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Old 01-12-2015, 10:32 AM   #1
JessicaV
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Join Date: Apr 2014
Posts: 169
Scared

Hi, it is half past one in the morning of 13th Jan. One year ago exactly I had a first appointment with my surgeon, then a mastectomy on 16th Jan. I was so scared that I would die before the year was up. Pathology on 24th Jan told me I was node neg, etc (all in my signature) lots of reason to make my continued survival very likely. I got through that first year of TCH with the Herceptin continuing till next month, thought I was ok knowing I have an 8% chance of a recurrence within the next 3 years, but a 92% chance of no recurrence. But now I am aware in a way I had not really taken in, that the next three years is when it will happen if it does. And suddenly it is all a bit overwhelming again. I am a psychologist for heaven's sake, I know the little tricks to settle myself down. But I feel very much alone, afraid and tired at the moment. It is hard running the gauntlet of all these dark anniversaries.

What do you do when you feel like this? How do you get through the bad days and nights?
__________________
1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.

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Old 01-12-2015, 11:09 AM   #2
waterdreamer
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Join Date: Jan 2010
Location: Thousand Oaks, California.
Posts: 199
Re: Scared

Hi Jessica,

First of all congratulations on completing your year of treatment. I was diagnosed 7 years ago when I was stage III. I had 22/28 lymph nodes positive. I declined treatment and a year later I did do chemo when mets showed up in my lungs and bones. There is so much you can do, on so many fronts. I have a few favorite books at the moment which may guide you - Radical Remission by Dr Turner, then there is No More Cancer, by Dr Gary Null and coming out pretty soon is a book by Dr Mitchell Gaynor called the Gene Therapy Plan.
Life is awesome and I am grateful for each day, each birthday and the opportunities I have to make a difference.
Have an awesome week.
Fern
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.


Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 Thoracentesis 1500 ml drained from right lung.
June 2016 CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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Old 01-12-2015, 01:25 PM   #3
snolan
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Join Date: May 2011
Location: El Paso ,Tx
Posts: 436
Re: Scared

I had the same feeling when I finished treatment, felt frustrated when I had all those appointments and then when they were not there anymore I felt scared, the Dr's where my security blanket. This whole journey is very traumatic and like with any traumatic event it takes time to trust again. Being able to trust your body, that it is not out to kill you just takes time. I felt like I had to tell everyone that I had cancer, about my experiences I guess to help me justifiy my struggle. Now that I am 4 yrs out I don't feel like that any more. I have been able to put this experience in the back of my thoughts and am able to focus on the here and now. None of us have control over what happens to us in the future which is scary enough. Talk about how you feel to those close to you, and let time heal. Hope you gain strength as you celebrate each new milestone.
__________________
dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 01-12-2015, 07:44 PM   #4
Kkmom
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Location: 'Burbs of Atlanta, GA
Posts: 166
Re: Scared

Jessica,
I am going on 2 years out from being diagnosed with breast cancer. I had to get to the place knowing that cancer may be something which I will always be looking over my shoulder for it. I live a different life now after cancer - one which I not only appreciate every day, but now I appreciate every hour.
For a guide on living with a disease like cancer - try - You Can Beat the Odds - by Brenda Stockdale.
__________________
[FONT=Tahoma]Dx 12/14/2012, IDC, 2cm, Stage II, Grade 2, 4/5 nodes, ER+/PR+, HER2+[SIZE=2][COLOR=Blue]
Surgery 12/28/2012 Lumpectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)
Chemotherapy 02/06/2013
Herceptin, Carboplatin, Taxotere Started 6 rounds on 02/06/2013 Herceptin
Finished chemo - May 22, 2013
Radiation Therapy 06/12/2013 - 36X External
TM Marker - 13 October, 2013
TM Marker - 15 November, 2013
Annual Mammagram - 3D - Both Breast - CLEAR!!!
Colonscopy - 1st-Clear - November 18, 2013
CT Scan-Results-Clear - November 27, 2013
BC Diagnosis-1 Year - December 14, 2013
TM - holding steady at 15 - December 24, 2014
TM - 24.2 - January 12
Herceptin Treatment - Last One-February 4, 2014!!!
TM - 3.7 - February 4, 2014
MRI & CT - February 21, 2014 - All Clear
NED - and my doctor said - "well, it looks like you are NED - your MRI and CT are clear - Febuary 25, 2014
TM - 18.2 - February 21, 2014
Port Removed - Scheduled for Wed, March 19, 2014
Port Removed - Yeah!!! I feel lighter already!!!
TM - 15.3 - March 25, 2014
Diagnostic 3D Mammogram - Rt Breast - All Clear!!! - Tuesday, May 13, 2014
TM-15.5 - June 25, 2014
Diagnostic 3D Mammogram - Nov. 2014 All Clear!!!
Diagnostic 3D Mammogram-Rt Only-May,2015-All Clear!!!
Diagnostic 3D Mammo-Annual-Nov 2015-Right Clear!!! - Left Breast-found 5 mm CYST. Aspirated - all clear!!
TM - Nov 2015 - 18.2
NED-December, 2015 - 3 Years NED!!!
TM-Feb 2016 - 13.7
TM-June 2016 - 13.3
TM-Oct 2016-10.0
Annual 3D Mammo-Nov, 2016-All Clear!!!

Annual Mammogram - November 2017 - ALL CLEAR. i AM 5 (YES) YEARS OUT!!!

NED - 5 YEARS - DECEMBER, 2017!!!
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Old 01-13-2015, 09:53 AM   #5
thinkpositive
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Join Date: May 2014
Location: San Diego
Posts: 411
Re: Scared

Jessica,

It has been a year since I had my double mastectomy. I was stage 3c. Yep, it does get scary at times. However, I've come to terms with the disease and truly believe that the more stressed out that I get the more vulnerable my body becomes to cancer. Additionally, if my life does get shortened by this disease I want to make the best of each day that I have. I'm convinced that worrying only makes matters worse and certainly doesn't help ward off cancer in any way.

When my mind goes to these dark places, I remind myself to focus on positive things. I visualize my positive thoughts attacking cancer cells. I think of things that I am grateful for. These can be real simple things but they are meaningful things to me (enjoying a cup of coffee, sitting in the sunshine, playing with my kitties, reflecting on meaningful relationships with family and friends).

When I cant sleep, I read books that are uplifting and make me happy. It helps me.

Best of luck to you Jessica. I'm hoping you find a trick that works for you.
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 01-13-2015, 11:31 AM   #6
Christine R
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Join Date: Jan 2015
Location: Manhasset NY
Posts: 56
Re: Scared

One day at a time.
Sometimes this is easier said than done.
At chemo yesterday the nurse said to me, we can worry ourselves to death.
Ain't it the truth?
Deep cleansing breaths help me. Best of luck!
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Old 01-23-2015, 08:22 PM   #7
fauxgypsy
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Join Date: Apr 2007
Location: Mississippi
Posts: 598
Re: Scared

It has been almost 8 years and I have been NED for almost that long. I still remember how terrifying it was. I still have moments. It has gotten better for me but I still worry about it coming back. I think that we don't get the care we need emotionally. I have been reading about the long term effects of breast cancer. We try to be strong, to be warriors, to keep from letting our friends and family down and we don't deal with the fallout until months or years later.
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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