Shocked again: Good morning everyone... - Lung Cancer Support

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Shocked again

ynkefan08753 profile image
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Good morning everyone šŸ˜Š

I wanted to give a little update to whatā€™s been happening. A while back I posted a long post explaining all of the crazy symptoms I have been having over the last 18 or so months and that all of the specialists Iā€™ve seen have said itā€™s likely long term side effects from the immunotherapy. Unrelated to the cancer or trial meds...I had a pretty bad fall in 2017. I landed on my left side and ended up damaging my left breast implant, shoulder, elbow etc. I was consequently diagnosed with neurogenic thoracic outlet syndrome, ulnar nerve entrapment and a left breast capsule rupture. Not the implant itself...just the capsule of scar tissue around it that holds it in place. I was told the rupture would heal in a few months and the symptoms (pain, swelling) would subside. They never subsided so I kind of just learned to live with it and wear compression garments to control swelling and pain. I knew I would eventually just have the implant removed and that would be that. 3 months after the fall I started having headaches, continual low grade fevers, severe fatigue, blurry vision, thyroid nodules, I gained a ton of weight, heart palpitations, really bad chest and breast pain, weird rashes, night sweats etc. When I saw my doctor they chalked it up to the trial drug (which I hadnā€™t had in 2+ years. Iā€™ve been to the neurologist, endocrinologist, rheumatologist, vascular surgeon, eye surgeon ..the list goes on. I have a thyroid nodule biopsy today and a lacrimal gland biopsy in two weeks. I decided to do a little research of my own and what I found blew me away. Thereā€™s a breast implant ā€œphenomenon ā€œ for both saline and silicone implants that theyā€™ve dubbed Breast Implant Illness, or BII. The list of symptoms is unbelievable...40+ symptoms and I have every single one of them except for gallbladder issues. The article(s) went on to say that most women end up with a false diagnosis of Lupus, MS, and other autoimmune diseases that in reality...they do not have. By the time most women figure this out they are so ill they are in wheelchairs preparing to die. No joke. PREPARING TO DIE. As it turns out, either for no reason or by way of a trauma to the breast and implant, bacteria can seep in through the fill valve and cause black mold to form. This bacteria and mold will cause all of these symptoms that mimic these other diseases and itā€™s hard to diagnose because most of the lab tests donā€™t pick it up. When someone dies from this ā€œunknown diseaseā€ and has an autopsy done, theyā€™re finding totally black and moldy breast implants in their chests. The only cure for BII is having the implants removed and then having a long course of IV antibiotics and anti fungal medications. Most will recover but some donā€™t. Eventually the disease spreads throughout the body and the person dies. I was having a hard time accepting that all I was feeling was related to a drug I hadnā€™t had in years. I now believe that all of my symptoms are BII related and that it is imperative that I have these implants removed immediately. Iā€™m just so gobsmacked that not one of the doctors Iā€™ve seen has even considered this as an option and I think there needs to be more awareness about the dangers of breast implants whether they are silicone or saline. The type I have is saline with a textured shell and fill valve. As it turns out, thatā€™s the most dangerous kind. I now face an expensive surgery that likely wonā€™t be covered by my insurance and a hospital stay that may or may not be covered by insurance. Luckily (if you want to see it that way) I took matters into my own hands and decided to do research on my own. They say to never self diagnose using the internet but had I not, I would just continue to be plagued with a mysterious ā€œdiseaseā€ and would have continued to blame immunotherapy. Am I 100% sure this is the problem? No. But Iā€™m about 99% sure and thatā€™s enough for me to want these things out immediately. Originally my oncologist said that I had to wait until this coming January (5 year mark from NSCLC diagnosis) but Iā€™m not going to wait and I assume he will clear me for surgery because the longer I wait, if it is BII then Iā€™m risking permanent damage and or death. Please take note of this for anyone with breast implants. Have your implants checked on a yearly basis to check for leaks, or any changes in size or shape. If youā€™re experiencing any of the symptoms Iā€™ve noted (I only listed a few and there are more than 40) please donā€™t let anyone convince you that itā€™s nothing and all in your head. When a perfectly healthy person (aside from the cancer as that was resolved) is so ill that they are continually sick and nothing shows up on labs, and they canā€™t fogure out whatā€™s wrong, and you have implants...see a surgeon who specializes in implant explantation and have them removed. No amount of vanity is worth this torture..and it has been torture. When one breast is double the size of the other one and is so painful that you have to wear compression garments just to function...something is wrong. I knew they needed to come out but I was convinced that the swelling was because of the trauma. Two years?? What was I thinking. I guess I was thinking like the doctors and blaming it on immunotherapy was logical since the long term side effects arenā€™t well known yet.

