Hi Becky,

Welcome to our forum. You are fine to post here. The situation that you are describing is more common than you would think. Things happen so quickly, especially when you are told that you have something totally different from what you attended for in the first place.

Some ladies do experience changes in their breasts following childbirth and also have cyclical changes. Did you breast feed or bottle feed? Breasts are seldom the same after having a baby.

I would be surprised if they didn't do all the normal checks when you attended last August. I have heard of some people being tested every year or two, but I do not know what the criteria is for doing this. It sounds as if you need a chat with your GP to see what s/he as told in the letter s/he would have received from the hospital after your visit. This should have stated whether or not you need to be monitored regularly. I would have expected this letter to have informed what type of implant was used too. If not, I'm sure that your GP could find out for you.

I hope that you get the answers that you want. Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

I hope that your GP can help you with this.

Evening Jolamine, 

Thank you so very much for your reply, I must admit I have been sat here hoping for something this evening as I have gotten myself into a bit of a state with all the information and my stupidity to not have asked all the right questions when I was there last time.
 

Throw into the mix some Covid-19 lockdown where I clearly have too much time to ponder things over! 
 

I bottle fed my little one, I wasn't able to breast feed him (complications after birth meant we were separated when he was born so I didn't get the opportunity sadly). 
 

I did try to get an appointment at the GP but given current situations they only called me and didn't really understand the situation, I was told that the breast clinic were not taking referral at the moment anyway unless I was an existing cancer patient which is understandable but also leaves me in a little bit of a limbo. 

Hey hun, I went through a lot of worrie and scared myself to death. It's rare and very treatable. I've been having a lot of wierd symptoms which ppl with breast implant illness say they have. But then I'm linking everything to my cycle. Things do change after having a baby. However if you are worried get the implants taken out. That will take away the risk of getting the cancer. You've been tested for it so I'm assuming it will be ok. I have allergen implants that have been recalled. I got them in 2014. You can call your company and find out what you have. I'm going to get mine removed when surgery is back up and running. Dont panic. You've been tested but implants can cause inflammation ect x

Hi Becky,

Why not write down all the questions you want to ask as you think of them? You can then have that with you when you talk to your GP, to ensure that you don't forget anything important.  i always do this before every appointmet, as do many people on this site. Can I ask whether your GP is male or female? It shouldn’t make any difference,but with matters like this, a female doctor is normally more sympathetic.

As Breast86 says, implants can cause inflammation. Did you have your implants inserted privately? I may be wrong, but if this was the case, they may have to be removed privately too. If however, there is anything medically amiss with your breasts, the NHS will remove them for you. I hope that you find Breast86's experience and advice helpful.

It's still not a full year since you were diagnosed with this. I don't expect that you will be checked again until the year is up. However, there is likely to be a backlog after lockdown is lifted, so do please contact your doctor again, if only to set your mind at rest.

Your GP should have had a letter from the clinic last year informing him/her of the outcome, so they should be able to answer all your questions and, if not, they should be able to find out. I don’t doubt what you were told, but I find it very hard to believe that the breast clinic is not taking any referrals at the moment and, that it is only treating existing cancer patients. I know that some scans and treatments have been delayed, but it is inconceivable that they are not accepting new patients. Perhaps others can tell us if they have had this experience? I am at a loss to believe this!

Do please let us know how you get on.

Kind regards,

Jolamine xx

Thank you again for your reply and to [@breast86]‍ as well. 
 

i had my implants through the NHS and did read that they would remove them too if I needed. The removal opens up a whole new can of worms I expect so I haven't thought about it too much. 
 

I don't have a specific GP and can request one when I book an appointment, I spoke to a female GP last time but she wasn't really grasping what I said as the letter really focused on the little lump I had which is what I originally went to the clinic for. She kept repeating that the results of that biopsy were clear but was a little lost when I asked her about any fluid test results. Am I able to request a copy of the letter perhaps?! Not that I would be able to make much sense of it anyway I expect. It's frustrating that there is the knowledge gap between the breast clinic and the GP. 
 

I shall ask again about the referral to the clinic - I do have the ward number for the clinic too so I'm in two minds to call them directly to ask if they are accepting new referrals. 

Thank you for your reassurances, I'm not sure why panic has set in, I am a single parent so the idea of getting poorly absolutely scares the life out of me.  I think a few days of breast pain and swelling set my mind racing. I must remind myself that if there had been anything wrong then they would have not have let me leave back in August last year I guess.  
 

Awwww hun I've been in your same position for over a year. Awful. Don't panic because it is such a treatable cancer even if it was it. The nhs did used to use allergen. I think they might have wrote to you though. Although my company MYA never did to tell me my implants were recalled. But the advice is not to do anything. 
 

yes you can request your medical records online through NHS for your HOSPITAL RECORDS or call your gp and ask them for the test results from the hospital. I did with all mine so I could go back on them all. So you can see what they actually tested. Did you have fluid at the time? Did the radiographer say? 

