RE: Possible Breast Implant associated CTD -- Surgeon appt already!

[panda2]

2 days after ringing the breast care centre to ask for a consultation with my breast surgeon in order to have the questionable implants removed (which -- if you haven't read my last post -- it's being discovered might be behind my UCTD), I got an appointment letter!

2 days! And even better, my surgeon will see me 1 week today! This could be a way faster journey than I imagined only 2 days ago. I hope I'm ready for this -- to have my breasts cut off. Again... (I am. Just had a moment there.) : )

Panda x

[eekt]

That will bring huge relief, daunting though it is...keep posting, it's going to be a stressy week xxx

[panda2 in reply to eekt]

Too right eekt!

I always have a little smile to myself when I see/write your name. I love it. : ) xx

[eekt in reply to panda2]

I had an EEK moment when I first found this forum! xxx

[PMRpro in reply to eekt]

And then you sat down and had a nice celebratory cup of tea ...

[panda2]

So.. I've just had a really interesting chat with KayHimm, who is happy for me to share this. To sum up, she asked some very pertinent questions about timing and demographics regarding implant surgery and my age.

Implants (age 43) -- 2012.

First symptoms 4 yrs later -- 2016.

UCTD Diagnosis -- 2018

I believed there could arguably be earlier symptoms, but chemo and ovarian surgery confirmed early menopause by 2013, so symptoms could be confused. Which, incidentally, was interesting in itself since many of the so-called 'studies' of women after implants (for the ones in question now) wrapped up at around 3 years on and my CTD started at 4 years. So no one is watching a LOT of women out there...

Kay made an excellent point that my CTD really could point to implants since most with CTDs present considerably earlier in life when hormones (particularly female ones) are stronger. And I agree, especially since I was actually post-menopausal! I had a menopause specialist by then who was treating me with HRT so I could just cover bone and brain health after the chemo wiped out my reproductive system plus the ovaries out. She said I had the hormones of a 75 year old and my GP seconded that by being so frightened by the look of my cervix (that of a 75 year old when I was not 45) that she sent me for second opinion and then both doctors sent me for a colposcopy, which just said 'POST MENOPAUSE'. So....

This also made me wonder something else. Aside from the fact that implants or foreign bodies of any kind activate the immune system, what if it's really not hormones that are the trigger (or the sole trigger) after all and that's why they can't find a cure? Especially if you add that men also get this, like whipserit, who couldn't possibly have a high level of oestrogen. And there have been posts from women in their 70s here saying they had just developed CTDs. Could they be looking just askance of where the problem could be?

I don't actually know what I'm talking about. But I'm thinking aloud here and worrying about us all in this pool of unknown, that we seem to know a whole lot more from the inside than anyone from the outside.

Panda x

[Flueby]

Oh my love . .I can recall how it was ...I am sure u r very frightened and anxious at the same time as wanting this done 2 make u well....same as b4!?.. at this point u r only going to discuss it...this does not mean u r booked in 2 have it done....perhaps have a list of questions ready ...take a trusted person with u as u may b too anxious to remember everything. .probably again as u did before!!...listen to what he says...pros...cons...likelihood this is the cause and more importantly if he feels it will resolve the problem. ..may it create others?....only then can u make your informed decision....and just like b4...u could possibly decide now is not the time...and shelve it until it does feel right. I know that feeling of panic coupled with optimism...wish u didn't have to go thru it again....but we r all made of strong stuff to manage as we do...u r in my thoughts xx

[panda2 in reply to Flueby]

Thank you for this lovely, caring reply. I can't even say how much I appreciate it, especially when you know every inch of this experience. I think I kind of forgot about feeling frightened and anxious since I had the bit between my teeth this last few days. But a little of that PTSD, remembering the whole experience, has crept in and you are absolutely right that in a way it does feel like that time. Once you know something is potentially that wrong in your body and there is this flash that you might be able to do something about it, you just want it gone -- now. I am noting a manic energy, just like the weeks before chemo, when I felt I simply MUST get everything done that I possibly could and as fast as I possibly could. I could do with checking that spiralling energy...!

The breast care nurse said there would be a couple consultations, so I'm aware it's a process. Also, since my surgeon is onco, her cancer patients will always take precedence so it could be a wait or I could be cancelled a few times due to their emergencies. I don't think I'll change my mind though, or delay if my life situation can help it. I've been quietly mulling this over since November, so though it feels sudden because it's now a reality, it also doesn't. I was intending to explant anyway and speak to my surgeon about it in August. Though that was to be a few years ahead in my mind.

You're right to mention complications. I've been thinking about those too in particular matched to my life situation (where I'm a carer and am very much needed, but my husband is well enough right now and so that weighs in on the urgency for me). I will be so grateful to open the conversation with the surgeon and really hear her. She will have had experience of this by now. That's a good reminder to listen closely.

Panic and optimism, anxiety and strength. That probably is what we're all made of here, isn't it...

Thanks again for such an understanding reply. How are you feeling about it all from your end?

Panda x

[Flueby]

Sounds like u r processing it all now...takes time...big decision. I am looking at any info I can find and will speak to the team I am with as well...so will keep in touch...strength in numbers and shared experience's xx

[panda2]

Absolutely! I'll be so interested in how your conversations go.

Here's some latest stats on Breast implant illness in the US (granted this is from a law firm site, but doesn't make it less valid in my eyes):

"Presently, in 2019, there are over 80,000 women in breast implant illness Facebook support groups. Similar to the Dow times, the manufacturers have again pushed a campaign marketing the safety and inertness of implants rather than disclosing the truth of lack of real statistics and follow ups, the adjuvant immunologic effects of silicone, and the numerous heavy metals and chemicals used in manufacturing. As of 2019, the FDA has finally recognized breast implant illness as risk of breast implants. Awareness efforts have been increasing. However, there is still a public health crisis occurring as the medical community at large has failed to help women identify breast implants as playing a role in their symptoms and has led to many misdiagnoses, unnecessary medications and treatments, and body parts being removed (thyroid, gall bladder, uterus, etc.). History is repeating itself and the manufacturers need to be held accountable for the lack of informed consent and toxicity caused by saline and silicone breast implants."

All the best to you. Let us know how you go and I'll be sure to report after Friday's appointment.

P x