Breast Implants possibly the cause of my Connective Tissue Disease!

[panda2]

Hi all,

I need to first thank Eekt (thank you! thank you!), who brought this to my attention by posting an article on this site about 4 months ago regarding the links between breast implants and autoimmune diseases. Since that time, there has been a flood of new information, not least of which is an immune system cancer -- (BIA-ALCL) Breast-Implant Associated Anaplastic Large Cell Lymphoma. An IMMUNE SYSTEM cancer!

Having already gone through breast cancer in 2012, bi-lateral mastectomy and reconstruction; and now having a disease of the immune system, I can tell you that all my hairs are standing.

Not 2 weeks ago a friend from Canada forwarded this article:

cbc.ca/news/canada/edmonton...

It refers to more and more women becoming sick due to their implants. And -- the hopeful part -- that many, after explant, are getting better! Some instantly! I searched for hours finding more and more info that supported this claim and disturbing articles and abstracts that said there were not enough statistics to show women's health more than a few years on, since the studies were not upheld. (!!) And what statistics there were, were gathered by the implant companies themselves. (!!) So immediately I checked my implant identity cards to discover that they were indeed made by the very company who made the implants in cancer question at present. (!!) They have been banned in France and are pending a ban in Canada right now. Horror!

I wrote to them and last week I received a long and thorough email back, taking me very seriously and creating a file. Then today, I managed to get through to my breast care cancer clinic. I was very nervous about that call, remembering how proud my surgeon was to be able to offer me breasts right after a mastectomy. And remembering what a special relationship I had with her through that horrible time. Yet here I was, not 7 years later, wanting to undo all her beautiful, caring work...

I told the nurse I had developed UCTD about 2 years ago. I was sure she knew about the recent implant drama. She did. I told her how my Rheumatologist said I was likely to be on immunosuppressants for the rest of my life, but that I was reading that some people, after explant, were actually getting better. And so I knew I needed to have them removed to give myself a chance.

I clenched my teeth and braced myself.

But there was no defence, no questioning, no take, just all give. She would move my Aug review up with my surgeon for as soon as she could. She could tell I had decided and was utterly understanding. When I hung up the phone I broke down and wept with the lasting and now present memories of the sheer support of those people. How desperately all of us in our various connective tissue and auto-immune diseases need that too.

I know this particular situation is only going to apply to a very very few of you out there, but if you are out there and are reading because you've had implants and now have a CTD/autoimmune disease, please feel free to respond and I'll happily share more articles and ways to report your case. Otherwise, thank you for reading and being here as such a wonderful group of people to report to after a particularly tough few days with my UCTD.

Panda x

[panda2]

She was very possibly right!

First the body has to accept the foreign object/s, which affects the immune system all by itself; and the actual break down of the implants -- which always happens, since they have a shelf life -- mean your body has to accept whatever foreign bodies are part of the implants themselves as they break down.

Probably many of you remember a scandal some years ago about industrial grade silicone found in French implants that were removed from the market. There are some whisperings out there that some of this industrial grade has crept back in. Whether true or not, something is happening. And saline has been linked to moulds leaching into the body. I have a combination of saline/silicone, so I'm @^**@ either way! : ) ; (

Something that really got to me was discovering the name of my implants are 'Permanent -- 1 Stage', which doctors (even breast doctors) have misconstrued to mean 'forever', when it actually means: as opposed to 'Temporary -- 2 Stage' implants. Some women do not have enough skin to cover implants and so need tissue expanders first. And then a second operation to put in the "permanent" implant. "Permanent" -- how cleverly named by the big companies! I had 2 doctors tell me I would possibly never need them removed, when my surgeon had said at the time of reconstruction a max of 15 years likely. I was starting to doubt my questions until my latest research, since I don't see that surgeon anymore when going in for routine checks. And also, you don't usually have implants removed until something goes wrong, which in my humble opinion, is way too late.

Thanks Louise.

P x

[whisperit]

Wow panda, what a hard journey you are having to make. It's a great testament to your grit and determination that you have persisted so far. Perhaps, like me, you feel that being able to make decisions about my life is absolutely fundamental to well-being. With it, I can put up with a great deal; without it, life is hardly worth living at all. Looking forward to hearing how your story unfolds and wishing you the best x

[panda2 in reply to whisperit]

I feel exactly like you do! I definitely need to make the decisions about my well-being and I realise after years of being in healthcare, as a patient (which I feel ashamed about, but would argue anyone's corner who said that to me), that the medics actually want you to make the decisions too. I can also put up with a whole lot if I'm trusting a process and a team who make me part of the decision-making.

Something right now feels like my cancer experience all over again. Despite chemo being successful and a lumpectomy being the only surgery I should have needed, I felt instinctively that I needed to pursue the genetic testing for BRCA1 even though the consultants said we wouldn't know in time for surgery and the geneticists said I only had a 15% of being positive so it wasn't required. Yet it turned out I was BRCA1 after all and we found out in time for my surgery, which was now the bi-lateral mastectomy. And lo and behold the pathology report showed a glimmer of new cancer in my non-cancer breast. Had I not done the mastectomies, I would have had cancer all over again within the same year. I don't know if I could have survived that.

