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Medical Forum / Diseases and Disorders / Breast Cancer / March 2008

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Eva - 14 Mar 2008 01:41 GMT
Okay, on June 30, 2004 I was diagnosed with Stage 3 breast cancer, which
gave me a 50-50 chance of surviving 5 years.  I was at that time 56 years
old.  Every available weapon was fired at my cancer, to wit: Chemo
(Adriamycin+Cytoxan, followed by Taxotere), modified radical
mastectomy+removal of 15 lymph nodes, radiation, a year of Herceptin, and
now the maintenance program of Arimidex.  So I'm still here, trying to
recover as best I can from being poisoned, chopped up, and burned.  I no
longer wake up screaming and crying, but I'm not like I was and life will
never be like it was.  But, as I mentioned, I'm still here.  Sometimes I
feel like a ghost.  Hell, lots of times I feel like a ghost.  I was a fairly
healthy middle-aged woman, but now I'm indubitably an old lady.  But, as I
mentioned.....I'm still here.  So far.

Today I learned that a co-worker's daughter, who was diagnosed with Stage 2
around the same time I was diagnosed with Stage 3, has now developed liver
metastases.  Like me, she was HER positive and was treated with
Herceptin--the drug that gave me so much hope.  Unlike me, she is only in
her 30s and has 2 young children.  I'm very upset over this.  Although I'm
an old lady, I still consider myself too young to die, but what do we make
of this happening to a woman who isn't even middle-aged yet?  It's horrible,
just horrible.  I told the mother to look into the possibility of Tykerb.
The daughter is receiving another course of Herceptin, plus radiation, plus
something called liver ablation.

I couldn't go through with that, if it was me.  I'd just commit suicide and
be done with it.  Once it's in your liver you're done for.

Any comments welcome.  I feel shaky.

Eva
Tim Jackson - 14 Mar 2008 10:51 GMT
> Okay, on June 30, 2004 I was diagnosed with Stage 3 breast cancer, which
> gave me a 50-50 chance of surviving 5 years.  I was at that time 56 years
[quoted text clipped - 26 lines]
>
> Eva

Yes it's awful, and remission from liver metastases is indeed rare.
Fortunately these cases themselves are rare, but that is no consolation
if you happen to be one of them.

One has to see it in proportion, it's one of many hazards that we all
face going through life.  At least with cancer she has time to say good
bye and make arrangements for her children.  Were she to die suddenly,
say in a road accident, there would be no such opportunity.

It is a difficult situation for  all concerned, I know: my daughter was
six when my wife died.  It isn't a reason to give up, although it may be
a reason to live life one day at a time.  Even if she doesn't have long
to live, there is lots she can do.  When my wife became bedridden, she
took a laptop to bed and proceeded to write her life history.  Basically
recording in advance all the stories she would have told the children
over the years.  Before she reached that stage we took a winter family
holiday to the Canary Isles, that she had always wanted to do.

It means a major rescheduling of plans, but there isn't time for giving
up, there's too much to do.

Tim Jackson
Eva - 15 Mar 2008 02:36 GMT
> One has to see it in proportion, it's one of many hazards that we all face
> going through life.  At least with cancer she has time to say good bye and
> make arrangements for her children.  Were she to die suddenly, say in a
> road accident, there would be no such opportunity.
------------------
This is a good point.

I don't know which is more traumatic, the shock of a sudden death or
watching someone you love die by inches.  I don't know if researchers could
measure this, either.

Eva
Maria - 14 Mar 2008 10:59 GMT
> Okay, on June 30, 2004 I was diagnosed with Stage 3 breast cancer, which
> gave me a 50-50 chance of surviving 5 years.  I was at that time 56 years
[quoted text clipped - 26 lines]
>
> Eva
The youngest member of my bc group has recently developed liver mets and it
makes me angry just to think about it.  She was diagnosed with primary bc
just a few years ago and the NHS B*******s didn't give her a HER2 test at
that time.  I made sure I got one because I wrote to my onc to request it,
thankfully I was HER2 negative.  Now she's getting Herceptin, a bit late
isn't it!

Off work today, I think I should give her a call.

