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Medical Forum / Diseases and Disorders / Breast Cancer / March 2004

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Newly diagnosed

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Joan Kaapke - 09 Mar 2004 15:48 GMT
I was just diagnosed with breast cancer yesterday, and the surgeon gave me a
short list of options.  She is recommending a mastectomy with axillary
dissection (LN).  The lesion is very small, in the left breast, and
clinically Stage 1.  It could not be detected manually, but was visible on a
mammogram and ultra sound.

She discussed the option of a sentinel LN biopsy, but said there was a very
slight risk of a fatal reaction to the dye they use; about 1%.  I am
thinking of having this done, and would like to learn more about it, from
anyone who has been through it.  I am also researching the web for
information.

She also discussed a lumpectomy with axillary dissection, and radiation.
She says there is a 10% chance of recurrence with this method.

I am 74 years old, and told her I was not concerned about reconstruction
after surgery.

Joan
Mary Fisher - 09 Mar 2004 16:24 GMT
> I was just diagnosed with breast cancer yesterday, and the surgeon gave me a
> short list of options.  She is recommending a mastectomy with axillary
> dissection (LN).  The lesion is very small, in the left breast, and
> clinically Stage 1.  It could not be detected manually, but was visible on a
> mammogram and ultra sound.

Well of course the surgeon is the expert but I do wonder why she suggests a
mastectomy for a stage 1 cancer. It seems fairly extreme to me. Can you get
a second opinion? It might be her favoured practice.

> She discussed the option of a sentinel LN biopsy, but said there was a very
> slight risk of a fatal reaction to the dye they use; about 1%.  I am
> thinking of having this done, and would like to learn more about it, from
> anyone who has been through it.  I am also researching the web for
> information.

I had it without being told about it, as far as I know it didn't kill me (if
it did you're reading ghostly words!). A 1% risk is very low though ...
there's a risk in having the surgery, in taking a car journey ... in being
born ... it doesn't stop us from such activities.

> She also discussed a lumpectomy with axillary dissection, and radiation.
> She says there is a 10% chance of recurrence with this method.

Which could be treated appropriately. Of course you might be one of the 90%
who didn't have a recurrence ... :-)

I don't know where they get these figures, they all seem to be very neat.
You never hear about a 17 3/4% chance of anything happening. She might have
been rounding up the 1% risk, it might be only .6%.

> I am 74 years old, and told her I was not concerned about reconstruction
> after surgery.

I was 60 when diagnosed, I had a lumpectomy, axillary dissection and
radiation (and the dye job) and am very happy. If I have a recurrence it
will be seen to.

Did your surgeon give reasons for her recommendations? Mine explained
everything (except the dye) but with no percentages and sent me home for a
couple of weeks to think about it and make a decision. I originally wanted a
bilteral mastectomy (Stage 2) but eventually decided on a lumpectomy - with
the proviso that if I have to have more surgery at any time for any reason
it will be the all-off. My life's to busy to waste it in hospital :-)

But we all have different priorities. You're doing the right thing by
finding out more and by coming here, just remember that nobody knows all the
answers.

Let us know what you decide and stay with us.

Hugs,

Mary

> Joan
Joan Kaapke - 09 Mar 2004 17:25 GMT
> > I was just diagnosed with breast cancer yesterday, and the surgeon gave me
> a
[quoted text clipped - 7 lines]
> mastectomy for a stage 1 cancer. It seems fairly extreme to me. Can you get
> a second opinion? It might be her favoured practice.

She says there is a difference in clinical stage 1, and the actual
pathological stage, and they don't know yet if it has spread.  She says it
is invasive.  For me, I think this may be the best choice, because I don't
want the daily radiation.  I just want to get it over with.  I don't know
yet if I will need chemo; it will depend on what is found after surgery.

> > She discussed the option of a sentinel LN biopsy, but said there was a
> very
[quoted text clipped - 7 lines]
> there's a risk in having the surgery, in taking a car journey ... in being
> born ... it doesn't stop us from such activities.

That is just what I am thinking.

> > She also discussed a lumpectomy with axillary dissection, and radiation.
> > She says there is a 10% chance of recurrence with this method.
>
> Which could be treated appropriately. Of course you might be one of the 90%
> who didn't have a recurrence ... :-)

That is true, but it is the radiation I want to avoid.

> I don't know where they get these figures, they all seem to be very neat.
> You never hear about a 17 3/4% chance of anything happening. She might have
> been rounding up the 1% risk, it might be only .6%.

They do seem to throw a lot of percentages at me, and I don't have a way to
check.  Anyway, right now, my blood pressure is so high I may just have a
stroke instead.  I see another doctor about this on the 12th.  I am on
medication, but it is no longer working.

> > I am 74 years old, and told her I was not concerned about reconstruction
> > after surgery.
>
> I was 60 when diagnosed, I had a lumpectomy, axillary dissection and
> radiation (and the dye job) and am very happy. If I have a recurrence it
> will be seen to.

That is very encouraging.  How long ago?

> Did your surgeon give reasons for her recommendations? Mine explained
> everything (except the dye) but with no percentages and sent me home for a
> couple of weeks to think about it and make a decision. I originally wanted a
> bilteral mastectomy (Stage 2) but eventually decided on a lumpectomy - with
> the proviso that if I have to have more surgery at any time for any reason
> it will be the all-off. My life's to busy to waste it in hospital :-)

She said it is still the Gold standard, and it would provide the best chance
of survival.  I am in El Paso, so I know we don't have the best medical
care, but I do like my surgeon and trust her.  I just moved here from San
Diego and bought a home 6 months ago, to be near my sister, and for lower
housing cost.

> But we all have different priorities. You're doing the right thing by
> finding out more and by coming here, just remember that nobody knows all the
> answers.
>
> Let us know what you decide and stay with us.

I will; thanks for being there.

Joan
Mary Fisher - 09 Mar 2004 17:43 GMT
> > a
> >
[quoted text clipped - 6 lines]
> She says there is a difference in clinical stage 1, and the actual
> pathological stage, and they don't know yet if it has spread.

I don't think they ever do, that's why they look at the margins after
removing the lump and at the lymph nodes..

> She says it
> is invasive.

It often is. Mine was.

>  For me, I think this may be the best choice, because I don't
> want the daily radiation.  I just want to get it over with.

I can understand that. The radiation was the worst part for me - but some
people sail through it.

> > I don't know where they get these figures, they all seem to be very neat.
> > You never hear about a 17 3/4% chance of anything happening. She might
[quoted text clipped - 4 lines]
> check.  Anyway, right now, my blood pressure is so high I may just have a
> stroke instead.

That made me laugh, I'm sorry I did - but it does rather put things into
perspective!

> I see another doctor about this on the 12th.  I am on
> medication, but it is no longer working.

So many things go wrong as we age :-(

> > > I am 74 years old, and told her I was not concerned about reconstruction
> > > after surgery.
[quoted text clipped - 4 lines]
>
> That is very encouraging.  How long ago?

Only six years. Almost. I was called back from a routine mammogram on 26
April. Everything just spun on after that.

> > Did your surgeon give reasons for her recommendations?
>
> She said it is still the Gold standard, and it would provide the best chance
> of survival.

I think opinions change not only between surgeons but between countries. I
don't know the figures but know far more people - even older women - who had
lumpectomies rather than mastectomies. There are so many variables ...

There are people here from USA who will know local practices better than I
do. There are people here who will know medical preferences better than I
do.

I don't know much ...

Mary
Joan Kaapke - 09 Mar 2004 18:52 GMT
> > > a
> > >
[quoted text clipped - 21 lines]
> I can understand that. The radiation was the worst part for me - but some
> people sail through it.

