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Author |
Topic: Choosing Radiation |
rosie
Contributing Member (25+ posts)
Member # 384
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Hi everyone,
My 28 year old, non-smoking daughter has Stage 4 tongue cancer.
She was diagnosed in August, had surgery Sept. 4th and is
going to start radiation soon. MAYBE going to start soon.
I have been reading on this forum for hours and we're not
so sure now what the best course of action is.
The surgeon was very aggressive and is confident he got the
entire tumor. The margins are all clean. The grade is well-differentiated,
there is no necrosis, no vascular or perineural invasion noted,
no evidence of tumor multicentricity and no in situ carcinoma.
So far, it all sounds good.
Now, the bad part. He did a neck dissection and of the 15
lymph nodes removed, 4 were positive. The largest node is
1.2 cm. Her staging is T2, N1, MX. We will have results of
a lung and liver scan soon, which will determine the new "M"
status.
The recommended treatment is 6 1/2 weeks of the highest dose
radiation possible. Since she is young and in otherwise good
health, they feel she can tolerate the high dose. However,
after consulting with specialists at John Hopkins and Sloan-Kettering,
they are not recommending chemo. They say using it gives no
extra advantage.
I'm wondering what your thoughts are. At first, we said yes
to the most aggressive treatment available. Now, she is having
second thoughts. She is not so sure she can live with the
reduced quality of life that seems to be the norm after massive
radiation. Of course, we understand she can't sit back and
do nothing. But would it be plausible to have a lower dose
of radiation to minimize some of the long-term effects and
do the chemo to "make up the difference", so to speak?
The after effects of the radiation can be so severe. She's
wondering if it is really worth it.
She's been pretty positive so far, but this really has her
down.
I would appreciate input from anyone, but getting the opinions
of Stage 3 or 4 survivors would be great. Has anyone ever
refused the radiation or chemo and just gone with the surgery?
Has anyone tried alternative therapies? I don't think she'll
refuse the radiation altogether, but she's starting to lean
in that direction and that scares the ___ out of me!
Thank you in advance,
Rosemary
Posts:
43 | From: Central PA | Registered: Oct
2002 | |
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Brian
Hill
Administrator
Member # 4
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Your doctors comments ring true about the marginal benefits
of the chemo regime. Please do not try to second guess them
and opt for some unproven partial radiation partial chemo
regime. These standards and protocols have been established
by multi-center clinical trials over the years, and they are
the gold standard by which all other treatments are judged.
I have had the maximum doses of radiation that can be given
at age 49. They had to quit before completely eliminating
my late stage tonsilar and cervical node cancer, as my spinal
cord (within the radiation field) had received the maximum
dose before it would likely be permanently damaged. Four years
later I can tell you that the treatment is tough, and the
1-year recovery afterwards was tougher. But my life now is
practically normal. Yes I have xerostomia, but my water bottle
is as natural a part of my routine and my left hand as a watch
or wedding ring. I have few limitations in my eating habits,
other than things that are extremely dry are off the menu.
Life is good. My speech, diction, swallowing are relatively
normal. My taste buds never came back 100%, with a lacking
in the sweet area, but on the positive side, that has curbed
my desire for tons of chocolate, ice cream etc. which weren't
good for me anyway. I have no disappointments in my current
diet. While concern of effects is certainly something that
will be on your minds, primary recovery and elimination of
the cancer is goal number one; 5-year survival is goal number
two. Living with the long term effects of radiation treatments
should not be your concern right now.... just get goal 1 and
2 out of the way. There are ramifications to every treatment.
But they will seem small as a new life opens up where the
previous one was in jeopardy. My best wishes for a speedy
treatment and recovery.
--------------------
Brian, stage 3 oral cancer survivor. OCF Founder and Director.
"The first responsibility of a leader is to define reality.
The last is to say thank you. In between, the leader is a
servant."
Posts:
367 | From: Laguna Beach, CA | Registered:
Mar 2002 | |
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kcdc
Platinum Member (100+ posts)
Member # 307
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Rosemary:
a short post here because I am on the way to work but sensing
your anxiety. Radiation treatment is a MUST and is the tried
and true protocal for follow-up care especially if you have
nodal disease.
The debate is really about the advantage of adding chemo too
and from the research I have done it does seem like you daughter
might be a candidate.
