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Medical Forum / Diseases and Disorders / Breast Cancer / April 2005

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Just thought I'd get this off my chest VERY LONG!

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Jen - 14 Mar 2005 02:33 GMT
Hi everyone,

Been reading the group for a couple of weeks and today decided that my story
might be worth telling, it would help me to feel better at this point to
think I may be able to help someone else in some small way, so here
goes........

My name is Jen, I live in London am a single parent to a fabulous 13 year
old Son. This whole story started in November 1989 when I was interupted at
work to be told the devestating news that my Mum had just been diagnosed
with breast cancer, I was 19, Mum was 44. We were dumbstruck, this kind of
thing didn't happen to us!

Mum and Dad had recently divorced and Mum was just about to move into her
own flat, which happened to be downstairs from the flat my boyfriend and I
had just bought as our first home, so it was useful in a way not to be too
far away from her when she was going through all her treatment. I always
knew that life would never be the same for us again, I was so traumatised by
the thought of losing her that I had to have councelling even then.

The cancer was 5cms and 2 Lymph nodes were positive, so chemo' and radio
were on the cards. She managed very well with both after the lumpectomy and
was involved with the trial of Tamoxifen- although she was in the group that
recieved steroids for 5 years. I was with her every step of the way and we
became very close as a result.

Life began to return to normal over the years with only the occasional blip
where she would phone me in the middle of the night panic stricken because
of a new pain, it was my job to sort out wether there was really anything to
worry about or not and up until 2003 there wasn't,

Mum started to have pain in the top of her back and one hip- as usual I gave
her my reassurances that as it had been so long since the cancer it was not
likely to be anything to worry about. My denial was reinforced by our family
Doctor who saw Mum 5 or 6 times over the next couple of months and said
she'd ''pulled a muscle'' or ''ripped a muscle'' but continued to prescribe
ever increasing supplies of stronger and stronger painkillers, which seemed
to be having no effect.

During this time I was doing everything possible to pretend it wasn't
happening. I knew she had bone mets, I knew what that meant. I'd divorced my
Husband by then and lived on my own with my Son in a ground floor place
which meant as soon as Mum came out of hospital, when the penny finally
dropped on the Doctor's heads, she was able to move in with us and luckily I
was well enough to look after her (I have MS) I am so grateful for that time
with her- it wasn't easy but we managed to keep our sense of humour. She
died on 27th October 2003. I can't really write about that now, maybe I'll
save that for another day.

Now I'm 36 and the weekend before this last Christmas I had an itch in bed
and found my own Breast Cancer. For me there was no doubt, I knew exactly
what I had to do. Straight to the Doctor who I laughed at when she tried to
reassure me, it seemed absurd that anyone would try. Then when I saw the
Surgeon (the same one who operated on Mum 15 years before) I told him that I
wasn't treating this lightly, I would like a double mastectomy please.  The
cancer turned out to be 1.8cms grade 3 (or is that stage?) 1 lymph node and
invading the blood vessels. So I've just had my first Chemo' (FEC) and just
started to lose my hair yesterday. I'll also be having 3 weeks of radio and
Tamoxifen for the 5 years.

I guess the whole point of this post is to encourage everyone to not be
frightened to make difficult decisions, they are easy when you put them in
perspective. My friends are devestated that I'm going to lose my hair on top
of losing my boobs (so to speak!) I might be in denial again here but none
of that seems very important!! Also you are all doing the right thing by
absorbing all the information you can, because you are always your own best
advocate and will feel much better in years to come knowing you have done
everything possible to help yourself.

I hope all of this doesn't sound too grim, it wasn't my intention, I fully
intend to beat this the best way I know how- by laughing heartilly ;-)

Jen x
smart_jayu - 14 Mar 2005 16:37 GMT
You really sound very brave to me. Best wishes and all good luck to you
in this battle.
Jayu.
Peter Rogers - 14 Mar 2005 23:24 GMT
"Jen" <JMnospam@nospam.com> wrote
>The
> cancer turned out to be 1.8cms grade 3 (or is that stage?) 1 lymph node and
> invading the blood vessels. So I've just had my first Chemo' (FEC) and just
> started to lose my hair yesterday. I'll also be having 3 weeks of radio and
> Tamoxifen for the 5 years.

> Jen x

Hi Jen,

I lurk in this group, but cannot usually add anything which the
regular contributors have not already put much better.

My wife Liz also had FEC and radiotherapy, and is now already two
years into Tamoxifen - sounds similar to your esperience so far.