So many friends say they were burned by radiation.  I have been through
colon cancer 25 years ago, and came through surgery just fine; was back to
work in only 3 weeks.  No chemo required, and no problems since, so I think
I would do OK electing surgery.  I have had a long list of operations when I
was in my early 40s; so many I computerized a list for my doctors to review.
They thought that was a great idea.

> > > I don't know where they get these figures, they all seem to be very
> neat.
[quoted text clipped - 14 lines]
>
> So many things go wrong as we age :-(

Yes, and everything seems to go at once.

> > > > I am 74 years old, and told her I was not concerned about
> reconstruction
[quoted text clipped - 8 lines]
> Only six years. Almost. I was called back from a routine mammogram on 26
> April. Everything just spun on after that.

I am so glad to hear that you are doing well.  I am more optomistic just
hearing from you, but I have made out my will and Durable Medical Power of
Attorney, just in case.  The lab who did the biopsy asked me if I had one;
this did not give me much encouragement!  I am not even in the hospital yet.

> > > Did your surgeon give reasons for her recommendations?
> >
[quoted text clipped - 9 lines]
> do. There are people here who will know medical preferences better than I
> do.

What country are you in?  I have read that many countries outside the US are
not doing the mastectomy much any more.

> I don't know much ...

It is helpful to talk with someone who has been through it all; you know a
lot from experience.

Joan

> Mary
Mary Fisher - 09 Mar 2004 21:15 GMT
"Joan Kaapke" <joan_kaapke@yahoo.com> wrote in message news:Gno3c.64253> > >

> > >  For me, I think this may be the best choice, because I don't
> > > want the daily radiation.  I just want to get it over with.
[quoted text clipped - 3 lines]
>
> So many friends say they were burned by radiation.

I was a bit and was very uncomfortable but I got through it even though I
continued my busy life (immediately afterwards I was a Georgian chandler for
a week during a Captain Cooke Festival and living in a very primitive
harbour-side cottage with minimal washing - and everything - facilities).

> I have been through
> colon cancer 25 years ago, and came through surgery just fine; was back to
> work in only 3 weeks.

Oh, you'll eat breast surgery then!

>  No chemo required, and no problems since, so I think
> I would do OK electing surgery.  I have had a long list of operations when I
> was in my early 40s;

You probably know far more than most here!

> so many I computerized a list for my doctors to review.
> They thought that was a great idea.

I had brain surgery (long and irrelevant story) and gave a computerised list
of all my symptoms so that the doctors could refer to it for other patients.
They weren't interested. I thought it would be My Gift to Mankind. Heigh ho.

> > So many things go wrong as we age :-(
>
> Yes, and everything seems to go at once.

Not if you've been having bits lopped off since your forties - that's a long
time. My bits started dropping off when I was fifty. But it has accelerated
... :-)

> I am so glad to hear that you are doing well.  I am more optomistic just
> hearing from you, but I have made out my will and Durable Medical Power of
> Attorney, just in case.  The lab who did the biopsy asked me if I had one;
> this did not give me much encouragement!

LOL!

>  I am not even in the hospital yet.

I keep intending to renew my will, the existing one - the first and only -
was made in ... has a look ... 1972. But nothing will have changed except
that I don't want the solicitor to be an executor and take a portion of the
meagre estate. The only thing I want to change is that. Must get round to
it, that bus is just round the corner ...

> What country are you in?  I have read that many countries outside the US are
> not doing the mastectomy much any more.

Oh, sorry, I'm in England, UK, Yorkshire to be precise. God's Own County.
I'm a Tyke.

> > I don't know much ...
>
> It is helpful to talk with someone who has been through it all; you know a
> lot from experience.

Yes, Joan, I do, but my experience won't be the same as yours - your
experience probably won't be the same as anyone else's here, that's the
danger of hearing others' situations. Even if they're remembered accurately
they simply are not typical of everyone else's.

Have you heard of the BC Bible - Dr Susan Love's Breast Book? She recommends
that you learn as much as you can but remember that bc in all its
manifestations is different for everyone.

Buy it in pb from Amazon - you won't be sorry - or ask your library for it
if you can bear to give it back.

She's a breast surgeon and researcher in USA and dedicated to all things to
do with the breast, cancer in particular. You can't do better than to learn
from her - as soon as possible.

And stick around here too of course. We're with you.

Hugs,

Mary

> Joan
> >
> > Mary
Joan Kaapke - 09 Mar 2004 23:02 GMT
> "Joan Kaapke" <joan_kaapke@yahoo.com> wrote in message news:Gno3c.64253> >
>
[quoted text clipped - 11 lines]
> a week during a Captain Cooke Festival and living in a very primitive
> harbour-side cottage with minimal washing - and everything - facilities).

Since I last wrote, I have changed my mind and decided that the lumpectomy
is the thing to do, despite the radiation.  If others got through it, so can
I.  I have heard from a friend who had a lumpectomy 7 years ago, and is
fine; she had Stage 1.  Most are saying why do the mastectomy with Stage 1.
The doctor is leaving the decision up to me; she is not pushing me in any
direction.  I am also going to request the sentinel LN biopsy.  Now that
I've made a decision, I feel better.

> > I have been through
> > colon cancer 25 years ago, and came through surgery just fine; was back to
[quoted text clipped - 8 lines]
>
> You probably know far more than most here!

I was lucky to have excellent medical care in San Diego; most surgery was at
Scripps Hospital in La Jolla.
They all told me what a good patient I was and how quickly I healed - but
that was over 30 years ago.

> > so many I computerized a list for my doctors to review.
> > They thought that was a great idea.
[quoted text clipped - 33 lines]
> Oh, sorry, I'm in England, UK, Yorkshire to be precise. God's Own County.
> I'm a Tyke.

I think it must be a beautiful country.  I happen to be in El Paso, Texas;
just one big sand pit.

> > > I don't know much ...
> >
[quoted text clipped - 9 lines]
> that you learn as much as you can but remember that bc in all its
> manifestations is different for everyone.

I will check Amazon for it.  I shop there a lot.

> Buy it in pb from Amazon - you won't be sorry - or ask your library for it
> if you can bear to give it back.
[quoted text clipped - 4 lines]
>
> And stick around here too of course. We're with you.

It is great to have support.  I do have my sister here, and she is great.
My son lives with me, but it is not something I can discuss with him.

Joan

> Hugs,
>
[quoted text clipped - 3 lines]
> > >
> > > Mary
Mary Fisher - 10 Mar 2004 10:28 GMT
> Since I last wrote, I have changed my mind and decided that the lumpectomy
> is the thing to do, despite the radiation.  If others got through it, so can
[quoted text clipped - 8 lines]
> They all told me what a good patient I was and how quickly I healed - but
> that was over 30 years ago.

All the medical staff who've come up against me remember me from years ago,
I don't think it was because I was a good patient I was though, it's because
I asked questions all the time. That's when I found Susan Love, the ward
sister dumped this great tome on my belly and said, "Read that!" I did, it
kept me quiet for a couple of days (we stay in hospital longer than you do)
and was one of those life-changing experiences. Since then Spouse has bought
me my own, later edition.

The one in the hospital was donated by a previous patient, the staff said
she was like me, wanted to know everything, when she left she gave the book
so that others could also know. Hers was great gift to that unit.

> > > What country are you in?  I have read that many countries outside the US
> > are
[quoted text clipped - 4 lines]
>
> I think it must be a beautiful country.

It is.

> I will check Amazon for it.  I shop there a lot.

It's not expensive for its weight!

> > And stick around here too of course. We're with you.
>
> It is great to have support.  I do have my sister here, and she is great.
> My son lives with me, but it is not something I can discuss with him.

