Diagnosed with seminoma

[davidn]

My doc called today and said my tumor in my left teste was seminoma. He wants me to get a cat scan, abdominal scan, and chest x-ray. He told me he doesn't think it spread, but should get these tests anyway. Here's my question. I don't have health insurance now, but I am getting married this Friday. I will be insured under my wifes policy, but it will not take effect until March 1st. Is it wise to wait until then to get these tests done?? I really can't afford to pay any more out of my pocket. I could barely afford the 2000 for the orchiectomy.
Dave

[amorgan74]

Path Report

Do you have a copy of the pathology report on the tumor make up and staging? I wouldn't ever recommend to anyone waiting because we played that game with my husband's cancer thinking it was a hernia and he really didn't tell me some of things that were going on a when he started having signs of a problem. I don't think there is anyone out here that is going to recommend waiting to get that scan but is probably going to be quite the opposite and tell you how quickly you need to do what your dr. says. The path report will tell you much more info about what type of cancer you have though. April

[Don]

A couple of weeks will usually not make a huge difference in as far a spread is concerned. The only problem you mat have with your wifes insurance is that may consider the TC as a pre existing condition-- they may not cover it--You may want to look into state funded medical assitance such as Medicaid--If these options don't work out for you then just make payments to the DR and hospitals-- they will accept as little as $10 a month and as long as you make payments every month they can't refuse service!!! Good Luck!!!! DON

[huckchef]

i know in mississippi and this may be federal law as well...no insurance coverage can be denied for a pre-existing condition. i was looking into going into business for myself and was told this by an agent/ friend of mine. he stated this new law went into effect not to long ago (like maybe a year or so). when switching insurance they cannot bring forward a pre-existing and deny you coverage but they may set the premiums so high you may not want to pay them. hope this helps....best of luck.
bye the way... when i was diagnosed i waited about two weeks until surgery so i could have fertility test done and sperm banking and was told by my urologist and oncologist that a few weeks really wouldn't matter. But do whatever you feel necessary!

[Concerned Sis]

Insurance

Since you already have the official dx of seminoma, I don't think it matters to the insurance company if you wait for further testing. Either they can deny based on prex or they can't. It depends on many factors such as what her group policy states regarding prex, the time that's lapsed since you had coverage prior to the break in coverage. I think HPPA laws allow 18 months, and it might depend on your state. The bigger issue is your health. Don't wait. There is no debter's prison and you can't be denied tx if in need. Otherwise, illegal aliens wouldn't be privy to the best medical treatment the USA offers.

[davidn]

it's been a while since posting but i have some news, the cat scan and chest x-ray came back clean.......(according to the woman working at the front desk at my pcp's office). i haven't met with my urologist since the test, but i have an appointment on march 30th. assumong she was correct, i'm guessing my options will be radiation or surveilance. i do have a question though, after my pathological report, which was over the phone, my urologist said i had 3 options. in this order, he said chemo, radiation, or surveilance. is chemo ever an option for treatment of stage 1 seminoma, and if it isn't, why did the doctor bring it up?? should i be getting a second opinion?? i am insured now and i guess i could try. well, i'm keeping my fingers crossed........thanks everyone
dave

[dadmo]

There is an ongoing discussion about this right now follow this thread. http://tc-cancer.com/forum/showthread.php?t=3353

[Scott]

i do have a question though, after my pathological report, which was over the phone, my urologist said i had 3 options. in this order, he said chemo, radiation, or surveilance. is chemo ever an option for treatment of stage 1 seminoma, and if it isn't, why did the doctor bring it up??

He may have been talking about one or two cycles of carboplatin. That's considered standard treatment for stage I seminoma in some European countries, though not at this point in the United States.

[TSX]

is chemo ever an option for treatment of stage 1 seminoma, and if it isn't, why did the doctor bring it up??

As Scott mentioned, it's not considered standard treatment in the US, but it is currently being offered as an option to those in your situation.

As far as I understand the situation, the trend is away from radiation in cases like yours since 80% of the time the orchiectomy alone will cure it. This is the motivation for using surveillance as an option. The motivation for using chemo as an option is to raise the probability of being cured (from 80% to upper 90's) while avoiding the long-term risks for developing another cancer from the radiation treatment itself. Just how much long-term risk some of the chemo regimens impose is not clear yet, but what is becoming clear is that the risk for second cancers and "cardiovascular events" (ie, heart attacks) from the radiation treatment is greater than was previously thought. It is important to keep in mind that if one were to get one of these second cancers, the probability for a cure at this point is not as high as it is for testicular cancer.

