To radiate or not to radiate
On the 13th of February,
I met with a radiation oncologist. My
expectations of this appointment were that the doctor would have reviewed my recent
scans and my past radiation treatment file from 2010 before I met with him. This did not happen. Instead, I discovered this doctor was acquainting
himself with my health history for the first time as he sat before me. My husband commented later that it was most
likely done this way in order to avoid his not being compensated for his time
if I did not show up for the appointment. I see this as a possibility though it did not
soften my annoyance.
He began by starting from the beginning,
my 2005 diagnosis. I was perturbed a bit
that we had to start from the beginning.
All of that doesn’t matter now. Not
only was he unfamiliar with my case, he further annoyed me when he said “Tell
me about your first diagnosis in 2005 when you were in high school”. Really, I look
that young? Oh yeah, and I look like a
model too. This type of talk may have at
one time flattered me, but no longer. I
know better. Cancer and its treatment does
not make someone look young and vivacious, just the opposite. I have seen myself
in the mirror.
With my health history covered, he
next wanted to see my scans. I thought how
could he give me a valid opinion today about possible radiation when he is so
clearly unprepared to do so? He did do
something no other doctor has done. He
invited me to look at my CAT scans. I
have been curious as to what those scans looked like. My oncologist in Chapel Hill has never looked
at them so I have never asked her to show them to me. The scans looked exactly like those I have seen
on TV or on the internet with one exception.
The radiation oncologist pointed out a black area on my right lung.
“That is showing where your lung has
scarring from your past radiation”, he said.
The lungs looked great otherwise. Soon the image of the area where the 1.2 cm
tumor is located was reached. The tumor
was not easily revealed, at least in that image. He did not look any further for a better
image. I guess he decided he had seen
enough. He turned to me and said he
wanted to speak to Dr. Z, radiation oncologist in Chapel Hill, before he would
give his opinion. He said that I had had
a great deal of radiation in that area.
The tumor would need a lot more than what I have had already to produce
the result we would want. The appointment ended without his opinion on
treatment with radiation which was good because he did need some time to think
things over, obviously. I left with the understanding
that he would call me on Wednesday.
I went home with doubt that he would
recommend radiation treatment. There was
something about his demeanor and the way he said, “This is a difficult area to
treat”. I also thought about what I
would do if he said, “Yes”. Would I want
to take the risk of losing the function of my right arm? (My tumor is close to the right clavicle bone
deep within my chest. The radiation would
pass through motor neurons responsible for muscle movement to my right arm and
might damage them permanently.) Ever
since the radiation oncologist in Chapel Hill let me know of the possibility of
this particular side-effect I had been thinking about what I would do. I was leaning toward taking that risk if it was
possible to completely eradicate the cancer.
Wednesday came and Wednesday
went. I know I am not the only patient
that this doctor sees, but when he said, “I will call you Wednesday”, I expected
a phone call. Late Thursday morning, I
called his office. A nurse said she
would contact him and then call me back.
Not too many minutes later the doctor called.
Somehow I imagined that I would be
given a choice about my being treated with radiation. I thought the doctor would call me and tell
me about side-effects and what the likely hood the treatment would work with
his opinion included. Then I would go home and discuss it with my family and
make a decision about this treatment. This
didn’t happen. I won’t have to make a
decision. The radiation oncologist I saw
on the 13th made that decision for me. He will not treat me. The possible side-effects, due to my having
had radiation in 2010 to the same area, could be so severe that the doctor felt
the risk of damage to me was greater than the benefit. D---! But, I am grateful that my treatment is
about what benefits me and not how much money a doctor can make by treating me.
Incurability
This life I lead with metastatic
breast cancer can be so discouraging. I
am constantly reminded on the internet and in my oncologist’s office of the
incurability of stage IV breast cancer.