I'm very pleased that Tim has entered this discussion. He really DOES know a
lot about bc. I suspected that he'd say what he did about mastectomy being a
simpler process than lumpectomy, it is in some ways, I suspect mostly for
the surgeon. You must consider everything carefully.

Someone else mentioned that radiation 'firmed up' her breast, that was the
greatest discomfort to me too, I wouldn't have been able to sleep on my
stomach for a long time afterwards but I suspect that I reacted particularly
badly in that respect - and I had large breasts. If there's not much tissue
to swell you can't have much swelling! And I know that some have radiation
even after mastectomy, if the tumour is deep as mine was (couldn't be
palpated) .

There are no easy answers.

It's all in the past though. I'm not sorry for choosing the way I did. And
it will be in the past for you. Just get it done, whatever you decide, the
sooner it's over the sooner you can get back on with Real Life.

As for daily radiation, even that can be a good experience, meeting new
people learning new things, exchanging experiences, I used to enjoy going to
the hospital for it because it was in such lovely grounds.

Make the most of things!

And DO stay here to give others the benefit of your experiences - including
the ones who've been through it as well as newbies.

Hugs,

Mary
Joan Kaapke - 10 Mar 2004 15:52 GMT
> > Since I last wrote, I have changed my mind and decided that the lumpectomy
> > is the thing to do, despite the radiation.  If others got through it, so
[quoted text clipped - 19 lines]
> and was one of those life-changing experiences. Since then Spouse has bought
> me my own, later edition.

I will look for the book on Amazon.  I also ask questions, especially now,
and have learned to do research on the web.  In fact, friends are always
asking me to research for them on lots of different topics.  I like doing
this, and learn from it.  I use my computer to chart my blood pressure, and
have a neat graph in color I give the doctors and nurses.  They seem to like
it, and it is fun to do.

> The one in the hospital was donated by a previous patient, the staff said
> she was like me, wanted to know everything, when she left she gave the book
[quoted text clipped - 18 lines]
> > >
> > > And stick around here too of course. We're with you.

Thanks so much; I am sure glad I found you.  I was in shock at first, but
feel lots better now.

> > It is great to have support.  I do have my sister here, and she is great.
> > My son lives with me, but it is not something I can discuss with him.
[quoted text clipped - 3 lines]
> simpler process than lumpectomy, it is in some ways, I suspect mostly for
> the surgeon. You must consider everything carefully.

Yes, I think I am.  I had a biopsy which was benign at around 42 years of
age.  Was in the hospital 2 days; they took out a large lump, and it took
over a month to heal, as it was deep.  I think that must have been similar
to a lumpectomy today.  It left a very small scar.

> Someone else mentioned that radiation 'firmed up' her breast, that was the
> greatest discomfort to me too, I wouldn't have been able to sleep on my
[quoted text clipped - 3 lines]
> even after mastectomy, if the tumour is deep as mine was (couldn't be
> palpated) .

Mine is deep as well, and can't be palpated.  They had trouble locating it
and reaching it during the biopsy.

> There are no easy answers.
>
[quoted text clipped - 5 lines]
> people learning new things, exchanging experiences, I used to enjoy going to
> the hospital for it because it was in such lovely grounds.

I actually enjoy going to the doctor's office; she has a warm, friendly
staff, and she is very caring.  I like to show off my latest computer
graphics to them - my Next of Kin has photos of my sister and son on it, and
the staff asked how I did this.  I also have my childhood history printed
for them, with a baby picture on it.  I just got tired of filling out all
those forms, so I write, See Attached, and give them the printouts.  I can't
fit all my medical problems on 3 lines, anyway.

I also bring articles of interest to my doctor, such as one about digital
thermography, and I ask about new treatments and drugs.  I found one about
the MRI exam for breasts, which was of interest to the lab.  They kept
copies; it seems they are not very up to date on these procedures.

> Make the most of things!

I will try.  I am a tough old Texas gal; a real survivor, but this is more
scarey than anything I have been through so far.  I have never had to have
radiation or chemo before.

Joan

> And DO stay here to give others the benefit of your experiences - including
> the ones who've been through it as well as newbies.
>
> Hugs,
>
> Mary
Tim Jackson - 09 Mar 2004 22:29 GMT
> I was just diagnosed with breast cancer yesterday, and the surgeon gave me a
> short list of options.  She is recommending a mastectomy with axillary
[quoted text clipped - 15 lines]
>
> Joan

Mastectomy is a rather simpler operation from a recovery point of view,
cutting along the lines as it were, plus one can often avoid radiation,
which for most people has few side effects, but does mean a lot of
travelling to and from hospital.

If you have other medical conditions, then there is something to be said for
minimising the impact of surgery on your system.

My mother ( I think she was 76 at the time) had a mastectomy for a similar
cancer, after a lumpectomy failed to get clean margins.  She is of slim
build and said that at her age she had too little breast left to be worried
about losing it.  I don't recall ever having seen her wear a prosthesis, but
you wouldn't notice if you didn't know.  For people like her, mastectomy
would seem the logical option.

I believe the survival rates etc. are pretty much the same for both
treatments, and that lumpectomy has a slightly higher rate of treatable
recurrence.

Tim Jackson
Joan Kaapke - 09 Mar 2004 23:11 GMT
> > I was just diagnosed with breast cancer yesterday, and the surgeon gave me
> a
[quoted text clipped - 39 lines]
>
> Tim Jackson

Thank you, Tim.  I am flat chested, so looks would not be a problem for me.
However, after considering everything I have read, and advice from friends,
I believe I will have the lumpectomy with the sentinel LN biopsy.  With the
surgery, I think there is a drain that is left in for about a month, and in
the beginning, would require home nursing care.  The thought of this is even
worse for me to contemplate than radiation.
I have a wonderful, caring sister who will take me to appointments; she says
it doesn't matter how many trips it takes.

Joan
Pat from Apple Valley, CA - 10 Mar 2004 05:03 GMT
>>Tim Jackson
>>    
[quoted text clipped - 24 lines]
>
>  
Joan Kaapke - 10 Mar 2004 19:31 GMT
Tim Jackson

Thank you, Tim.  I am flat chested, so looks would not be a problem for me.
However, after considering everything I have read, and advice from friends,
I believe I will have the lumpectomy with the sentinel LN biopsy.  With the
surgery, I think there is a drain that is left in for about a month, and in
the beginning, would require home nursing care.  The thought of this is even
worse for me to contemplate than radiation.
I have a wonderful, caring sister who will take me to appointments; she says
it doesn't matter how many trips it takes.

Joan,

I had lumpectomy right breast Type IIB with all (19) of the lymph nodes
removed . I only had
drains for under the arm and they were removed in a week or so..I had minor
burns with the radiation,
but nothing real bad, and cleared up quickly. I believe light skinned people
get them worse, like
sunburn. The breast does firm up from the radiation and I have found that
the hardness makes it
slightly uncomfortable when sleeping on my stomach, my preferred position
for sleeping. If I put a
pillow under my chest I am fine..
I drove 55 miles one way to radiation and drove myself, as I did for my
chemo.
No Problems there either. It was not such a big deal. I had my surgery in
2000 at 58...
Pat from Apple Valley, CA

Thanks, Pat.  I am fair skinned.  I will see my surgeon on Monday to get
treatment scheduled, and get some more tests done.  I sleep on my side, so
this should not pose a problem.  My sister insists on driving me; even to
routine appointments.  We are the only family we have - all others died of
heart disease.

Joan
Meooww - 16 Mar 2004 07:33 GMT
> Thank you, Tim.  I am flat chested, so looks would not be a problem for me.
> However, after considering everything I have read, and advice from friends,
[quoted text clipped - 4 lines]
> I have a wonderful, caring sister who will take me to appointments; she says
> it doesn't matter how many trips it takes.

interesting conversation.