But it also reverberated even further since my sister had also gone through breast cancer only months before me and with this news she had to go back for bi-lateral mastectomy as well. And this doesn't even touch the impact on the greater family.

I guess right now I feel like there are potential answers about auto-immunity out there that haven't been trialled yet. And, like you trialling the B12 injections when your bloods say you're fine, there could be surprise answers for more than just us.

With hope! P x

[PMRpro in reply to panda2]

I'd have said a 1 in 6 chance of something being positive was reasonably high ...

[panda2 in reply to PMRpro]

You're actually VERY right! When you put it that way... 15% vs 1 in 6....

Well, I hope the geneticists used my result as a reason to be less discouraging to others in my position. They were supposed to tell me in person for any positive result, but we had no time (days before my surgery), so I got a phone call where the woman sounded so utterly shocked I felt like I had to worry about her feelings in the moment. x

[Lupiknits]

That’s incredible news panda2. I would love to know how all this goes. Thank you so much for letting us know x

[panda2 in reply to Lupiknits]

Thanks for your enthusiastic interest Lupi! I really appreciate it and I will definitely post as things unfold. Barring my letter for my surgeon consultation arriving first (which is doubtful), I've got a Rheumatology appointment in 3 weeks. And that is when I intend to ask if the implant issue is starting to crop up in her patient list and if there have been any results yet. And if not, I will volunteer to be first.

It has occurred to me there will be issues about medication and surgery and I know it's not wise to have surgery if the disease isn't stabilised and so she might advise against, but I'll cross that bridge when I get to it. At the moment it's full steam ahead. : )

Thanks again. Px

[PMRpro]

How strange - I've been reading about this today, actually because of the mesh scandal! Didn't see it here before.

All the very best xxxx

[panda2 in reply to PMRpro]

Synchronicity!

Ooo...the mesh thing is an awful mess!! And the implant thing is starting to sprout legs now too.

Here's a Guardian article from a few months ago to add to the pot:

theguardian.com/society/201...

Thanks for the best wishes pro. I really appreciate them.

Px

[eekt in reply to PMRpro]

Here's the link to the study:

medicalxpress.com/news/2018...

xxx

[Lupiknits in reply to eekt]

Thanks for this eekt. I have a sister in law in the States who had some kind of breast reconstruction last year following cancer ( the surgeon was given short shrift when he offered to “perk up” the unaffected breast) No AI conditions in her side of the family as far as I know but, if I’m reading it correctly, a history of allergies might contradict implants. She has a wide ranging and quite severe ones.

[eekt in reply to Lupiknits]

Here's hoping she has no ill-effects xxx

[panda2 in reply to Lupiknits]

Hi again, Lupi.

I had NO auto-immune conditions and NO allergies all through my life. I suspect allergies should make them more wary, and I am reading some angry posts from affected Americans who don't know why, if they know this, they were not tested for this first. But I had no genetic predisposition and got it anyway.

To note, my sister, who is in Canada, was treated with chemo and bi-lateraly mastectomy like I was and at the same time virtually, but no reconstruction or implants since they are not offered immediately in Canada. And she does NOT have a connective tissue disease, while I do...

Px

[Flueby]

Hi Panda. Thank u so much for sharing this. My journey sound a almost identical and I started looking into this possibility a while ago. I had a pretty existing autoimmune disease b4 the cancer and was 1st unwell with lupus type symptoms in the year after implant reconstruction. Many possible diagnosis were offered Inc rejection of implants!! I also had a bilateral mesh repair of hernias and am wondering about this? Any information you can share would b very much appreciated please so I can make an informed decision. I have an appt coming up with the breast care team so would be good 2 have an informed discussionwith them then. Thanku and so hoping u feel better after all u have been thru. Take care of yourself xx

[panda2 in reply to Flueby]

Oh Flueby, not you too...

It is most distressing to find out this information at first, but when it started clicking with what was going on for me, it started to become empowering. I only hope you will feel the same.

Do you have your implant identity cards? You will find the company name, your actual implant will be in code, which can then be located in the company's catalogue and then we can look for info out there on your particular ones.

I found these two articles particularly helpful:

center4research.org/breast-...

breastimplantinfo.org/autoi...

Definitely, definitely speak to your breast care team. They will know about all this by now. My nurse said if we knew then what we know now... So, they are definitely in the know.

When you identify your implants and if you want help to dig deeper, I've got contact info. Please just come back here or private message me and I'll be happy to put our head's together to get you to as informed a place as possible.

Good luck!

Panda x

[panda2 in reply to Flueby]

Oh, and sorry Flueby, I don't know about the mesh repair specifically except there are some quite bad stories coming out in the news.

