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Old 01-31-2009, 08:31 AM   #1
Sheila
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Location: Morris, IL
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My Journey since 2002

February 27, 2002

Wow, I remember that day as if it was yesterday, and yet it seems like a lifetime ago…I was so “cavalier” about having another breast biopsy…I had been through this so many times…I wasn’t scared, I was inconvenienced…my bags were packed, I was leaving for Phoenix for 3 months for my job as a nurse with Bechtel Construction. I had gone through hell and back to get a nursing license there…fingerprints, passport photo…I had never been to Arizona, let alone Phoenix! I put my plan into action, have the biopsy, Thursday, fly out on Sunday…I knew I could take care of the incision and drain…I’m a nurse! I had to make sure I took all the supplies I needed…I was set, nothing could stop me now!

Friday
The my cell phone rang…it was my mother, seemed the surgeon had been trying to get a hold of me…I was to meet him at the hospital in Ottawa where he was performing surgery…I STILL wasn’t worried…I was sure he wanted to make sure I was doing OK, enough to travel to Arizona. I sat in the lounge drinking strong coffee while I waited for him. He suddenly appeared, still in his scrubs. He had a worried look on his face…I had never seen that look, he took my hand and said “the report wasn’t good, you’re not going to Phoenix Sunday. I sat stunned…WHAT? Am I hearing him correctly? He looked at me and said the words that would forever change my life…the biopsy was malignant, you have cancer, a very aggressive type of cancer. I have scheduled you for a mastectomy Tuesday. If you want to get another opinion, you can, but don’t waste any time. The tears began to flow, was this a bad dream, how could this be happening to me? And a mastectomy? Why not a lumpectomy? He looked at me and again told me that I had a very aggressive type of breast cancer which required aggressive treatment. He hugged me, and said, I’m sorry, then said call my office Monday and let me know if you want surgery Tuesday.

My heart was heavy, my head spinning….CANCER….ME….am I going to die? I immediately thought of the horrendous surgery I saw my own mother go through when she was diagnosed with breast cancer. WHY ME…WHY NOW???? It almost seemed as though my life whirled in front of me…..what had I done or not done to deserve this?
And now, I need to tell my husband, my children, my family.

That weekend was a blur, many tears, fears, calling work and telling them I wouldn’t be flying out to Phoenix Sunday….I sat there with my plane ticket thinking of what I was supposed to be doing…instead of dealing with breast cancer. Is this a joke…I am turning 50, this is a cruel joke! Black balloons, wilted flowers, but breast cancer???

Tuesday was here before I knew it…..again, another day that would change my life forever…today I am going to lose my breast…..will my sexiness and femininity also be lost…will my husband still love me, will I die? My mind was whirling again….why me??? I remember waking up in the recovery room, in and out, my left chest covered in a shrine of gauze and tape…so padded that it almost looked as though my breast was still there….maybe they do that to minimize the trauma…I was in and out, lost in a sleepy haze and nausea…from the anesthetic and the surgery….my back hurt, my shoulder hurt, and I was a one breasted woman.

Wednesday Morning…time to go home, drains handing from my padded chest, I was off to “recover” at home…oh, this is what they refer to as a drive by mastectomy! Recover? How does one recover from losing a breast?

Word must have flown quickly, as that day and the whole next day was a whirl of flowers….seriously, our living room somewhat resembled a funeral home…but hey, I’m still here, I have lost a breast, and I am in mourning, but I am alive. Today was my first day as a cancer survivor!

That night, my good friend stopped by…she brought me PJ’s, chocolate chip cookies and a book that would soon become my new bible….”Secrets of the Sisterhood of Breast Cancer Survivors.” I read it from front to back, and again and again…I wanted to know all I could about this “cancer game”…I planned on winning, so I needed to be informed! As soon as I feel strong, I want to go to the library and check out every book on breast cancer….I want to know what I need to do to win!

Soon a few days had passed, time to go back to the Dr to get one drain out…they were such a pain to empty! I just had no idea that the drain tubing inside was about 3 feet long…at least that’s what it felt like…another week and I get to go see the Oncologist…another new word in my vocabulary. They must make you wait until you feel strong enough to get even more bad news…

Oncologist #1…highly recommended, rather insensitive, but highly recommended…but what would he know, he didn’t lose a breast! He studied the reports, and then told me I was one of the lucky ones…I had a very small tumor, 7mm, my lymph nodes were all negative, and that I would not benefit from chemo…..the risk outweighed the benefits. Was I lucky? I thought so, until he called me back a week later and told me that because my tumor was Her2 positive, they really did not know what to do with me…it was up to me if I wanted chemo….UP TO ME…they are the fricking experts!!!!

Oncologist #2…local, actually quite close to my home and well respected in a small town….he looked at me, looked at all my reports and then proceeded to tell me “ I fell into a gray area…they didn’t know what to do, or if I would benefit from chemo it would be my choice…poison with a risk of heart damage or nothing with a very slight risk of breast cancer returning…actually the risk was the same for that, whether or not I had chemo..

