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Old 04-06-2014, 01:13 PM   #1
linn65
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Location: Attica, IN
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Very scared and trying to breath

It has been 3 weeks Friday since my final diep flap surgery, and I struggled with at first with....my right shoulder muscle being tight on right side and it went to base of. Neck and up. and I have kept trying to loosen it by heat, ice, bio freeze, ibuprofen and pain meds. Nothing seemed to work, and I asked the nurse about it from my plastic surgeon and she said only work half days last week and probably with the positioning they had me in just made all this happen. Then it became like a really bad stiff neck, then it would it pop when moving my head around. Finally, the pain got really bad and I went to ER. He x-rayed it and said it looked like a cervical sprain and arthritis. And it being In middle of night he said to call my doctor Monday.

My base of cervical spine looks swollen and so I am still icing it and laying here, pops if I turn it at All, so waiting to call doctor on Monday.

When the ER doctor did put is fingers on my cervical spine it really hurt and made me cringe inside. So how I am just scared to death...could cancer be in my cervical spine already....I don't know what to think.
__________________
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 04-06-2014, 03:21 PM   #2
Cat
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Re: Very scared and trying to breath

Dear Lin,
Did the ER Dr. tell you anything to do?
If the ER Doc said it was a strain and arthritis then icing or heat is good but also moving it to keep it mobile. I had a TRAM so recovery is different but I do know I had pain in a lot of places except my "stoobs" as my daughter so named my boobs made of my stomach.
Do call your Dr. but try to relax as first it's unlikely the cancer has returned. Second arthritis hurts and the more inactive it is the more it hurts. It's a vicious cycle, it hurts to move but then gets worse if you don't. Try to move your head and neck gently without looking up though because that can pinch nerves and cause more pain. Advil is an anti-inflammatory and may be helpful if you can take it (with food). The popping is probably an indication of the swelling caused by changes in the soft tissue. I also have arthritis in my neck and it can sound like rice krispies at times!
Good luck with it and I hope you feel better soon.
Deep breath... Cathy
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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Old 04-06-2014, 05:07 PM   #3
Lovemyboys3
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Re: Very scared and trying to breath

Hi Linn65,

I am sorry to hear this second phase isn't going well and I hope you start feeling better soon. Could it be the inflammation is pressing on nerves? I am no doctor but I know when I first was diagnosed I was so tense and stressed that I began feeling this horrible pain up my neck and shoulders that went all the way down my back, leg and even to my feet. It was horrible! My doc felt a huge knot in my neck that took a lot of time to go down but once it finally did the pain subsided. I know the X-Ray showed more than a strained muscle but wonder if it could be doing the same thing. So many nerves in that area. I think if they saw something suspicious like cancer they would have said or done something at that point.

Stay strong and although I know how hard it is, try and relax as much as possible. Surgery is tough on the body much less after chemo. Our bodies have been through so much.
I pray you begin feeling better soon.
__________________
Lovemyboy3

6/27/2013 - Diagnostic Mammogram due to a tiny lesion found.
6/27/13 - Diagnosed with Breast Cancer at age 33 :'(
07/11/2013 - Surgical needle biopsy
07/15/2013 - Path report results from biopsy - DCIS with micro invasion, Pagents disease - ER/PR- Her2+++
7/26/13 - PET Scan CLEAR!!
8/19/13 - B/L Mastectomy w/DIEP Flap reconstructive surgery. Nodes removed clear!! Stage 1A. Positive Margins remaining
8/23/13 - Finally HOME from the hospital
9/10/13 - All drains out. YEAH!!
9/6/13 - 2nd Surgery to try and remove remaining positive margins. Port placed.
9/11/13 - Path report shows all tissue samples are neg. Clear Margins!!
10/3/13 First TCH treatment - Horrible amount of side effects.

11/10/11 - First weekly Herceptin treatment.
10/11/13 - Late night ER visit due to Neutropenic fever - WBC at 0 in the hospital.

