Seeking Help for Post-Cancer Treatment Pain and Complications

Hi there. I just wanted to check in and say I'm glad you're here. Your body has been through a lot in a relatively short amount of time and unfortunately what you are describing with your pain is common after surgery and radiation. That said, advocating for help managing the pain and for your team to make sure everything is healing as it should be and nothing else is causing it is so important. It sounds like you are already doing this so well. Please keep us all posted on how you are doing and the result of the pulmonologist appointment. I'm hoping things start to feel more comfortable for you very soon. Suzanne (Community Moderator)

Dear Suzanne, Thank you for your time and encouraging words. This definitely has been a world wind of events. I am glad we can be here to support one another. Still wondering if anyone has this hard rock like area from radiation? Plastic surgeon says I need to wait another four months to see if it goes away. Yet, my question for everyone is, what is it? It’s hard like a rock. I am having the lymphodema massages and treatment and all therapist says is that they have seen it before yet no direct answer. I Google and Dr said it isn’t a Seroma so I am at a loss. Thank you everyone!

I had my expanders swapped out for implants prior to radiation. Finished radiation (25 treatments) on July 1st. No issues with hardness. But did gave some occasional sharps pains following radiation. They seem to gave subsided. Keep your physicians informed. Keep massaging the area, I'm told that goes a long way in helping to prevent capsular contracture. My plastic surgeon also prescribed zafirlukast to help prevent it.

I am already at the capsular contracture state. Even though radiation ended June 11. It feels like it’s bigger. I had 33 treatments of radiation. They wanted to wait five months after radiation to finish before the did implants not to have implants during radiation. They put expanders when they did double mastectomy on Feb 3rd. I have bad lymphodema when they removed 13 lymph nodes too. I have therapy twice a week for the massages yet my range of motion is gone. They are working slowly. Thank you so much for writing me Susan. How long since everything started for you. I pray you have a safe and blessed day. God Bless 🙏🙏🙏

Luz, My journey started with my annual mammogram at end of May 2024. Double mastectomy in August. Chemo from beginning of October to mid march. Swapped the expanders for implants April 15th. Started radiation at end of May and finished on July 1st. Just started anastrazole and kisqali 2 weeks ago. Glad to be cancer free and trying to get back to normal. It's a journey for sure. None of it is easy. Be sure to communicate with your physicians. I am blessed to have an amazing team supporting me.

I Am do happy for you bring Cancer free!!! God Bless you!!!

Ask your oncology team about physical therapy. I am working with a team that specializes in cancer rehab and it's helping my frozen shoulder-from radiation.

Hi Jamie. Yes I Am having outpatient therapy twice a week for lymphodema Massage. Breast Oncologist removed 13 lymph nodes.

Wow, that was a lot of radiation. I wish I had looked into proton radiation instead of traditional. I only had 20 sessions and I am stage 2A with 1 positive node. They only removed 3 lymphnodes. So sorry to hear all you have been through.

Hi Diana. Thank you for your support and encouragement. It made me feel Better this morning. I am struggling with positivity and not Be sad. I put on a happy face for others since there are those that have it worse. That you for Being my light this morning. God Bless you!!!

Hi Diana. Did you ever have your breasts removed too? Any reconstruction or a lumpectomy? Reason I ask. I have lymphodema from nodes they removed plus from radiation my left side I have capsular contracture which is so painful and hard. Let me know if you have any experience or any of your friends have gone through this too. Thank you so much. I appreciate you being here.

Luz if you are early in your journey it takes time to find the new normal. I had a rough 18 months with hip pain and lots of xrays to see if I had bone metastases and then lung nodules found...had 3 CT scans and a wonderful pulmonologist that let me know each time he did not think it was metastases and after the 3rd CT it had resolved. This past year I have focused on gut health and inflammation and feel a lot better. Gut health is key to your immune system. The fear of a recurrence is real but you will find a new normal and live life again. Focus on eating healthy and exercise.

