Lisa (BII after mastectomy)

Summer 2013 the kids had finished up at school. Fun trips were on the agenda let the good times roll!

At 36 with 3 kids, 16, 5 & a 1 year old. I noticed a lump, and my GP found a second lump. I was fast tracked to the Breast Screening Unit, examined, mammogramed, biopsied, and results within hours.

I never thought it would be me.
there it was CANCER my own mortality.
I’m young, I don’t have BRACA1 or BRACA 2, yet its happened to me.
When doing things with my children I was consumed wondering will this be the last time I do this with them?

I had Stage 3 HER2 positve Invasive Ductal Carcinoma, a particularly aggressive type which meant I needed 6 months chemo followed by 18 Herceptin in 3 week cycles over a year. Yet before that started I needed to have a left mastectomy and lymphnode clearance on my left side.
I did not even give it a second thought I wanted the cancer out!!!

Well life went it from normal to,
appointments, scans, results appointments, surgeons appointments, oncologist appointments, breast care nurse appointments, Macmillan, chemo nurses, phlebotomists, prosthesis fittings, bra fittings, wig fittings, district nurses, and look good feel good classes on how to draw on the eyebrows when they would fall out.
They all had their pearls of wisdom on how to cope,
but all I want to do is see my 3 children grow.

I always wanted reconstruction so when treatments finished I started training and eating clean to rebuild my strength and get well.
In spring 2015 I had reconstruction using implants which I now know were Allergan textured naturelle silicon implants. I had a prophylactic right mastectomy to reduce my risk as I had higher rate of return with HER2 positve type cancer. I choose implants as my surgeon told me they were safe , “the safest”, unlike the ” nasty PIP implants” and they would last 15 years.
I was also that using my own tummy tissue for reconstruction was not an option as I had had 2 c sections. I trusted him implicatively he was a cancer reconstructive surgeon, he sees what cancer does to us physically and mentally daily.
I was never gave any implant product leaflet prior to deciding or after I had decided, after I was implanted or told what brand, I trusted my surgeon.
Both breasts were reconstructed at the one surgery and I would wake up with better odds and back to myself in weeks.

Within weeks I had severe back pain with tingling in my left leg. I was told by my surgeon -we can be rough when removing you from one trolley to another in surgery. In the months that followed the chronic back pain got worse. I had an MRI, indicating bulging discs deterioration and rheumatoid arthritis.
Well at least it is not cancer it thought!

At this time acne started on my back, something I never had. Sinusitis, frequent urination and fatigue plagued me, always being told its side effects of chemo.
It is not cancer I thought!

Then headaches started and thirst that wouldn’t go away, no matter what tablets I took or how much fluids I drank. Hours turned to days, turning into weeks they persisted. A brain scan was ordered I had myself convinced it was cancer mets.
The scans came back clear, was told it was anxiety causing catch 22 situation inducing the stress cluster headaches.
At least it is not cancer I thought!

Consistantly over the following 3 years I had the implants I reported the thirst, fatigue, tinnitus, constant runny nose, fatigue, pain in breasts, pain in arm pit, brain fog, confusion, anxiety, blurred vision, gut problems, IBS, mouth burning, chemical taste on my tongue, aches and joint pains, sweats/ fevers, depression, burning rash on lower legs , acne on back, tingling in my hands and feet,, sensitivity to sound, heart racing, mood swings, dizziness, swollen nodes and was brushed off each and every time, because my cancer scans were clear it is health anxiety.

In comes 2018 when everything accelerated. In spring a sudden onset of food allergies began. Sudden sweats, fevers, chills, heart racing, coating on my tongue and a horrid chemical burning in my mouth, all brushed off as unexplainable, possibly anxiety and offers to refer me to neurology.
Frustrated I rang my BCN convinced I had Mets.
In August I attended my Breast Screening Unit where I did not have my usual surgeon.
She examined me querying an area I had pointed out 2 years previous to my reconstruction surgeon an ultra sound was requested.
Thirty mknutes later low and behold I had a suspected rupture. The radiographer informed an MRI was needed in confirming the rupture. On asking my lady surgeon that day would how I am feeling be related to a rupture she responded :