María
Mary Fisher - 14 Mar 2008 12:21 GMT
> The youngest member of my bc group has recently developed liver mets and
> it makes me angry just to think about it.  She was diagnosed with primary
> bc just a few years ago and the NHS B*******s didn't give her a HER2 test
> at that time.  I made sure I got one because I wrote to my onc to request
> it, thankfully I was HER2 negative.  Now she's getting Herceptin, a bit
> late isn't it!

I don't think that the NHS should be universally damned because of one
unfortunate situation - whose history we don't know in any case.

My husband and I (prostate cancer and breast cancer) have been very well
served by the NHS and very many people are justifiably grateful.

There might be some hard stories and I'm sure that mistakes have been made -
who hasn't made a mistake?

My hand is up to admit that I've made many.

Mary
Maria - 14 Mar 2008 13:17 GMT
It wasn't a mistake, Mary, that's what I find unforgiveable, they knew about
HER2 at the time but they purposely weren't testing women for it because
then, if they tested HER2+, they would ask for Herceptin treatment at the
early stage.  I was diagnosed around the same time and I live in the same
area as my friend but I got on the net and found out about the HER2 test and
specifically asked for it, in writing, otherwise, I fear, I wouldn't have
got tested either.  My friend has two children.

The NHS is a worthy institution and certainly it is probably better and
fairer than the US system, for example, but it is not perfect.  I think the
way my friend was treated was negligent and the behaviour of the oncology
teams at the time, unethical.  I am not saying that early Herceptin
treatment would have cured her for sure, it might well have not but it could
have delayed the onset of secondaries and she has lost that chance.

Love

María

>> The youngest member of my bc group has recently developed liver mets and
>> it makes me angry just to think about it.  She was diagnosed with primary
[quoted text clipped - 15 lines]
>
> Mary
Tim Jackson - 14 Mar 2008 15:23 GMT
> It wasn't a mistake, Mary, that's what I find unforgiveable, they knew
> about HER2 at the time but they purposely weren't testing women for it
[quoted text clipped - 16 lines]
>
> María

I know it's hard to be on the receiving end, and I know the adjuvant
Herceptin issue was a hot potato in the UK at the time, but it is
increasingly the case that there are more treatments available than we
are collectively willing to pay for, either under the NHS or under the
US medical insurance system.  Someone somewhere has to make the
difficult decision of how to allocate the funds available, and that
means that sometimes it can be just too expensive to save someone's life.

As long as we go along the road of assuming that just because it is
possible then it should be done, the the pharmaceutical and medical
equipment companies will (quite sensibly) develop more and more
expensive treatments with lower and lower success rates, until we are
forced to bite the bullet.  This is not an issue we can duck by saying
you can't put a price on life.  By creating medical insurance at all,
you implicitly do put a price on life.

I don't know the actual figures, but lay this issue alongside another
recent medical hot potato - macular degeneration.  The money spent on
giving one cancer patient perhaps a 10% reduction in risk of recurrence
could I imagine delay a dozen eye patients from going blind.  And the
bottom line is that a dead person costs the taxpayer or insurance payer
nothing whereas a blind person is an ongoing liability.

Tim Jackson
Maria - 14 Mar 2008 16:03 GMT
>> It wasn't a mistake, Mary, that's what I find unforgiveable, they knew
>> about HER2 at the time but they purposely weren't testing women for it
[quoted text clipped - 40 lines]
>
> Tim Jackson

I am aware of this, but I consider it underhand of the NHS as an institution
and a breach of professional ethics on the part of the doctors and nurses
involved not to inform the patients of the situation, society needs an open
debate on these issues, not silence.  And if Hercep was so expensive how
come she's getting it now to prolong her life but not previously when it may
have saved it?  Who says a dead person costs nothing?  Power to you, Tim, I
am aware you brought up your kids following your wife's death but my
friend's partner sounds like a right piece of work and I doubt he'll bring
up theirs...  Who pays for that?