I was talking to one of the local surgeons here. I believe his opinion is
keep the breast if it is important. Keep the breast if you aren't worried
about recurrence. Mastectomy though -

The drain is in for about a month, perhaps. DOES NOT need home nursing care,
you can do it yourself very easily. Once it is over, it is done. You may not
even need chemotherapy. (Which you will if you go local excision with
radiation).

Find out a bit more about the skin problems associated with radiation - they
can be severe enough to cause disruption to the breast, and sometimes end up
requiring mastectomy anyway.

Truly - a mastectomy is a doddle.

Di
Mary Fisher - 16 Mar 2004 10:58 GMT
> skin problems associated with radiation can be severe enough to cause
disruption to the breast, and sometimes end up
> requiring mastectomy anyway.

I've never heard of that - has anyone else? Mastectomy required because of
the effects of radiation?

Mary
J - 16 Mar 2004 23:12 GMT
> > skin problems associated with radiation can be severe enough to cause
> disruption to the breast, and sometimes end up
[quoted text clipped - 4 lines]
>
> Mary

Hi Mary, I think she would have said "end up requiring mastectomy because of"
if she meant it was the result of radiation therapy. And of course, a lot
depends on when things happened and maybe to some extent who does it.
Radiation therapy has come a long way over the past 30 or 40 years.  It's my
understanding that "judiciousness" is so important (dose, angle, number of
treatments, interval between each treatment, etc).

Whenever you or anyone here has questions about radiation therapy, we have an
excellent, very experienced, resource on the newsgroup called (click on this )
news:sci.med.diseases.cancer (Steph). He was trained in UK and has been a
radiation oncologist (amongst other numerous degrees) for years in Canada. Ask
him. That's his speciality.
J
Meooww - 17 Mar 2004 09:41 GMT
> > > skin problems associated with radiation can be severe enough to cause
> > disruption to the breast, and sometimes end up
> > > requiring mastectomy anyway.
> > I've never heard of that - has anyone else? Mastectomy required because of
> > the effects of radiation?
> > Mary

the comment was made by a well-respected breast surgeon in my town
recently - when presenting a short seminar on the history of breast cancer.
It was my understanding that the unpredictable can happen - that's why they
advise about the risks of any treatment. He's a careful, highly-skilled
surgeon who prefers to conserve the breast, but ALWAYS warns the patients of
the risks of treatment.

But life isn't without risk anyway - we all cross roads, drive cars, have
children etc. Depends so much on what risk one is willing to accept.
I'm not in the shoes of the lady who made the original post. I can't make
choices, but felt it appropriate to comment.
J - 17 Mar 2004 12:15 GMT
> Mary Fisher wrote:
> > > > skin problems associated with radiation can be severe enough to cause
[quoted text clipped - 16 lines]
> I'm not in the shoes of the lady who made the original post. I can't make
> choices, but felt it appropriate to comment.

I'd like to hear from Steph about his knowledge and/or experiences about such
events.
One isolated event (in Australia) does not make a pattern.
J
Steph - 17 Mar 2004 17:24 GMT
> > Mary Fisher wrote:
> > > > > skin problems associated with radiation can be severe enough to cause
[quoted text clipped - 21 lines]
> One isolated event (in Australia) does not make a pattern.
> J

Side effects of radiation requiring a mastectomy are vanishingly rare. I've
never seen it.
Most patients get complete resolution of the acute radiation changes
(redness, some swelling) within a few weeks. A few patients have some
continuing pain at the site of the surgery, but is this due to the radiation
or the surgery?
Patients who have problems with the surgery (infection, bleeding, etc.) and
ladies with very large breasts are more prone to have persistent problems
after radiotherapy. But the standard of care throughout the western world is
now lumpectomy/partial mastectomy plus radiotherapy for patients with small
primary tumours. Some patients with small breasts and large tumours are best
served by mastectomy, because the cosmetic results of breast conservation
are poor.
As always, I would suggest getting the facts about radiation therapy from a
radiation oncologist, not the surgeon. I try not to give surgical opinions!
Mary Fisher - 17 Mar 2004 21:59 GMT
> Side effects of radiation requiring a mastectomy are vanishingly rare. I've
> never seen it.
> Most patients get complete resolution of the acute radiation changes
> (redness, some swelling) within a few weeks. A few patients have some
> continuing pain at the site of the surgery, but is this due to the radiation
> or the surgery?

I reckon surgery.

> Patients who have problems with the surgery (infection, bleeding, etc.) and
> ladies with very large breasts are more prone to have persistent problems
> after radiotherapy.

My post radio problems disappeared after a few weeks. The surgery ones after
a few months - well, a lot of months. After two, possibly three years (I
didn't keep a diary) my breast matched the other - a withered dug. Now it's
smaller. But I have to look hard to notice.

> But the standard of care throughout the western world is
> now lumpectomy/partial mastectomy plus radiotherapy for patients with small
[quoted text clipped - 3 lines]
> As always, I would suggest getting the facts about radiation therapy from a
> radiation oncologist, not the surgeon. I try not to give surgical opinions!

Well said.

Mary
J - 18 Mar 2004 10:53 GMT
> > > Mary Fisher wrote:
> > > > > > skin problems associated with radiation can be severe enough tocause
[quoted text clipped - 43 lines]
> As always, I would suggest getting the facts about radiation therapy from a
> radiation oncologist, not the surgeon. I try not to give surgical opinions!

Thanks for your reply, Steph.
How about "hardening" ("breast firming up from radiation therapy") to the point
of not being able to sleep on one's stomach due to the discomfort?
Misattribution?  I don't see it mentioned here
http://www.radiologyinfo.org/content/therapy/thera-breast.htm
J
Mary Fisher - 18 Mar 2004 12:30 GMT
> Thanks for your reply, Steph.
> How about "hardening" ("breast firming up from radiation therapy") to the point
> of not being able to sleep on one's stomach due to the discomfort?

There are other positions ... I can't sleep on my stomach.

Bit I couldn't lie on my belly while on an archaeological dig soon after
radiation and it DID take some time for the firming to go slack. But go
slack it did.

Now I can't sleep on my preferred right side because of arthritis but I'm
not having a leg off because of it :-)

Mary
Steph - 18 Mar 2004 17:11 GMT
> > > > Mary Fisher wrote:
> > > > > > > skin problems associated with radiation can be severe enough tocause
[quoted text clipped - 50 lines]
> http://www.radiologyinfo.org/content/therapy/thera-breast.htm
> J

A I said, some breasts, especially if they have the risk factors I stated
above, can be painful after treatment. But is it due to the surgery? The
radiation? Both?
Some women have problems after surgery alone, with no radiotherapy.
Kaye301 - 18 Mar 2004 19:44 GMT
Hi Steph--welcome to this board and for your responses.  I have a ?--are you a
radiologist or radiologist oncologist?  I am basing the following question on
the premise that you are the former; if not please excuse.  I was just
wondering if you were aware of the difference in the patterns of metastatic
spread of invasive lobular compared to invasive ductal--and also about the
differences in imaging techniques suggested to be used.  If so, would like
feedback--thanks in advance.  If not, please excuse...
madiba - 19 Mar 2004 18:30 GMT
> Side effects of radiation requiring a mastectomy are vanishingly rare. I've
> never seen it.
Neither have I, suppose its theoretically possible. Similar to
laryngectomies being sometimes necessary after high dose RT-chemo if the
perichondritis doesn't settle down..

Signature

madiba

Meooww - 21 Mar 2004 06:14 GMT
This was based on comments made by the surgeon.  Why do you assume it was
ONE case?

