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Old 02-28-2013, 06:43 PM   #1
LeahM
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Location: Bethlehem PA
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Unhappy Not sure what to think of the info I got today

If you saw my Tamox Gripe thread then you know I have been experiencing some strange things lately, mostly tingling on my left side and shortness of breath. I have had my Pulse Ox taken 3 times since Sunday and each time it has been 99%. My resting heart rate has been hovering around 100bpm. So I have had some tests:

EKG is normal. (ordered by PCP)

Venous Doppler ultrasound of lower extemities normal. (ordered by med onc)

CT Scan with Contrast of chest (ordered by PCP) shows scarring right upper lung lobe r/t rads (not surprised) and a 5mm nodule and a 4mm nodule on both my left and right lung...origin unknown...rescan in 3 months. (again, this was PCP not onc) No PE, which is what he wanted to rule out.

Next Wed I have a 2D Echo scheduled (insurance denied a 4th MUGA...whatever)

So here is where I am at:

1) Why didn't onc order these scans when I told his nurse I was SOB?? And...I bumped into said nurse while at hospital after CT Scan...I love her...she is sooooo on my side...yet PCP calls me with results...not onc?? Should I be mad at him? (I often feel like I "bug" him but I want him to know I am me and not a statistic...plus having a medical background doesn't help as I am always asking questions)

2) The reason why my BC was found so early is that I am a lumpy, bumpy person and am always having "things" checked...fibroadenomas, sebacious cysts...I also am one of the 5% of the population that has an extra elbow muscle....(and boy does that cause problems). My point here is that I have a history of benign everything...until BC.

3) I can't stop thinking of BonnieR who had a lobe removed for nothing...Bonnie...I would love to hear that whole story

4) I would rather have Herceptin related heart issues (good reason why my Pulse Ox is ok and my resting heart rate is high) then lung mets. Seriously. Nurse says I would just stop Vit H if 2D Echo is bad...next Vit H March 12.

5) I am slightly freaking out...and would prefer not to "know" this stuff now as PCP says "do nothing and rescan in 3 months"....I have HUGE plans for this summer as last summer was a bust...and re-treating CA is not on my "to do" list.

6) Tomorrow AM I have a follow up appt. with rad onc., she isn't going to know what hit her when Alan and I come in the room.

7) I realize that there is nothing that can be done with a "nodule" that small...I wish I hadn't had the test and had gone with my first thought which was to wait till after the 2D Echo and if the results of that were ok then I would address the lungs.

8) I dont know what to do/think at this point.

9) Need hugs and prayers....

Thanks
Leah
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39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
www.onmywaytosurvivorhood.blogspot.com
www.thechemobag.com
www.facebook.com/thechemobag
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Old 02-28-2013, 09:25 PM   #2
CoolBreeze
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Re: Not sure what to think of the info I got today

It sounds to me like they are doing everything for you to try and find what your problems are. I do think anxiety can cause a lot of these issues. I've been in herceptin for 3 years - my MUGA (every three month) numbers dropped from 65 to 55 but still within normal range.

I have shortness of breath too but have been on chemo three years. They have done some tests, including lots of breathing ones, but I found nothing out of the ordinary. I am not sure why you want a scan but I think you are going to have to realize that some side effects are going to happen to you and they last a while after treatment. SOB is not a sign of early lung mets, which may be your fear.

You are NED. Take those question marks out of that statement in your signature. You are NED. Enjoy that. A lot of us don't get it. The four months I thought I was NED were some very happy months. Please give yourself that time. Your body is getting back to health after a traumatic experience and you as your blood regenerates, you may have bone pain and SOB. I would tell folks to investigate and tell their doctors but you have done that and are getting a complete evaluation. So do your best to relax into that.

Try to believe you'll be okay and when you start to "freak out" go to a happy place for you. Whether it's yoga, painting, scrapbooking, blogging, helpiing a child - do something that takes your head out of yourself.

*hugs*
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http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 02-28-2013, 10:57 PM   #3
StephN
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Re: Not sure what to think of the info I got today

Yes, those here who do have some sort of medical background can tend to be ultra-vigilant. Sometimes, it has been said, a little knowledge is more dangerous than none.

I like the attitude expressed by Cool Breeze. There are some long term effects from chemo and the other treatments that vary from one to another, but DO occur. Our doctors do not say much about these, and we are never given a laundry list of side effects to expect. We just try to deal with things by the seat of our pants.