Hi Becky,

Don't panic about the possibility of your implant removal, when you don't even know whether or not this might be needed yet. I am one of these people who like to look at all possibilities, so that I can weight up your situation more accurately. I am glad to hear that your implants were done by the NHS. This makes it easier for you if and only IF anything needs to be done.

If you still have the ward no for the clinic, why not phone them up and tell them that you are still having trouble with your breasts and you're wondering whether or not this has anything to do with your implants? When it is less than a year since you were seen there, you could still consider yourself an existing patient. Was this the same hospital where you got your implants done? If so, they should be able to tell you what type of implants you've got.

Your GP should also have this information. If you were unhappy with how the last GP dealt with you, try to speak to another female doctor if possible and see what she has to say. You should certainly be able to get a copy of your GP's letter.

Best of luck in getting someone who will help you.

Regards,

Jolamine xx

Hi Becky,

Sorry to hear what you're going through. It's stressful enough, without the pandemic on top.

I strongly recommend you find out exactly what testing was done. The test to rule out BIA ALCL is very specific and includes analysis of CD30 cells. You say you got your results back in one day. This is concerning and a red flag as results for CD30 testing would not be turned around that fast. If the right testing has not been done, you have not yet ruled out BIA ALCL. There is a very specific way to test for CD30 and things to be aware of such as a minimum of 50mls (and 100mls better) of aspirated fluid being required in order to be able to successfully test for BIA ALCL. 

I'd also look into what type of implants you have. If they are smooth, your risk is minimal - so far there has not been a case of BIA ALCL in a person with a history of smooth only implants. If they are textured, this puts you at more risk and emphasises the need for you to get access to proper testing asap.

I also read through the discussions on explant. If you have textured implants and are showing potential symptoms (which you are - swelling is a very common symptom and I had it on and off for several months myself before my diagnosis) then there is a very specific protocol required e.g. a PET scan before implant removal and an oncological capsulectomy at the time of explant. This requires a skilled oncological surgeon and not just any surgeon.

I don't want to worry you. This is still a very uncommon type of cancer. You'd be very unlucky to have it. But ruling it out is very important. If it's caught early enough, the most likely treatment is surgery, and not radiotherapy or chemo.

I had challenges getting my GP to take me seriously due to complete lack of knowledge on the subject. If you can get referred to a breast clinic for any follow up required, they will be much more knowledagble. 

Again, there is a Facebook group called "ALCL in Women with Breast Implants". There are over 200 BIA ALCL diagnosed women in the group from all arund the world and a wealth of information to read through.  It's a great way to both get info and also to get support from women who have been through the same.

Happy to share my phone number in a personal message if you'd like to talk through it.

Carla xx

Hi again all and again thank you for your replies, it is very much appreciated. 
 

I have made a little progress today in that I spoke to the breast ward at the hospital and spoke to an amazing nurse who went and found one of the clinical team and had a chat with me. She went through my symptoms etc and had a look at my notes previously. The condition was mentioned on my notes as a concern but had been ruled out apprently as the fluid wasn't presenting as an issue.. ? (God knows) I explained that I was concerned and she advised me that they are accepting referrals now and that I have to go back through to my doctor. So I've done this and am waiting to hear back from them. 
 

She did say that the swelling did sound like it could be hormone related as it comes and goes around the same time each month like mastagia. She wasn't sure if that was a common trait in the condition though and if it fluctuated, she said she didn't know enough and it would rather be one of the specialists that would answer that. She asked me if it felt like it was like breast tissue in the other breast but I've never had any tissue there so that didn't help. :( 
 

I think for piece of mind I'll push for the referral and all the proper tests this time. Thankfully Leeds have a 2 week turnaround so it will be sooner rather than later although it's a very very nervous wait now. 
 

i would join one of the Facebook groups but there are only 3 people in the world that know about my implants so I don't really want to risk that being found out!  
 

As for explanat.. of course if required I would but I ideally I want to wait until my little one is a little older as I'm terrified of anything happened to me what would happen to him. Has anyone had it done? 

Explant isn't normally recommended as a preventive measure. When women are diagnosed, explant and an oncological capsulectomy is often the first line of treatment. I wouldn't worry about explant yet. It's far too early :-) The odds are in your side! 

My swelling/fluid was in just one breast and came and went for several months. Hormonal reasons seemed unlikely as it was just on one side.  
 

It's a shame you can't join the group on Facebook. I can send you some reading if you want? I could include the testing protocols so you can insist it's done right (if it wasn't last time). If your implants are indeed textured (any brand), CD30 testing (through an ultrasound guided fluid aspiration) would seem to be a good next step. Then possibly an MRI or PET scan so they can see what's going on inside. I'm not in any way medically qualified but I'm basing that on my own experience and from following other women through the same journey.

Keep us up to date XX