Luz, I had a lumpectomy on 12/6/22. I did not have the number of radiation treatments as you an my surgeon says it's like I never had radiation, but my lungs have fibrosis due to treatment. My daughter in laws mom had a mastectomy but not due to cancer. She did have the encapsulated breast tissue and they had to go back in right about a year out and did away with the implants. My sister is a surgical nurse and said she saw this on a fairly regular basis and she told my younger sister who had a single mastectomy to go flat and she did. Since you had a mastectomy why did you have to go through radiation? My sister did not have to have it. Also why so many lymphnodes removed. The studies show taking out more than 10 is not beneficial. I guess each surgeon is different.

Proton therapy is fantastic. It is concentrated so that it targets only the cancer. It is more effective, and spars healthy tissue. I recommend physical therapy for the frozen shoulder. I had a full mastectomy and 4 nodes removed. Exercises prevented a frozen shoulder, and is even helping with the lymphedema. (They don’t tell you, but if you have nodes removed and follow it up with any kind of radiation, it’s pretty much guaranteed that lymphedema will I follow, because your lymphatic pathways are destroyed.) I also had a significant and persistent seroma after surgery. It seemed like it would never go away. But my PT fashioned a little bag out of tape and little styrofoam pieces to put under my arm, and now the seroma is almost gone. It’s a low tech fix, but very effective!

To Diana, if you have any lymph node involvement, you’re most likely going to need radiation, even if you have a full mastectomy as well as node dissection. It’s the nature of having cancerous lymph nodes. They put you at high risk of recurrence. But the good news is that radiation, and in my case, Proton therapy, can make it possible to be cancer free, as i am right now. I was stage 3, so I feel very blessed at to be in full remission at this time.

Thank you so much ladies for all your feedback. It makes me feel better and not alone. I appreciate all of you! Guess it’s still early. At first they gave me two options lumpectomy with chemo and radiation or double mastectomy, radiation and no chemo when they did surgery on February 3rd that’s why I chose this they placed expanders and removed the the 13 lymph nodes cancer had metastasized to sentinel node and 12 other lymph nodes. I began radiation in April for Two Months. Now I have lymphodema having therapy still having infusions fatigue is always there. Midway I began the could and have had ct, chest X-rays took pearl pills for chronic cough, amoxicillin and now prednisone. Found small nodules in my lungs not to be worried. Yet it is hard to had a pet scan last week and will get results tomorrow. Lots of side effects the worst is the capsular contracture. It’s hard like a rock and doesn’t go down. Going to October for reconstruction for Both breasts yet considering going flat after this experience. I also need Mohs surgery on my scalp yet very basic in September for basil cancerous cancer.

Hang in there, my friend. It’s hard as hell, but you’ll make it through and almost forget (almost!) how awful you felt during the worst of it. Good luck and prayers.

@Luz Mary S : I had a dbl mastectomy, stage 2B cancer - I had 2 or 3 cancerous nodes. My surgeon removed 23 nodes to be safe. I chose to go flat because I didn’t want any further surgery or problems. I did the cancer PT for my arms and range of motion and it was great. Highly recommend. I’m feeling good after surgery in March but just started Letrozole this week, so hoping I don’t have much side effects

Dear @Vicki F thank you so much for your support and encouragement!!! God Bless all of us. I appreciate your prayers!!!

Hi @Dennie. Yes side effects are the worst. Taking Anestrazole and Verzenio. I see Dr tomorrow. I believe will have expanders removed. Too much pain and no change in a couple months. Wow 23 nodes is a lot too. Your arm must have swollen too and no range of motion. I like the physical therapy it removes pain during session. The infusions should fix my whole electrolyte system and fatigue. I am praying for others too since there are those with worse situations. Thank you for reaching out to me and God Bless you!!!

Hey Jamie, I'm dealing with frozen shoulder. I had the steroid shot, but it didn't really help, so I'm in the process of talking with my orthopedic surgeon about manipulating the shoulder muscles.

Zasw

@Brisna Z ???

I had dmx, flat chest, 21 nodes removed found 3 with cancer, then 21 radiation treatments. Now experimenting with hormone blocker meds and still need to do arm exercises because the muscles do get hard in this area. Going to a cancer focused PT after surgery is one of the best things you can do. Stay with it as long as you can.

Hi Dennie, thank just had both expanders removed last week. Waiting for labs to let me know what was in the scar tissue mass. I pray you’re doing well. How does the Letrazole help you? Any side effects?