Sounds like you need to see at leats two different heme onc
docs to get their opinions on the chemo piece of the puzzle.
I doubt you will find anyone who advocates for skipping the
radiation. Instead, you might find a debate about standard
radiation versus IRMT (see area on this site that explains).
Dave starts radiation this morning and we are both also scared
shitless (can you say that here?) about reducing his quality
of life but we recognize that it is a proven and necessary
course of action.
We have checked out some compimentary modalities and I'll
write more later.
Hang in there,
Kim
--------------------
kcdc
Posts:
127 | From: Boston, Ma | Registered: Aug
2002 | |
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CynthiaS
Senior Member (75+ posts)
Member # 161
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Rosemary,
Adding my two cents to the discussion. My mother is 71 with
stage 4 oropharygeal cancer. She has had 7600 rads to the
neck and 5 treatments of cisplatin and 1 treatment of carboplatin.
You can not determine the radiation dose by the length of
time. Most patients have a treatment of 6 to 7 weeks but that
does not mean they have the same amount of radiation. You
have to ask the doctor or tech what the daily dose is to determine
total dose.
As far as chemo, this is a relatively new addition to the
mix so many oncologists are leary about using it and there
really is not enough information available yet to make a conclusive
decision. Unfortunately, patients are left to read the opinions
of specialists, ask others as you have done and draw their
own conclusions. But one must remember this - radiation has
it's place for local tumor control but when there is systemic
involvement (i.e. lymph or blood) you have to employ another
modality. In this case, it would be chemo. So as Brian pointed
out, this can not be treated piece-meal if you want the maximum
control of tumor spread.
All things considered, 6 weeks post treatment, my mother is
doing O.K. She has not had her neck dissection yet so is behind
your daughter in that respect. And we are not sure she will
have one because she also has a lung lesion that needs to
be addressed.
In your daughter's case, one has to consider that she is stage
4 and what the probabilities of a long-term survival are using
the modalities available. Some of the decision will be based
on your daughter's personal feelings with the assistance you
are trying to provide.
I'm sure you have learned that the role of family members
is to act as a cheerleader for the patient. It can be difficult
and tiring but we have to remember that the ultimate decision
is should be made by the patient.
Best wishes to you and your daughter.
Cynthia
Posts:
79 | From: Florida | Registered: May
2002 | |
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Dinah
Platinum
Member (100+ posts)
Member # 203
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Rosemary,
I too have had a neck disection followed by 8 weeks of radiation.
Yes, I was starting to feel pretty run down the last couple
of weeks and a bit discouragred, but then it was over and
the healing begins. It is slow but everyday is a little better.
Like Brian, I lost the chocolate part of taste buds and still
have trouble with spicy. Dry mouth is something that's just
a part of my life now and not really a bad thing because it
can be managed.
And I really don't know to this day if I realized how bad
I was feeling until I started feeling better. It does get
better - the energy returns, the appetite returns and as trite
as it is to say, there is a new appreciation for things.
My doctors also went with the standard of radiation and surgery.
When I asked after why no chemo I was told all the results
weren't in yet on how much more effective they are in combination.
But they were harder on the body in combination.
As I'm sure they told your daughter and keep telling me "you
are young and healthy" so the aggressive approach is the way
to go.
Best of luck and we all undersstand the fear of the treatment,but
hope that she can overcome that and get on with the priority
of curing the cancer.
Take care,
Dinah
Posts:
113 | From: Texas | Registered: Jun 2002
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kcdc
Platinum
Member (100+ posts)
Member # 307
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Rosemary:
I did think of one additional point to share driving into
work today and I share it not to scare you but to hopefully
aid in your decision making process about the value of post-op
radiation after neck dissection.
As it was explained to us by Dave's surgeon, the number of
nodes removed from people during neck dissection varies as
does the number that can be visualized and fully assessed
in a surgical specimen. For example, your daughter had 15
nodes removed and identified and 4 were noted to be positive.
Dave had >30 removed and one was positive. It is not uncommon
for there to be variability...
The surgeon explained that there are also often more nodes
in a surgical tissue sample than can be identified and assessed
on the final report because some are so minute they can't
be separated out from the tissue.