> > Mary Fisher wrote:
> > > > > skin problems associated with radiation can be severe enough to cause
[quoted text clipped - 21 lines]
> One isolated event (in Australia) does not make a pattern.
> J
Steph - 21 Mar 2004 06:28 GMT
> This was based on comments made by the surgeon.  Why do you assume it was
> ONE case?

I think I already answered that
Joan Kaapke - 27 Mar 2004 16:03 GMT
> This was based on comments made by the surgeon.  Why do you assume it was
> ONE case?
[quoted text clipped - 32 lines]
> > One isolated event (in Australia) does not make a pattern.
> > J

I found this article about radiation and side effects:

http://www.breastcancer.org/cmty_trans_2004_03.html

Joan
A. P. Thorsen - 16 Mar 2004 16:23 GMT
> The drain is in for about a month, perhaps. DOES NOT need home nursing care,
> you can do it yourself very easily. Once it is over, it is done. You may not
> even need chemotherapy. (Which you will if you go local excision with
> radiation).

A month would be really long.  One of my drains -- I had three with my
bilateral mastectomy & axillary dissection on one side -- was in for . .
. hmmm, I believe it was a little over two weeks.  Everyone seemed to
agree this was an unusually long time.  The other two were out around a
week, which I gathered was more typical.

I did have a home nurse who dropped in every coupld days for a few
minutes to check the incision & change dressings, but that was only 2-3
visits.  Insurance covered it. I took care of the drains myself.

I've never heard of chemotherapy depending on whether you elect
lumpectomy or mastectomy -- I had thought it depended on tumor size,
number, aggressivity, lymph node involvement, and the like.  Can you
provide any further info about what might lead doctors to suggest chemo
after lumpectomy but not mastectomy?

> Find out a bit more about the skin problems associated with radiation - they
> can be severe enough to cause disruption to the breast, and sometimes end up
> requiring mastectomy anyway.

I've never heard of radiation causing mastectomy to be needed.  Do you
have any details or cites about this?

And some people (me, for example) require radiation even with
mastectomy.  I had only heard that it depends on tumor location & extent.

> Truly - a mastectomy is a doddle.

I agree that it wasn't a huge big deal, even with two of 'em at once.

Ann T.
Remove 'dontsendspam' from address to reply by email.
Joan Kaapke - 16 Mar 2004 16:51 GMT
> > The drain is in for about a month, perhaps. DOES NOT need home nursing care,
> > you can do it yourself very easily. Once it is over, it is done. You may not
[quoted text clipped - 10 lines]
> minutes to check the incision & change dressings, but that was only 2-3
> visits.  Insurance covered it. I took care of the drains myself.

Yes, home nursing is covered by insurance and Medicare, I am told.

> I've never heard of chemotherapy depending on whether you elect
> lumpectomy or mastectomy -- I had thought it depended on tumor size,
> number, aggressivity, lymph node involvement, and the like.  Can you
> provide any further info about what might lead doctors to suggest chemo
> after lumpectomy but not mastectomy?

My doctor says the need for chemo depends on size and type of tumor, lymph
node involvement, etc.  She says I may not need it, or may need a different
type of medication.

> > Find out a bit more about the skin problems associated with radiation - they
> > can be severe enough to cause disruption to the breast, and sometimes end up
[quoted text clipped - 9 lines]
>
> I agree that it wasn't a huge big deal, even with two of 'em at once.

My doctor thinks lumpectomy is a good choice for me.  I must see a
cardiologist first, as my EKG on Friday showed that I may have had a silent
heart attack in the past.  I need to be evaluated prior to surgery, so will
do this as soon as I can.

Joan

> Ann T.
> Remove 'dontsendspam' from address to reply by email.
A. P. Thorsen - 16 Mar 2004 17:14 GMT
> My doctor thinks lumpectomy is a good choice for me.  I must see a
> cardiologist first, as my EKG on Friday showed that I may have had a silent
> heart attack in the past.  I need to be evaluated prior to surgery, so will
> do this as soon as I can.

Joan, I hope I haven't come across as saying something I didn't intend!
 I wouldn't urge mastectomy on someone who's decided lumpectomy is a
better solution for them (assuming they're within the parameters for
lumpectomy to be safe & effective, as you are).  This is a very personal
decision.

I simply had had some different experiences with details that were in
Di's post -- like how long the drains stay in afterwards -- that I
wanted to respond to, in case any lurkers were reading this thread.

No criticism of your decision intended!

Ann T.
Remove 'dontsendspam' from address to reply by email.
Mary Fisher - 16 Mar 2004 18:00 GMT
> > My doctor thinks lumpectomy is a good choice for me.  I must see a
> > cardiologist first, as my EKG on Friday showed that I may have had a silent
[quoted text clipped - 10 lines]
> Di's post -- like how long the drains stay in afterwards -- that I
> wanted to respond to, in case any lurkers were reading this thread.

And I'm glad you did. I haven't had the same experience as you but I did
think that your reply helped to modify the rather extreme things said
before.

> No criticism of your decision intended!

I'm sure Joan wouldn't think that, by now she'll have realised that we're a
bunch of bloody-minded women who have widely differing experiences with
various results - but that we all want the best for everyone else.

Especially those new to the group.

It must be quite a scary experience coming here ... surgery and subsequent
procedures will be like a holiday - from us at least :-))))))))))

Hugs to ALL

Mary

> Ann T.
> Remove 'dontsendspam' from address to reply by email.
Mary Fisher - 16 Mar 2004 17:56 GMT
> My doctor thinks lumpectomy is a good choice for me.  I must see a
> cardiologist first, as my EKG on Friday showed that I may have had a silent
> heart attack in the past.  I need to be evaluated prior to surgery, so will
> do this as soon as I can.

Yes, get on with it girl! The sooner it's done the sooner you'll be back to
real life!

Mary

> Joan
> >
> > Ann T.
> > Remove 'dontsendspam' from address to reply by email.
Joan Kaapke - 16 Mar 2004 18:13 GMT
> > My doctor thinks lumpectomy is a good choice for me.  I must see a
> > cardiologist first, as my EKG on Friday showed that I may have had a
[quoted text clipped - 12 lines]
> > > Ann T.
> > > Remove 'dontsendspam' from address to reply by email.

I won't see the cardiologist until the 31st, so have some time left to wait.
I am anxious to get through it, and back to normal again.  I am very
optomistic, especially after all the encouragement and support I have found
here, just when I needed it most.  I do know that each experience is
different as to surgery and treatment, and medical opinion is varied, as
well, but am more comfortable with my decision after discussing it with my
surgeon.  She is very easy to talk to, and takes time to explain everything
to me.

Joan
Mary Fisher - 16 Mar 2004 19:24 GMT
> > > My doctor thinks lumpectomy is a good choice for me.  I must see a
> > > cardiologist first, as my EKG on Friday showed that I may have had a
[quoted text clipped - 22 lines]
> surgeon.  She is very easy to talk to, and takes time to explain everything
> to me.

That's a great comfort. Most of us have had that experience but not all,
sadly.

Hold on to her!

Mary

> Joan
Joan Kaapke - 17 Mar 2004 03:19 GMT
> > > > My doctor thinks lumpectomy is a good choice for me.  I must see a
> > > > cardiologist first, as my EKG on Friday showed that I may have had a
[quoted text clipped - 32 lines]
>
> Mary

Yes, she and her staff are so nice.  Today I saw the radiologist, another
young woman doctor who will be treating me.  She explained that with the
type of cancer I have, there is a 90% chance of living another 10 years no
matter what treatment I choose, or if I simply choose none at all.  At my
age, it seems it will develop very slowly.  Of course, she is assuming the
lymph nodes are clear, and that is unknown at present.
I asked her about treatment for radiation burns - she said, we don't do
burns here; we will not burn you.  Then she gave me a free tube of ointment,
which costs $85 at the hospital.

