to live a life of fear...!!! This has been such a rough road already...as you know...I can't begin to thank soooo many of you for encouraging me with such love, knowledge and wisdom...
STAY POSITIVE!!!! Hugs to you!!
__________________
10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
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Old 07-10-2013, 11:22 AM   #11
linn65
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Re: Not any kinds of scans will be done!

As far as radiation and limits!! I cannot imgine not reaching that limit!!

Denise,

3% goes of BC goes to brain, intersting. I didn't know the perentage. Do you know the percentage for the rest; Liver, Lungs, or Bones??? HER2 is only in 20% of patients from the get go so we are unique from the start.
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 07-10-2013, 11:26 AM   #12
linn65
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Re: Not any kinds of scans will be done!

Susan,

1 more of TCH very good if that can be good! Also, according to my ONC which I was confused on before is he only says 17 Herceptin's total, so you should be done with Herceptin alone next April. I really feel cancer free, but I do go back to the thought BC NEVER hurt just the darn treatment. HER2 BC is a complicated beast!!
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 07-10-2013, 11:31 AM   #13
roz123
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Re: Not any kinds of scans will be done!

no scans for me either...only if I am symptomatic - I had a bone scan a few months ago because of on-going back pain which I have attributed to my recon surgery but my onc wanted one anyway - all clear
no bloodwork, nothing for me. My onc just does a manual exam when I go in for my 3 month check-up
does everyone else go every 3 months? when do I graduate to every 6 mos
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right breast IDC 2.2 cm LVI
neoadjuvant fecx3, tax and her x3
surgery -pCR 0/2 nodes
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herceptin x18
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Old 07-10-2013, 11:42 AM   #14
linn65
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Re: Not any kinds of scans will be done!

I say my ONC yesterday, my BS August 5th, but my ONC scheduled a follow up back in 6 months with him. He said something about him and the BS rotating seeing me, and I want to say....Since no scans, no tests or anything if I have symptoms I will make an appt. No need for a meet and greet!! It will be interesting in August what my BS will say about next appointment, but I will tell him what the ONC said about rotating visits. I know they said the first 2 years are the HIGHest percentages to have a reoccurance, but I am still not sure when those two years start. I always end up having more questions then answers.

I did find out I can bowl on occassion just not for 6 hours straight! LOL...You are not supposed to have blood drawn or BP taken from arm after lymph nodes removed, but ONC made it sound to me I can do anything I want as long as its in moderation.
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 07-10-2013, 11:53 AM   #15
Lauriesh
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Re: Not any kinds of scans will be done!

Catching mets early usually doesn't matter. While for brain mets, catching them when they are smaller and fewer can open up more treatment options, for liver, lung and bone, it doesn't seem to matter.

I was about 4 years out and I had a ct scan because of pain and my liver was clear. A year later, I had horrible pain and had another ct scan. I had two liver tumors, one was 11 cm. I have never seen anyone on this site or other ones that i am on have a tumor that big.
You would think my prognosis would be worse than someone who had a couple tiny ones. Yet, here I am. I have been Ned for almost 2 1/2 years and doing well, while sadly I have seen women diagnosed after me with smaller tumors who are now gone.
What matters is how you respond to treatment, not how early mets are found.
The important thing is to notify your onc of anything that doesn't go away after 2 weeks. back pain, stomach pain or bloating, cough, shortness of breath, etc.


Laurie
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diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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Old 07-10-2013, 12:15 PM   #16
linn65
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Re: Not any kinds of scans will be done!

Thank you Laurie I didn't realize catching them early doesn't really make a difference. That helps! I wouldn't know if I had any symptoms really because in this year I feel like my body has been chewed up and spit out. I have two more herceptin's and unlike others I guess. I can almost feel the Herceptin go straight to my ankles and feet then they hurt. Then my hands hurt which it feels like in my mind what I think it feels like is "Arthritis". Then a few days before I go for the next Herceptin it feels better. I get Herceptin and it starts all over. It's strange unlike TCH it took a few days to really hit hard it seems Herceptin I can feel that night in my body.

My point is before I would come to the conclusion I am having some sort of problem I need to be off this treatment for a little bit I think. It is still preplexing to me to assume Hercpetin is working!
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IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 07-10-2013, 12:47 PM   #17
'lizbeth
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Re: Not any kinds of scans will be done!

I am curious as to why the Pet Scan does not include the brain.

Remember Idele Davidson's book chemo brain, and the research she discovered showed if an original pet scan included the brain, subsequent pet scans could help to show when the chemo damage to the brain was occurring.
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Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 07-10-2013, 01:03 PM   #18
KDR
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Re: Not any kinds of scans will be done!

Breast cancer: no symptoms.
Liver mets: no symptoms.


Karen
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World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 07-10-2013, 01:37 PM   #19
msmanuf
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Re: Not any kinds of scans will be done!

I requested scan and my oncologist did them. I haven't had a bone scan yet so, I am going to ask him when I see him on the 19th. My left knee and leg is very painful. Will let you know
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Old 07-10-2013, 03:18 PM   #20
LoisLane
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Re: Not any kinds of scans will be done!

My oncologist or breast surgeon did not order any end of treatment scans. If you do have
any symptoms that last over a few weeks they will certainly order the appropriate scan. Roz cant remember when you go to the six month checkup routine.
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August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
ER+PR-
Stage I Grade 2
Radiation and Femara

November 2008
Lumpectomy right breast
2 tumours .03 cm and .05 cm and extensive DCIS
.05 tumour Her2+
lymph node negative
venous/lymphatic invasion "indeterminate"
ER+PR low postive
Stage 1 Grade 2

January 2009
bilateral mastectomy
chemotherapy taxotere
Herceptin one year
Femara
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