I've gone back to read your previous posts and I was struck by two things. First, that you describe your parathesias exactly as I do. I told my Neurologist I was twinkling like a Christmas tree. He starred blankly at me and said he didn't understand. Noting you're in neuro, I thought you might find that amusing. : )

Second, I'm really sorry you've had a cancer journey too, only to find yourself back at it with Lupus. That is the pits. I'm wondering what the result of your raised lymph nodes biopsy was? That would have unhinged me too, particularly with this implant lymphoma scare. I know they are targeting the textured silicone ones, but there is evidence that silicone implants break down before saline or saline/silicone ones, so I personally feel like a sitting duck considering the cases are on the rise and there were some pretty dodgy reporting ethics. I'm wondering once the smooth implants have begun to reach their lifespans, are the (BIA-ALCL) Breast-Implant Associated Anaplastic Large Cell Lymphomas going to increase again? After cancer myself, I just don't want to take any further chances, let alone that this seems like the first sign of hope that the connective tissue disease could become less symptomatic if they are removed. My breast care nurse was totally on board with this for me. I hope yours is able to hear your concerns. Please let us know how it goes. I was worried the nurse would defend what they had encouraged at the time, but they didn't. They were terrific.

All the very best! P x

[Flueby in reply to panda2]

U r an absolute star...thank u so much ...I'm going to look into this again and will ask about my implant identity etc...I will come back to u and c if we can help each other xx

[panda2 in reply to Flueby]

That sounds like a superb plan! xx

[eekt]

What a distressing situation to be in after all you've been through, I'm very glad you have the backing and understanding of your team...keep posting and let us know how you go, the number of others similarly affected might be small, but if the forum can help just one person, that's enough!!! Very pleased the article was useful...please do share any more info you find

Hoping the explant is a complete success, with full recovery from the CTD. Be well! xxx

[panda2 in reply to eekt]

Well, I have you to thank all the way around, eekt!!! Bless you for putting it out there at the time you did. It was able to percolate for a couple of months and then search a little deeper and take time to trial an increase in medication (which has disappointingly not worked). Then as more things came to light, I was able to wrap my head around it. Explant just became more and more clear-cut for me.

My surgery will be a bit complicated since my muscles have been moved from the chest wall over top of my implants and so they are enmeshed with the implant cavity that was created. So there will be all that muscle divining.... But I'm up for it if I've got a chance to make a difference to my health.

Thank you so much again, eekt.

Panda x

[eekt in reply to panda2]

Well, you've made my day, being able to help! All the very best Panda! xxx

[Nmartinez15 in reply to panda2]

Hi, I am getting my implants remove and replace on October. I certainly believe in your case but I am not sure if that's my case of my back pain and bra line. The plastic surgeon put implants way too big for my frame chest. They put 650 cc and 2 second doctor said that's too big for me and its stretching my muscles to the point that's cause alot pain. She thinks I should only have 300cc or max 325 cc and I should feel better after. However i told my husband if my pain doesn't go away i will implants forever and stay flat. I have friend that have mentor brand for 20 years and she never experienced any pain. The doctor is going to remove natrelle from Allergan and replace with mentor brand. Did u remove the implants? Did you got better? What size did you have?

[panda2 in reply to Nmartinez15]

Hello Nmartinez15,

I will post my update soon. I've not had the implants out. Lots of hoops to jump through. I'm now in the process of getting my surgery date set.

I took a look at your history and gosh... I'm so very sorry you've been through so much at such a young age. And are also carrying future concerns with your health. I think it's amazing that you are pursuing what you can to have less pain.

I also have Natrelle Allergan's and these are the ones that are now recalled worldwide for causing a rare Lymphoma. SO pleased to hear that you have a surgery date in October! And I hope this relieves the pains you are experiencing. It is awful to have breasts too big for your frame. I had this my whole breast-y life until cancer. Went from 34DD to a nice 34B. But I do have pain with my 34B implants because of the muscle stretch overtop and I have shooting pains that might be part of the nerve involvement with my Connective Tissue Disease. I can't imagine carrying around DD implants with reconstruction! Your poor chest muscles.

We might be going through surgery around the same time. Would be nice to hear from you and how you're getting along. Meantime I wish you all the very best through this complex and difficult time.

Panda x

[Nmartinez15 in reply to panda2]

Yes, please let me know how you feel after the surgery. How many cc you have now with 34B? I honestly didnt want any implants, but I am not ready yet to be flat. I wanted DIEP, but I am not candidate bc my weight is not enough fat in my body. However if I start getting the same pain than now I will remove completely. I just going to give one shot more.

[panda2 in reply to Nmartinez15]

I'm sorry, I don't know the cc count. If I find out I'll let you know. Not really sure how to find that out though.

I'm the same as you -- not enough body weight for DIEP. So I've decided to go flat. I just don't want any more surgery or complications. But I've also had the transition from DD to B over the past 7 years. It would be a big change from DD to flat. It sure is a lot to think about when you already have an awful lot to think about.

P x