11/17/13 - Ultrasound on left breast due to pain. Benign findings: Oil cysts and possible Fat Neurosis from reconstructive surgery.
11/24/13 - Round 2 TCH treatment.
11/25/13 - Neulasta Shot given. Side effects minimal. Woo Hoo!
11/27/13 - Said goodbye to my hair. :-(
01/14 - Mammogram and Ultra sound - CLEAR!
01/23/14 - Last scheduled Chemo! WOO HOO!
03/04/14 - Phase 2&3 reconstructive surgery DONE!
03/06/14 - 2 days after surgery and 1st Herceptin only treatment. Minimal side affects.
03/14 - Began having pain and weakness in my feet and legs. Doc thinks it is delayed side affects of chemo possibly Neuropathy. Could even be the Herceptin (what ever it is I would appreciate it if it went away :/)
03/14 - A little over 8 wks post chemo and hair is about 1/2in long. :) Not a whole lot but its getting there. Eyebrows are taking there time but are coming in nicely.
04/14 - Where did my eyelashes go? :/


16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:16-18
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Old 04-07-2014, 02:54 AM   #4
Jackie07
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Re: Very scared and trying to breath

Hi Linn,

That sure was scary.

Once we've been through cancer, it's hard not to be alarmed whenever we feel aches and pains. And a 'pain on the neck' sure gets our attention.

I would take the ER doctor's word and contact the oncologist on Monday.

Your tumor was Grade 2 which is much slower growing than grade 3. I wouldn't worry too much about a bone metastasis if I were you.

Easier said than done.

We all understand the panic and worries in/after our cancer journey ...

Sending you good vibes.

ps. The pain you felt when you put your finger to it probably was caused by exposed nerves which will be related to the arthritis issue. It's not fun. I was told about 'cervical vertebrae degeneration' when I complained about similar problems. The x-ray confirmed it and I have been more careful when doing exercises.
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Old 04-07-2014, 10:09 AM   #5
linn65
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Re: Very scared and trying to breath

Jackie my tumor was Grade 3.... Yuck, that means it can grow faster??

I have an appt at 2 to be seen by doctor do check in injections in my muscle in my shoulder and a possible MRI but not sure of anything yet.

Needless to say I had a BIG cry last night, and I just want to go to bed and wake up totally healed, take a vacation....it's starts to feel or my paranoid mind thinks I don't want to tell anyone another thing wrong with me....feeling a little defeated today.
__________________
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 04-07-2014, 10:25 AM   #6
michka
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Re: Very scared and trying to breath

Push for a MRI. It is probably from the positionning on the operation table but you will really feel better once you understand what is going on in your neck.
Sending hugs. Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 04-07-2014, 10:33 AM   #7
Cath
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Re: Very scared and trying to breath

Hi Linn65, I know how scary every ache and pain is. Cancer never used to enter my mind when I wasn't feeling well or had pain but now it's the first thing that comes to mind. I'm glad you have a doctor's appt today. Hopefully he will ease your mind a bit. Sending good thoughts to you. Cathy
__________________
Cathy

Routine mammogram 6-29-11
Ultrasound 7-5-11
Biopsy 7-11-11
Right modified radical mastectomy 7-18-11 with 7 out of 24 lymph nodes positive
Stage IIIC, Grade 3, Estrogen + 100%, HER2 +
Had 5 tumors in right breast, none of which showed up on the mammogram (What showed up on mamm was a lymph node)
Lymphatic vascular invasion
Lymphedema right arm (started shortly after surgery)
TCH started August 15, 2011
Finished Taxotore and Carboplatin 11-28-11
Radiation x 36 - finished Feb. 3, 2012
Herceptin weekly for 1 year - finished 8-13-12
Arimidex started Feb. 2012 for 5 years
Left prophylactic total mastectomy March of 2012

Arimidex stopped August 2014 due to side effects
Aromasin started Sept. 2014
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Old 04-07-2014, 03:15 PM   #8
IrvineFriend
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Re: Very scared and trying to breath

Hope you get some relief soon. You need a break!!!
-Julie
__________________
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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Old 04-07-2014, 03:25 PM   #9
Cat
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Re: Very scared and trying to breath

I'm also glad you're seeing the Dr. I hope you get some answers and relief. It's a hard road but it can be done. I know what you mean about not wanting to talk to anyone else about what else is going on and wanting it to just be gone but venting here can help.
Good luck with it all
Cathy
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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Old 04-07-2014, 07:06 PM   #10
linn65
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Re: Very scared and trying to breath

I had 4 injections in my neck today with cortisone and lidocaine mix. The first was a little uncomfortable but man the 2nd was a little shockingly painful I immediately tensed my shoulders and said damn, damn. Damn....the 3rd and 4th were kind of the same ad the first so it was doable.

