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 In mid-June, 2002, Alan noticed
a small pea-sized lump in his right testicle. He immediately showed me
the lump, and we both decided that it was "probably nothing" but that
we should make an appointment with the doctor just to be safe. That
Friday, he met with his primary physician, who gave him an extremely
quick testicular exam, and confirmed that there was definitely a small
mass present, something that he said could be a variocele, and probably
nothing to even worry about, but to be on the safe side he should have
an ultrasound done. On Sunday we went to the hospital to have the
ultrasound done, and were told that results would take a few days. At
this point we had both managed to work ourselves up to realizing that
in fact, this could be something very serious, and were wondering when
we would hear what the test results indicated. During this time, we did
massive amounts of research on the Internet and armed ourselves with as
much knowledge as we could find. From this research we found many
factors (undescended right testicle, age, etc.) that pointed to the
fact that he could very well have Testicular Cancer.
That Monday afternoon at 3:00, Alan
received a phone call at work from the urology department. They wanted
to see him right away, but were unable to give any additional
information over the phone. By this time, we were so scared and nervous
about what that call could mean. We both immediately left our jobs and
made it to the hospital in record time.
During this visit we met with Dr.
Tebyani, his urologist. Dr. Tebyani explained to us that according to
the ultrasound results, the mass in his right testicle was solid and
not liquefied, meaning that cancer was a definite possibility and his
testicle would need to be removed immediately. At first we both
couldn't understand why there wasn't a way to tell 100% if the mass was
cancerous - removing the testicle seemed so drastic to us, however in
hindsight, of course we now understand why that couldn't be done. Blood
work and a CT scan were done and the results showed no elevated tumor
markers, and no indication that anything had spread into his abdomen.
This was the first time throughout this entire process that we actually
felt some sort of relief. His orchiectomy was then scheduled for that
Friday. Needless to say, the last week had come and gone like a
whirlwind. Just a week ago he had been seeing the dr. for what we
thought was something minor, and a week later he was having his
testicle removed.
The operation day came and everything
went really well. He spent a few hours in the recovery room and then
got to go home that day.(For any caregivers out there - I just want to
say that it's totally normal to be freaked out too at this point - I
almost passed out in the recovery room. He was lying in bed coming out
of his anesthesia, and I almost passed out and I wasn't the one who had
surgery! What can I say other than I was overwhelmed and I hate
hospitals!) He was in pain the first few days, but dealt with it like a
trooper. By Monday I can't say he was feeling 100%, but he was
definitely on the mend. Approximately 1 week after the orchiectomy we
had our follow-up appointment. During this appointment Dr. Tebyani
explained that the mass in his testicle was indeed cancerous - 100%
non-seminoma. He explained that the non-seminoma was one of the more
aggressive cancers and gave us three treatment options: 1. Surveillance
- to be tested every few months and watch to make sure the cancer did
not appear. 2. Chemotherapy - a few rounds of chemo might help kill any
microscopic cancer cells that weren't visible to the scans 3. RPLND -
to have his abdominal lymph nodes removed to really ensure the cancer
would not spread/travel. It was his opinion that with his specific type
of cancer there was a 30% chance of recurrence. To us, this 30% was too
high of a chance, so we opted for the RPLND operation. Dr. Tebyani
offered two different versions of this surgery: The original one with
the large incision and longer recovery time, or the laproscopic
version. After weighing the pro's and con's we decided on the
laproscopic version. We knew going into the operation that 100% removal
was not an option with the laproscopic procedure, but with the known
circumstances (his clear scan and normal tumor markers), we felt this
was the best decision.
In mid-August Alan had his RPLND done.
The surgery, which was supposed to last only about six hours actually
lasted about nine hours. About 7 hours through the surgery the three
doctors performing the surgery came down to talk to his mom and me in
the waiting area and informed us that they had found and removed two
tumors from his abdomen, the largest one being just over 3 cm. At this
point they asked us what we felt Alan would want to do - have them
finish removing what nodes they could easily get to laproscopically, or
revert to the full-blown RPLND and cut him open to remove all of the
nodes. With the one node being over 3 cm, chemo was going to be
necessary, so we decided to have them finish what they could
laproscopically, and then we'd move onto the next step in the treatment
process - chemotherapy. And just to reiterate, during this entire time
period, Alan never once had raised tumor markers. While this is a good
thing it can also be frustrating as without tumor markers it's hard to
find any indication as to whether or not the cancer is still active.
