Health concerns of Allergan Textured implants
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Okay, one more post.
Angelfaith, yes I am in Canada, but the participants on this site come from all over the world. Is this a U.S. breast cancer patients only discussion? You may not be aware that many more women in countries other than the U.S. have these implants than women in the U.S.. Interestingly, the FDA approved these implants many years after pretty much every other country in the world. In any case, with regard to the U.S., the current FDA stance on these implants is consistent with Canada and the rest of the world. The FDA got there a couple of months later, but they got to the same place.
Yes, we need to be tolerant of different views. Does that include people being tolerant of mine? Honestly, it doesn't much feel that way around here, which is why I am exiting (exceptions for MinusTwo and Scrafgal, thank you!).
Lisey, I am in no way minimizing your history. I am truly sorry that you had so much pain and I am glad you found a solution that works for you. I think it's great that you are a proponent for going flat. What I wonder about is why you so often have to come at that from the standpoint of putting down reconstruction. And what I am questioning is how your 1.5 weeks with an expander gives you the experience to join in all these discussions about implant reconstruction, and why you believe that your negative experience with the expander would have translated into an equally horrible experience with implants. For all you know, you might have loved implant reconstruction. After the expander did it's job (very painfully, unfortunately, in your case), you might have found the implants to be very comfortable. Many women do. Since you've never had an implant, you have no experience to speak about.
Women who have problems with their implants should speak out. However the fact that some women have problems with their implants does not invalidate the experience of many others who are happy with implant reconstruction. I hope everyone here remembers that, as advice is offered to women who come here wondering what to do, or not do, about with their Allergan implants and the 0.02% risk of BIA-ALCL
Bye!
Edited for typos only.
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Just completed my profile. Thank you for your response. I will be checking in here frequently and appreciate everyone's response.
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I just re-read my PS informed-consent etc and there isn't anything that refers to lifetime coverage. I'm guessing I need to check with my insurance? Where can I find the policy you are referring to from Clinton administration?
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Beesie - Thank you. I'm completely in agreement, and always appreciate your fact-based, level headed and supportive feedback on this site.
Jenene:. See the following link, from this site:. https://www.breastcancer.org/treatment/surgery/reconstruction/paying-for
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Beesie - thank you again.
Lisey: there is a lot of pain involved with breast cancer. Whether you have ANY kind of reconstruction or not - you WILL have pain. If you are lucky you won't get these items after the fact:
1) you are at risk of lymphadema. As many of you know this causes constant medical issues and daily trials & pain. It can develop even up to 20 years after surgery. Thank you Cancer for giving me this.
2) you are at risk of CIPN - chemically induced peripheral neuropathy. Bring on the pain folks, here it is with no solutions in site. I am one of the lucky ones who only has completely dead feet, so my problems are with walking & balancing & falling - thus breaking bones. And the neuropathy in my fingers causes issues with 'swiping, so I can't even use a smart phone w/o a stylus or swipe in to get a parking lot ticket.. Oh and I can't feel a baby's fine skin anymore.
3) you are at risk from radiation damage to your muscles & nerves. Yes I have pain every day. If I don't stretch every single day, the scar tissue starts to shrink up and pain becomes worse. I don't rate it on a scale of 1-10, just try to live with it.
So PLEASE don't try to tell anyone that pain is caused only by implants or that flat is the final answer. It may be for some of you and that's wonderful, but I doubt even a majority (no I don't want to start pulling stats) And certainly the majority of pain we all feel & try to ignore every single day is NOT caused by textured implants or BIA-ALCL. Yes, there are real problems to be solved and corrected with these implants - but let's not ignore, write off or minimize all the other pains that most of us who have been through breast cancer deal with every day.
Yes, it is your right to choose what you want, but don't try to convince everyone else that you are in possession of the RIGHT way or the ONLY way. We are all still thankfully different and should respect each other's choices - not set up an opposition & yell at those who are reading & heeding scientific research & statistics.
I'm with Beesie. I'm going to attempt to stay away from this thread because there really is 'fear mongering', and there are enough problems with breast cancer without it.
Ladies - do your homework and make a decision that fits your risk tolerance and will work for you. But don't let yourself be 'rail-roaded' either way.
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One last thought. I don't believe in lying. My parents raised me not to lie, cheat, steal, etc. Just because maybe the other guy did lie or cheat or murder, we need to be better than that. I am a forceful person and can pretty much get whatever I want, but I don't do it by lying.
If you had breast cancer, you have the right to have your implants removed or exchanged without lying. Let's try to remember to keep some sort of moral compass in our lives.
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MinusTwo, your post made me think of that Helen Keller (?) quote:
"I cried because I had no shoes until I met a man who had no feet"
I am at MD Anderson every week, visiting cancer patients in the hospital. I have seen and heard about unthinkable things...not to mention unthinkable cancers. I have been humbled by the power of these patients to still have such pleasant spirits as they interact with me.
