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 one.



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 to start.



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 deductibles!



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 gut".



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.

Topic: Surgery

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 slow healer.



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 than him.

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 cutter.

Topic: Chemotherapy

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 or others.



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!

Topic: Radiation

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.


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This page was last updated on Dec 05, 2012
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