That said, he also explained that you can never be 100% sure
you got a "completely clean" neck dissection (although most
experienced head and neck surgeons can give you a play by
play about how well they think they did and how confident
they feel about the surgery based on their experience doing
so many of these procedures).
So, the long answer here is that radiation therapy acts as
a vehicle to erradicate any microscopic disease left in the
tissues themselves and in any "teeny tiny" nodes that may
have been inadvertently left behind during surgery because
they couldn't be seen.
Caveat to Brian-I am repeating what Dave's surgeon told us
when we inquired if he "really needed " radiation. Please
feel free to help me out if my explanation needs your expertise
to further clarify.
Thanks,
Kim
--------------------
kcdc
Posts:
127 | From: Boston, Ma | Registered: Aug
2002 | |
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rosie
Contributing
Member (25+ posts)
Member # 384
|
Everyone,
Thanks for all the info so far. We talked to the rad. onc.
again today and are awaiting a return call from the chemo
onc. Heather is feeling a little more comfortable with the
suggested treatment, but we need a few more answers yet. They
were actually wanting to start her radiation tomorrow, but
we don't think a few days delay should hurt. Hoping so anyway.
She has seen a dentist, but they haven't made the tray yet.
Is it wise to start radiation before she starts using the
tray? Also, part of why she was so scared of the
radiation was because we were told she would be getting the
highest possible dose. We were just told today the dr will
be shooting for a total in the mid-6000 range. I've read posts
from people that had 7600, so how can hers be the highest
possible? Everything is just so confusing and contradictory.
Any info is welcome at this point. Thanks, Rosemary
Posts:
43 | From: Central PA | Registered: Oct
2002 | |
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Brian
Hill
Administrator
Member # 4
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kcdc....your posts are so thorough that there is nothing I
can add to your comments, they are clear, complete, and accurate.
rosie.......in stage four cancers, DAYS DO COUNT. What is
worth the postponing of radiation treatments and courting
further risks by delaying killing this cancer? You need to
be moving forward quickly as this cancer has already had an
opportunity to begin distant metastasis. This disease moves
very quickly once it is in the lymph system, which is connected
to all other parts of your body. Please read the page on metastasis
of cancers in the main site if this picture is not completely
clear to you. The lymph and circulatory systems are the high-speed
autobahn for cancer cells to move to other areas of the body.
A stage four patient is at extreme risk. I want to be supportive
here, but in reading your first post regarding possibly not
choosing the most aggressive treatments because of the side
effects, I must say that your perspective seems irrational
to me. This is not about side effects. Survival rates over
5 years for stage four patients are not good. That's pretty
blunt, but true, said to get your attention. You need to be
thinking about the most aggressive things you can do to ensure
that 6 years from today the person you care about and love
is still here. You will never get "enough" information to
make a black and white definitive decision about treatments,
you are going to have to trust the medical professionals who
have been engaged to save your daughters life, and you and
she need to do that now. In the last month OCF has lost 6
of our original members from a year ago, all with late stage
cancers, and our membership is small in comparison to the
number of oral cancer patients in the US. Please feel my sense
of urgency about all this. You can beat the statistics. But
you must act aggressively and definitively in a timely manner.
As to the trays, they become the most important when the saliva
begins to go... that will be after a week to 10 days (approximately)
of treatments. If it were me, I would start treatments and
get my trays delivered during the first week. If the dentist
cannot meet your schedule, get someone else. Trays take a
simple 10-minute alginate impression in the chair and then
a master cast is poured from stone into that impression, (30
min), finally they are made in a vacuum-forming machine by
the lab tech in about 20 minutes. There is more at stake here
than his schedule. Be as assertive as necessary to get what
you need right now.
--------------------
Brian, stage 3 oral cancer survivor. OCF Founder and Director.
"The first responsibility of a leader is to define reality.
The last is to say thank you. In between, the leader is a
servant."
Posts:
367 | From: Laguna Beach, CA | Registered:
Mar 2002 | |
|
kcdc
Platinum
Member (100+ posts)
Member # 307
|
Rosemary:
I echo Brian's eloquent remarks above. Every minute counts
in late stage cancers with nodal involvement, especially when
there more than one involved. Think of it as an equation...for
every node involved the urgency factor goes up as does the
speed of information gathering (this part is awful!) and the
number of options to explore. In a weird way, clients with
Stage 1 and Stage 4 cancers have more direct options (such
as adding chemo) than those is Stage 2-3 where the "gray zone"
looms large and rampant debates ensue over amount and type
of radiation and the value of chemo.Thsi is partly why you
are hearing our take about being assertive and getting as
many opinions as you need to feel comfortable with your treatment
choices.