Regards

María
Tim Jackson - 14 Mar 2008 17:58 GMT
>>> It wasn't a mistake, Mary, that's what I find unforgiveable, they
>>> knew about HER2 at the time but they purposely weren't testing women
[quoted text clipped - 57 lines]
>
> María

I'll agree with that last, you could also argue that dead people don't
pay taxes.  I'll also agree that we need an open debate on what our
priorities are, and a transparent way of assigning them.

There is some debate going on, it's a fairly regular subject on BBC
Radio 4.  It was said recently that the NHS as presently structured has
no real way of assigning priorities between departments, the NICE
guidelines and the budgets are all we have.  There's no actual way of
taking the money saved by refusing someone Herceptin and using it to pay
for an A&E nurse, or someone's Alzheimer's drugs or whatever.

The reason why she can get Herceptin now and couldn't before, apart from
possible timing issues through the progressive introduction of the drug,
is statistical.  If she has a diagnosis of primary cancer, and say a 25%
risk of recurrence, within that a 25% chance of responding to Herceptin
at all, and within that say a 50% chance that it will prevent the cancer
spreading, then for every life prolonged, 32 patients have been given
the drug 'uselessly', because either they wouldn't have got a recurrence
anyway, or they died anyway.  But either way you don't know until
afterwards.  So while her particular course costs say £10,000, the real
cost is £320,000 per life prolonged.  Actually worse, because you can't
set the rules that precisely, you'd have to give it to people at lower
risk too.  (And some otherwise perfectly healthy patients may suffer
cardiac complications as a result.)  On the other hand, giving Herceptin
for secondary disease, you can stop the drug early if it is seen not to
be working, so it can be targeted to only those it will help.  But of
course the prolongation of life is rather less.

Tim
Eva - 15 Mar 2008 02:28 GMT
> It wasn't a mistake, Mary, that's what I find unforgiveable, they knew
> about HER2 at the time but they purposely weren't testing women for it
[quoted text clipped - 11 lines]
> but it could have delayed the onset of secondaries and she has lost that
> chance.
-------------
I should mention that the young woman I wrote about *did* have early
Herceptin treatment, and developed metastases 3 years later anyhow.  She's
getting another course of Herceptin now.  Why they aren't using lapatanib
(Tykerb) I don't know.

Eva
didlems - 14 Mar 2008 15:19 GMT
thankyou for being so honest about your feelings Eva, they echo so much
truth !
the thought of my cancer returning fills me with sheer dread.Three dear
friends with viberant personalities have now gone since I was dx in Nov
2002. so it can feel like a waiting game.I kow how you feel.
Kathleen
> Okay, on June 30, 2004 I was diagnosed with Stage 3 breast cancer, which
> gave me a 50-50 chance of surviving 5 years.  I was at that time 56 years
[quoted text clipped - 26 lines]
>
> Eva
Mary Fisher - 14 Mar 2008 16:52 GMT
> thankyou for being so honest about your feelings Eva, they echo so much
> truth !
> the thought of my cancer returning fills me with sheer dread.Three dear
> friends with viberant personalities have now gone since I was dx in Nov
> 2002. so it can feel like a waiting game.I kow how you feel.
> Kathleen

Well, Kathleen, it's a fact that the whole of life is a wiating game.

There's always that bus which you don't see ...

While I hurt, while I see my scar, while the same is true of my husband, we
live and every day is precious.

Mary
didlems - 14 Mar 2008 17:27 GMT
My initial comment simply meant that...I think about my mortality every day,
before bc I didn't.
Kathleen

>> thankyou for being so honest about your feelings Eva, they echo so much
>> truth !
[quoted text clipped - 11 lines]
>
> Mary
Louanne M - 18 Mar 2008 23:09 GMT
My daughter died of breast cancer on Oct 27,2007. She was stage 4, when
they took her first mamo. How would you like to have a Jerk of a hb,tell
you he can not stand the looks of her wig, which was beautiful. I did
not know that when she was first told, she was give 2 years to live,
when her hb asked her what she wanted to see that she never saw. She
told him to see he 13 yr old graduate. The jerk told her, "WELL, that
won't be for 5 year, YOU KNOW YOU CAN NOT" Some support, huh?  She had a
spot on her liver too, but surprisely, that never got bigger, it was
mostly her bones, then her brain.
Mary Fisher - 19 Mar 2008 10:08 GMT
> My daughter died of breast cancer on Oct 27,2007. She was stage 4, when
> they took her first mamo. How would you like to have a Jerk of a hb,tell
[quoted text clipped - 5 lines]
> spot on her liver too, but surprisely, that never got bigger, it was
> mostly her bones, then her brain.