This is a wonderful group, which gives strength to all its members.

Best wishes,

Peter
jennyb@isp.com - 16 Mar 2005 02:01 GMT
> >The
> > cancer turned out to be 1.8cms grade 3 (or is that stage?) 1 lymph node and
[quoted text clipped - 17 lines]
>
> Peter

Dear Jen,
  I felt your stregnth as I read your post. You sound like such a
wonderful person.Here , you will find friends, gain understanding and
be able to help so many as I believe you have already .Please keep us
informed and know that you and your son are in my thought's and
prayer's~ Jennifer
Jen - 16 Mar 2005 11:49 GMT
>> >The
>> > cancer turned out to be 1.8cms grade 3 (or is that stage?) 1 lymph
[quoted text clipped - 27 lines]
> informed and know that you and your son are in my thought's and
> prayer's~ Jennifer

Thank you all so much for your kind words, I can now officially say that
it's not so bad when your hair comes out either! In fact I got so fed up
with it coming out in handfuls that I shaved it all off yesterday. I got my
Son to help too and we had a laugh about it. But I think apart from the day
of my operation this has been the most difficult aspect of the whole thing
for him to cope with- must have got his head round it a bit today though as
he says he thinks I look like 'Fester' from the Adams family! Maybe I should
go and buy some black eyeliner ;-)

Jen x
Guess Who - 16 Mar 2005 13:27 GMT
>> > Thank you all so much for your kind words, I can now officially say
>> > that
[quoted text clipped - 7 lines]
>
> Jen x

I couldn't agree with you more the day all my hair fell out ( it seemed like
it happened in one hour) was the worst! And I agree worse then surgery!
Alex
Mary Fisher - 16 Mar 2005 22:27 GMT
> Thank you all so much for your kind words, I can now officially say that
> it's not so bad when your hair comes out either! In fact I got so fed up
> with it coming out in handfuls that I shaved it all off yesterday. I got
> my Son to help too and we had a laugh about it.

Why not!

> But I think apart from the day of my operation this has been the most
> difficult aspect of the whole thing for him to cope with- must have got
> his head round it a bit today though as he says he thinks I look like
> 'Fester' from the Adams family! Maybe I should go and buy some black
> eyeliner ;-)

Why not again?

It's not going to last for long, might as well make the most of it! Have a
bit of fun :-)

Mary

> Jen x
Tim Jackson - 17 Mar 2005 10:19 GMT
> Thank you all so much for your kind words, I can now officially say that
> it's not so bad when your hair comes out either! In fact I got so fed up
[quoted text clipped - 6 lines]
>
> Jen x

The consensus seems to be that it is a good idea to do what my wife did,
which was to have her head shaved as soon as hair started falling out.
It is somehow a lot less distressing to lose it 'electively' than to be
picking wads out of the shower plughole.

For those approaching this situation, if you don't feel ready for the
shaved look, you can always go for a really short cut, then when it does
go, you aren't losing much.

Signature

Tim Jackson

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A. P. Thorsen - 17 Mar 2005 20:51 GMT
> The consensus seems to be that it is a good idea to do what my wife did,
> which was to have her head shaved as soon as hair started falling out.
> It is somehow a lot less distressing to lose it 'electively' than to be
> picking wads out of the shower plughole.

<obligatory warning to those who dislike remarks in questionable taste -
stop reading now>

But then you miss the brief but very entertaining day or two where your
hair stays in as long as you don't disturb it, yet comes out readily if
you pull.

I only had a couple of chances to do this, but you should just see the
look on your friends' faces when you go up to them & say "I'm so mad I
could just tear my hair" . . . then you pull out a big ol' handful of
it.  Sick, perhaps, but quite, quite amusing. <G>

Ann T.
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Mary Fisher - 17 Mar 2005 21:07 GMT
>> The consensus seems to be that it is a good idea to do what my wife did,
>> which was to have her head shaved as soon as hair started falling out. It
[quoted text clipped - 12 lines]
> could just tear my hair" . . . then you pull out a big ol' handful of it.
> Sick, perhaps, but quite, quite amusing. <G>

I wouldn't expect anything less of you, Ann :-)

Laugh of the day, thanks!

Mary
Tim Jackson - 18 Mar 2005 09:37 GMT
Sick, perhaps, but quite, quite amusing. <G>

LOL
Signature

Tim

A. P. Thorsen - 17 Mar 2005 23:57 GMT
 > Thank you all so much for your kind words, I can now officially say
that
> it's not so bad when your hair comes out either!

