Just to let you know I got the all clear. Following an examination, mammogram and ultrasound scan I have been told I have capsular contracture with calcium deposits which explains the hardening and pain I have been experiencing. It’s a relief.
There was no fluid around the implants so nothing to aspirate.
The advice was to leave things be. However, I am considering having the implants removed with no replacements.
Thank you for the support and advice, I really appreciate it.
Great news. Watch and wait seems like the best response. Please keep in mind that BIA ALCL hasn't been ruled out because it's not been tested for so keep an eye out for any symptoms and if you do decide to remove them in the future, please make sure you also have the capsules removed as a precaution. Great news though. You must be so relived. Carla xx
Despite having a double mastectomy second time around, I was unable to have reconstruction, due to previous surgery. I felt upset about that at the time, but feel quite glad about that as I see how many people are having bother with BIO-ALCL now.
I can only imagine the relief in your house tonight and am absolutely delighted for you. Please don't forget to continue to check your breasts routinely, just in case there are any further changes. That having been said, I sincerely hope that you never have to face this worry again.
Please let us know if you do decide to remove your implants.
I have Allergan implants that were recalled due to cancer risk. My symptoms started with a slight change in shape, followed by very itchy nipple and now pain in my breast. It also appears a bit swollen. Going to my gp today and would love some advice. What shall I ask for? A scan to first check for fluids? Any help is greatly appreciate! I’m feeling so stressed about this and also blame myself for having the implants in the first place! With three young boys to look after I don’t want anything bad to happen.
I'm not sure what time your appointment is with your GP is today but I just wanted to wish you good luck and give you our cancer nurses telephone number in case you wanted to have a quick chat with them about this before you go.
You can call them on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.
Hopefully you'll hear back from some of the other members on this discussion before you head off as well.
First of all, don't blame yourself. We were not warned about this risk at the time so you were not given the info you needed to make an informed decision.
Secondly, it sounds like you've already done a lot of research into the ALCL risk so you're already leaps ahead of most. I hadn't heard of it until I was diagnosed. It does remain uncommon so don't panic yet but I agree, with the implants you have and the symptoms you're getting, it's crucial you rule out ALCL.
Your GP should refer you to a breast care specialist. They may do an ultrasound to see if there's any fluid as you say. If there is, they may do a fine needle aspiration and send the fluid away for testing.
My advice would be to take as much info as possible along to your GP. The GP has unfortunately been the first major hurdle for many women, including myself, to get past. If your GP won't refer you, you will need to be very assertive and not leave until they do. Anything you can find online about symptoms and your implant brand being associated will be good. My GP turned me away 3 times because she'd never heard of it (and neither had I at the time so I wasn't prepared). You will be prepared and ready to self-advocate!
I hope that your visit to your GP went well today. There is no point in blaming yourself for getting the implants. You were not to know at the time that there was a problem with these implants. Did your GP agree to refer you?
I just read the article. What a horribe journey you've been on! I really hope that you dont have to go through anymore surgery now and that it won't come back. I'm grateful that you are willing to share your experience and help us with advice and information. Thank you for that!
Would you mind telling me what they did to you during the fourth surgery? Did you still have scar tissue or was it a build up of fluids again? Also, have you received any other treatment in addition to the surgery?
I saw a GP on Wednesday and I was very lucky because she sent an urgent request to the breast clinic and I've already received an appointment for Thursday next week. I really don't know how much they know about BIA-ALCL or if there is anything I need to make sure they do? What if I have a build up of fluid but there is not enough for a sample? Have I understood it correctly that you need at least 50ml for an accurate sample? Is there any other way to test for BIA-ALCL?
When it comes to symptoms - did you ever have a numb, uncomfortable feeling in your armpit extending out to your arm? I have had that feeling off and on for years. At some point so bad that it prevented me from sleeping. Not sure if its linked at all.
Do you have to be tested every year to see if you still have BIA-ALCL or is it only if you show symptoms?
I'm sorry about all the questions but I have so many thoughts running through my head. I'm so happy that I found this forum though. I will also look at the facebook page you've mentioned in previous posts.