I share your sense of being overwhelmed-Dave and I are both
nurse practitioners and we feel consistently overwhelmed.
But, Brian is on the money-you love Heather and if you can
help co-pilot the bus she is driving toward wellness you will
be offering her the best you can as someone who has cared
for her well being since infancy.
I think it is good that your pursued the heme/onc route. I
strongly endorse asking for adjuvant chemo and if not, ask
for solid rationales as to why not. Heather does seem to be
a solid candidate for Cisplatin and her previous good health
and age support her tolerance of what will surely be a tough
regime.
As for the dental trays, Dave went for his exam and impressions
and received the trays within a week.Don't let that hold up
starting treatment. The key question to ask the dentist is
also if he/she is comfortable following Heather during the
course of the treatments when some expediency might be required
if she develops a dental issue during treatments. We found
that having a dentist (just like an ENT ) who is well versed
in oral cancer diagnosis and treatment protocals is essential
to the process.You also haven't shared what kind of surgical
procedure Heather actually had but make sure the dentist is
comfortable navigating the landscape of her post-surgical
mouth. ASK! ASK ! ASK!
I'm thinking it might also be helpful if you give us a bit
of background about Heather's diagnosis and her surgical course.
Do you have one MD who is is charge of coordinating care?
Another thought- ask to meet with a radiation oncology nurse
and/or an oncology nurse practitioner who specializes in pain
control during treatment. He/she can also address the psychosocial
side of living with cancer as a young adult and help her stay
emotionally afloat during the treatment process.
Many nurses also do therapeutic touch and massage therapy
which is helpful both physically to reduce neck swelling but
psychologically.
Hang in there...we'll help you through it,
Kim
--------------------
kcdc
Posts:
127 | From: Boston, Ma | Registered: Aug
2002 | |
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rosie
Contributing
Member (25+ posts)
Member # 384
|
Thank you all.
Heather will be starting RAD Monday. I feel chagrined now
about delaying the few days. I'm beginning to think that I
shouldn't have done so much research. Although, if days are
so important, I'm wondering why we didn't meet with the oncologists
sooner. We weren't given a sense of urgency by the surgeon.
Don't get me wrong, he is an excellent surgeon. Everyone says
he is the best in our area. But I'm thinking he should have
set us up to see the oncologists sooner. Even if she wasn't
healed enough to start RAD, we at least could have had the
options presented and decisions made earlier.
Anyway, although she does have nodal involvement, and I do
understand the severity of this, we are holding on to the
fact that the largest node is only 1.2 cm, there is no perinodal
extension, no vascular or perineural invasion, no tumor necrosis
or multicentricity, it is well differentiated and the mucosa
is non-neoplastic. Now I understand the basics of all this,
but I have no idea which of these diagnoses have the most
impact. Does the fact that 4 nodes are involved mean the rest
of the data is relatively meaningless?
She did have a neck dissection so the affected nodes were
removed. Can we at least have a little hope that it hadn't
spread beyond that area yet or is that mostly a false hope?
How true is it that this cancer is more aggressive in young
people, therefore the chances it has spread further already
are high?
Just as a recap, she first had pain in May, nothing was visible
to the dentist in June (and he does do an oral check at every
cleaning), nothing was visible to the GP in June or July,
nothing was visible or palpable to the ENT the beginning of
August, a CT scan showed nothing, but by the time the CT results
were in, about a week, the tumor was visible & palpable. That
sounds like it had a real fast spurt of growth and I'm assuming
that is not a good sign.
Her CT scan of the chest and abdominal area are back and they
are negative. But since nothing at all showed up on the original
scan of the head and neck, how can we know it isn't in the
nodes on the other side of the neck? They didn't re-scan that
area. The RAD oncologist did want to radiate both sides of
the neck, but the medical onc. doesn't seem to think that
is necessary. And given the almost 100% chance of zerostomia,
Heather is reluctant to do both sides. They will be giving
her amiphostine, but it will be of no help if she can't tolerate
it.