Some men tend to be overly honest :-(

Hugs,

Mary
Louanne M - 20 Mar 2008 17:00 GMT
This jerk overly honest???? The night she was expected to pass, her
sister was sleeping in same room with her sister for 2 weeks. She asked
her hb, If Deb dies during the night do you want called. His answer "NO
WHAT CAN IT DO ANYWAYS"  SO, HER SISTER SAT ALL NIGHT WITH HER DEAD
SISTER, WAITING FOR THIS JERK TO GET UP. WHEN HE CAME HER WITH HER
ASHES, FIRST WORDS OUT OF HIS MOUTH WERE, "HER LAST 3 HRS WERE AWFUL"
MY DAUGHTER, SAID, HE WAS NOT EVEN THERE, NOT TO BELIEVE A WORD HE SAYS.
DO NOT SAY THIS IS GRIEF, THIS MAN HAS BEEN THIS WAY ALL IS LIFE. HE
FORBIDS HIS CHILDREN TO CONTACT ME IN ANYWAY, IF I WANT TO SEND BD CARDS
I HAVE TO SEND TO THEIR FRIENDS HOUSE. HIS DAUGHTER WAS TOLD TO TELL ME,
ANYTHING SENT TO HIS HOUSE, WAS TO BE ADDRESSED TO HIM.  THAT WILL BE
THE DAY?  AM I BITTER,  YES I AM.  SORRY FORGOT TO TURN THE CAPS OFF.
bogmyrtle - 29 Mar 2008 09:29 GMT
> Okay, on June 30, 2004 I was diagnosed with Stage 3 breast cancer, which
> gave me a 50-50 chance of surviving 5 years.  I was at that time 56 years
[quoted text clipped - 26 lines]
>
> Eva

I had my 6 th and last Chemo session this last week . Felt  pretty good ,
they then brought in a lad about 18 with cancer in his leg . He was so ill
and it totally broke my heart  to see . It's impossible to understand the
logic of this illness ,or any other tragedy like it ,that causes such
suffering .A lot of people survive  cancer these days and new medication is
desperately searched for so we all have to hang in there and look at the
good bits life has to offer ...

Mariann
Mary Fisher - 29 Mar 2008 10:20 GMT
> I had my 6 th and last Chemo session this last week . Felt  pretty good ,
> they then brought in a lad about 18 with cancer in his leg . He was so ill
[quoted text clipped - 5 lines]
>
> Mariann

There's no logic in illness, there's no logic in life itself. We have no
choice to be born nor what will befall us, we just have to make the most of
what we have while we have it.

I'm pleased that you're feeling good and hope you continue to improve.

Hugs,

Mary
bogmyrtle - 29 Mar 2008 10:37 GMT
>> I had my 6 th and last Chemo session this last week . Felt  pretty good ,
>> they then brought in a lad about 18 with cancer in his leg . He was so
[quoted text clipped - 15 lines]
>
> Mary

I have a month "off" before  16 sessions of radiotherapy . I am willing my
hair to grow so that I can burn my scratchy wig . So far the only hair that
has survived is the 3 that stubbornly grow day in day out from a mole on my
chin . Very attractive as you can imagine.  Hehe ...
Big hug  ,Mariann
Mary Fisher - 29 Mar 2008 10:46 GMT
>>> I had my 6 th and last Chemo session this last week . Felt  pretty good
>>> , they then brought in a lad about 18 with cancer in his leg . He was so
[quoted text clipped - 20 lines]
> that has survived is the 3 that stubbornly grow day in day out from a mole
> on my chin . Very attractive as you can imagine.  Hehe ...

LOL!

But look at the bright side - with luck you'll have more and more facial
hair. All you have to do is live long enough.

I speak from experience :-(

Mary
> Big hug  ,Mariann

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