Ooooo!  Oooo!   If you can scrape together the cash to cover it, I
*highly* recommend going to a massage therapist during the bald phase,
and asking for a cranial massage.  It's just a wonderful
stress-reliever, feels *amazingly* good, and it's just not the same when
you have hair.

Ann T.
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Jen - 18 Mar 2005 02:12 GMT
>  > Thank you all so much for your kind words, I can now officially say
> that
[quoted text clipped - 7 lines]
> Ann T.
> Remove 'dontsendspam' from address to reply by email

Might just try that!

Could do with some stress relief today - have a sore rib, I know it might be
nothing....... but.

Jen x
A. P. Thorsen - 18 Mar 2005 18:46 GMT
> Could do with some stress relief today - have a sore rib, I know it might be
> nothing....... but.

I hear you - I hate that kinda stuff.  I had some problems with my
intercostals (little muscles between the ribs) that had that kind of
effect.  If it's that, sometimes deep, slow, abdominal breathing will
help relax it & eliminate the soreness.  Ironically and irritatingly,
some muscular problems tend to get worse with stress/tension/worry.

Here's hoping it goes away for you.  If not, I fear your insurance
company will be making a contribution to a doctor vacation fund (if
you're in the US) to check it out.  Better to check things out, than worry.

Ann T.
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Jen - 18 Mar 2005 23:45 GMT
>> Could do with some stress relief today - have a sore rib, I know it might
>> be nothing....... but.
[quoted text clipped - 11 lines]
> Ann T.
> Remove 'dontsendspam' from address to reply by email

Thank you for your kind words Ann.

I don't live in the US, I'm in London, so don't have insurance worries, I
don't know how you all cope with that on top of everything else!

It just so happened that I was seeing the Doc the next day after noticing
this new 'niggle' so I mentioned it to him and am now waiting for an
appointment for the bone scan ''to reassure me'' The Doctor has the good
sense to realise that in my particular case he can't reasonably do that
though; as I just lost my dear Mum to BC.

Strange though I don't feel as panic stricken about it now that I have told
him about it, I've gone back to my usual self a bit- trusting in God and
knowing that this is just a journey and not the final destination :-)

Take care,
Jen x
Tim Jackson - 22 Mar 2005 17:31 GMT
> Thank you for your kind words Ann.
>
[quoted text clipped - 13 lines]
> Take care,
> Jen x

I just got the following email from Kaye (kaye301 at aol dot com), a
long time contributor who is currently having technical problems
accessing the group.

Signature

Tim Jackson

------------------
I wanted to respond to Jen x--who not only recalled when her mom was
dx'd with b.c. but who also has M.S.  Except, for perhaps some age
variations, our stories are very much the same.  I was dx'd with b.c. at
the same age as my mom--50, and there is a very strong hx of b.c.  What
is new that I haven't yet shared with the group is that I tested
positive for a variation in one of mt tp 53 genes--we have two.  I did
NOT test positive for having an actual  mutation of the full gene
itself.  The report emphasized that the results were a variation and NOT
a mutation.  What this means--from what I gathered is that I am more
susceptible to getting different cancers although it doesn't necessarily
mean I will.  The tp 53 gene is responsible for regulating proliferation
or apoptosis.

If she has any questions and would like to contact me--please share my
address with her.

C. Falise - 05 Apr 2005 07:35 GMT
hi kaye-
how's things?
i guess you are having "technical difficulties" with the group here.
hope all else is going well.
write when you can.
i think of you often.
:)
-c

> > Thank you for your kind words Ann.
> >
[quoted text clipped - 17 lines]
> long time contributor who is currently having technical problems
> accessing the group.
Bonehammer - 30 Mar 2005 16:47 GMT

> he says he thinks I look like 'Fester' from the Adams family! Maybe I should
> go and buy some black eyeliner ;-)
>
> Jen x

Heh. Maybe I could post the pictures from my last Mardi Gras... had
the coat done by a friend in exchange for a few potted plants. The
black around the eyes was soot from a candle. Had some kids
WAAAAAAAAAY scared...
Glad to know you're taking this lightly, too.

Ciao
Chiara
Tim Jackson - 30 Mar 2005 19:42 GMT
>  
>
[quoted text clipped - 11 lines]
> Ciao
> Chiara

I expect this was in jest, but anyone who wants to post a photo, please
don't post it to this text-only newsgroup.  We have a photo gallery for
the purpose at www.cancersupporters.com, where such contributions are
welcome.