This is a big part of the value of this web site - we can talk to those who are in the same shoes.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 02-28-2013, 11:33 PM   #4
Paty
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Re: Not sure what to think of the info I got today

Leah,

You have my hugs and prayers dear. I do not have much of an advice to give you, what I can say is that I had some symptoms like the ones you have an it turned to be anxiety attacks. Now, my x-rays of chest were 'normal' except for the fibrosis in the upper lobe of the right lung. Do not panic. The nodules that seem to be there could be something else, not even the doctor can determine at this point what they are. Try not to think about it, there is always treatment.
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Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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Old 03-01-2013, 12:32 AM   #5
CoolBreeze
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Re: Not sure what to think of the info I got today

I forgot to say, that even though I have mets (to my liver) I have nodules in my lungs. Most people do. Rescans and PETs show that they are just likely scarring from an old bronchitis or pneumonia and have not grown in two years.

The problem with us cancer patients is we get to see the inside as well as the outside, and we have as many warts and lumps and scars inside too.
__________________
http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 03-01-2013, 03:03 AM   #6
sarah
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Re: Not sure what to think of the info I got today

Leah, Cool and Stephanie are correct, side effects happen and the docs don't tell us about them but given a choice, would we not do chemo or radiation knowing our lungs or arteries might have problems? No, the most important thing is to stay alive and be as active and happy as we can be.
Being vigilant is good but being overly anxious is not.
I ask too many questions also!!!
I also have breathing problems thanks to side effects but I walk, I go to the gym, I travel, etc. I huff and I puff when I go up hills or do too much but do I regret or second guess my treatment? No, I'm so very grateful I'm still here!!! as a friend who like me has had a recurrence "Life is just too much fun!" that's my new motto.
Take care and enjoy things. You'll have a great summer.
hugs
sarah
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Old 03-01-2013, 06:00 AM   #7
Lauriesh
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Re: Not sure what to think of the info I got today

The sob and tingling could be anxiety/ stress. My dr had me take an Ativan the next time I had some sob and tingling to see if it got better. He said if it did, then you know it is related to stress/ anxiety. Mine did. It might be worth a try.

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 03-01-2013, 06:28 AM   #8
PinkGirl
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Re: Not sure what to think of the info I got today

Hi Leah
I had the lung nodule thing happen twice. Both times I had CT
scans every 3 months to look for changes. They never changed.
Someone decided that they were probably from coughing a lot
when I had bronchitis. Sorry you're having to deal with this.
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PinkGirl

Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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Old 03-01-2013, 07:02 AM   #9
NEDenise
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Re: Not sure what to think of the info I got today

Leah,
I have benign lung "things" too. Lots of bronchitis and pneumonia in my past, so no big surprise.

I agree with the SOB and tingling being the possible manifestations of anxiety...you're certainly entitled to as much of that as you want/need! If you have that Ativan...maybe it's worth a try. At least in the short term...to get symptom relief. Works wonders for me sometimes.

Your treatment updates, and the team you've described so far seem to have been top-notch. I hope that continues and that you get some answers and relief sooner rather than later.

Deep breaths, try to stay calm...easier said than done...
Prayer and hugs headed your way!
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
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 03-01-2013, 07:40 AM   #10
MJo
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Re: Not sure what to think of the info I got today

I have a lung nodule. My oncologist said "I've seen a million of these." Of course I was scared, but so far so good.

My 9th month of Herceptin, after my Muga scan, I walked into the doc's office ready for my infusion and he told me "No more Herceptin for you" My Muga showed a drop in my ejection rate, or whatever it is. Very upsetting, but I'm sure I got enough Herceptin to wipe out that da---d cancer. So far so good, and my heart is fine.

Anxiety causes numbness and tingling in hands and even face and shortness of breath -- I know! I use Xanax, but only when I need it.

Stay well, my dear sister. Treatment is no walk in the park!
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MJO

IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 03-01-2013, 10:46 AM   #11
Becky
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Re: Not sure what to think of the info I got today

I also have a lung nodule and an area of scarring from an pneumonia from years before BC. We are an unfortunate group that we know all the weird things in our bodies from tests and scans. The regular population has these things too but just don't know it because they haven't been poked, prodded and pinched like we have been.

I know you will still worry. I did too but believe it is nothing because it probably is.