For reasons I dont understand my reconstructive surgeon choose to order a nuclear bone scan followed by a head chest and brain CT in September, before in October actually sending me for the MRI the radiographer said I needed. In November i had an appointment with my reconstructive surgeon to which I went alone unaware what was to come.
I was told I had a rupture. I was told I had to have both implants removed. I was told they didn’t know why it had ruptured. I was told he only ever had two ladies rupture and I was one. I was asked had I had a high impact fall or car crash, no I did not!
My head was mush racing, why, how, another operation, my chikdren, childcare.
I remember he told me I could use the muscle on my back but because I had a 1 in 20 chance of my cancer coming back I would be best to keep that for a “PLAN B ” scenario when that would happen.
He insisted he had one date left Christmas week, not ideal he knew. That if I didn’t choose that i would be impacted by bed shortages caused winter illnesses that would happen after Christmas. He could not assure I would have a bed..
My head was like a tea cup over flowing, while into myself alarm bells ring – he thinks my cancer is going to make a return, but I’m 5 years on is that not a good thing?
On he goes to tell me that the implants are safe, the M&S of implants. Throwing the implant onto he ground and stands on it. Being a fairly robust man it was the visual effect obviiously.
Foolishly I trust him and infact I tell him I trust in him. Yes book me in..
I wanted the implants out I was scared and on realising the rupture had been making me sick it couldn’t happen quick enough.
Women who have cancer are told “do not google.”
we don’t go looking for more things to be scared about especially additional cancer risks, and risks prior to surgery.
My time was taken up with arranging Santa Claus, childcare, work and preparation for the post op restrictions mayhem!

ON the 19th December 2018 I had my operation to remove and exchange for tissue expanders. The following morning my surgeon and a registrar came to examine me, all looks good i’m pleased. My Surgeon goes on to tell me I am quite the lucky lady as he had just this week had notice the implants he had just removed were removed from use as there were health concerns involved-just like that nasty mesh they removed from use he explained.
Wow talk about timing, indeed he tells me!!

In the days after my surgery I learned the tissue expanders were also involved in the Medical device recall alert in relation to Allergan textured implants.
I knew Allergan textured were the ruptured yet had no idea what was currently in me.
In the both post op appointments weekly after my surgery no one could tell me for certain if I had Allergan textured expanders . I was told only my suregeon knew and he was far too busy to see me.
So I had had enough. I asked what time did his clinic finish and I sat from 2pm in the waiting room until 6.10 when I saw him. Being 2 weeks post op I should have been resting!
On asking questions were the expanders implanted the recalled ones, he shrugged his shoulders and said they were.
I was Furious, asking why was I inserted with devices you told me 5 weeks ago were gold standard. You insisted 5 weeks ago you stood over them how safe they were and how they are linked to causing BIA ALCL.
Shrugged all off insisted he was under no directives to take them out.
Although he wanted to continue with our original plan of implants and I told him no, in no uncertain terms I would not. I wanted to reconstruct using my own tissue, nothing man made any more. Refusing point blank he insisted on using an implant.. I did not want an implant, he was not listening, who is to say in a years time that implant wont be recalled and deemed unsafe. He then offered to remove everything. I would be concave as I removed both breasts that distressed me hugely. I removed one to reduce my risk and he had put risk back into me. Not one but two risks as there was two, did that mean twice the risk of BIA LCL? His reply was its only 2 women in the UK who have died of it!

2 insignificant women, how dare he I thought. 2 is too many.
I did not want implant reconstruction any longer, I told him I felt duped, I had been attending him for a long time with silicon toxicity symtoms. He told me silicone toxicity was an internet thing. I told him I had looked into the implants and many women had issues and he told me these women were being over dramatic . Reminding him of how he had brushed me off with post chemo side effects as a justification for all this he was getting more and more like a child with a tantrum. I had asked to have a 2nd opinion in Belfast into using my own tissue.
Feeling hurt let down and feeling very vulnerable because I had trusted him.
He ploughed on telling me he wanted to continue to fill my expander, to which I replied you told me I would only be able to create a small breast with my tissue why would I expand an create a larger breast, his reply was
What is not needed would be cut off. I almost threw up, sick to stomach, the man I thought he was mask had just fell.. just cut off and bin some more of me. He was a plastic surgeon not a cancer reconstructive surgeon.

