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Topic: 4 years NED and now severe pain in both shoulders

Forum: Pain —

Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Oct 31, 2019 09:45PM

Snoodles wrote:

Hi, I am 4 years NED from Her2+ Stage 3c Grade 3. I am now dealing with severe pain and popping in both shoulders that came on fast and bends me over double in pain, it actually feels like my bones are dis-locating . I was treated with chemo, a double mastectomy and radiation and had some lymph nodes removed. I have had a desk job since 1989 and have done nothing to injure myself. Does this seem like something that could be related to my cancer treatment? I have to see a doctor soon, the pain is almost unbearable and I have decided to start with my radiologist. When it started in my left shoulder I had planned to get an appt with an ortho but then when the right shoulder developed the same thing I decided the Radiologist might be a better place to start. It is truly unbearable at times and continues to get worse and I have a high pain tolerance. Does anyone have any ideas??? Thank you in advance. I was a member here during all my treatment but couldn't remember my user name so I had to create a new account today. Help me please with advice.

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Oct 31, 2019 11:23PM AmyQ wrote:

Snoodles, could it be arthritis? Did you have any previous injuries to your shoulders or were you athletic in high school where you might have damaged your body in sports?

Isn't it awful how our brains automatically go to cancer when we have aches and pains. I just hate it. Seems like a radiologist is a good place to start. Perhaps an orthopedic doc if you can't get in quickly.

Good luck -

A

Dx 2/7/2013, IDC, 1cm, Stage IV, Grade 2, 2/3 nodes, mets, ER+/PR+, HER2- Chemotherapy 4/8/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/18/2013 Femara (letrozole) Radiation Therapy 11/24/2015 External: Bone Hormonal Therapy 1/9/2016 Faslodex (fulvestrant)
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Nov 1, 2019 12:14AM DATNY wrote:

If it is symmetric it is unlikely is cancer. I have high pain in my jaws joints after the treatment.

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Nov 1, 2019 01:02AM SerenitySTAT wrote:

How long have you been in pain? My left shoulder started popping over the summer. Initially, it was somewhat painful, but now I feel the pop with no pain at all. I did injure both my shoulders when I was young (also my knees, wrists, ankles, and one toe).

If it continues to be painful, then it's good to be checked out. I have had multiple scans since my shoulder started popping, and nothing has been picked up in my shoulder.

Hope you find relief soon.

"Do not overlook the little joys!" (Hesse, 1905) 🐶☕️🛀🖼🥐🌲🎭 Dx 11/2015 IDC Left IIIC 10/11 nodes ER+PR+HER2-, 12/2015 Left Mast, 2/2016 4 AC+12 Taxol, 9/2016 Rads Nodes Chest wall 15+4 boosts, 10/2016 Tamox, 4/2019 Exemestane, 12/2019 Ibrance/Xgeva
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Nov 1, 2019 01:06AM Moderators wrote:

Hi Snoodles,

We're so sorry for what brings you here, but we're glad you have this community to come back to for support! We agree that the radiologist is a good place to start, and we hope that your appointment yields some answers. Please keep us posted!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Nov 1, 2019 02:45PM 2019whatayear wrote:

This has to be super stressful-- lots of people carry stress in their shoulders and necks. This may be exacerbating your pain and sitting at a desk job in front of a computer or looking down at your phone could certainly cause shoulder pain esp if you have any arthritis. I hope you get answers ASAP and that it isn't anything serious!

I found myself reading others signatures & comparing my dx to others. I decided to delete my info off my sig, b/c I felt like I was viewing people as their dx vrs. as individuals BRCA-2-BMX 6/25 -chemo 7/24 AC/T
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Nov 1, 2019 08:38PM Snoodles wrote:

amy, I have come to the conclusion that it is arthritis causing the pain. I did a lot of reading as that now makes the most sense. Yes I agree, no matter what happens our minds go to cancer.

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Nov 1, 2019 08:44PM Snoodles wrote:

thank you all for responding. I made an appt today for 2 weeks out. After much reading, I decided to go back to a rheumatologist. I have a long list of health problems including autoimmune diseases so I will start there and get some scans and then treat accordingly. Thank you again.

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Nov 3, 2019 08:33PM JoE777 wrote:

I think I would start with my oncologist. I chased my symptoms for 6 months only to discover I was metastatic

Dx 2/2012, IDC, Left, 2cm, Stage IIA, metastasized to bone, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/3/2012 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 1/7/2018 Femara (letrozole) Dx 2/2018, IDC, Stage IV, metastasized to bone/lungs, Grade 1, ER+/PR+, HER2- Targeted Therapy Kisqali Chemotherapy Other Radiation Therapy External: Bone Hormonal Therapy Aromasin (exemestane), Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Nov 4, 2019 10:53AM wallycat wrote:

The popping sound doesn't fit, but have you heard of frozen shoulder. Very common, especially in middle-aged women.