Huge hugs from me to you.
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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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Old 03-01-2013, 11:50 AM   #12
BonnieR
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Re: Not sure what to think of the info I got today

Bonnie here! The one with the cautionary tale! You are so right to remember my story and consider what happened. I had a chronic cough and scans were ordered which lit up. I got referred to the oncology lung surgeon because it was in an area that could only be reached by a surgical biopsy. He could not just do a needle biopsy. When he operated, the frozen section came back positive for lung cancer so her removed the lobe on the spot. Two days later I was told the lab made a mistake and it was benign!!! It was just old scar tissue from previous lung infections. Which we all probably have
My mistake was allowing myself to be rushed. I had a pending appointment with a pulmonary specialist. I mentioned that to the surgeon who said" he will only send you back to me anyway". Later the pulmonary guy said that was not true. He first would have done conservative things like a course of antibiotics to see if there was improvement
So you can see how this happened Once you've had cancer, they look for more. But a lot of things can cause us to light up on scans And then the situation snowballed
It was a big rush and I felt uneasy about it. I felt bullied But at the same time, it seemed logical enough. Cancerland has slippery slopes
Keep the faith
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 03-01-2013, 12:07 PM   #13
karen z
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Re: Not sure what to think of the info I got today

You have received some fabulous advice here. Try to relax (hard I know).
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Old 03-01-2013, 12:19 PM   #14
LeahM
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Re: Not sure what to think of the info I got today

Thank you all!! I saw my rad onc today for a scheduled follow up appt (my skin has done amazingly well, btw) and she and I went over the CT Scan...loosely quoted this is what she said to me:

"Leah, we all have lumps and bumps in our bodies and 99% of the time they are benign, many times you never even know you have them. If you weren't a cancer patient and had this scan done I would say to you; these nodules are very small but big enought to see and what I see doesn't worry me. This could very well be something you were born with or something caused by multiple bronchitis infections, and I would suggest a rescan in 6 months and consider this your baseline. Since you have a history of BC I will say this to you; all of the above except we will rescan in 3 months and consider this your baseline. If you were my own sister I would tell you not to worry."

She went on to say that what I am experiencing is classic anxiety symptoms...I get that but I don't think that that is my problem (but I did take an Ativan today). She also said that they are classic Herceptin side effects and I do have a 2D Echo scheduled for March 6. So I will know more then.

She was glad my PCP ordered the test but she has taken over. Next scan on June 13 and I will see her again on June 14.

Then she hugged me.

I do love that Dr. MacIntosh...

...and all of you...thank you for lifting me up!!

Leah
__________________
39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
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Old 03-01-2013, 12:28 PM   #15
jaykay
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Re: Not sure what to think of the info I got today

Good news. I especially like the "if you were my sister"

Enjoy your weekend!
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 03-01-2013, 12:40 PM   #16
BonnieR
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Re: Not sure what to think of the info I got today

Any doctor who hugs you is a keeper!
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 03-01-2013, 03:08 PM   #17
NanaJoni
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Re: Not sure what to think of the info I got today

Leah - so glad your dr was reassuring today (and is kind enough to know you needed a hug). I have some scarring from radiation treatments on top of a lifetime of ashthma and bronchitis which also scars. So SOB is a chronic problem with me. I notice that, aside from Herceptin, you are finished with all the "big" treatments and may be experiencing (and I have heard of many others) the "end of treatment" anxiety. It's as if a safety net has been pulled out from under you. No more big guns to fight the cancer. And, believe me, that can lead to anxiety - I also had some minor tingling in hands and feet especially feet at night when doing long-term Herceptin. I started taking 100 mg of B6 every day and it really minimized the tingling. As always, ask before taking but 100 mg is a standard dose and shouldn't cause any problems if you go that way. Give yourself some time to relax and enjoy being done with chemo and radiation. Let your body and spirit heal as spring comes.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 03-02-2013, 10:18 AM   #18
caya
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Re: Not sure what to think of the info I got today

Wow Leah, your doc is amazing - also love that "if you were my sister" line- I wish all docs would remember that...
BTW, I developed SOB about a year ago, only noticed it when I was climbing up stairs, or going for long walks. With BC of course I immediately thought the worst, my GP did send me for a chest Xray, which was clear, but she also sent me for a special breath test, where you blow really hard and long into this tube and they measure ... well guess what, turns out I now have asthma - I strongly feel this is a late s/e from Herceptin. So I have an Advair disk and emergency puffer - I only use the disk occasionally, and the puffer maybe 3 x in the past year. More parting gifts from BC treatment, but hey, it is what it is.

Keep well.

all the best
caya
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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
15 Years NED!!
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Old 03-02-2013, 07:47 PM   #19
europa
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Re: Not sure what to think of the info I got today

Oh Leah, I am so sorry you are going through this. But I love what your doctor said and if I were you I would think along those lines. You will be fine. I had to sit down today after walking up two flights of stairs at the gym. It was so embarrassing because I could barely speak I was so out of breath. I use to be able to do an hour spinning class followed by an hour of yoga. Now I can't even walk up two flights of stairs. Unbelievable.
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.


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8 YEARS NED
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Old 03-03-2013, 01:11 PM   #20
IrvineFriend
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Re: Not sure what to think of the info I got today

Hi Leah,

Glad to hear you sounding so good. What a nice Dr!
__________________
Julie
Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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