A few weeks after the RPLND operation,
it was finally time to start chemo. We waited a few weeks for him to
have the chance to recover from his operation and then jumped into the
chemo process full speed ahead. We had only had the chance to bank
sperm once at this point; however after we found out that chemo was
necessary we made several more visits to the fertility clinic to bank
some additional sperm "just in case" before we started chemo. We had
our first initial consultation with his oncologist where we discussed
Alan's case and he gave us two options for chemo, which we now know are
the standard treatments for TC. Option A was to have 3 rounds of BEP,
while Option B was to have 4 rounds of EP. He was scheduled to begin
his treatment the following week, so we went home and tossed around our
two options for a few days before deciding. After much research and
discussion we both felt that 3 rounds of BEP was the best decision for
Alan's treatment.
We started his first treatment the
following Monday. This was sometime in September 2002, however I don't
recall the exact date. The cycle of BEP basically goes like this: 1
week on Monday - Friday, 2 weeks off, with the exception of a weekly
bleomycin shot that's given. The first week was probably the most
difficult as it was such a new situation to both of us. Alan was
feeling horrible and I was busy freaking out because I knew he felt
horrible and had no control whatsoever over it. (I was also scared I'd
almost pass out again!) We made it through the first week and Alan did
really well. He was able to control his nausea with the meds they had
given him and although he wasn't very hungry, he managed to eat very
small meals and lots of snacks. I don't recall who gave me this advice,
but it turned out to be wonderful! They told me to have lots of snacks
on hand during his treatments and this really worked out. I would pack
him a little cooler before he headed off to the "chemo cave" (as he
affectionately called the chemo infusion center which was located in
the basement of the hospital). He brought books, magazines and music to
help him pass the time.
By the time the second week rolled
around, Alan was experiencing major problems with his ears. Lots and
lots of ringing and what turned out to be definite hearing loss. Also,
he had major numbness in his fingers and toes. Needless to say, his
oncologist was very concerned about these side effects and the fact
that they were happening so early in his treatment. After evaluating
his case, they decided to substitute the cisplatin with carboplatin
when he began his second round of chemo. While his hearing loss,
tinnitus (ear ringing) and digit numbness didn't get any worse, it
didn't get any better either, but we all knew this was a very small
price to pay to be healthy. Also, during the second week (day 14 to be
exact), we knew his hair wouldn't be around much longer. He was now
bald and beautiful! As a side note, every time we went out in public
while he was in his bald stage people would stare. When we'd walk by
those who were staring, he'd say really loud "Hon, I think I'm due for
a haircut!"… He kept his sense of humor throughout this whole thing!
Early in round two, he experienced a
very bad reaction to the bleomycin treatment. His throat all but closed
up. Fortunately all it took were some steroids and he was back to being
functional. Also in round two, he developed a really bad case of
heartburn. Some Maalox and a few doses of protonix and he was back in
action. Also in round two, his oncologist introduced neupogen into his
treatment. Because it's been awhile now, I don't remember specifically
when he took the shots, but I know he gave himself shots at home of the
neupogen several days in a row. The neupogen is supposed to help keep
your white blood count up, or help it replenish itself after the chemo
kills it. The shots themselves weren't painful, but the after effects
of them were. He would experience fairly bad bone pain from these
shots, but just a few Tylenol would take the edge off of the pain and
make it more bearable.
Round three of chemo happened pretty
uneventfully, or as uneventfully as chemo can be. We were thankful that
we didn't have to deal with any strange side effects like we had
previously. The only thing that went wrong during round three was that
his platelets were extremely low - so low that he could hardly drag
himself out of bed. This is when his oncologist knew it was time for a
blood transfusion. We were both kind of freaked out by the thought of
the transfusion, but it was almost immediate after the blood hit his
system that he started perking up. He felt better in a matter of hours
- I have never seen anything like it before!
With our chemo days behind us, we
quickly moved into surveillance mode. Immediately following the
completion of his chemo, he had a PET scan done. This scan came back
clean. Because his original CT scan came back clean falsely, his
oncologist has put him on a rotation of CT and PET scans every 3
months. Along with those scans he also does bloodwork to check for
tumor markers.
The cancer is something that is always
with us, every single day, however some days it's there less than
others. Not to sound too mushy or anything, but TC has changed so much
of who we are… in a good way. You learn a lot about yourself and each
other when faced with a situation like this. At the beginning we were
both so frightened and didn't know if we had what it took to get
through this, but we proved ourselves wrong, and we're even stronger in
the end. Every 3 months there is that 1 ½ week period of in between
time when you're waiting anxiously for your scan results and those
nervous unsure feelings rush back. As much as we both wonder if those
feelings will ever go away - I don't think they will. We now understand
it's totally normal, and part of the process. We now have 3 clean scans
under our belts and are so thankful for all that we have.
This story is not nearly as detailed and
specific as it could be. Please feel free to email me personally at
nicole@theandrewsonline.com if you have any questions, need a friend or
just want to chat.
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