They are scheduling an MRI and our to call me with time ans date to come back to do it. Part of me thinks if I get continued relief than should I do or not do MRI?? He said the popping in my neck is arthritis which he said I have had for years now. But surgery 3 weeks ago and he things the position I was in aggravated it most likely. So I keep thinking maybe I shouldn't look for trouble and do MRI because at this time what would I even do anyway because I don't have time from work after this last surgery. And I don't want to do another one either.

Thoughs ....MRI or no MRI??
__________________
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 04-07-2014, 07:17 PM   #11
IrvineFriend
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Re: Very scared and trying to breath

The MRI will give a good look at what's going on. I would do it for sure.
__________________
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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Old 04-07-2014, 08:32 PM   #12
Pray
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Re: Very scared and trying to breath

I concur with the other. All reconstruction surgery is very tough to recover from. It takes many monthes not weeks. MRI sounds like the right thing to do. Peace of mind is every thing. MRI is defiantly the lesser evil of the tests you can have. Keep talking, that's half the battle. You really are doing great! His peace my friend��
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
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Old 04-08-2014, 07:55 AM   #13
snolan
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Re: Very scared and trying to breath

Ask for a physical therapy evaluation. Try to find a therapist who works with cancer patients even a lymphedema therapist have training with reconstruction issues. I had to have therapy ended up with capsular tighness that was causing impingment issues and I am a therapist so you would think I would have done a better job at working my shoulder. Hope you start to turn the corner with this soon.
Suzanne
__________________
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 04-08-2014, 12:00 PM   #14
'lizbeth
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Re: Very scared and trying to breath

Ah crap - I am so sorry that you are going through this. Been there done that with pain at the spine. Is this cancer mets? That is what we all ask.

I vote yes for the MRI. You need it for the peace of mind.

Inflammation in the cervical spine hurts. I had the worst whiplash decades ago. It took a year to heal. I lived on Advil - which by the way can draw sodium into the kidneys. I can't take it now makes the BP go through the roof.

You are taking a beating right now my crazy friend, hold on and expect to heal. Those doctors need to take good care of you. Who else will leave those hysterical messages in my inbox that crack me up so much.

Sending you love from the West Coast!
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Old 04-09-2014, 06:03 AM   #15
linn65
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Re: Very scared and trying to breath

You women are all so good to me!! When I question myself, and am I doing good enough with all this treatment. It is such a cycle.....THANK GOD MY HANDS AND FEET AREN'T HURTING NOW!!!

Snolan Capsular tightness sounds like that is the problem or makes sense to me. I found my old MRI last night and in 2006 I had severe whip lash from sliding on black ice, and I hit a utility pole. At the time I would fall asleep and wake up so tight I literally couldn't move. I was married and I would tell my husband to help me, so he would pick me up and carry me to the couch and help me stretch it out. I did physical therapy, and I got better pretty quickly. Now, that being said I have had pain in my cervical spine in the past but it was always doable.

After each surgery I never had neck problems like now it feels like I have whiplash again or something. Anyway, when I looked at my MRI it said I had some sort of 2 to 3 mm cyst back then but they never really did or said anything about it, and I didn't really pay much attention to it either. Now, I did last night and of course that made me a little unsettled because the BC took years the doctor said to get to the place it was, but I think surely that is just a coincidence.

I will get my MRI done after hearing what everyone has said. Those cortisone shots have not started helping yet or should I say it just feels very, very tender in my right shoulder and up to the base of my neck and up......BUT I will try, try, try to be patient with myself and it sure is hard to do.

Colateral damage....I swear!! I am at work today, so I am trying to think of my posture, and I will look side to side, take my ibuprofen and hopefully soon this will all settle down inside!
__________________
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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