To be honest, I logged on earlier and read all of the many postings since yesterday and was saddened...because there is sincere passion and caring for others expressed in all of the posts...a deep desire to be heard and respected...a desire not just to defend one's choice but also to inform others about choices and empower them to make the best choices possible for themselves, as an individual. Frankly, I've learned a lot from the different perspectives but the emotional investment made has been a lot. If this is the only way that we can have a diversity of opinions, I now see why, in the general public discourse, people just retreat to hang out with like-minded individuals. It is a sad state of affairs, I think.
My first inclination was to try to "keep the band together," so to speak. However, I am starting to feel like I just need a break from this thread or from the forum. The academic year is beginning and I will have less time, anyway. I am going on a final summer vacation to Miami then it's back to teaching. I actually had my final surgery and now I just made the switch to Arimidex. So, maybe it's time for me to disengage a bit. I've been wondering this for a while. I've gotten such a blessing through this forum, overall. Yet, maybe it is just time for me to move on. I will think more about this...Maybe there is a thread about this topic: When does it become unhealthy to remain on a support forum, after one is done with treatment? Just a thought...
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For reliable, unbiased information and support, I highly recommend the Facebook group ALCL in Women with Breast Implants BIA-ALCL and the webpage BiaALCL.com. The admins are women who have been diagnosed with alcl and are highly dedicated to provide accurate and up to date information on this disease.
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Hi all,
I too have textured implants with possible symptoms. Since somebody here reported fullness, I have that too but chalked it up due to being off Femara for over a month. My main symptoms are severe itching 'inside' and stabbing pains. Had the itch for a long time but more frequent and painful and pains as well on both sides, thinking it's the weight/muscle/whatever....Now not sure what to do. I do not want them (410 textured) anymore, that much I know. Nice to see longtimers here too .
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Calico, what you describe sounds like a textbook definition of Post Mastectomy Pain Syndrome, which affects 20%-30% of women who have had a MX, and can happen whether one has reconstruction or goes flat (or even after a lumpectomy). I've fortunately never had stabbing pains but I've had internal itching since my MX surgery almost 14 years ago. Just guessing here, but I'd think that surgery might affect the nerves and change (increase or decrease) the symptoms, but since this is neurological, I doubt that surgery would eliminate the symptoms.
That said, if you want to replace or remove your implants, have you talked to a PS? Given the age of your implants and the issue of BIA-ALCL, I can't see any PS refusing.
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Calico,
I had my 410s explanted in April due to pain and swelling that would come and go in one spot above my affected breast. I had only slight itching. For many years I thought it was post mastectomy pain. But since getting them removed, the pain and swelling in that particular area has disappeared. Severe itching has been reported by diagnosed women as one of the symptoms of BiaALCL, but that does not mean that you have it, of course. You should certainly see your PS to discuss your concerns. The website BIA-ALCL has a wealth of resources. It's always good to inform yourself as best you can before your consult. The recommendation is not to rush to explant if you are not having symptoms. If someone is having symptoms, it would be in her best interest to be evaluated and or tested before explanting. I can certainly understand your concern, and personally I do not regret getting them removed.
Best of luck to you!
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Beesie and BC101,
Thank you both for commenting.
Beesie, I am glad you offer me comfort with your explanation. I'm hoping that that is all. I think I want them removed though....scared to death of two things, flying and anesthesia ;-) Have not talked to a PS, just got my referral but will change since the PS they chose is 84 years old.
BC101,
Thank you, my pain seems to be localized more so than before on the bc side but still hopefull that because of the low risk that I am not one of them. Did you chose different implants?
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calico - no I did not re-implant. I had many symptoms of Bii so I chose not to. I feel so much better!
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I was told the same thing... by law, insurance has to cover you for life. I had my MX and lift in 2014. I have "side boob" on my MX side and have been unhappy for a while, and thought about having revisions made (smaller implants). So when I received the letter, it was just the push I needed. I have a consult scheduled in a couple of weeks. The BC specialist at the PS's office told me that Allergan will pay for the implant if you test negative, and if you test positive, Allergan will pay for the implant and the surgery. We'll see.
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bc101
Glad you found a solution and all is well.
Claire,
Who did sent you a letter? Your PS?
I heard it in the news and after calling my PS' office, they said he retired two weeks ago (basically a couple of weeks after this came out
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Hi, Calico,
The letter was from Allergan. If women were posted about this earlier in the year, why didn't I know about it then? Praying my test is negative.
Claire
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did anyone on here have PRE-PECTORAL(on top up the muscle/under skin only, not under the muscle) textured highly cohesive gel anatomics changed to smooth round?
I'm asking because pre-pectorals are very visible on lean people since they are just under the skin. On mine you can see the entire edges (top and sides) and some ripples. I imagine the smooth rounds would look worse than my current implants since the rounds look awful just holding them up in the position they'd be when sitting or standing upright. No, I can't fat graft to conceal the edges or ripples.