Sorry to have gone on so long. I just wanted to get this out there for anyone suffering from the same symptoms. Had I known that mold and bacteria growth was even a possibility I would never have gotten these things 20+ years ago. The longer they are in the more likely there will be damage to them and eventually the implant will break open, spreading all that toxicity to the rest of my body.

Thanks for taking the time to read this and wish me luck! Iā€™d rather be boob less then dead šŸ˜

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ynkefan08753
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Denzie profile image
DenzieModeratorVolunteer

Kudos to you for tracking this down. Youā€™ve been through so much and deserve a break. This might finally be the break you deserve. I wouldnā€™t wait till next January either.

If the insurance company balks remind them how much it costs to manage illnesses related to this and tell her hen surgery will be a bargain.

My bff has implants. Do you have a link to the page you mentioned?

ynkefan08753 profile image
ynkefan08753 in reply to Denzie

For whatever reason I am unable to copy the link from the main article. If you go to google and type in Breast implant illness the ticking time bomb. The article will come up.

The website is collective evolution. Thatā€™s just one of 100 that I found. Thereā€™s a ton of Facebook groups regarding the same thing. All these women going undiagnosed with so many symptoms ...left to flounder. I called the surgeon this morning and have an appt for the 24th. Unfortunately sheā€™s away and thatā€™s the first available day. I canā€™t just pick any old surgeon because this requires someone who specializes in implant removal. Iā€™m here waiting to have what is going to turn out to be an unnecessary biopsy on my thyroid. 12 nodules now. Started with one then 3 then 6 then 9 and now 12. All in less than a year. Iā€™m at my limit. Add to that that someone in this waiting room reeks of cigarette smoke. Yuck. I canā€™t believe I spent all those years smelling Ike that. So gross. Sorry...couldnā€™t help myself.

I am so sorry that you are going through all of this. But kudos to you for doing your own research and not just accepting the doctors answers. I don't blame you for not waiting until January to have the implants removed.

On a side note: I agree with you on the smell of cigarette smoke, it makes breathing difficult, I cannot be around it. The sad thing is, they have no idea how bad they smell. I didn't realize how awful I smelled until I quit.

ynkefan08753 profile image
ynkefan08753 in reply to Feelingblessed2013

Thank you šŸ˜€

JeanE41 profile image
JeanE41

Thank you for posting this information. You may have saved someone's life by doing so. I hope your surgeries go well and that you make a smooth and fast recovery.

ynkefan08753 profile image
ynkefan08753 in reply to JeanE41

Thank you šŸ˜ŠšŸ˜ŠšŸ˜Š

ThePurplePlace profile image
ThePurplePlace

Wow!!!

Ncpoet profile image
Ncpoet

I think you have made a wise decision. Doctors donā€™t always know everything and since you have seen so many without finding an answer, you did the right thing. Researching narrows down possibilities. I have an autoimmune disease and at the time my symptoms began, most doctors did not know what it was or thought it was only dry eyes and dry mouth. Sjogrenā€™s Syndrome affects every organ in your body and produces a myriad of symptoms, the worst for me is daily pain and extreme fatigue. I had this way before my lung cancer. I finally found a rheumatologist who recognized what I had right off the bat. My prayers are with you as you begin the journey to reclaim your body. You have proved your strength by surviving lung cancer. Keep us posted on how you are doing.

Judy

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