> > Joan
Mary Fisher - 17 Mar 2004 11:00 GMT
> my
> > > surgeon.  She is very easy to talk to, and takes time to explain
[quoted text clipped - 12 lines]
> type of cancer I have, there is a 90% chance of living another 10 years no
> matter what treatment I choose, or if I simply choose none at all.

Yes - that's something I thought someone better qualified than me might have
said here.

> At my
> age, it seems it will develop very slowly.  Of course, she is assuming the
> lymph nodes are clear, and that is unknown at present.
> I asked her about treatment for radiation burns - she said, we don't do
> burns here; we will not burn you.

LOL!

>  Then she gave me a free tube of ointment,
> which costs $85 at the hospital.

Great.

Tie her down too!

Mary
•*•Annie•*• - 10 Mar 2004 09:01 GMT
Joan..
Welcome to the clu no one wants to join...but glad to have you. I hope
as you make your way through this you will lean on us for whatever help
we can be to you. The best part of this group is that once you post
asking for help, you are never alone with this...there is always someone
here to help you with just about everytihng you'd want to know. And the
research will be done if there's something we might not know..although I
have literally NO clue what it would be that someone in here wouldn't
know... They're are some truly amazing people in this group. You will
not only be given good solid information, but you will also find some of
THE most compassionate people I've had the pleasure of getting to know.

I myself have been posting here almost 5 years now.
I started out in 4/99 {49 yr} with Stage 1, IDC {invasive ductal
carcinoma} 1cm, lumpectomy, clear margins, node neg. I had 33 radiation
treatments and went onto to do 6 months of chemotherapy {CMF} I'm not
trying to be snotty or rude here by no means by saying what I'm going
to, but I lived and breathed that "10% or less chance of recurrence" I
really wasn't being realistic I don't think, based on the fact it was an
invasive type.

I was cancer free till November of 2002. I then was faced with having to
have a mastectomy. I had already had radiation and it wasn't an option a
second time.
I had a "modified radical mastectomy" {MRM} I had immediate recon.
I'm fine right now, but as I've said here before when these type posts
come up. I would do things _much_ different then I did based on what has
happened to me.
I'd have the mastectomy right away and had the more aggressive chemo
that was offered, but that I declined on at the time.

But this is a _very_ personal choice that we all have to make...and of
course as I read you've got other health issues that you're dealing
with, so perhaps a mastectomy is not the best route for you to take. And
I'm sure you're concerned as well with quality of life {ref:radiation
treatments} issues with you being older then I was when I was making
these decisions.  
I guess we just have to do what we can based on what we're told at the
time, and hope for the best outcome.
Whatever path you take we will be here to support you 100% and help you
get through this.

I certainly hope I didn't upset you with what I've said here, as that
was certainly not my intention...but I try to be honest with people
feeling as though if you're asking, then you want both sides of an
issue, and you want facts or you wouldn't be here.
Take care there dear/God bless you
annie
p/s I'll be more then willing to put the "Len's Crafters Coupons" in the
mail, now that you're probably half blind having to read this post...
   

Ultimately.....we know deeply that the other side of every fear is a
freedom.

"Courage"...is *fear* that has said it's prayers.
Joan Kaapke - 10 Mar 2004 19:42 GMT
> Joan..
> Welcome to the clu no one wants to join...but glad to have you. I hope
[quoted text clipped - 51 lines]
>
> "Courage"...is *fear* that has said it's prayers.

It has been a difficult decision for me to make, but I am now more
comfortable with the lumpectomy decision.  So many of my friends have
survived more than 6 years with this procedure, and radiation.  I had a dear
friend who died 5 years ago, as her cancer came back, after a remission of
10 years.  Originally she had a mastectomy, radiation and chemo.  She died
after a long and devastating treatment of more chemo; her heart was damaged
by the treatment.  So I know it could come back, no matter which treatment I
elect right now.

God bless you Annie, and thanks for writing.

Joan
Kaye301 - 10 Mar 2004 20:00 GMT
Hi Joan--a belated welcome to the newsgroup everyone here would rather not have
to be (I think that makes sense--gramatically)
I have read your posts and am very impressed by all that you've done and are
still doing.  I won't go into the details of my b.c. only to say that I was
dx'd with 3 types of very aggressive b.c.  3 years ago (woke up in the wee
hours of my 50th b'day with a burning pain in my breast and 10 days later my
nipple started changing).  I have been in treatment of some kind ever since but
seem to be doing okay at the moment--I think.
I have learned that there is no one 'right' treatment for all.  Each of our
cancer's are different.  What works for one may not work for the next.  It
sounds like you  have been doing your 'homework' and will be able to make an
informed decision that appears to be 'right' for you at this time.
I wanted to share 2 stories of women I know who have been dx'd with b.c. in
their 'later' years.  One is my husband's aunt--dx'd age 75 with b.c. with mets
to her abdomen, uterus, colon, and one other place which I can't recall.  She
opted for a lumpectomy and radiation and refused any further treatment because
she was concerned about the quality of her life based on her memories of past
cancer treatment.  She was a former nursing instructor whose memories of
treatment were somewhat out-dated.  Still, after her treatment--lumpectomy and
radiation, she went for repeat scans.  Lo and behold they could find no further
evidence of cancer.  She refused to believe them and sat around waiting to pass
on.  This continued until her daughter said to her--"look ma, you're gonna die
(someday) but it's not going to be from cancer."  She had a spontaneous
remission which is generally very rare.  She finally decided to get on with her
life and has--starting a business and being very active.  She is now 80 and is
still doing well.  I must say, though, that around this time she also switched
from pill to control her type II diabetes to insulin injections which may have
been what helped her have this spontaneous remission.
Then another friend of ours mom--who is in her late 70's was dx'd with b.c.  I
can't recall whether she had a mastectomy or lumpectomy.  She did have
radiation but also chose no  chemo and has been okay--she is 2 years out.
Although the above women did not have chemo, it is being offered to older women
now, in many cases.  Older women generally have much slower growing cancers, in
general, and may do welll with less aggressive treatments.  Research findings
indicate that as a group they do just as well as younger women.  Chemo is alot
easier these days with the new anti-nausea drugs.  
Wishing you all the best with whichever way you decide.  Take care and
{{{hugs}}}
Joan Kaapke - 10 Mar 2004 23:32 GMT
> Hi Joan--a belated welcome to the newsgroup everyone here would rather not have
> to be (I think that makes sense--gramatically)
[quoted text clipped - 34 lines]
> Wishing you all the best with whichever way you decide.  Take care and
> {{{hugs}}}

Thank you so much for writing.  There a lot more options today, and new
trials under way.  Chemo has been my greatest dread, but as you say, some do
well without it.  I found an interesting item in a newsletter from the
Anderson Cancer Center in Huston.  It was about a patient who had surgery
for breast cancer at the center 10 years ago.  She is now 103, and comes in
once a year for a check-up.  I was amazed!  They claim she is doing fine.

My very best to you, and to everyone here.

Joan
bell-lady - 11 Mar 2004 01:35 GMT
Joan,

I was diagnosed with non-Hodgkins lymphoma (cancer of the lymph system) in
1983 and took chemo. It was absolutely horrible. And in 2001, 20 years
later, diagnosed with breast cancer. Opted for the lumpectomy with mandatory
radiation (I'd never had rads before, they were harmless but used up about
an hour a day including travel, definitely not a problem for me, nor others
who were there with me in the cancer center. None of us had problems.).
Turns out I did need chemo again, even with <2cm tumor, clean margins and no
lymph node involvement; DCIS 75% invasive. And y'know what? After 20 years
I'd actually remembered only the 'good' (if I may call it that) part of
chemo...the mental image of how it travels around your body like Pacman,
munching up and destroying those baddie cancer cells! I think I actually
'felt' like I was getting better as I took chemo this time, and probably
would have felt less likely to fully recover if I had NOT taken chemo!
Weird. Chemo now has improved 1000% over 20 years ago - they have newer less
damaging chemicals, and more control over dosage with experience. It's not
nearly as bad as it was then. Tiring. Bit sickening, but not terribly so.
Achy. But I returned to work at my home business after a day or two of
sleeping it off. Lost weight cause I seemed to like only food thats actually
good for you - stuff I usually don't each much of, and fatty stuff tasted
terrible.