The doctors are sticking by the idea that chemo given with
the RAD is not of enough benefit to be warranted and that
the increased side effects are not worth the negligible benefits.
We will be looking at maybe doing a chemo wash afterwards.
We are still confused by this issue, but in order to get the
RAD started, we had to make a decision.
I guess only time will tell if it was the right one.
Kim, I don't have the report in front of me, but basically
her surgery consisted of removing a small portion of the back
of her tongue (the tumor itself wasn't on the mobile tongue,
but on the base), removing 2 teeth because it was very near
the gum (it did not invade the bone), removing the 3 cm tumor
and doing a left neck dissection. The path report shows that
a 2.4 x .3 x.3 cm piece of anterior tongue was negative for
carcinoma. The dental margin was also negative. It was 2 pieces
each .8 cm in greatest dimension.
The neck dissection included the submandibular gland and was
16.2 cm long and varied in diameter from .8 to 4.0 cm. The
submandibular gland was okay. The partial glossectomy measured
5.0 cm from anterior to posterior, 3.2 cm lateral to medial
and varied in depth from 2.0 up to 3.5 cm. All the margins
were negative for carcinoma. Now I understand most of what
I just wrote. The rest is about the tumor itself, but it is
a little murky. I am going to put it exactly as stated in
the path report. Any enlightenment would be appreciated.
"Centrally located on the mucosal surface is a depressed area
with a friable gray ulcerated lesion measuring 3.0 cm from
anterior to posterior and approx. 1.4 cm from left to right.
Anterior to this lesion is a firm white plaque-like area measuring
up to 1.5 cm in greatest dimension. This white plaque is located
3.0 mm from the resected anterior mucosal margin. Located
2.0 mm from the sutured dental margin is a glistening tan
raised nodule measuring 1.5 x 1.0 cm."
What do the white plaque-like area and the tan raised nodule
mean?
We do not have an MD coordinating everything. We have just
been referred from the surgeon to the medical oncologist to
the RAD oncologist. We have talked to an onc. nurse and have
been given lots of info about pain, feeding tube, importance
of nutrition, maintaining weight, etc.
I'm sorry this post is so long. If you got this far, thanks!
Rosemary
(I should change my member name. Don't know why I picked Rosie,
haven't been called that for years except by my Mom and sister.)
Posts:
43 | From: Central PA | Registered: Oct
2002 | |
|
rosie
Contributing
Member (25+ posts)
Member # 384
|
Correction. I should have said I don't have the surgical report
in front of me. I obviously did have the path report! Just
trying to make myself look like a genius quoting all those
figures off the top of my head! Ha!
Posts:
43 | From: Central PA | Registered: Oct
2002 | |
|
kcdc
Platinum
Member (100+ posts)
Member # 307
|
Rosemary:
I am going to QUICKLY jump on one thing that leaps out at
me from your post then will review the rest and respond later.
It is ESSENTIAL in late stage cancers to radiate both sides
of the neck down to the level of the clavicle!!In fact, even
in earlier stage oral cancers involving one side of the neck
(like in Dave's case), radiation to both sides is standard
protocal.
In fact, most survivors and radiation oncologists will tell
you that it is recommended because the highest incidence of
re-occurence is local (the original area and the other side
of the mouth/neck).
Please, Please, Please check again-I am hoping Brian will
weigh in with his opinion but the research I have done and
the oncologists
( surgical, radiation, & medical) all agreed(I swear the one
thing they did agree on!) that bilateral treatment is key.
You are very fortunate Heather does not have involvement of
the nodes on both sides of her neck becaue it is likely she
would have both sides surgically treated. But, I just want
to reiterate again that bilateral involvement is NOT the only
criteria for radiating both sides of the neck. Duel to the
end with the big boys on this issue!I hope I'm not scaring
you but reinforcing the healthy caution most of us now have
about advice being given-I'll write more later. A tough and
competing issue this trust thing though though-because we
also all know we have chosen to put our lives in the hands
of these folks.
Great news on the scans!
Will be back with more later.