Note that the chemo that should be offered in this situation is what one of my radiation oncologists called "baby chemo". It's a small dose of single-agent Carboplatin that is supposed to be much less toxic than its cousin Cisplatin, but still very effective in cases like yours. Here is an abstract from a 2004 conference:

Oliver et. al., "A RANDOMISED TRIAL OF CARBOPLATIN VERSUS RADIOTHERAPY FOR STAGE I SEMINOMA OF THE TESTIS, FOLLOWING ORCHIDECTOMY: MRC TE19/EORTC 30982," British Journal of Cancer (2004) 91(Suppl 1), S8 – S23.

Background: Prompted by evidence that radiotherapy (R) for stage I seminoma increases late malignant and cardio-vascular events, MRC trials have investigated reduced radiation volume (TE10) and reduced dose(TE18) without loss of effectiveness. The latest trial compares radiation and 1 course of carboplatin (C) and the initial results of this study are presented

Methods: Randomisation was between R and 1 course of C AUCx7. An optional randomisation was allowed between 20 Gy/10f and 30 Gy/15f as in TE18. The trial was powered to exclude absolute differences in the 2 year relapse rates of >3%.

Results: From June 96 to March 01 1447 patients (pts) were randomised (ratio 3:5) between C and R. Of pts randomised to R 13% had dogleg fi eld and 87% PA strip. Median follow up (FU) is now 3 years and over 90% of patients have at least 2 years FU. Relapse-free survival rates for R vs C (95%CI) are 97.2% (95.9, 98.1) v 98.1% (96.6, 98.9) at 2 years and 96.6% (95.2, 97.6) v 95.4% (93.3, 96.9) at 3 years; HR 1.39 (90% CI: 0.92, 2.11) p=0.195; the 90% CI excludes an increase in relapse rates in the C arm of more than 3% at 2 years and of more than 4% at 3 years. Pattern of relapse varied, sites being the PA nodes only in 70% (C) v 7% (R), and pelvis relapse in 4% (C) vs 28%(R). Second germ cell tumours (GCTs) have been reported in 1 pt allocated C and 7 allocated R, non-GCTs 2 C vs 4 R. No disease or treatment related deaths have been reported after C and only 1 after R; non-cancer deaths 1 (C) vs 2 (R). There was no difference in gonadal function(FSH, LH & Testosterone) between arms at 1 & 2 years

Conclusions: With a median FU of 3 years, an absolute increase in relapse rate in the C arm of more than 3% at 2 years can be excluded reliably, early data on new primary cancers favour the C group and to date there have been no disease or treatment related deaths. Further FU is needed to confirm that these results are maintained beyond 3 years.

If I were at stage I, I would almost certainly choose surveillance to avoid any unnecessary treatment. There is a risk that if you are in the 20% that is not cured by orchiectomy alone and you do not stick to the surveillance protocol, your recurrence might not be caught until it is more advanced than what you have now and would need more toxic treatments than the options you are given right now.

-TSX

[kurt Hansen]

Hi Davidn

I´m from Denmark and have had Seminoma 2 times
first time in my rigt nut in 1884 no spread 20 days with radiation
and again in 2004 in my left one no spread tumor was 4 cm and
I was told that if it was lees than 6 cm they would put me on surveillance
I asked the doctor if I didn`t had the radiation in 1984 would he had given me
radiation this time, and he said no it would be surveillance aswell.
I don`t think we shoul tell each other what to do, but I am glad if it works out for me without chemo or radiation because I don`t think thats is very good for your body.Sorry about my bad english

[TSX]

Kurt,

I think your different treatment recommendations at each of these times (1984 and 2004) are a good reflection of the change in thinking over the years. There was a time in the distant past, so I am told, that doctors thought radiation was good for you, like taking vitamins. Now of course everyone knows that's absurd.

