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Topic: Not sure what to think

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned —

Meet others concerned about developing a recurrence or metastases.

Posted on: Feb 24, 2020 07:04PM

Mimi050210 wrote:

Hello. I was diagnosed in Dec 2017 with left side IDC with Micropapillary features. I had BMX, no reconstruction. Two lymph nodes were taken and were clear. I was on Tamoxifen for a year but taken off of it due to my cancer being so small, margins clear, and clear nodes. I have done well since my cancer surgery with the exception of some lymphedema. I have also had some pain in my chest area while wearing my bra and prosthesis but have been able to deal with it by taking a pain reliever. About a week or so ago my right ankle was hurting like I had sprained it however I had no recollection of injuring it. I did notice that I have a knot on my leg right above where my ankle was hurting. No bruising just a knot. I’ve also been having some dizziness and headaches at night. And my affected side (my left side) has been hurting more and even my shoulder is hurting now. I’ve noticed some soreness in my side (up under my arm) and it seems as if my side stays swollen the majority of the time. I know it seems like a lot of random things happening here but I really do not know what to think. I did go ahead and schedule an appointment with my oncologist for this Friday to get her opinion on all this. I try not to worry about recurrence but I think I am starting to wonder if this may be something. Anyone out there with similarities? Thanks for taking the time

Dx 12/6/2017, DCIS/IDC, Left, <1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- (IHC)
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Feb 24, 2020 08:05PM beach2beach wrote:

Hi Mimi,

I was diagnosed in 7/17 and had surgery 8/17 with ILC. I had a bmx with direct implants. I had sentinel nodes one each side removed and was clear. NO chemo or rads. Still taking tamoxifen. I have noticed on and off sometimes weird sensation in my right nipple(I had a nipple sparing mastectomy) on the affected side and sometimes i feel that my armpit is slightly swollen compared to the left. I get random pains which I have been wondering if its just me noticing or if it is side effect of the tamox. I had an onco appt. in Dec and all was good and just had a physical with reg dr and all is good. I have dizziness lately but then again I have allergies Idk, I feel like I am going nuts sometimes with these feelings and when I start to focus on them forget it!

I'm not any help with giving you an answer, but wanted to know you are not alone and I will be following your post to see how your appt. goes. :)

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 24, 2020 09:41PM - edited Feb 24, 2020 09:43PM by AliceBastable

It's much more likely to be random body aches than anything to do with cancer. Just because you once had cancer, doesn't mean you won't get other totally unrelated weird stuff going on.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Feb 24, 2020 09:52PM - edited Feb 24, 2020 09:55PM by sweetp6217


I too have been having some strange things going on: aching joints, carpal tunnel symptoms in both hands, but at the beginning of the year, I had what looked like frozen shoulder, but in both shoulders and just for a few days. Frozen meant that I could not lift, type, shower, etc. for a good two days, had pain so bad in the shoulders that I couldn't sleep and finally tried Tylenol Arthritis (Aleve and XS Tylenol didn't do diddly). The symptoms/pain got better day by day and I was able to go back to work.

Long story short, my MO isn't taking any chances and I'm having a full body bone scan this week. (Not a dexa). They'll be able to see if there's an infection, damage, more cancer, etc. My new reumatologist thinks it may have been a virus or infection and not a SE of hormonal med or frozen shoulder, for that matter.

Oh, P.S. Do you sleep on a regular bed? I haven't been able to do so for ages since my hysterectomy (which came before BC). I now sleep in a recliner. Otherwise, my arm would go "dead" and then hurt like a dickens once circulation resumed.

Dx 7/7/2017, IDC, Left, 2cm, Stage IIB, Grade 3, 1/2 nodes, HER2+ (FISH) Targeted Therapy 7/27/2017 Herceptin (trastuzumab) Chemotherapy 7/27/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 1/4/2018 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Radiation Therapy 2/21/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 4/14/2018 Femara (letrozole)
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Mar 5, 2020 03:26PM KBeee wrote:

I'd definitely get your symptoms examined so you can get to the bottom of them. They sound frustrating!

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)

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