Oncologist #3…this is getting OLD! This oncologist treated my mother, and she has survived 13 years….she must be good…a professor of Oncology at a prestigious hospital and cancer center in Chicago…..her opinion mattered…and I felt was the most accurate…she read all the reports, pondered and then said, that I had a more aggressive cancer because it was Her2 positive, and there was a medication but it was only available to metastatic Her2 Positive patients…..it was Herceptin, just out of clinical trials and found to be a wonder drug if needed, but as Stage !, I did not qualify. The plan was to watch me closely, chemo was a crapshoot, as much of a risk as a benefit, and according to the American Cancer Society’s recommendations, the surgery I had was all that was recommended. Herceptin was there if I recurred. I was ecstatic…this damn disease took my breast, but it was not about to get my knee length hair…or so I thought.

March….I recovered quickly, went to get my “prosthetic breast 4 weeks after surgery…which required “prosthetic bras” to hold the prosthetic breast….they cost much more than those from Victoria’s Secret, but looked quite different, like something the military would issue….I just kept saying, today is the first day of my Prosthetic life…good-by low cut shirts and cleavage, hello one breasted woman trying to look normal. All this for my 50th birthday….WOW!

August…Before I knew it, work called and asked if I was able to do a short stint at a military base in Maryland….I jumped at the chance…I was so ready to get back to “Normal” life. I packed up my new style of prosthetic wardrobe …and was on a flight to Baltimore…wow, working on a military base where they are neutralizing mustard agent from WWII….now that’s a job for a cancer patient! Everyone I had worked with before that knew this was my first “job” since the big “C” was handling me with kid gloves…I had to keep reminding them that I was fine….I was back, and I was a survivor…that cancer stuff was behind me, at least until I took off my prosthetic breast, and looked in the mirror….that was reality.

October….done there , time to go home…but wait, can I go do a job in Tennessee?? Why of course, I am back on track, back working, doing what I love….and I’ve never been to TN…..Chattanooga…perfect. I loaded up and drove to Tennessee…I had my life back, I loved my job, I was making money, I felt good….. least until I looked in the mirror…..I remember our Christmas party, always a gala event…I had taken a dress I had from home, but .I wanted to feel beautiful, sexy, like the woman I once felt like, before the big C………I remember going to a boutique the day of the Christmas party, I found a beautiful spaghetti strap pale gray long gown…it fit like it was made for me…I even found clear silver shoes…they looked like glass slippers, now if only I could do something about the top of the dress…it had a built in bra….how could I wear such a dress? I explained my problem to the seamstress, and she designed a holder cover for my prosthesis that she sewed into the bra of the dress….she said go get ready, do your hair and come back and the dress will be ready for you ….I remember walking into the party that night, I felt like Cinderella, cancer was the farthest thing from my mind….I felt whole and beautiful and sexy….and I was…I felt like my old self. I decided the next day that when the job was finished, I was going home and taking time off work to have reconstructive surgery…I wanted the old me back…for good!

May came, I was finished, and almost sad to leave Tennessee as I had grown to love the area…but I was going home to start a new phase of my life…the new old me,

May 2003….Tissue Expander…yep, its as bad as it sounds, stretching tissue that was not meant to be stretched or at least not in that manner….After having it placed in my chest, my life would now revolve around “fill ups”…each one stretching the skin to the optimum level of an implant. I’m gonna pump you up took on a whole new meaning to me….and I constantly had to remind myself that this would be worth the pain…the old new me! It was September, only another month or two and my expander would be exchanged for the real deal…or at least a silicone simulation…the crème da la crème, the implant! I was getting ready to go to the Plastic Surgeon for the final fill up, when I saw a lump in my neck…I felt it….yep, a lump….I must be having a reaction to the tissue expander….I’ll show the Dr when I get there. I wasn’t worried, I felt great, and was soon to get the new old me back…..it seems like yesterday …the look on his face when I showed him the lump…he left the room and started making phone calls….the next day I was in the surgeons office…the same one who had performed my mastectomy just a year and a half ago…he tried to reassure me, but he looked worried…..it was biopsied, it was the breast cancer …again. metastasized to my lymph nodes…I would need further treatment. I was off to see the Oncologist again. Today was my First Day as a Stage IV Cancer Patient. It was Sept, 2003.

October 2003…Its breast cancer month…everything is a sea of pink, and I am drowning in it….How can this be happening to me…again? Am I going to die? The Oncologist wanted to place me on IV Herceptin immediately…wow, I had to recur to qualify…I don’t like being a qualifier….….but first I had to get the tissue expander removed…getting that done and getting the new “gal” didn’t seem quite so important now…..my cancer had returned. I began Herceptin treatments late Oct., 2003. My life would never be the same, I would need constant frequent monitoring, treatments, and medication for the rest of my life….everything I read about “Stage IV “ is poor prognosis….my only benefit is that unlike chemo, Herceptin is a monoclonal antibody, no nausea, no hair loss….actually other than time and a runny nose and eyes, it is a walk in the park…but my life was so different….before it revolved around fun and work and children and grandchildren, and now the focus is SURVIVAL….