I was reflecting on my whole situation yesterday and came to an unsettling understanding. I have been the healthiest person among my family and friends since I was about 13 and started to care about such things - that was 23 years ago. My diet consists mainly of organic food, very little food with bad fats or high sugar (today I will not eat anything with the words "partially hydrogenated" on the label or anything that has sugar as the first or second listed ingredient), Japanese green tea (matcha) every day, foods high in Omega-3 fatty acids (wild salmon, flax seed, olive oil, walnuts, almonds), foods with high antioxidant content (wild blueberries & other fruits with dark skins), lots of fresh fruits and vegetables, very little red meat, lots of fish, moderate amounts of free-range organic poultry. I haven't had any deep-fried food since the 1980's, and I avoid fast-food restaurants unless I am "on the road" and have no alternative (although fast-food places are offering much healthier options nowadays). I went about 15 years without a single carbonated drink, but recently I've allowed myself to have an organic, cane-sugar-based one from Whole Foods Market occasionally. I don't drink tap water (I live in an 85-year-old house with lead pipes) and haven't for over 15 years - only water that has been distilled or prepared by reverse osmosis. I use high-SPF sunscreen anytime I'm outside in the summer for more than a few minutes. I have been a weightlifter for over 20 years and a runner for about 8 years. I haven't had alcoholic drinks since the early 1990's, and then it was pretty much in moderation. I've never smoked or done any kind of illegal drugs. I maintain a healthy body weight.

What is my point? It's ironic that I should be so obsessed with my health and that I should be the first one in my family (my generation at least) to get cancer. The thing that is upsetting to me about the treatment options that I have at this point is that I have to willingly subject myself to high doses of a carcinogen, no matter what I choose since surveillance is not an option for me. This treatment I feel is going to be a turning point for my health.

I had a moment of revelation when thinking about this. As far as the medical community knows, there is nothing you can do to prevent or reduce your risk of testicular cancer. Your risk factors are determined at birth (race, family history, undescended testis) and no matter what you do you'll get it if you are meant to get it. I am looking at this like it is a "gateway cancer". Once you get it, and assuming you have to get radiation or chemo to treat it, you now open yourself up to all sorts of other cancers that an obsessively healthy lifestyle (see above) is specifically designed to avoid. It's very depressing that it has to be this way.

-TSX

[kurt Hansen]

Hi tsx
thanks for your reply,I belive like you that tc cancer is not a lifestyle illnes, I lived in Laguna Beach Callifornia for 3 years
after my first tc cancer and I think I lived pretty healthy Was executive
chef at Hotel Laguna so I had easy access to healty food, and I have lived
healty ever since, not only because of being afraid of getting ill but because I like vegetabels, fish, green tea ,water and so on I would still live like that
if I was told that it didn`t help I do a lot of running spinning soccer and golf too.
To day my biggest concern is not if I get the cancer back but that I every day for the rest of my life will have to take hormones replacement I hate
that the thougt of my body need help not saying that I´m not happy with
hormones replacement because I know that then my life would be hell, but
I just would love to be able to cobe without.
That was a long storie for a bad spelling Dane but I will also say that I still enjoy life and the days I feel sorry for myself then I think that there are people with problems 100 times bigger than mine.

[Karen]

TSX and Kurt,
It's the "accept the things you cannot change" stuff that is SOOO hard to come to terms with, for you going through it and your loved ones unable to do anything to make it all go away. You both are arming yourself with knowledge and a support system and that's sometimes all you can do. Even though there's an increased risk for cancers or cardiovascular problems from RT or chemo, you can't dwell on that. There's a bigger chance you'll be just fine! The mental part of cancer is often times harder than the physical. Take care of yourself as best you can but enjoy life along the way.

[cotoram]

I am considered one of the "healthiest persons most people know".... and yet here I am with bilateral synchronous seminoma requiring a double orchiectomy. I will be on HRT and am now trying to dial it in. I know your frustration about trying to live healthy, but cancer is non-discriminatory....

I wrestle with the next step after surgery as well, radiation, or chemo or what? It is a bit of a black cloud, but life goes on and I am just grateful that today we have so many options with which to live a virtually normal life. And hey, if it takes cancer to cause me to live my life more full each and every day, then I am truly better off for that. It has challenged my perspective, deepened my relationships, brought me closer to God, and these bigger issues have actually made me very grateful for having dodged the bullet if you will..... to have one of the most survivable forms of cancer and be able to live a relatively normal life, is a blessing.

I hope that makes sense, but I sure share some of your sentiments.

[davidn]

Hello everyone, I met with my urologist today and he really wants me to get radiation treatment. When I asked him about surveillance as an option, he looked at me like I was crazy. I told him about things I was reading on the internet about RT maybe being more harmful than originally thought. I don't think these doctors like the internet. I think they feel threatened that I can easily get information on my own, rather than have to take his word for it because he's a doctor. Anyway, he said RT would have a 1% chance of causing a new cancer, and virtually cure me. He did say chemo was an option also, but I don't want to do that unless I have to. I guess I am leaning towards RT instead of surveillance and will meet with a radiologist soon. Thanks for letting me share with you guys.
Dave