Photos for submission to the gallery should be sent to
photos@cancersupporters.com, where they should appear within 24 hours.

Signature

Tim Jackson

-Who needs to pay Microsoft?  Free Open Source Software-
www.mozilla.org       FIREFOX Web Browser,  THUNDERBIRD Email/News
www.openoffice.org      Office Suite

Pamela Cook - 16 Mar 2005 19:48 GMT
> >The
> > cancer turned out to be 1.8cms grade 3 (or is that stage?) 1 lymph node and
[quoted text clipped - 17 lines]
>
> Peter

  Hi,
    Sorry to ask a silly question but what does FEC stand for?  Don't know
if I've had it or not.....
            Good Vibes
                        Pam xx
Jen - 17 Mar 2005 00:57 GMT
>   Hi,
>     Sorry to ask a silly question but what does FEC stand for?  Don't know
> if I've had it or not.....
>             Good Vibes
>                         Pam xx

Hi Pam,

Not silly at all!
FEC is named after the initials of the drugs used and involves the
chemotherapy drugs fluorouracil (5FU), epirubicin and cyclophosphamide.

Jen x
Mary Fisher - 17 Mar 2005 12:31 GMT
>>   Hi,
>>     Sorry to ask a silly question but what does FEC stand for?  Don't
[quoted text clipped - 8 lines]
> FEC is named after the initials of the drugs used and involves the
> chemotherapy drugs fluorouracil (5FU), epirubicin and cyclophosphamide.

Er - thanks for that!

I think ...

No wiser :-)

I blithely translate (aka show off) HMF as hydroxy methyl furfuraldehyde
(that's in another life)but I had to practise it for months and still, after
25 years, don't understand what it is :-)

Mary

> Jen x
Pamela Cook - 17 Mar 2005 17:10 GMT
> >   Hi,
> >     Sorry to ask a silly question but what does FEC stand for?  Don't know
[quoted text clipped - 11 lines]
>
> hello,
     Thanks for that.... they are the ones I've been given..(FEC)... I have
just checked.....Must be pretty standard?    One week on and no side
effects, still mucking out and riding every day....just one or two 'spasms'
in my throat now and then... hope it stays this way,,,,can live with
this....
   Will have to live with it regardless,  but you know what I
mean...........Does any-one know when my hair will fall out?   just waiting
at the moment.....
                      love Pam xx
Mary Fisher - 17 Mar 2005 18:01 GMT
> ...........Does any-one know when my hair will fall out?   just waiting
> at the moment.....

Make it happen! have a buzz.

Tell you what, we could meet and I'll do you if you do me ...

Mary
>                       love Pam xx
Pamela Cook - 17 Mar 2005 18:09 GMT
> > ...........Does any-one know when my hair will fall out?   just waiting
> > at the moment.....
>
> Make it happen! have a buzz.

  Could use the horse-clippers !!!!

> Tell you what, we could meet and I'll do you if you do me ...
>
> Mary
      Where-abouts are you?

> >                       love Pam xx
Mary Fisher - 17 Mar 2005 19:16 GMT
>> > ...........Does any-one know when my hair will fall out?   just waiting
>> > at the moment.....
>>
>> Make it happen! have a buzz.
>>
>   Could use the horse-clippers !!!!

That might do!

>> Tell you what, we could meet and I'll do you if you do me ...
>>
>> Mary
>       Where-abouts are you?

Leeds.

Mary
Tim Jackson - 17 Mar 2005 19:09 GMT
> Does any-one know when my hair will fall out?  

Typically I think second week after first dose, but of course people and
drug regimes vary.

Signature

Tim Jackson

-Who needs to pay Microsoft?  Free Open Source Software-
www.mozilla.org       FIREFOX Web Browser,  THUNDERBIRD Email/News
www.openoffice.org      Office Suite

A. P. Thorsen - 17 Mar 2005 20:50 GMT
>     Will have to live with it regardless,  but you know what I
> mean...........Does any-one know when my hair will fall out?   just waiting
> at the moment.....

Varies by person, but usually right around 3-weeks-ish.  For most, it
doesn't dramatically let go all at once (of course!), but starts to come
out a bit more readily in the brush or comb at first, then fall out with
increasing ease over a few days (unless you intervene & shave it as soon
as it starts).  That is, you'll likely get a little warning time.

Personally, I'd recommend a short cut (and a wig purchase, if you want a
wig) before the hair starts coming out, then shaving it once shedding
starts, but before the fall-out rate becomes truly annoying.

Ann T.
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