I do tend to have rose colored glasses for things once they are over. Others
may be more realistic. But do look for the positive. Those chemo pacmen
really do a good job - I lasted 20 years after the first round - and going
on 3 years this time, and feeling great.

I wish the best for you and send {{hugs}}} to wipe away the fear and
uncertainty. Let your 'higher power' influence your mind to the choices best
for you and your loved ones.

Ann in PA, now 57 and counting on reaching at least 80!
Joan Kaapke - 11 Mar 2004 03:46 GMT
> Joan,
>
[quoted text clipped - 29 lines]
>
> Ann in PA, now 57 and counting on reaching at least 80!

What a great letter, Ann.  It is so encouraging.  I guess I am just
remembering how terrible it used to be, and the friends I have lost because
of the heart damage they suffered during chemo; also the suffering with
weakness and nausea; the loss of hair and even fingernails.  It is so good
to hear from someone who has been through it, and is feeling great.  Bless
you!

Joan
Mary Fisher - 11 Mar 2004 11:34 GMT
> Joan,
>
[quoted text clipped - 29 lines]
>
> Ann in PA, now 57 and counting on reaching at least 80!

Ann, this was a brilliant post, I wish there were more happy and positive
accounts of experiences like yours.

Mary
bell-lady - 14 Mar 2004 23:40 GMT
>Ann, this was a brilliant post, I wish there were more happy and positive
accounts of experiences like yours.

Mary
Thanks, Mary. I'm sure we all have days when that is our perspective. That
was one of many I have, but there are also down days. It'd be interesting to
take all my posts and read them chronologically...I sure I'd seem a bit
manic/depressive!  But more good than bad days. I find the bad days are when
I'm in pain from something...I've had good pain treatments lately and riding
a happy wave, with a rosy view of the past...that's how I'd LIKE to remain
:-)) As my husband always reminds me, getting older (with all the side
effects) is better than the alternative...

Best wishes to Joan tomorrow...

Ann in PA
Kaye301 - 11 Mar 2004 06:31 GMT
Joan wrote: << Chemo has been my greatest dread, but as you say, some do
well without it.  I found an interesting item in a newsletter from the
Anderson Cancer Center in Huston.  It was about a patient who had surgery
for breast cancer at the center 10 years ago.  She is now 103, and comes in
once a year for a check-up.  I was amazed!  They claim she is doing fine.

I also dreaded chemo but much to my surprise it was alot easier than
anticipated which I attribute to the new anti-nausea drugs.  I had 3 relatively
easy pregnancies, and I must say that chemo was even easier than those.  I
wasn't expecting it to be easy either.  I was tired for a couple of days but
still it was much easier than the worst days of a bad cold.  I was tired--bone
tired--on one or two days and forced myself to exercise.  That helped quite a
bit--stimulated the endorphins which eased and/or masked much of the discomfort
and fatigue.
As for the woman who is now 103--did she have chemo?  As far as radiation,
except for the inconvenience of doing it daily, it wasn't any big deal.
However, I only had 25 treatments (after bilateral mastectomy) and did not have
the boost.  I was instructed to slather on 100% aloe vera gel several
times/day--except for 2 or 4? hours before each treatment.  I had minimal
problems with burning.  Today they don't use the cobalt treatments that were
done in the past--at least most don't have those anymore.
Joan Kaapke - 11 Mar 2004 16:03 GMT
> Joan wrote: << Chemo has been my greatest dread, but as you say, some do
> well without it.  I found an interesting item in a newsletter from the
[quoted text clipped - 10 lines]
> bit--stimulated the endorphins which eased and/or masked much of the discomfort
> and fatigue.

I am so glad to hear that.  I don't know yet if I will need it, but it is a
possibility, depending on the test results.

> As for the woman who is now 103--did she have chemo?  As far as radiation,
> except for the inconvenience of doing it daily, it wasn't any big deal.
[quoted text clipped - 3 lines]
> problems with burning.  Today they don't use the cobalt treatments that were
> done in the past--at least most don't have those anymore.

The newsletter from Anderson did not say what treatment she received.  They
just made the point that older people should also be treated, and there is
still value and quality to their lives.
Does each radiation treatment last very long?  Do you feel well enough to go
out for lunch afterward?

Joan
A. P. Thorsen - 11 Mar 2004 17:09 GMT
> Does each radiation treatment last very long?  Do you feel well enough to go
> out for lunch afterward?

Hi, Joan -- welcome!

The first radiation appointment is usually longish (hour or so), because
they do "simulation" -- map out your treatment areas & such.  After
that, they're quite quick -- maybe 10 minutes tops.  It takes almost as
long to change into & out of the gown thingie as it does for the actual
treatment.  And for most of us, the treatment itself doesn't feel like
anything is happening -- you lay on a table in various weird positions,
the machine buzzes at you for a bit, then you're done.

I was usually in & out of there in half an hour or thereabouts,
including the waiting room phase.

Any burning effects are cumulative, not immediate, so -- for those who
even have burns -- they usually occur in the later weeks of the
treatment.  I had a little burning (no worse than my worst sunburn) in
the last week or so; that was it.  Don't believe everything you hear
about light skin tone guaranteeing burns -- I'm naturally about the
color of skim milk, and didn't have major problems.

I went to radiation from work, and straight back afterwards . . . well,
usually I picked up a nice middle-eastern-deli lunch on the way back to
work, so yes, you'll almost certainly feel up to lunch afterward!

What you hear & read about breast cancer treatment usually makes it
sound worse than it is for most of us:  Horror stories are more newsworthy.

Best of luck with it,

Ann T.
Remove 'dontsendspam' from address to reply by email
Joan Kaapke - 11 Mar 2004 17:18 GMT
> > Does each radiation treatment last very long?  Do you feel well enough to go
> > out for lunch afterward?
[quoted text clipped - 30 lines]
> Ann T.
> Remove 'dontsendspam' from address to reply by email

Hello, Ann.  That's great information; I think I can handle that just fine.
I don't know if a glass of wine with lunch is permitted, but if not, it is
good to know I can still eat out.  We do that a lot; I am not a good cook.

With best wishes, Joan
Mary Fisher - 11 Mar 2004 19:56 GMT
> Hello, Ann.  That's great information; I think I can handle that just fine.
> I don't know if a glass of wine with lunch is permitted,

Of course it is! If you can stay awake in the afternoon after wine - I don't
drink during the day because of that!

> but if not, it is
> good to know I can still eat out.  We do that a lot; I am not a good cook.

Time to learn then!

Hugs,

Mary

> With best wishes, Joan
Joan Kaapke - 11 Mar 2004 21:26 GMT
> > Hello, Ann.  That's great information; I think I can handle that just
> fine.
> > I don't know if a glass of wine with lunch is permitted,
>
> Of course it is! If you can stay awake in the afternoon after wine - I don't
> drink during the day because of that!

It doesn't make me sleepy; not one glass.  It does lower my blood pressure.
The only normal reading I got last week was the one day I had a glass of
wine; then later took my pressure.  My sister says I should carry a flask
around with me to my doctor's appointments, as I have white coat syndrome.

