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Barb
The most important thing that I want to put across is that there are MANY survivors of IBC.
I am still here, healthy and happy after 10 years. Now to explain what happened.
I was in the bath, checking my breasts, as I had done many times (although not regularly
enough). I felt a pea sized lump on the top of the left breast. It didn't feel very
important; but the following week, when I went for my scheduled smear-test, I mentioned it
to the nurse. She confirmed that there was something and called a female doctor.
The doctor sent me for a check-up even though she was 'sure' it was nothing of
significance.
...Now the thing to remember here is that I live in the UK, and we have a National Health
System - free at point of delivery. Fortunately, I had Private Health Insurance - which
pays for 100% of the consultation, treatment and aftercare. I am not saying the same
treatment would not be forthcoming from the NHS, but the 'hotel-type' accomodation and
patient-to-nurse ratio is significantly better...
I was given an appointment the following Monday for an ultrasound. The ultrasound
specialist did alot of measuring and left the room to see my consultant. At that point
alarm bells were sounding in my head. I had a mammogram the next day, and the consultant
sent me for a biopsy that same Thursday.
The visit to the consultant was for the following Tuesday, and he confirmed that there was
a malignant lump. The surgery was scheduled for the following Friday. The surgeon said
he may be able to get away with a lumpectomy, but I decided to have a mastectomy anyway -
due to the location of the lump.
That weekend my husband went to the children's school (boarding) and had to tell them.
Our daughter was nearly 15, and our son was almost 13. It was a very difficult time.
No-one seems to mention the rest of the family and what they go through. The news
broadcasts were saying that there were over 15000 deaths in the UK every year from IBC. It
was only months after the operation that we all sat down, and everyone realised that I had
no thoughts of death or not making it!! The others though...
The mastectomy went ahead. The surgeon said that he wouldn't have been able to achieve a
lumpectomy anyway because the lump had grown to just over 7cm in diameter. He removed some
lymph nodes from under my arm - and the hair still doesn't grow there today. These were
sent for tests and were found to contain traces of cancer cells. So I was referred to an
Oncologist.
We managed to get a week's holiday booked to Florida between the mastectomy and the
chemotherapy.
The chemo started in September - 5 months of 2 sessions per month. I remember the
Oncologist saying 'you're going to breakdown and cry soon so don't worry about it'; it was
as if he was willing me to. I didn't feel like that at all. It wasn't until he told me
that 'he had to tell a patient that he couldn't help her because she had not been referred
to him quickly enough by the NHS surgeon, and she had a family of 3 young children...'
That's when I broke down - how lucky was I?
The radiotherapy started immediately after the chemo finished. That was for 15 sessions -
one per day Monday to Friday for 3 weeks.
After that I was put on Tamoxifen for 2 years, with regular check-ups, every 3
months.
I remember that after the operation and treatment, it was important to me to know that what
my family were saying that it didn't bother them about the loss of the breast, was in fact
the truth. When my husband made love to me with the lights on, that proved it. When my
children could look at me without any cloths on - which is normal in our household -
without turning away, that proved it!
I remember the first time the surgeon told me what he had to do, he also told me that after
2 years I could have reconstruction surgery. He didn't like doing it at the same time as
the mastectomy, because he believed that the body needed to recover first. He knew that
was what I wanted - not to make myself 'whole' again - I didn't feel part woman, and my
husband and children, fortunately, didn't either.
Two years went by, and I was at last referred to the best surgeon in the UK for breast
reconstruction. I chose the trans flap method - taking part of the stomach fat and muscle
under the front muscle and forming a breast from my own skin and flesh - it was still all
me. At the time there were only two surgeons in the whole of the UK who could perform the
technique. The operation took 12 hours to complete.
The result is brilliant - I can't feel hot/cold/touch on the reconstruction, but I can feel
pressure, and it is all me.
That was almost 8 years ago!!
I now have check-ups annually. My daughter (now almost 25) has started to have check-ups
as well, by the same team of specialists that treated me - she suffers with severe
endometriosis, but that's another story, no IBC though.
I remain positive and feel that the state of mind, after-care service and support of your
family and friends, are of paramount importance and go a long way to helping fight this
disease and recover from it.
So be positive, you can and most likely will survive, and the future remains the same after
the event, as it did before.
If you want encouragement or just to chat about things, send an email to
barb@casoftware.co.uk If I can help, I will.
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