Kim
--------------------
kcdc
Posts:
127 | From: Boston, Ma | Registered: Aug
2002 | |
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Sherrie
Lynn
Member
Member # 275
|
Hi.....this is more of a question, Kim or whomever. My husband
for those who don't know had stage 4 tonsil cancer, it was
inside his tonsil growing into his neck,(tonsillar pillar)
they called it I think, he had 3 involved nodes. All the panel
agreed to the chemo and radiation...adjuvant therapy I think
they called it.He was told if he had to stop radiation for
whatever reason, chemo would stop too. It wasn't so the chemo
would get any cancer cells that left the area, but to help
weaken the cells that are being radiated so the radiation
would be more effective. If I remember right they said it
made the radiation 10x's more effective.
I guess I am just curious why some doctors chose to go for
adjuvant and some do not. I know everyones case is different,
but there are some people that have had the same type cancer
etc and get totally different treatments.
Thanks, just asking, I have a hard time giving an opinion
when so many doctors don't even agree.
Sherrie
Posts:
15 | From: MI | Registered: Aug 2002
| |
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Julie
Contributing
Member (25+ posts)
Member # 42
|
Sherrie,
Your husband's cancer sounds almost just like my husbands.
He had a tumor in the very center of his tonsil, was not visible,
and it had spread to three lymph nodes. They said his was
his tonsillar fossa, though. We went to MD Anderson and after
meeting with the board, they decided not to do chemo, just
radiation to both sides. I don't know why some do it and some
don't. I think I might have felt a little better if they had
done chemo, of course I would probably still get the nerves
that come every time we go back for a checkup.
Julie
Posts:
43 | From: Mississippi | Registered: Mar
2002 | |
|
rosie
Contributing
Member (25+ posts)
Member # 384
|
Kim,
Thanks for the info on the bilateral RAD.
Brian,
Could I ask your opinion on that please? Is it essential for
Heather to have both sides of her neck irradiated?
If she can tolerate it, how well does the amiphostine protect
the salivary glands? I know survival is the first concern,
but the xerostomia is a HUGE issue in her mind. The RAD onc.
is setting up for just one side of her neck and to change
it now might delay the treatments even more.
I just read an article on the importance of having the total
treatment time (from surgery to the end of RAD) be less than
100 days. She already will be going over that time. Her surgery
was Sept 4th. Her diagnosis to surgery time was quite short,
however, if that makes any difference. She had the surgery
2 weeks after they got the biopsy results.
Also, I am still a little confused on the Stage. The surgeon
said Stage 4 because more than 1 node is involved. The path
report says T2N1MX, which looks more like Stage 3. Now that
the chest scan is negative, I assume that means it is now
M0. But, broken down further, I think her status would be
T2N2bM0. I'm thinking the variance is because although she
had 4 nodes involved, the largest was only 1.2 cm. I've read
that the staging partly focuses on node size and any under
3cm or even 6 cm is not as bad. Is that correct or just misleading?
Does that make a difference in choosing RAD/chemo or just
RAD?
Still terribly confused. I wish I had found this site earlier.
I feel a terrible mistake has been made by not starting RAD
weeks ago.
Thanks,
Rosemary
Posts:
43 | From: Central PA | Registered: Oct
2002 | |
|
rosie
Contributing
Member (25+ posts)
Member # 384
|
Kim,
Thanks for the info on the bilateral RAD.
Brian,
Could I ask your opinion on that please? Is it essential for
Heather to have both sides of her neck irradiated?
If she can tolerate it, how well does the amiphostine protect
the salivary glands? I know survival is the first concern,
but the xerostomia is a HUGE issue in her mind. The RAD onc.
is setting up for just one side of her neck and to change
it now might delay the treatments even more.
I just read an article on the importance of having the total
treatment time (from surgery to the end of RAD) be less than
100 days. She already will be going over that time. Her surgery
was Sept 4th. Her diagnosis to surgery time was quite short,
however, if that makes any difference. She had the surgery
2 weeks after they got the biopsy results.
Also, I am still a little confused on the Stage. The surgeon
said Stage 4 because more than 1 node is involved. The path
report says T2N1MX, which looks more like Stage 3. Now that
the chest scan is negative, I assume that means it is now
M0. But, broken down further, I think her status would be
T2N2bM0. I'm thinking the variance is because although she
had 4 nodes involved, the largest was only 1.2 cm. I've read
that the staging partly focuses on node size and any under
3cm or even 6 cm is not as bad. Is that correct or just misleading?
Does that make a difference in choosing RAD/chemo or just
RAD?
Still terribly confused. I wish I had found this site earlier.