Joan

> > but if not, it is
> > good to know I can still eat out.  We do that a lot; I am not a good cook.
[quoted text clipped - 6 lines]
> >
> > With best wishes, Joan
Mary Fisher - 11 Mar 2004 19:54 GMT
> Does each radiation treatment last very long?

No.

>  Do you feel well enough to go
> out for lunch afterward?

Yes.

Well, in my case yes. I was told that whatever else happened I'd be
exhausted so I made a list of Things To Do While Feeling Tired And Sitting
Down.

I still haven't done them ... and I know I'm not alone in not experiencing
tiredness. It seems to be cumulative anyway and not really bad.

The swelling and burning (like bad sunburn) were the only effects and I
should have used aloe vera but I didn't. I set off every morning at 8 am
(don't normally get up until after that) to drive myself to the hospital
then I had the rest of the day for myself. It really was good. I'm going
again tomorrow to the lympho clinic there, it's where I had my recent bone
scan and I like the journey and the hospital so it's a pleasure, I have no
bad feelings about the place. Didn't at the time of my radio either, it's a
fascinating procedure.

Mary

> Joan
Joan Kaapke - 11 Mar 2004 21:31 GMT
> > Does each radiation treatment last very long?
>
[quoted text clipped - 20 lines]
> bad feelings about the place. Didn't at the time of my radio either, it's a
> fascinating procedure.

The aloe vera sounds like a good idea.  I will try it.  I am glad you are
doing so well, and have such a good attitude.  I don't fear the scanners; I
had those before with colon cancer in 1978.  I remember bone and liver
scans.

Joan

> Mary
> >
> > Joan
Kaye301 - 12 Mar 2004 04:12 GMT
Joan wrote: << The aloe vera sounds like a good idea.  I will try it.  
>><BR><BR>

I was told  to use 100% pure, clear (color-less) aloe vera gel which they sold
at the hospital pharmacy--but can also be bought at Longs Drugs or Walmart.  I
was told to put it on often--every couple of hours--put alot on EXCEPT  I
wasn't supposed to use it for about 4 (or was it 2 or 3) hours BEFORE
treatment!
In addition--you cannot use regular deodorant.  I was given a special deodorant
to  use--but didn't need it since I had stopped perspiring under my arms...
Kaye301 - 12 Mar 2004 03:53 GMT
Joan wrote:<< Does each radiation treatment last very long?  Do you feel well
enough to go
out for lunch afterward?>>

Each treatment was no more than about 5 minutes--if that long.  I  went out to
lunch after and/or before each.  Our health care facility has one main facility
for rads which was about 45 miles from my home.  I could either drive to
treatment myself which I did half the time or drive to  the facility where I
got most of my treatment which was 20 miles from where I live.  From there they
would bus us to the main facility in a small, air conditioned bus.  We would
stop at another of the facilities to pick up more.  That was alot of
fun--developed alot of camraderie--and we always had a great time--shared
jokes, etc.  Then on our last day of treatment--each would bring a treat for
all the others.  
I found I was a little more tired when I rode the bus--but bus rides always
made me tired.  The first day after rads I was a bit sleepy--felt just like I
would have if I lay in the sun for 10 to 20 minutes.
Funny you should ask about lunch--just thought I'd add that after my heavy
chemo (AC) my husband and I would go out for a nice lunch.  The only thing that
seemed to bother me was spicey foods.  Of course the treatments did have a
cumulative effect--but they weren't as bad as I expected.  I had bought all
kinds of special foods--organic baby food and stuff like that--but didn't need
them.  They have fantastic anti-nausea meds available today.
Joan Kaapke - 12 Mar 2004 07:10 GMT
> Joan wrote:<< Does each radiation treatment last very long?  Do you feel well
> enough to go
[quoted text clipped - 10 lines]
> jokes, etc.  Then on our last day of treatment--each would bring a treat for
> all the others.

That really sounds like fun, to have others with you on a bus.  Here, I am
only about 10 miles from the medical center.

> I found I was a little more tired when I rode the bus--but bus rides always
> made me tired.  The first day after rads I was a bit sleepy--felt just like I
[quoted text clipped - 5 lines]
> kinds of special foods--organic baby food and stuff like that--but didn't need
> them.  They have fantastic anti-nausea meds available today.

There must be a great improvement in chemo.  My friend who died 5 years ago
had such nausea she had to be hospitalized.  It was really terrible.  So
your experience is helpful in knowing it may not be that bad today.
At this point, I don't know if I will need chemo; the doctor says I may not,
or that other drugs would be prescribed instead.
 I also thank you for the tips on using aloe vera, and deoderants.  I had
wondered about that.

Joan
A. P. Thorsen - 12 Mar 2004 16:43 GMT
> There must be a great improvement in chemo.  My friend who died 5 years ago
> had such nausea she had to be hospitalized.  It was really terrible.  So
> your experience is helpful in knowing it may not be that bad today.
> At this point, I don't know if I will need chemo; the doctor says I may not,
> or that other drugs would be prescribed instead.

I think it's not so much the change in chemo (though that's improved
notably in effectiveness over the years) that makes the chemo experience
easier -- it's that they've greatly advanced in controlling side
effects.  If you do have to have chemo, they typically have a set of
medications that you take, either by IV with the chemo, or before/after
in pill or injection form, that control the side effects.

Truth in advertising compels me to say that there is a lot of individual
variation in response, still -- many tell stories about (e.g.) eating
cheeseburgers after chemo and being totally fine, but I had a
worse-than-typical experience on AC (Adriamycin/Cytoxan) chemo.  Even
so, it was not "the worst experience of my life" or anything.  It was
more like having a bout of stomach flu on a predictable once-per-3-weeks
schedule.  Quite manageable, even though not too recreational!

We'll hope chemo won't be necessary for you, which eliminates the whole
question.  But, if it is necessary, I'd expect you'll find it doesn't
measure up to your worst fears about it.

Best wishes,

Ann T.
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Joan Kaapke - 12 Mar 2004 23:55 GMT
> > There must be a great improvement in chemo.  My friend who died 5 years ago
> > had such nausea she had to be hospitalized.  It was really terrible.  So
[quoted text clipped - 25 lines]
> Ann T.
> Remove 'dontsendspam' from address to reply by email

Thank you, Ann.  I go to the surgeon Monday PM, and will start on tests and
then treatment.  I saw my family doctor today, who did an EKG because my
blood pressure is so high, and has been for a long time.  She says it was
borderline; that it shows I may have had a silent heart attack in the past.
She gave me more pills to take, so I can almost open my own drug store now.
I think I can deal with chemo if I must, after the encouragement I have
received here.  I am learning a lot, so am not as afraid as I was the day I
got the bad news.  I am quite anxious now to get it over with, and get back
to a normal life.  I hope my hypertension won't complicate, or delay things,
but will ask the surgeon on Monday.

Joan
Mary Fisher - 13 Mar 2004 10:14 GMT
> I think I can deal with chemo if I must, after the encouragement I have
> received here.  I am learning a lot, so am not as afraid as I was the day I
> got the bad news.

Understanding really DOES help ...

>  I am quite anxious now to get it over with, and get back
> to a normal life.

That's the way!

>  I hope my hypertension won't complicate, or delay things,
> but will ask the surgeon on Monday.

Let us know.

Hugs,

Mary

> Joan
Meooww - 16 Mar 2004 07:37 GMT
> > Truth in advertising compels me to say that there is a lot of individual
> > variation in response, still -- many tell stories about (e.g.) eating
> > cheeseburgers after chemo and being totally fine, but I had a

Go Maccas - I used to eat two big macs and two big fries after chemo.

Mind you, following day I was back to grazing naked in my garden - finding
the strawberries and snow peas and cherry tomatoes and runner beans !!
 
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