I had a mastectomy in November 2023. It was grade 2 invasive lobular hormone positive breast cancer. Also had lymph node clearance in my armpit, 4/17 were positive. Felt absolutely fine after the operation. Was discharged after 2 nights and came home with 3 drains. No pain at all. Followed all the guidelines regarding gentle exercise and no lifting. Went to the hospital weekly for general check-ups and to have the drains changed. After 3 weeks had the last drain removed even though it was still collecting liquid. The nurse said it was a small amount and fine to have the drain removed. That same night I experienced extreme pain in the ex breast area.
To cut a long story short I had an infection and the expander which had been inserted had been rejected by my body. I was going to the hospital 2-3 times a week complaining of extreme pain and after a month it was decided to have another operation to remove the expander. Almost immediately I felt tightness in the ex breast area. I felt I didn't have enough skin to cover the area. And it felt like a slab of marble had been glued to my chest. Heavy and hard to touch.
Now 11 months on since my mastectomy I still have the adhesions pain and if anything It has got worse. I finished 6 months of chemotheraphy at the end of June. I completed 15 sessions of radiotheraphy in mid August. Since then I have tried physiotheraphy, accupuncture, lymph drainage massage, cortisone injections directly onto the mastectomy scar (excrutiating pain) and swimming. The pain has increased since finishing radiotheraphy and the skin has got harder and some areas beneath the scar are lumpy.
I had no side effects during chemotheraphy. I was lucky with radiotheraphy too as just felt drowsy during the first week. But the adhesions pain is becoming unbearable. Everyone I've seen tells me it will get better but I'm starting to fear this could be permanent. Has anyone been through anything similar? Can you recommend successful treatments?
Hi Toscana and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
It sounds like you've had a long and difficult journey so I can understand you wanting to find others who have been on a similar path to you.
The online community is divided into different support forums and I can see that you've already joined the breast cancer forum which would be the ideal place to ask your questions and share experiences.
Once you feel ready to post there you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