I feel a terrible mistake has been made by not starting RAD
weeks ago.
Thanks,
Rosemary
vidwiz2000@earthlink.net
Posts:
43 | From: Central PA | Registered: Oct
2002 | |
|
Brian
Hill
Administrator
Member # 4
|
First I wish to apologize for the tone of my last post. I
won't bore you with the details, but my passion for getting
people treated promptly and correctly frequently supercedes
my decorum and tactfulness.
I can not imagine that the radiation oncologist would choose
to do only one side, unless pressured to do so, and even then
most would buck any kind of pressure to deviate from proven
protocols. kcdc's post says it all again. in the multidisciplinary
centers that I communicate with all choose bilateral radiation
for the reasons stated in the previous posts. If we knew for
certain where each little cancer cell was, it would be different,
but given the types of scans that are done, and current diagnostic
procedures, they can never be completely sure that it is unilateral.
We are speaking here of micro metastasis, which do not show
up early in their life on the types of scans currently used.
That is why the other side gets it even when there is no evidence
to indicate there is cancer there. This also is the current
issue with IMRT. While sparing many healthy cells and tissues,
some practitioners question if it is missing small undetectable
groups of malignant cells that will manifest later. Please
note for the IMRT aficionados out there (who may argue that
less is more) that more than oral, IMRT has extreme value
in cancers located in other regions of the body which are
surrounded by more sensitive anatomical structures than are
found in the oral environment, particularly the brain in which
mass field radiation is not viable, or wise as a treatment
protocol.
Staging is not an absolute science. It came from the need
for doctors to talk in common terms about physical findings
and so that treatments could be tailored to specific levels
of disease. It is by no means exact. It allows one doctor
to say to another "this bird egg is sky blue", without the
other doctor thinking of the color purple instead of the intended
pale blue. He will get a fairly close idea of what the first
doctor is saying by having this uniform scale. But this still
is not finite and leaves some room for interpretation. In
my own case, I was a late stage three by some peoples interpretation,
and a stage four by others.......Don't worry about staging.
For that matter, different institutions have different treatment
protocols for the same stagings. That should really make you
confused. Just as we all have our own opinions about the best
way to cook an egg, doctors and institutions have their prejudices
also regarding the best way to accomplish some treatment goal.
Hopefully these differences of opinion are all based in hard
science and clinical experience, and not on anecdotal evidence.
Lastly, as to the xerostomia being a HUGE concern, she needs
to get her priorities in perspective. It serves no purpose
to have your salivary function intact if you are not alive
to enjoy the benefits of the same. Oral cancers routinely
kill people, about half the time on average. You are not talking
about the esthetic consequences of removing a small cancerous
mole on your cheek. You are talking about living and dying.
In this particular example consider that very few stage four
OC patients (about 20-30 percent) survive 5 years. Would she
like to increase her odds of staying on this side of the grass,
or be concerned about a dry mouth? This is as simple an issue
as that. This question of xerostomia needs to go away, and
you, as the person who has cared for her since her first day,
can tactfully help guide her through this process of appropriate
perspective. Hopefully with more delicate terms than I have
used here.
--------------------
Brian, stage 3 oral cancer survivor. OCF Founder and Director.
"The first responsibility of a leader is to define reality.
The last is to say thank you. In between, the leader is a
servant."
Posts:
367 | From: Laguna Beach, CA | Registered:
Mar 2002 | |
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Dinah
Platinum
Member (100+ posts)
Member # 203
|
Rosemary,
As I have mentioned before I now have mets to the liver and
bones...when they did radiation they only did one side. My
doctor (ENT)told me when I asked why I wouldn't get it on
the other side, quote: "that just doesn't happen". Neither
he nor the radiation oncologist even mentioned doing both
sides.
My excuse at the time is that things were happening so fast
- we put our trust in these docs.
Does it have anything to do with now a year later ? I don't
know. And I'm not in the medical community as a profession,
but I can tell you if I had it to do over. I would have insisted...Rosemary
I've been on this board only since July...but Brian hasn't
been wrong yet and he's who lead me to a doctor for my liver.
Good luck and I'm sure you can convince your daughter dry
mouth is not the priority here. Living is.
Take care,
Dinah
Posts:
113 | From: Texas | Registered: Jun 2002
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