It’s been just over a year since I finished my chemo radiation tx. I finished my immunity therapy in Feb 2021 this year.
I feel right now I’m struggling! I’m back at work! Which I thought would be easy but not so much.
ive been having this left arm pain for a while now since April. It’s gotten so bad I can’t sleep at night!
(I had stage 2A BC in the lymph nodes HER2 + 2 tumours)
I had a full hysterectomy in December and I’m taking examethasane daily.
I'm trying to remain positive but I’m scared my arm pain is more that just medication . I just had an X-ray Friday so hopefully it will show nothing new.
my work is Community nurse and I deal with lots of palliative people and right now I’m taking a LEAP palliative course. I can’t help feeling so sad that I will that palliative person on the receiving end in the near future. It makes me feel so sad , especially because I’m dealing with extreme pain some days and I have call in sick for work.
I don’t want to burden my friends and family with my fears because I feel they had enough of my struggles this past year. I’ve been eating a lot more because I just can’t cope.
I feel so lost
@Brendeath I still get arm pain 2 ½ years after mastectomy. I go to sleep each night with my arm elevated on a couple of pillows. At about 6 months post surgery I figured out I had mild lymphedema. I get minimal swelling, none if I wear a compression sleeve. The compression sleeve relieves my arm pain. See if you can try one on, I hope it will help you.
Thank you both for your messages! It reassures me to know others are having similar experiences. I faced chemo, surgery and radiation like a boss but now, a year later I am doing worse. I am not happy with my appearance and I have a lot of pain. At the surgical site, under my arm, down my side, and down my whole arm. No one has seen me in person since my surgery other than the radiation technicians. Thank goodness for google and chats like this! The medical profession doesn’t want us to diagnose ourselves but sometimes we have to. I found something called post mastectomy pain syndrome. I believe it describes what I am going through and has helped me cope until I finally Have an in person with my oncologist in December.
I might try a compression sleeve and see it it helps.
I’m sorry to hear that you are experiencing pain post treatment that does not have a reason (yet). Until your x ray results are back keep leaning on us. Many members of our community share that waiting is one of the hardest parts of the journey, and we are here for you while you wait for those answers.
Returning to work after treatment can be difficult too and given your line of work there is bound to be a lot of emotions that come up for you. Feeling lost and scared is not something you should (or have to) deal with by yourself. Have you been doing anything to take care of yourself and work through your emotions? Reaching out to us is a great way to start helping you handle everything you are feeling. After treatment ends, a common fear for both cancer survivors and their families is the possibility of cancer returning. In this webinar, clinical psychologist Dr Sophie Lebel discusses how to manage these fears during the COVID-19 pandemic.
Feeling bad about calling in sick to work is understandable! You do amazing, important work and you cannot do that if you are not taking care of yourself too. We all are in a rush to return to normalcy, but perhaps a new part of our normal is listening to our bodies and brains more than we did before.
I hope that you, @DMT and @Trac3y will continue to connect and share experiences with each other.
Until you know for sure, try to keep banishing thoughts of what you don’t know for sure! (I know — easier said than done!)
Your thoughts about being at work are understandable. Is there a conversation you could have about this with your employer?
Thank you DMT for the suggestion, unfortunately my arm pain is on the opposite side and I have no swelling been going to acupuncture, physio and massage and still unmanageable pain.😢
@Trac3y I also get pain in my torso, especially towards the side/back. For that pain what really helps is a compression camisole that I bought from a company called Wear Ease. The “Ava” camisole is high under the armhole and double thickness so provides me with lots of pain management. If I need to do anything really physical, like yard work, washing windows, etc, I make sure to wear the compression on both my body and my arm and hand ( I use a gauntlet). I like the sleeves and gauntlets from Lymphedivas. Be sure to leave the compression garments on for several hours after doing anything physical.
yes work is very understanding. I guess, I haven missed too many days, just the days I had advance booking convincing myself I was back to 100% in June.
I wanted to be back to norma! I took a day shift thinking I could do this (my normal hours are from 1330-2200)
the oncologists nurse called yesterday and said to stop the examethasane till I see her in October, so it was my first day not taking medications, today I woke up vomiting (don’t think it’s related) but my arm hurts so bad. im hopeful this will subsidize!
ive booked to see a psychologist sept 20 and I think this will be good for me to work thru some cancer trauma.
i just wanted to be “normal” again and mentally and physically I’m struggling!
thank you all for your responses, it nice to talk about this and know there are people who know what your feeling and will give you helpful advice.
its a crappy journey to be on but you guys walking beside me makes its more bearable!!
Hi there, wearing a compression sleeve can help big time snd learning to do manual lymphatic drainage on your arm would be something I also recommend. I went to a registered massage therapist who broke down the scar tissue in my left arm. It was very painful, but it worked. After a few weeks of that she taught me how to do manual lymphatic drainage, each day on my left arm. It was life changing! I went for massage treatment 2 x per week for about 3 months and I was pain free. everyone is different, but I worked very hard after my bilateral mastectomy to get my range of motion back. So even with all the exercise I did, scar tissue still developed, attached itself to nerve endings snd caused extreme pain. I was so thankful I tried massage therapy and manual lymphatic drainage .
good luck going forward!
wonderful you found relief in the compression and massage. It so great when you find tx that can help.
unfortunately for me it’s not lymphatic
my arm pain is opposite side on breast with tumours and I been too many many physio, acupuncture and massage appointments to believe its more mechanical in nature.
so I’m hoping its the examethasane that’s causing this joint pain. Crossing my fingers I get some answers
@Brendeath . I hope you get some answers with the xray, or maybe even eliminate something. I also hope you see some relief after being off the exemestane for a bit. There are other options for aromatase inhibitor they may be able to try if they determine you aren't handling the exemstane well.
I wish you well for your appt on Monday too
Thank you all for the support!!!
I have good news! I’ve been off the examethasane since Monday and I don’t have joint pain anywhere in my body!
ive been taking regular scheduled Tylenol 3 times a day and my shoulder doesn’t hurt!
after long shifts at work my knees and hips would ache and tried my best to look like I wasnt in pain in front of my coworkers, well last night I didn’t have any pain when I got up from my desk! I didn’t struggle I walked without pain!
unbelievable that this was a side affect from the medication!
I was so low at the beginning of this week thinking the worst!
now I’ve learned many things (maybe I knew them already 😉)
- Advocate for yourself!
- be kind to yourself
- reach out to support groups like this because there are other people who are on similar journey that want to help you!
hopefully when I see the oncologist in 2 weeks we will discuss a different medication with less side effects!