TCRC's Helpful Hints
Hindsight is 20-20, we all know that...well, for the new TC patient we offer
this list of things we wish someone would have told us before we started
treatment. These ideas are taken from inputs sent in by TC survivors, and based on
their experiences. They are not meant to be blinding medical
breakthroughs—rather most will be quality of life enhancers, or known
obstacles that you need to be aware of. We hope this helps, and if you have
some hints to pass along,
let us know!.
Topic: The TC Experience
There will be times that are very unpleasant and very
uncomfortable, but they pass. In time (if you're lucky, like I
have been), you get better. You go on, your health returns
pretty much to normal. But a part of it stays with you, some
for good: a little better perspective, a little more wisdom.
some not so good: you realize very well that you're not going
to always be here, and that what you've gone through still can
chase you down and catch you if it has a mind to. But if you can
come to terms with that idea, then maybe you can look back on
the whole thing as more of a positive experience than a negative
Ask ahead of the surgery what can be done to get the pathology results
to you as quickly as possible. As somebody noted, this is the most
stressful time. My doctor's office was really good about this . . . they
had a lady in the office that kept checking for me. Just let them know
how important this is to you.
As weird as you'll feel for a while, (which includes goofy symptoms
and responses for about a year after treatment), maintain confidence that
eventually you will get back to normal.
In hindsight, I wish my doc had taken a testosterone count before the
IO. I know my hormone problems were not typical but it would have
given at least a general idea of the t-count in case there was a
problem. Without it, I had to start with minimal injections and
gradually increase over the next year. Even at that, I apparently
never got back to my "normal." Since the normal range is extremely
wide, they could have saved a lot of time if they had an idea where
One thing I would suggest to everyone on this list -- give the
TCRC web site address to all your docs. My oncodoc has AOL and a
couple years ago, I gave him a copy of Loren Buhle's cancer site
list [Ed note: This list is now Oncolink].
Not only has he visited some of the sites but he made the list
available to all his patients. He is one doc who is not paranoid
about patients learning about things on the net and taking their
questions to him.
Give your family and friends this URL. It is much easier for them to
read it themselves than for you to explain it. As a bonus, they may
think of some questions to ask your surgeon that you would never had.
The best and most important questions I never thought of asking came
from my wife and sisters after visiting this site.
Get to know what your insurance covers from top to bottom. We were
not even aware of the medical excellence program our HMO offered until we
got approval! This brings me to the next point....
Get chummy with your primary care physician (PCP) or the HMO liaison
who works with the PCP. They were the ones who went to bat for us with
our HMO. They also know tons of stuff about how your HMO operates so you
can ask them for advice as well.
Get as much information about the illness. Not only did this help us
understand the disease, it also helped when we were able to convey the
proper information to our PCP and HMO liaison because they, in turn, knew
exactly what to ask for from the HMO.
When choosing your insurance (if you get a choice), ask around for
the best one. We discovered that some of the doctors we consulted liked
US Healthcare better than Blue Cross/Blue Shield -- coverage and customer
service are supposed to be better. For instance, when doctors call US
Healthcare, they'll probably end up talking to a RN or a doctor rather
than just the regular customer service person. Also,
choose the best insurance plan you can afford. Mike switched to a
better plan (same HMO) about two years ago and it paid off -- no
If you can handle the discomfort post IO surgery, take it easy on
the codeine painkillers. Being constipated due to the codeine was far
worse than any post-op pain. Both prescribed meds to deal with this and
the home brewed variety seemed to have little impact on me.
This one's similar to another I've read on the "helpful hints" page
but anyway: No funny movies until after the post-op discomfort eases up.
Laughing hurts way too much. I literally thought I was going to "bust a
Always remember the ultimate responsibility for your health is yours
and yours alone, so insist on seeing the X-rays and CT Scans. Ask
questions for everything, what will happen, any symptoms to watch for,
where the Cancer may show up next, etc. Never take a bad answer from a
Dr., push back, or get another Dr.
The orchiectomy really had little effect on my sex life, as far as the
mechanics of it go.
The one that comes to mind first is when the
urologist said to me, "Oh, you should be fine a couple weeks after
the RPLND." Not even close. I remember two weeks after the op, I went to my
son's football game. I wouldn't have made it without assistance. It took me about two
months before I felt recovered but then, I've been told I must be a
Well, for one thing, after your surgery and you go back to work, don't sit
down at lunch with anyone that you know very well. That way you won't
hear any jokes that you understand. Laughing after surgery for about the
first two weeks is the most painful thing that I can think of.
