I called to make an appointment with my doctor, and was a more than a little disturbed when they said, "can you come in tomorrow?" This is Kaiser, you can't get in for 3 weeks normally. Well it took 2 weeks for my schedule to match the doctor's on May 9th, 2001. He says right up front after the exam, "it could be cancer." AFP and bHCG were normal, so he says it's not likely cancer, but lets get an ultrasound just to be safe. The next day I pick up the Ultrasound requisition and walk downstairs expecting to make an appointment, and they say "can you do it right now?" The ultrasonographer says "your doctor will get results in 5 days, so call him then." At the end of the exam, she says "go have a seat in the waiting room. We're calling your doctor to see what he wants to do." That afternoon, the urologist's office calls to schedule me for the next day. The chief urologist says we need to take pull the testicle up, and if it looks like it's invading the testicle we take the whole thing. Better the 5% chance of taking a normal testicle than the 95% chance this is cancer. Orchiectomy on Wednesday, May 16, 2001.
Doc says you can go back to work next day. I'm a wimp, I take 3 days off. Mistake. My job is too physical. I can barely kneel to work on patients for the next 2 days. Surgery recheck and Pathology report the following Tuesday, May 22, 2001. Mild swelling at the incision, maybe a cellulitis so 10 days of antibiotics. Seminoma. Next stop CT-scan and then on to radiation therapy. Whew! Have been in classes preparing to adopt a baby in the fall. At least we're still on track for that. Have to be well to take care of the kid.
CT-Scan Thursday, May 31, 2001. Results on Friday, June 1, 2001 show all lymph nodes less than 1 cm diameter. But whoops! Pathology has changed their diagnosed. It's now a 100% embryonal carcinoma based on immunohistochemistry stains. Dr says there is no evidence of vascular invasion (see I've been reading Tcnet ). He recommends RPLND but says surveillance or chemo may be an option. I ask him to fax me a copy of the pathology report. WAIT! Vascular invasion noted. Epididymal invasion noted. Appointment with the oncologist Friday, June 8, 2001. She says, "no way I'm giving you chemo, you need surgery." She even called Sloan-Kettering to confirm her conviction. Now it's time to get the life insurance in order, arrange for a replacement at the practice, and plan to take 2-3 months to recover. Surgery scheduled for June 28, 2001. Next week is my birthday.
Thursday, June 28, 2001
Admitted for the RPLND. Unlike the orchiectomy I don't remember anything after the pre-op room. I woke up in the post-op with the nurse telling me to breath deeper. I was in recovery by 1 pm, but since I kept breathing too shallowly, and wasn't getting enough oxygen for their comfort, I didn't move to my room until 5 pm. I had the continuous morphine drip with the little button for a boost every 6 minutes, and I used it. I almost got sick of the nurses asking me to rate my pain every time they came into the room, but it was a good thing because after the first 24 hours, they increased my boost dose, and things were much better. The moral is, don't be a tough guy, tell them it hurts so they can fix it. The surgeon said every thing looked great. All the nodes appeared visually normal, concurring with the CT scan, so I was hopeful.
The nasogastric tube wasn't so bad the first few days, and I actually felt some comfort from the rhythmic movement of the calf cuffs massage my legs. I barely noticed the Foley catheter. The most frustrating part was having to ask to be unplugged so I could go for a walk. And for the first few days the nurse aides insisted on accompanying me down the hallway. The worst part was having my blood pressure and temperature taken 6 times a day, twice every shift. This usually included being woken up at 11:30 pm and 4 am for the routine.
No real gas passing over the weekend but started a little Sunday night. Since the NG tube wasn't producing much Monday morning they decided to pull that. Felt like a hot nail being driven through your back molar and up into your eyeball. Didn't feel much like eating Monday, and so Tuesday we started Reglan for nausea and to help improve intestinal motility. Then the rounds of horrible jaw clenching and vomiting began.
