Various areas

[Guest guest]

Hi Everyone. Odd title to this post but couldn't reply individually, so all

sorts of things below. Some are for stage iv BC and some for BC 2.

Back in 1996 I had a mammogram (I endearingly call it the crusher) in the

February ~ all clear. 3-4 weeks later I felt a knotty lump something the size of

the top of a thumb, rushed to the doctors and told him I had cancer. Calm down

was his reply not all lumps are cancer etc. etc.(haven't we all heard that one

before?) however, he could feel it, not my imagination, he faxed the surgeon and

I saw him a few days later. FNA biopsy and another 'crusher' ordered for the

following week. FNA came back positive, 'crusher' all clear, again ~ ordered an

ultrasound and it was on there, clear as a bell. If I had not been doing self

examining I might have been another year before the next crusher invitation. All

you ladies who are getting MRIs be grateful that medicine has moved on since my

original diagnosis. The tumour was 2 cm but I didn't get any staging or grading.

Later when the cancer spread to the bones I was told ER+ No lymph involvement

I have read a lot about your thoughts on Tamoxifen and the AIs; Femara,

Aromasin, Arimidex and probably Faslodex (the lady who is about to go on monthly

injections)

I see a number of you are having aches and pains with Arimidex. Here in UK

current guidelines are 5 years Tamoxifen then change to Arimidex because by 5

years Tamoxifen is coming to the end of it's effectiveness. Femara is about to

replace Arimidex so I understand.

Because I have mets to the bone (since 2001) I have had no option but to take

these drugs.

Tamoxifen definitely upset my vision, I had my spectacles changed every 8

months whilst on it, saw the oculist at the hospital who denied Tamoxifen can

damage the eyes, then one day I presented him with the pack insert which clearly

states eye problems. Well, he said it must be the Tamoxifen then! Less than a

year from coming off it, my sight improved. Yes, Drs are good at prescribing but

apparently not so good at reading the adverse events in the literature.

When I first had Tamoxifen I was premenopausal and bleed? did I bleed? Stood

in a shop one day and onto the floor. I was in work on the next occasion, a

prison here in UK, training inmates on health and safety and then stood up. It

poured, two inmates laughed, all of them came to look and in the end I was

entirely unprofessional and told them to 'get out' only that wasn't quite the

words I used but two words from their own database of language that they clearly

understood.

I had to come off it as I was so anaemic, I had bled non stop for 72 days. I

was offered nothing else and a few years later when I was post menopausal and

diagnosed with mets I was put on it again and of course no bleeding problems

but aching joints

Arimidex made just about every joint in my body hurt and so stiff, Aromasin

not quite every joint, Faslodex less, Femara even less.But I am now running out

of choices and will take anything to gain extra time.

I want to tell you about Faslodex. The base liquid is oil so when you inject

into the muscle it doesn't spread very well and I was left with a very painful

rear end, each month for 18 months. My nurse used alternate buttocks each time

but the build up was so bad I asked where else I could be injected and she asked

the makers (as I was on a clinical trial the drug has to be administered 'just

so') but she came back to me and said that I could have the shots in my thigh.

This was a great improvement and I guess it's because the leg muscles are used

so much they disperse the drug base. But my poor bottom end was so sore, hot,

red and lumpy for months even after coming off it. Eventually the cancer became

resistant to it and the disease progressed. If you have Faslodex (the pack

insert warns of injection site problems but makes them sound minimal) try a

thigh or two if you ever have it.

Mastectomies and back ache, YES.

In my own case my posture became rather poor, I became a bit hunched. I was

tight from the implants and could not get my back straight. My surgeon said it

happens quite often, we pull you about rather a lot on the theartre table and

the pectoralis muscle is over the implant so everything is bound to be rigid and

then there is the swelling on top of that. The physiotherapist told me to ease

my shoulders back 4 -5 times a day, (aswell as other arm exercises) accept my

posture for the moment and gradually increase the easing and hold for longer and

longer each day. After a month or so I was back to being reasonably straight.***

see end of para.

I didn't have my mastectomies until 3 years after the primary. By that time I

had found my mother and discovered all the family that had had breast cancer and

armed with this went back to the geneticist who advised prophylactic

mastectomies. 2 years after this I had a Latissimus dorsi flap to replace the

burn from the radiotherapy and pretty bad backache again. Interestingly though,

I had a leak from the saline implant about a year later and had to have it

removed and the back ache again. Because I was doing another degree at the time

and exams pending I didn't have a replacement (because longer time off from

univ) until 4 months later and.... no doubt you have guessed..... backache

returned. I think it is all to do with the rib muscles one triggering the next.

***I was diagnosed with cancer in the sternum, manubrium and collar bone so

never really got my shoulders back completely because it triggers pain.

To the lady who said she has dreadful backache and is wondering if it's a

return of the cancer, please get yourself a bone scan, MRI or whatever is the

best type for you. There is nothing like a scan to ease the mind. Alternatively,

or as well as, get someone to press firmly on each verebrae, then the muscles at

each side of them until you can locate the pain more precisely. Bone pain is

quite different to muscle pain and someone else pressing locates the source of

the pain better than yourself.

Just as a matter of interest I keep very careful notes of all visits to the

hospital and my family doctor. What I go with, what I ask, what is said, what I

am given, what I am advised, who I saw. I always take a list with me and spaced

so I can write down the answers. It takes a bit of time but write up notes in

the consultation, though some docs don''t like you doing it ... do I care?.. but

certainly when you come out because it's so difficult to remember by the time

you are home and if you are told something upsetting it throws you out

completely. Ideally take someone with you who can write down for you. Once I had

a doctor say to me, must you really write whilst I am speaking? I replied, must

you really keep answering the phone whilst I am consulting you? And we stared at

each other for some seconds neither speaking, then he continued as though he

hadn't asked. Funny old lot, some of these medics!!! (Funny old lot, some of

these patients .... well me anyway) I don't

put up with any nonsense from doctors, I don't treat them like Gods. I have in

my time met some of the rudest, once I went in and the doctor put a clock on the

front of the desk facing me and said you have 10 minutes, get on with it. So I

gave him my list and said read that and don't hang about, I have a train to

catch. I was out in 8 minutes and refused to say 'thank you doctor' He was

completely wrong,he diagnosed me with a frozen shoulder, no treatment and I

actually had Polymyalgic Rheumatica and needed treatment.

Finally I want to say to you all that I haven't been a member very long but

just adore these forums. I feel the warmth, the compassion and the love, you

are just wonderful caring and sharing people, if only we could all meet up, be

safe, be happy, be well, love from Velvet

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[Guest guest]

Velvet -

I enjoy your posts and feel your spirit clear across the Atlantic...you've

been through the wringer, my dear, but we are all blessed to have you in

friendship.

[Guest guest]

Velvet -

I enjoy your posts and feel your spirit clear across the Atlantic...you've

been through the wringer, my dear, but we are all blessed to have you in

friendship.

[Guest guest]

Velvet -

I enjoy your posts and feel your spirit clear across the Atlantic...you've

been through the wringer, my dear, but we are all blessed to have you in

friendship.

[Guest guest]

And we love you, Maya!