When I learned of BIA ALCL I wanted to tear open my chest and rip the implants out.
The breast cancer was always what the universe had in store for me. The thought of getting a cancer from the implants that replaced where my original cancer was unfathomable. The thought of getting cancer from the implant on the side I had a risk reducing mastectomy was profound.

In July 2018 THE ASSOCIATION OF BREAST SURGERY issued a statement on BIA LCL,
in which they stated the risk associated with Allergan Textered Biocell was I in 3817. They also stated no cases of BIA ALCL to date had been reported with smooth implants.

My surgeon knew of the risks, had other options yet continued to to use the higher risk option on me and other cancer survivors.
If I had of been informed of the fact and the specific rate of risk to the implant involved I would have ran as far and fast as I could.
Yet I couldn’t as I was not informed fully of all the risks verbally or on leaflets I could have mulled over at home.
The implant manufacturers knew yet did not make it transparent to me so I could make an informed decision.

4 months on I’m on the nhs list for DIEP reconstruction but the wait is 2 years. I did not want to wait! On I go booking private appointments looking for help to achieve breast reconstruction using my own tissue
I quickly found no one wants to help unless it involves implants. To my amazement in the brochures Allergan had sent me earlier I discover in the “directions for use manual” on page 9 it states the Allergan textured Tissue Expanders 133 are not be used beyond 6 months.

Bloody hell here I go again, no one mentioned this.

Off I go to my breast screening unit again, to see my original mastectomy surgeon who diagnosed me in 2013. Anxiety was at all time high to be back here after the fiasco at Christmas.

Deciding to rope in the support of my local breast cancer support charity group for fear of being passed from pillar to post the managing director accompanied me.
My health was declining once again, and having a grade 4 capsular constriction in my 4 month old implants I was at an all time low.
Surprisingly the news was good he was going to help, hurray! Informing me how I had been feeling with the previous rupture was not “an internet thing” as suggested by his colleague, he went on to say I had had a mast t cell response causing slow anaphylaxis explaining all the terrible illnesses. I could have kissed him literly of course!!! At last I had an explanation for how shitty I had felt, I was not a crazy woman! The silicon had also spilled out I had not been told that and that not all the capsule was removed.

In May i was left with no choice they needed to come out. Once again gradually getting sicker, and the expanders were nearing the 6 month implantation limit I was worried.
The wonderful surgeon knew how fearful I was of being concave so he agreed to try and create an artificial seroma to give me a little something in my chest area.
Two surgeons operated on me that day, ironically they took a side each! The operation was 3 hours where expanders, capsules and previous capsules were removed.
Returning home the next day to rest up to let healing to begin. It is still early days, I am currently 3 weeks on.

In this time the following issues have disappeared tinnitus, blurred vision, metal taste, burning mouth, food allergies gone I can eat what I want, not one scratch or itch on my legs, acne on my back dying down, and I can breath via my nose, and I can tolerate alcohol!!

I do not regret explanting and yet to hear a woman who has.
What I will say I regret is falling for the belief that me as woman needed fake boobs. I regret being, misled, cheated, seduced and misguided by my reconstruction surgeon and the breast implant manufacturer who use vulnerable women to make their fortunes.
I anguish over putting my health at risk.
I anguish over destroying my physical and emotional health.
I anguish over blowing the last 3 years passing me by as my health demised because of breast implants.
I anguish over the time I spent sick when I could have had wonderful times with my precious children.
I anguish over having faith in all the medical professionals who let me down and over and over again.
I anguish over ever mutilating my body for implants and all the toxic effects.

I do look forward to being me once again, a new version.
A stronger woman who is more informed on Breast Implant Illness and BIA LCL.
A woman who will question without fear.
My breast screening unit went from saving my life from cancer to making my life hell because of breast implants and their effects.

Onwards and upwards I will go, someday its a distant memory.

One thought on “Lisa (BII after mastectomy)

  1. Rosemarie says:

    Hi , I totally understand you xx I had a double mastectomy in April 2018 & I was told expanders and implants only & best way . I’ve just finished my treatment & had hysterectomy and expanders still in , this has really frightened me as I got a letter from my hospital about the implants but I didn’t realise it was also expanders plus the left expander has burst I think but they insisted on inflating it , and I have not been spoken 2 . I’m BRACCA poss , her2 pos & eostrogen pos hence the hysterectomy .


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