It got so bad that I couldn't keep anything down and they were worrying about having to put the NG tube back in. I skipped the broth dinner Thursday night and the reglan as well. By Friday morning I was feeling better and asked to skip the Reglan, since the broth was actually starting to look good. It was that morning someone finally realized the jaw spasms were a side effect of Reglan. Since then every nurse I've talked to know immediately that was the cause but apparently my nursing staff and doctors had never seen it before. I was nauseous at lunch and vomited once, but overall I felt 90% better and was getting stir crazy in the hospital. I'm used to running 3 miles a day, and now I'm limited to the slow shuffle around the hospital award. Dinner stayed down Friday night and by Saturday morning I was ready to go home. The resident tried to convince me that I should stay until I kept down solid food, but by my rationale, I could vomit at home just as easily as I could in the hospital and I'd feel a heck of a lot better at home. Midway through the hospital stay the Urologist informed me that 1 node was positive. According to the pathology report, 7 nodes were taken together as a section. 1 node had a cluster of embryonal carcinoma with the largest section being 0.6 cm in diameter. So after a 9-day stay in the hospital I made it home, just in time for mom to fly up to help take care of me.
I envy the guys who got out of the hospital after 5 days, and chalk my extra time to the Reglan side effects. My birthday was discharge day.
I'm happy to say that there was no vomiting once I got home. I started slow with bananas and yoghurt and it took almost a week to be eating fairly normally. My first night home was the first full restful night of sleep in 9 days. At the recheck appointment 2 weeks after surgery we discussed the options of surveillance versus 2 courses of chemo. The surgeon was leaning heavily towards chemo since I had been consistently negative for tumor markers, there was no easy way to follow up on my cancer. We had no way of knowing whether it might have spread further, despite 2 negative chest x-rays.
Friday July 20, 2001
Meet with the onco doc. I kept expecting to hear "1 node, great, let's just do surveillance." Unfortunately, it came back to the negative tumor markers again. At this stage she gave me a 30% chance of relapse. Most of the information I'd found on TC-net talked about BEP as the standard chemo regimen, but my onco doc feels Bleomycin is just too toxic a drug. She's seen too many patients treated with Bleomycin in the past that now have life threatening problems from the lung changes it causes. Cure the cancer, but die of pulmonary fibrosis. So we considered just EP, but then the question was how many? Four courses of EP is considered equivalent to 3 courses of BEP for treating metastatic TC. The problem is we don't know if I have any TC left, and we apparently have no way of knowing, until it grows big enough to see on the chest x-ray (or god-forbid shows up somewhere else). To make matters more frustrating the 3rd chest x-ray hasn't been read out yet. She seems to be leaning towards doing a full 4 course of EP, and we don't even know if I still have cancer!! We left it with a follow up appointment in 1 week, to give her time to consult with Dr Einhorn from Indiana to see if he has any insight into what we should do at this point, and how we should follow up for surveillance afterwards. Honestly this is a low point for me in the whole process. I feel like every time I've made it over a hurdle, there's a bigger mountain in front of me. I feel like I just don't have any fight left.
Wednesday July 25, 2001
About face. Just spoke to my onco doc who consulted with the medical oncologist at Sloan-Kettering and he feels surveillance is the best option at this point (Ctscan every 3 months and chest x-rays/tumor markers every 6 weeks for the first year). There seems to be a concern that since I had a template lymph node dissection there is still the possibility of another macroscopic tumor in other lymph nodes in the abdomen, and a short round of chemo would not be sufficient to "get" it. They feel better to wait until a relapse manifests (25% chance) and then treat with 4 rounds of EP. The SK specialist also advised that being tumor marker negative so far doesn't mean the markers might not develop should I have a relapse. I don't know whether to be ecstatic or spend the next 2 years worrying. The positive aspect is that being tumor marker negative actually puts me in a lower risk category for relapse according to newer studies published in only the last 6 months.
November 22, 2001; Thanksgiving Day
The last 2 weeks have been a little bit of worry. Monthly chest x-rays and tumor markers since surgery and a repeat CT scan in August have all been normal. Except November 14, the onco doc told me the most recent chest x-ray had a "suspicious" spot. The radiologist wanted to compare to the CT scan and previous X-rays before reading out the report. I try to keep telling myself "false alarms are going to be a normal part of surveillance." I'm scheduled to have another CT at the end of November, but rather than wait until then, the doc agrees a repeat chest x-ray might be a good way to ease my mind, if it turns up normal. So, repeat x-ray on the 19th, and a different radiologist reads BOTH films as normal.
Despite this little scare, life has almost returned to normal. I ran a 12K race in September and finished in just under an hour. I'm back at work 2 days a week (by choice). My partner & I are proceeding with our adoption qualification and I'm looking forward to being a new dad.