In talking to the radiation oncologist on the phone, the words that my
oncologist has said more than once raced through my brain yet again, “Your
cancer is probably in other places, but can’t be seen yet”. Another way to put what he said is . . . even
if we get rid of that tumor in your chest, you are still going to die of breast
cancer. This reaffirms how impossible my
situation is. It explains why once
breast cancer metastasizes doctors don’t go after it aggressively. The goal is stability or shrinkage, nothing
more. According to my oncologist, studies
have shown that getting rid of the tumor(s) that can be seen doesn’t save
lives-- sneaky horrible breast cancer cells.
I did not truly understand how deadly
metastatic breast cancer was until my cells found their way to this point of no
return. I thought that if it ever metastasized
to an organ, if it was caught early, there would still be a chance to save me
or anyone else. Apparently, almost 100%
of the time, this is wrong. Nor did I
know that 30% of early breast cancer patients will eventually be diagnosed with
stage IV. No wonder so many bloggers
with stage IV breast cancer are sick of Pinktober because it creates beautiful
images and stories of early-stage breast cancer patients all smiling because
they beat the disease. There is nothing
happy in the pink party for people like me.
OK, so radiation is out for
now. There may be a need to use it in
the future if the cancer grows in such a way that it is necessary for my comfort
to reduce it. At least I have Perjeta
and Herceptin. I hope these targeted
therapies continue to do their magic.
Life
without Taxotere
Life without Taxotere for this three
week cycle of treatment has been wonderful.
I have felt tremendously better.
· The neuopathy caused by this drug
was starting to make my feet hurt when I stood for any length of time. My feet
did swell and pain was felt, but there was a definite improvement.
· The scalp sores I have enjoyed (ha
ha) at the end of week two after treatment did not appear.
· I did not feel anxious by the end of
the first week from the steroids taken because I did not have to take those
pills. Those steroids were responsible for
lessening any nausea symptoms and reducing inflammation. My body did not like it. I could not concentrate on any one thing for very
long. The drug made me feel like I
needed to jump out of my skin to find relief from the anxiousness.
· Mentally I was and am so much
happier. I didn’t go through the
horrible sadness I have felt after Taxotere.
· My mouth feels so much better. No
more destruction to the cells of my mouth. Yipee! I couldn’t taste food very well for the whole
week after my infusion. Salsa would set
my mouth on fire. No amount of milk
could alleviate the pain. Now eating is
fun again. My teeth had even begun to
hurt.
· I still feel tired at times,
physically weak, and sometimes I can’t figure out why I don’t feel right, but
overall this cycle has been the best since I started treatment. There are moments when I feel almost normal –
well, almost.
· Diarrhea still plagues me.
Tomorrow is infusion day. That will be the time for herceptin and
Perjeta to attach to the receptors on the outside of my cancer cells and stop
them from growing and dividing.
Thanks for reading.
I was thinking I'd not read anything from you in awhile and I was going to send you a message. Happy to hear that you're feeling better. Sounds like your radiologist is a bit of a dweeb but I run into idiot doctors all the time up here.
ReplyDeleteI think my taste buds have bit it as food isn't tasting as good as it once did to me. Only had one day this past week where I cried all day and a huge lump has popped up on my neck but my oncologist doesn't seemed too concerned about it.
Hang in there Lisa!
Hi Susan, Boy, don't I know how it feels to cry all day. We both are in quite a mess. But, I think we both are doing well right now. I sure hope it continues.
ReplyDeleteSorry to hear about the lump on your neck. Maybe it is just a normal lymph node doing its job.
It is such a shame that chemo takes one of the small pleasures of life from us, the taste of food. I hope the further you get away from your last treatment, the better food will taste, so you can enjoy at least a few of the meals you cook.
I can't pretend to know how frustrated you must be... it seems like everywhere you turn any good news is laced with bad...
ReplyDeleteI can only say that I'm so sorry.. how lame is that? I am though.
~hugs from across the miles~
Hi Sweet Pea! Thank you for sharing!!! How did the latest appointment go? I was SO ANGRY at the doctor as you described his non-bedside-manner! Argghhh! I keep praying they are ALL making the best decisions for you, the person...and that God gives you the BEST doctors ever!!!
ReplyDelete