I hope you can determine the cause and start to relax. Best to you.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Dec 27, 2019 09:15PM jessie123 wrote:

I don't have pain, but I do have extreme tightness in my upper back, neck and shoulders. It gets so tight that it actually pulls my head to the side. It started two weeks after I ended radiation. At times it's gotten so bad that it radiates to my jaws. I went to physical therapy for it and that did help a lot. If I don't do exercises at home daily the sensations come back. What the heck is that? I don't want to do daily exercises the rest of my life. I want my old self back. Guess I need to go to an orthopedic doctor, but I was hoping it would go away on it's own. Has anyone else has this type of symptom?

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Dec 27, 2019 09:23PM MinusTwo wrote:

Jessie - my RO and the PT after radiation both said I would have to exercise and stretch the muscles every day - for the rest of my life. The radiation damage caused the muscles/nerves/skin to pull back just like a rubber band.

SNoodles - rotator cuff? Yes, I'd see an ortho and get X-rays first thing.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Dec 27, 2019 09:38PM TB90 wrote:

Minus: I totally agree. I have to stretch my shoulders and neck muscles all the time or else I get a muscle cramp that runs down my neck into my shoulder. Very painful, but goes away after a good stretch or massage. Worse also when I sleep awkward.

Dx 11/28/2013, DCIS, Grade 2 Surgery 12/18/2013 Mastectomy: Left Radiation Therapy 2/20/2014 Breast
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Dec 27, 2019 09:45PM MinusTwo wrote:

TB90 - I just got the name of a massage therapist who is supposedly familiar with breast cancer patients. I've promised myself that will be my B-day present to myself this year.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Dec 27, 2019 09:47PM jessie123 wrote:

MinusTwo -- but even the upper back muscles and neck muscles???? My RO said the radiation didn't affect that area, but maybe he just doesn't want to tell me it did. I thought it was from bending over my computer in a recliner for months through my treatments. I have purchased a new (NON rocking/reclining) chair and have moved my laptop to a table, but the tension continues this many months later. These doctors really should discuss possible side effects between MX and lumpectomy. If I had had a MX I would not have needed radiation. I was just too afraid of the longer need of anesthesia with a MX.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Dec 27, 2019 09:52PM jessie123 wrote:

TB90 -- did yours start soon after radiation?

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Dec 27, 2019 09:54PM MinusTwo wrote:

jessie - I think if the PT helped, you will need to continue the stretching exercises or go back for another round.

did you consider truncal lymphadma? Even the removal of just serial nodes puts you at risk. There should be some useful info on this site, which was originally created with lot of input from BCO members.

https://www.stepup-speakout.org/


2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Dec 27, 2019 09:56PM TB90 wrote:

Jessie, I had a Mx and still opted for radiation so you can never totally plan or avoid treatment. Your shoulder pain could be due to a hundred causes. Computer work is definitely a possibility. I now believe, as per Minus, that radiation can affect far more than the direct target. On- going throat issues, thyroid, etc. But do not worry too much. The vast majority of SE’s are annoying, not life threatening. The first few years of my recovery, I focused in on shoulder and upper back pain too and was convinced it had gone to my bones. The more I stressed, the worse the pain. But stress is also frequently expressed in upper back and neck. Now that I no longer even think about bone metastasis, pains come and go and never persist. Stress has so much to do with this. But do explore it with your dr. Just know that pain where you describe it is so common, particularly after a bc dx. We have been there. Hug

Dx 11/28/2013, DCIS, Grade 2 Surgery 12/18/2013 Mastectomy: Left Radiation Therapy 2/20/2014 Breast
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Dec 27, 2019 10:00PM TB90 wrote:

Jessie: I had so many aches and pain that caused panic in the first few years post Mx, that I cannot recall what started first and when. I still have, but no longer lose any sleep. At 60, think that aging and arthritis are more likely. But still extremely active.

Dx 11/28/2013, DCIS, Grade 2 Surgery 12/18/2013 Mastectomy: Left Radiation Therapy 2/20/2014 Breast
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Dec 27, 2019 10:04PM jessie123 wrote:

MinusTwo - thanks - I'm going to look that up right now.

TB90 -- I kind of think that you are right. I am very stressed. I won't even take the AI because of stress and that causes me even more stress because I know that I should take it. I guess my head will get straight one day - hopefully soon (-:

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast

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