Herceptin is truly a miracle drug, and kept me disease free until March 2006 when my supraclavicular nodes decided to sprout again….and so chemo was introduced to my cancer….an easy enough chemo to take…2 weeks on 1 off, 3 pills in the morning, 2 at night…except for the skin on my feet and hands burning and peeling, I was feeling good…still herceptin was the backbone of my treatment. After returning to stable or NED (no evidence of disease) status, I got a chemo holiday..still on the herceptin, but no chemo….but it was short lived, after 2 months, the nodes returned, and back on the Xeloda I went. This was a difficult time…my best friend from high school was dying…how could this be? She had just been diagnosed in December, it was only May….Why does this cancer keep invading my life…hasn’t it taken enough from me…now it wants my best friend? Why is she going to die????

June 2007….This time the Xeloda didn’t work and after several rounds, it was time to add a new chemo to the mix. Taxol was the drug of choice, and a new drug, Avastin…and with the fancy names came hair loss, indigestion, steroids, weight gain, blood pressure problems….oh my! The first treatment was the hardest, it took the whole day, first the Avastin, with Blood Pressure Readings every 10 minutes for 2 hours, then the Taxol, with Steroids and Benedryl IV and nurses hovering over me watching for any signs of a reaction…(Taxol is known for its sometimes life threatening reactions)…another 2 hours of dripping IV’s, and now we cqan top it off with some Herceptin….today I feel like a cancer patient, I have spent all day watching poison be mixed, then given to me, and now I feel sick and tired, I want to go home….and I get home, and I receive a call I will never forget, my best friend has died…..am I next?

And now my life revolves around chemo appointments, and scans and CT’s and Mugas, and MRI’s of the brain. I used to go to chemo weekly, I have now graduated to every other week. I have a port, which is very important jewelry to any chemo patient! I have been blessed with the most amazing chemo nurse….anyone who can make you smile while you are going through chemo is an angel….I know she has already earned her wings! I am used to not having much hair…actually it’s having no eyebrows and no eyelashes that bothers me…but I do reap the benefit of not having to shave my legs! Cancer does have its benefits, the look good feel better programs can transform a cancer patient into a Las Vegas hooker with wigs and makeup, all free of course. My closet now consists of artwork…scarves and wigs that can transform an ordinary cancer patient to a healthy looking everyday person, and I realize the extra time I have not having to do my hair!

In some ways I have lost a lot….but I have decided to focus on what I have gained….I have gained many friends, women who are fighting to survive everyday. These are truly friends that “get it” because they are THERE too! I have gained knowledge and power over this disease, I have gained a new appreciation for things that I would have never known, I have gained strength to be positive on this journey, and to help others who may be on this road ahead of me or behind me. This disease gives a person time to realize what is truly important in life, and to grasp and savor it. Its almost like the 2 minute warning…you get that second chance to evaluate and change. I try to keep up on everything new, an informed patient is the best patient…this will be the third year I go to San Antonio Texas for the Breast Cancer Symposium, where I gain knowledge of all the trials and new treatments from all the top oncologists all over the world. I am then able to use this knowledge in my own care, and help others in my support groups to empower themselves all they can with knowledge of this disease.

As with any disease, I still worry about every ache and pain, the what ifs and why’s, but in the end, the most important thing I have gained is acceptance, and with this tool, I can once again find the new old me.


__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 02-02-2009, 09:58 AM   #2
schoolteacher
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Shelia,

Thank you for letting me read about your life. I have not been able to write about my experience yet. Everyone tells me I will be better when I do write about it.

Like you, I want to focus on what I have gained from this journey. You do have words of wisdom for us all.

Amelia
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Old 02-02-2009, 10:00 AM   #3
Shobha
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I have been crying through every line in your post. It is so vivid and so touching.

You are an incredible inspiration to all of us! Thank you so much for sharing your battle. God bless you with a long life filled with joy and peace!
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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Old 02-03-2009, 12:17 PM   #4
Jackie07
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Wonderful writing! Amazing journey! Sheila, that is one inspirational article. Send it to Guideposts and see if it will get published.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundless(granules?) nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 02-03-2009 at 02:33 PM..
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Old 02-03-2009, 02:24 PM   #5
Jackie07
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Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,802
www.guidepostsmag.com
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundless(granules?) nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 02-03-2009 at 02:32 PM..
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Old 02-03-2009, 06:46 PM   #6
Laurel
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Location: Hershey, PA. Live The Sweet Life!
Posts: 1,969
Sheila,

Your story is belongs on Lifetime. Wonderfully composed. Beautiful in its honesty. Thank you for sharing it with us.
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

11 Years NED
I think I just might hang around awhile....

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Old 02-09-2009, 02:46 PM   #7
tricia keegan
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Posts: 3,427
Sheila, I never think of coming here too often as Carol wrote her story before she died and I found it upsetting.
I'm so glad I decided to look tonight, your story is written so well and so vivid I felt I was right there beside you and feeling your sadness and pain at your first dx.
Thank you for sharing this, and I agree with everyone else, it should be published.
__________________
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 02-09-2009, 05:50 PM   #8
Patb
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Location: Louisville KY Naples FL
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I agree, it is a moving story.
patb
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patb

Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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