Thanks in advance to anyone who specifically switched prepectorals implants and can comment. - xo
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i’m not your desired demographic...but...I previously had sub pec Allergan 410’s and they were horribly rippled. Just terrible. When I had those switched to smooth round prepectorals, the rippling disappeared. Not a single ripple anywhere.
I will add that I had fat grafting to increase the upper pole fullness. Also, I went with a large implant with extra projection and extra cohesive silicone (Inspira SCX).
I would suggest visiting a few different surgeons. A combination of a new implant with maybe some nips and tucks of the skin might help. Alloderm might help a lot. I’ve also heard of a new “fake fat” that is being used to soften edges, etc.
Good luck. Hopefully someone more helpful will chime in.
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Does anyone here know what our rights are regarding insurance payment for swapping out? I was told he takes them out but puts nothing in.
It was also mentioned to me today that only if you have a seroma, that would be a sign of possible lymphoma...and then only a sample of the capsule would be taken not the whole en bloc capsule. That's sort of like doing a mastectomy and only testing the left or right....gooleee....somebody please chime in. The doc was in his 80ies and did not offer any other surgery either (military hospital).
I'm going for second opinion.
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Calico,
I'm going in to swap out to smooth implants until I can do a Diep. My insurance is covering them both. From my understanding that Ins is supposed to cover you for any surgeries after for life. And it was up to you what you wanted to do after. It's supposed to be covered. My doctor(breast cancer survivor too) is going to take the whole bloc capsule as well as the implants. I think it depends on your insurance and the PS performing it. You should get a second opinion. I consulted 2 PS before I decided.
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Angelfaith,
Thank you for your reply. That helps a lot.
Still reading up on how to dx this thing for sure. I thought too the entire capsule would be checked by pathology. Good for you that you found a good doc. Best wishes for your diep.
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Calico - seromas are not the only symptom of BiaALCL. There are many different presentations including itching, rash, and other symptoms. It's my understanding that any fluid, swollen lymph nodes, or masses should be tested before explanting. BOTH capsules and implants should be removed via en bloc capsulectomy and all 4 quadrants of the capsules should be tested and stained for CD30. WHen I had my explant, the pathologist only wanted to test one side and not the other!! I had to push for testing and they finally relented. Unfortunately, most doctors are not up on this disease or how to proceed with proper testing. I highly recommend the website biaalcl.com for more information. Another really great resource is their ALCL Facebook group. It's so important to educate yourself before consulting with a PS. I would 'interview' as many plastic surgeons as you can in order to find a knowledgeable, supportive doc who will have your best interests at heart.
Good luck!!
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Andraxo - I am your demographic. I may not be quite as lean as you, but I'm 5'4" and about a size 4-6.
I had shaped, textured highly cohesive gel implants (Sientra) when I had my nipple-sparing double mastectomy with direct to implant reconstruction a couple of years ago. I too had significant rippling on one side, and an air bubble that seemed to be growing which was causing discomfort. So my surgeon switched me to smooth round implants (also Sientra, highly cohesive gel) and did a small amount of fat grafting at the same time, about a month ago. I am very happy with my results.
Does your surgeon offer computer imaging so that you could get a sense what your results might look like? One of the patients on my surgeon's website is quite slender and had reconstruction with smooth round silicone gel implants, which I think look great - scroll about halfway down this page: https://www.annepeledmd.com/gallery/breast-cancer-surgery/post-mastectomy-reconstruction.html
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VegGal - Can you advise more on this "fake fat"? I tried to google it but nothing came up. I'm explanting my Allergan 410's in Nov and I'm now thinking of not getting new implants. Not enough for Diep or a whole lot of fat on me. This fake fat may be the fat I've been dreaming of to recreate my breasts. Any insight you can share would be great!!
Thanks
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Thank you VegGal!!
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kjtm, I have been reading all the posts here, over and over. I have the Allergan 410’s. I am 4 1/2 years out. Yes, they are very hard and static and cold. I have other health issues that involve a compromised immune system. I have an appointment with my PS on October 24. I am involved with a women’s cancer support group at my church. They all say they need to come out. There is a 1:3,000 chance with Allergan versus 1:30,000 with other textured brands! That is inexcusable! One victim is one too many! I can’t believe that a doctor would put a device that might create a rare cancer into a woman that has cancer. Appalling!
I have 6 weeks to chew on this. Robin
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Recall designated Class 1, the most serious recall on September 12. specifically Allegran Natrelle Biocell textured implants. When recall announced July it was Class 2.
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The above recall states the manufacturing dates of July 25th, 2014 to July 24th, 2019. Mine were done 2009 (Allergan 410). Does this mean the recall doesn't affect anyone before 2014
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Interesting. Mine were done September 13, 2011 - 8 years ago.
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