Thanks for that information, it's so helpful to have people like you who have been through it all! I went to my GP and will have a breast clinic appt within 2 weeks to get this lump checked out. I will bring along the NCCN documents - is it mainly the flow chart I need? I think that's what worries me, because they know so little about it I'm scared they'll miss something! 

Regarding the implants, I think I need these textured ones out now just for peace of mind sadly! I'll deal with the lump first, but if that's all clear I'm hoping to find a surgeon to get rid of implant and capsule and swap it for a smooth implant (no huge rush of course) 

Does this just carry the normal risks of surgery?

I hope you're well and recovered 

xx

Hi all 

I'm new here. I was wondering if you could share with me what your symptoms were for ALCL? And what your swelling looked like. 
 

I have textured nagor implants. For a week or do I've have pain in my right chest and back. My implant is also looking strange... it's very soft snd squishy and when pushed down itcramsins depressed for about 10 seconds. I'm going for an ultrasound but I can't get I've got a week snd I'm very nervous about it being ALCL. I'm barely sleeping at all  

I've had ruptured implants in the past and already have silicone in my lymph nodes. 
 

thank you got your help 

sarah 

Hi Maisym00,

Yes, the flowchart is one of the key documents. 

On your questoin on whether explant carries just the normal risk of surgery, research varies and there a few different sets of findings. Some research suggests that having surgery increases the risk of disturbing the area e.g. by potentially problematic cells being released from the capsule. The general consensus seems to be that until a woman is symptomatic, the preferred approach is to leave the iplants in and monior closely for any changes. 

Where expant is needed, some doctors advocate that symptomatic patients should have a total capsulectomy at the time of implant, i.e. removing the whole capsule with the implant still inside, all at once, to prevent any of the fluid leaking into the body. This is a much riskier and invasive surgery and requires a skilled oncological surgeon because the capsule can get stuck to the ribs and the surgeon potentially needs to operate very close to the lungs. The increased risk of this type of procedure requires careful consideration of the pros and cons. Other research suggests that removing the capsule, even if in pieces i.e. bit by bit, is suffieicient to mitigate the risk of developing (or treating) BIA ALCL.  

Until you know what this lump is, you don't know if you're symptomatic or not so it's impossible for you to weigh up the pros and cons or whether to have an explant right now, or how the explant would be done. Also, I'm not a doctor and my understanding is limited. Every patient has their own set of circumastances that need to be discussed and agreed with medical professionals. 

Good luck at your appointment. Do as much reading as you can in advance so that you're informed. The Facebook group "ALCL in women with breast implants BIA-ALCL" has an absolute welath of experience and is a great place to start. You're doing everything right by going prepared to your breast clinic appointment with all these questions. You've got this!
 

Hi 

I've been reading these posts with interest after googling ALCL which I must admit I never knew about until recently. 

I've had my textured implants since 2003 and last year experienced tenderness and hardening around my left breast. I immediately thought my implant was rupturing and after contacting my GP was told I needed to go private as this wasn't something the NHS would cover! 

Anyway after a private consultation a mammogram and ultra sound the specialist said the implant was intact and any hardness and lumpiness was due to capsular contraction and unless it was bothering me it wasn't a problem. 

About 3 weeks later I noticed a visible rubbery lump about size if pea on the side of the breast.  thought anything sinister would have shown up on the scans but booked an appointment to see a surgeon to talk about replacements. He advised to wait and see how I felt at the end of the year as he didn't feel the implant was that bad to warrant surgery, he wasn't concerned about the lump given I'd had a scan in the past couple of months. 

Moving forward the capsulation is worse and the lump is more visible (not sure if the tightness is making it more noticeable)  I get pain around the side of breast where the breast is more hardened so went back to see the surgeon who confirmed it was worse and went through the procedure for replacements with me saying he'd probably use textured as he thinks that's what was probably used previously and is better for replacements. He explained the slightly more risk of certain cancers but he thought that it was acceptable since I have had the original ones in for 20 years without problems. 

This is where Google comes in  after hearing the word Cancer, I convinced myself that I  have all the symptoms of ALCL except the swelling. 

I emailed the surgeon my concern about replacing with textured implants  and said I was concerned about the lump. At the same time I confirmed the make and size of the original implants. (Silimed  - made in Germany) He's now advised me to book in with another specialist to get a re-evaluation (although he said he was sure it was nothing) 

So today I managed to see a lady GP who has requested a 2 week referral after assessing me ( she couldn't say what it was but there was a lump and hardeness ( which I knew already) I go on holiday for 2 weeks tomorrow ( been waiting for this Caribbean cruise for 2 years and now I'm going to be worrying the whole time but I suppose rather worry in the sun than here in the cold. I've also booked a private appointment for when I get back in 2 weeks just in case the appointment comes before I get back. 

Sorry for the long story but it helps to tell someone that knows what I'm going through. I'm just worried that something was missed in the first scan and I've had a problem for over 8 months without knowing