I was pretty prepared for everything except the abdominal cleanout called,
"GO Lytely", I urinated through my rectum for probably 12 hours before the
RPLND. It was bad. I told
the Urologist that he should warn people how bad that could be. It wasn't fun.
Prior experience with RPLND made me ask the doc NOT to close my second IO
incision with metal staples, opting instead for internal sutures that
dissolve over time. He said he preferred staples, but demurred to my
request. The cutline from my first IO (9 1/2 years earlier) healed quickly
and easily, as has been the case second time around. A little
lumpiness/tenderness along the cutline during first weeks, but it has
flattened out nicely.
Two weeks after surgery I compared my wound with that of a young guy (30)
whom I'd met in hospital for same operation. He'd had staples, and his
incision looked MUCH worse than mine: wider, uglier, and pierced. We both
had traveled over Christmas holidays just 4 days after surgery, and I
believe I came out of it in much better shape, despite being 10 years older
The oncologist who later examined me said the scar looked more like the
work of a plastic surgeon than a urologist. Helpful hint? Ask about the
alternatives for closing the IO incision, make an informed request to the
Re: hair loss - Be in control, cut your hair short or all off, don't wait until it
drops out in clumps - do it first so it's not such a shock to yourself
Take the available medication -- 99% of sickness can be eliminated, and start
prior to treatment of Chemo or Radiation. I was only physically sick
twice in 12 weeks of chemo and 4 weeks of radiation.
Use a good mouthwash before and throughout chemo, also sucking an ice
cube relieves pain and keeps the mouth moist.
The only experience that I might add is that my white blood cell
count was so low after the first cycle of chemo that they were
threatening to wait a week before beginning the second cycle. My
doctor, however, prescribed a 1 ml injection of Neupogen
(300MCG/ML) that I took for 4 days. Although this medicine was
expensive, about $150/shot, it worked great and my white blood cell
count shot through the roof!
As has been pointed out, chemotherapy can reduce your white count and
lower your resistance to infection. In order to reduce the odds of oral complications
from chemo, I suggest that you try to visit your dentist before starting chemo to
make sure that everything is OK. Nothing is worse than having to have your teeth
pulled during chemo because an abscess has formed!
If the oncologist tells you that you won't get sick from the radiation
treatments, take it with a grain of salt. A lot of people don't, but some
(unfortunately I was one of them) can get really sick. If they tell you that
the effects of radiation treatment wear off about as fast as they built up,
triple that time.
I had five weeks of radiation five days a week, and found the side effect of
nausea gradually got worse throughout the period. Eating ginger, wearing wrist
bands, special diets, etc, may help but I doubt they have any significant
effect - at least not in my case.
What did relieve the nausea, and regrettably I didn't discover it until
the last 10 days, was drinking up to 12 pints of water each day. Drink a glass
of water whenever you can, whether or not you are thirsty. It
seemed to effectively flush out the toxins in the stomach that cause the nausea.
They tell you, "a few people have nausea, and lots of people don't
have any serious side effects". They don't tell you, "Some people
throw up a lot, spend most of the time in the bathroom with
diarrhea, and feel like crap pretty much the whole time".
Topic: Miscellaneous Advice
I went for a long time (8 months) without any testosterone
replacement. Your adrenal glands produce enough to keep your voice deep
and beard growing. But I was fatigued, depressed and "suffering"
hot-flashes. I started using a patch, and felt better by the next day.
After a week I went to 2 patches, which is the recommended dosage, my
hot flashes are minimal, and I feel much better.
Re: CT Scans - The frosty beverage before and during may cause some
gastric-intestinal distress(!)...inquire if you can use
Imodium or something. I am allergic to the usual injected contrast-
this manifested itself after about a year with sneezing that would not
quit. To remedy this, I get a specially chemically bonded contrast.
It's probably the iodine, but I do okay otherwise with foods that are high in
iodine (like lobster).
Don't expect your oncologist or your urologist to know much of anything
about hormone regulation. See an endocrinologist if you are having any
kind of difficulties (and you will have a few) with hormone replacement.
Both of my uro and onco docs look at me like I'm from another planet
when I complain about the side effects of testosterone replacement
therapy. Go right to an expert to ask your questions.