Please Help With Needed Surgery?

In 2007 I did what many women have done.... I got breast implants. FIRST BIG MISTAKE!!!! I never dreamed that 10 years later I could get cancer from them. For seven years I had absolutely no problems whatsoever, but in 2013 I started leaking "serous fluid" from the right side. (Which I now know is one of the #1 red flags for BIA ALCL) - Breast Implant Associated Large Cell Lymphoma. My plastic surgeon had no idea why this was occurring but after a negative mammogram and ultrasound, he performed surgery to cauterize the area it was leaking from. Six weeks later, the incision opened up and the leaking continued..... through the incision.  Unsure what to do - I waited another year, hoping it would resolve.  I had to pay cash for that surgery because my insurance said they do not cover any procedures that are related to breast implants. 

During the next 12 months, I had two breast infections that were successfully treated with antibiotics.  The  surgeon recommended removing the implant and associated scar tissue and letting my body heal.  I opted to take the more conservative approach and wait. SECOND BIG MISTAKE!!!!

Finances were already tight with Tim's layoff and long period of unemployment - almost 2 years.  This was the start of a long spiral of negative events and hardships that seem to still be never-ending.  

Shortly after losing our house on Maplewild, Tim  suffered a major heart attack, which again was a setback financially as well as emotionally.  To assist in our financial obligations, (which increased significantly after his heart attack), Tim withdrew money from his retirement account.  At that point we were focused on just trying to survive financially, and thankful that Tim was recovering from his heart attack and surgery.  I didn't seem to be in any real danger or pain - just annoyed that from time to time my incision would open up, drain, and heal back up again.  I felt that I could live with that if I had to.

I didn't see any urgency to having breast surgery..... especially one that would not be covered by insurance!!!! The third breast infection was more severe with high fever and pain.  At that  point the doctor again reiterated the need to have the implant removed for health reasons - so 18 months ago, under local anesthesia, I had the right implant removed. I did not have any surrounding scar tissue removed - just the implant (which was my choice).   THIRD BIG MISTAKE!!!

During the initial first few months following the implant removal I felt good, and was even pleasantly surprised when my right breast gained form and increased in size.......(I didn't know that it was slowly filling up with fluid again)....and I was only mildly concerned a year ago when I had a mammogram and the radiology technicians and the radiologist argued with me that I still had an implant on that side.  The radiologist at Franciscian said in all his 40 years of reading mammograms he has never seen fluid accumulate like this and mimic a breast implant.  Shortly after that, my incision opened up and started leaking fluid and blood.  This process still occurs with periods of healing in-between. 

My doctor was still baffled with my symptoms and recommended that I consult with other breast surgeons who may have seen these symptoms and have insight as to what this could possibly be.   This is when I first became aware of lymphoma caused by breast implants.  BIA ALCL - Breast Implant Associated Anaplastic Large Cell Lymphoma - which is a cancer caused by inflammation and an immune response to breast implants. 

I saw two breast cancer specialists.  Both specialists were very concerned about the fluid in my breast (which is close to 400cc) and were surprised that I was not sick from it, or have other organs affected and damaged by it..... (pressure on chest wall from fluid under tension/pressure, involvement of lymph nodes, kidney or liver failure due to toxins/poison from the fluid). They recommended urgent analysis of the fluid, followed by immediate surgery to remove all fluid, scar tissue and any suspicious looking tissue and have it analyzed by the pathologist to determine/diagnose or rule out the presence of  BIA ALCL, my long-term prognosis, and treatment plan which could include radiation and chemotherapy. I left the first surgeon's office feeling pretty emotionally upset, as well as with a quote for $9,500.00.  With no ability to pay for surgery I tossed the estimate in the back seat of my car.  I saw the second specialist a week later and told him an estimate was not necessary, although I still was provided an estimate for surgical costs -  ($12,500.00 this time) with the recommendation to get the other implant removed as well.   Again, with no possibility of affording surgery, I threw that estimate into the backseat of my car too.

I did, however,  have the fluid analyzed as recommended. This consisted of a 10cc syringe filled with greenish, murky, turbid fluid that looked like tadpoles should be swimming around in it - (and I still have at least 350cc still in my body - which is disturbing in itself to me).  The fluid was positive for a high level of protein and increased lymphocytes (suspicious for lymphoma they said), but I still felt fine.  That was 5 months ago. 

In early May, I started to feel slightly un-well.  It started with fatigue, night sweats (which I justified as being post menopausal), as well as intermittent fevers.  More recently I have had body aches, severe leg swelling which indicates fluid in my extremities and usually is associated with nausea, faintness, and pain in my legs and feet.   Recent blood work indicates I am dehydrated - with low sodium and potassium.  This responded initially to drinking Gatorade but more recently has required Intravenous fluids.  With my "feeling good days" becoming less frequent, I have also had more absences from work over the last few months - more than I have ever had.  I currently have no sick time available and in fact my last paycheck had 14 hours of unpaid time due to recent illness and time off work.  

I saw a breast cancer surgeon last week and flat out asked "Will this kill me?" And the answer was, "Without surgery and proper removal/diagnosis and treatment, it is quite possible you could succumb to this."  He also stated that if this is lymphoma, the more time that it is goes untreated, the less likely there will be a good prognosis for me. 

 So here I am today, writing this post, asking for help.  My family has helped financially over the last few years numerous times, and are unable to help any further financially.  We have no ability to even come close to being able to afford surgery and have no further resources. 

I have talked to my insurance company on multiple occasions trying to get coverage for this surgery and/or further diagnostic imaging/procedures and the answer is always the same... "Any surgery related to breast implants or complications from breast implants is not covered."  I have also applied for medical loans/personal loans, but have been denied.  

I have been resigned to the fact that I have no other alternative but  to wait and see what happens - and up until recenlty, I have felt pretty good.  But now that I am feeling a quick and significant decline in my health, and immune status - I'm scared.  Many of you know of my long history and constant battle with skin cancers over the last 20 years but 3 weeks ago I had 4 biopsies - all of which came back as skin cancer.  This in itself is a clue that my immune system is under stress. 

I don't want people to feel obligated to donate, but if you have the ability and want to donate, any amount is appreciated.  If not, please share my post so that other women can be informed of the dangers and possibility of Breast Implant Associated Anaplastic Large Cell Lymphoma.   

Thank you in advance for taking the time to read my post.  Linda Clark

I've often said that "It is unfortunate that the most powerful lessons in life are learned from the most painful mistakes we've made."

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Linda Clark 
Organizer
Seattle, WA
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