December 21, 2001
I'm hoping this is just another false alarm. November 27,2001 had my second (?) post-RPL CT Scan. This scan noted a 5 mm nodule in my left lower lung lobe, 2 "indistinct" smaller nodules and a 1x2 cm attenuated area in the mediastinum suggesting possible thoracic lymphadenopathy. After consulting with Bosl again, the experts agreed continued surveillance was warranted and we scheduled a repeat CT December 17, 2001. The 5 mm nodule is still present, and the mediastinum appears similar to the November report. In addition this one decided there was a 3 mm nodule on the edge of one liver lobe and 2 other attenuated areas in the kidneys (do they teach creative writing in radiologists school?) Since the 5 mm mass hasn't changed, I suggested we take a chest x-ray to find the mass, and have an easier tool to follow it with. The x-ray taken December 19, 2001 was "normal." NO MASS SEEN. Arrrggghhhh. January 22,2002. Routine follow-up with my urologist. At the end of the exam he says "I'm giving you a requisition for an ultrasound." I asked, "does that mean you feel another mass in the other testicle?" and he says "yes." Déjà vu.
January 24, 2002.
Ultrasound confirms remaining testicle has a hypoechoic mass measuring 0.9 x 0.6 x 0.7 cm in the right lateral testis. Also evidence of microlithiasis.
February 6, 2002.
I'm on standby for outpatient surgery which means I can't eat anything since midnight last night, until they call me to come in for surgery. I'm about ready to pass out from hunger by the time I get the call to come in at 6 pm. Otherwise, the surgery is pretty uneventful.
February 7, 2002.
I woke up this morning with a scrotum the size of a grapefruit. Doctor sees me in the morning and says, well we can wait and let it re-absorb naturally or we can go in and drain it and try to tie off any bleeders. Since I'd prefer not to think about my penis bursting from the pressure (and it's already about 3 x normal diameter) I elect for more surgery. Again on standby (this week apparently the OR is swamped). This surgery starts at 8:30 pm and I'm home draining by midnight. I see the urology resident the next day for followup and the nurses suggest I use maxi-pads to absorb the drainage until the drain is removed next week.
February 12, 2002.
Double duty day. I see my oncologist for the last time (she's leaving Kaiser) and then the urologist for drain removal. Pathology is back as "classic seminoma"--- how can I be so lucky? February 13, after some serious "this needs to be addressed speeches" and getting the run-around from the endocrinology department ("our first opening is 6 weeks from now") the urologist gave me a depo-testosterone shot. Hurt like hell. And still sore 2 weeks later. I ended up calling my GP and he agreed to monitor my HRT and agreed to prescribed Androgel.
February 22, 2002.
My new oncologist calls to say he's reviewed by case and the last CT scan and feels there is sufficient evidence to begin chemotherapy immediately. We met in the afternoon to discuss the situation and decide to proceed with 4xEP without the Bleomycin.
February 25, 2002
CT scan in the morning later shows the left lung mass to now be 8 mm in diameter, which supports the idea to start chemo even further. At 1:30 pm I'm already in chemotherapy getting my first dose of EP. I'm on Dolasetron (Anzemet) for nausea and I receive 10 mg of decadron (dexamethasone) IV prior to the chemo drugs, also for nausea. The following 3 months are your typical nausea, hairloss and fatigue. I didn't actually vomit until 2 days after my last chemo treatment. I keep thinking I'm going to get used to the needle sticks, but that doesn't seem to happen. I do notice that after several days of the decadron I'm pretty much awake all night for a couple nights, although a little benadryl helps me sleep. White cell counts drop after the first treatment and had not recovered by 2 days prior to starting the second round, but we proceed with chemo anyway and I take neupogen injections at home for a week afterwards. Therafter every chemo cycle I do neupogen injections.
April 8, 2002.
Mid-way through the chemo a CT-scan shows the mass has "significantly decreased in size." Only 2 more rounds to go. The oncologist feels that given the low tumor burden the response should be excellent as evidenced by the already shrinking mass.
May 28, 2002
Three and a half weeks since I finished chemo. Saw the oncologist today and everything looks great. Kidney function is fine. Cell counts are fine. We'll schedule another CT at the end of June, but he says it may take several months for the tumor/scar tissue to continue shrinking. We won't worry about teratoma unless the mass starts growing again. He pronounced me in "complete remission" and okayed us to proceed with our adoption plans! Whew! What a journey the last year as been!