New and stressed and need advice

[Dali]

It's been a fast rollercoaster for me as of late, starting in March I had noticed a few changes, I was feeling more fatigued than usual, there was an ache in my left testicle, nothing major I'd give it like a 2-3 on a scale of 1-10, and once the pain set in, I did my first examination, I didn't feel anything on the left testicle, but I did find a lump on the right one. Because of a number of factors I waited until the end of July before seeing a doctor. I made my first appointment with a new doctor, during the visit I expressed concern over testicular pain in the left testicle and the lump I discovered in the right. At first he thought the pain may be caused by a varicocele but didn't really say anything about the lump more or less just acknowledging it was there but said he would prefer if I got an ultrasound, so his office scheduled me for an ultrasound 2 days later. The ultrasound came and went, it wasn't too bad, the worst part is getting over undressing in front of a guy (still makes me uncomfortable LOL). It took the better part of a week and a half after that before I heard anything, then my doctor's office called me and said that the ultrasound had revealed masses in both testicles, and they setup an appointment for me to see a urologist the next day. The phone call was honestly the first time I had even thought about testicular cancer and so I did do a brief search on it but didn't really do any in depth reading. The urologist visit was the one that shocked me, I went in, found out I gained a pound and a half in a 2 week spread despite my dieting efforts which bummed me out, and then met with the doctor, he palpated the testicles and I almost came off of the table because he kept squeezing the painful left one. Then he dropped the bomb saying that he reviewed the ultrasound results, and didn't need to order any more tests, the ultrasound revealed 3 tumors in the right testicle and 1 in the center of the left testicle, he said that 95% of the time tumors in the testicles are testicular cancer. That was on 8/10. He said he wants to do a biopsy since it affects both testicles, but I'm very uncertain at this time especially considering I already believe that I've lost testosterone production. On one hand, it would be nice to hear that I'm in the clear for cancer, but everything I'm reading says they shouldn't biopsy a testicle because of the high % rate of cancer doing the biopsy may cause it to spread. But going that route, both testicles would be removed, and I'm really wound tight about this whole situation. To compound the situation a little, my health insurance has a hefty deductible, thus far I've had to eat the cost of pretty much everything, the ultrasound alone being over 500$. If the test comes back all clear, then I'll have to spend the next 40-50 years, getting expensive tests done stressing out worried if the tumors will go malignant on me, and if they do then I'll have to do more surgery. The other side, if it comes back cancer, then I'll have to worry about things like chemotherapy and if it's spread and the whole fiasco with that, but at least the bills will be covered, my max yearly out of pocket is 3000$ but I've got a rider on my health insurance that states if I develop cancer (not carcinoma in situ) I get a lump sum payout of 10k$ which I could use to cover my medical expenses, time off work, and so forth. I feel like I'm between a rock and a hard place, I don't know what to do, I haven't set a date with the urologist because I'm very uncomfortable at this point with doing a biopsy because of the chance it could cause the spread of cells throughout the body (if it hasn't happened already) given my family's history with cancer (everybody on my mother's side has died of cancer except her father who died of a heart attack, my mother has gone through 3 breast cancer surgeries, and is now suspected to have lung cancer on an artery in the lung). I could really use some advice, should I go ahead with the biopsy, or should I tell the urologist to just remove the testicles and go straight for the testosterone replacement therapy which I'm almost positive I'm going to need regardless of either outcome.
(Sorry if this seems long winded, in the wrong forum etc I just feel so helpless right now)
Oh and I haven't broke the news to my family yet, any suggestions for letting them down gently?

[live4life]

just my thought

I was recently diagnosed with testicular cancer and now I am going throught chemotherapy.....looking back at my first visit with my urologist I wish I had done some research and had opted to have the surgery right away.....instead I waited and did antibiotics for a few weeks and on the second ultrasound finally the doc convinced me that I needed the surgery........I know your situation is a little different because of both testicles but timing is everything and if you catch it early you are gonna be in much better shape......I also heard that biopsy is not the way to go and my urologist actually mentioned this to me, so ultimatley this is a big decision for you but I would probably just have them tooken out....either way u probably end up having them removed in the end anyway...............Dont worry about the surgery that was not as bad as you would think......

[Aegean]

Dali, to be blunt, doing nothing means death. One or both testicles have to come out... based on the ultrasound it is probably both. Having a bilateral presentation is extremely rare and I probably would want to make sure with a second ultrasound. I know money seems to be an issue, but this is your life you are delaying with. It's a crappy situation but TC is very curable if caught early and testosterone replacement takes care of the rest. (not really that simple but not much more difficult physically as the rest is a mind game)

Where do you live? Considering you may have a bilateral presentation, an experienced medical centre should be looking at you. Further, did you get bloods for AFP and bhcg? A CT?

[Eugene]

Bilateral masses could also be something like lymphoma as opposed to primary testicular CA. A CT scan will probably yield more info. Good luck.

-E

[Davidcross]

Please go ahead with what is needed. Tell your family, they have to know and the maybe can help you with money. I would also be able to help if you really have no money.

Where are you living Dali?

[CW406]

Aegean is right. There is something very wrong with you, and left to progress naturally it will likely kill you. I agree that you need to get to a center of excellence because a simultaneous bilateral presentation is an extreme rarity.

[Dali]

Just hopping on from my phone to give a small update, been staying w/ my mother the last couple days (1000 miles from home) . I decided since I'm going to need hormone therapy to just have a bi-lateral removal which is scheduled for the 2ndnext at which time they will do the remaining tests prior to the surgery. I decided not to take chances with it given my family's poor track record w/ cancer.

[Aegean]

A relief to hear that you are moving ahead. If this is indeed TC, please note that family history with other cancers does not play into it.

[CW406]

Where are you being treated? This is a big deal. I would work with an expert, and I second Eugene's suggestion that perhaps you go through a full diagnostic workup including imaging prior to any surgery. A frozen section biopsy is indeed possible, and given the rarity of simultaneous bilateral presentation, I'd be cautious so as to rule out other factors first. As far as I can tell, you've presented no evidence to show you've lost testosterone production, but are saying that you have and will neet TRT no matter what. Why don't you get under the care of an expert and take things one step at a time? Where are you located...did you go to stay with family because it puts you closer to a medical establishment of some sort or was that just coincidence?

[Dali]

I live in southwest Michigan, but I am being treated in northern Indiana. As for the testosterone issue, I've noticed hot flashes, lack of overall energy and within the last 2-3 weeks only a couple of nocturnal erections with no urge for sex . The family visit was a planned vacation that I refused to cancel because it may be the last chance to spend time with my mother since she is fighting lung cancer.

(Posted via my phone)

[CW406]

Ok...if you're in that area do you think it would be worth a trip down to IU? They're the best center of excellence in the world for TC and would definitely be worth a consultation in my opinion given that a simultaneous bilateral presentation would be extremely rare...what do others think?

[drait]

I would urge Dali to discuss the treatment and/or ultrasound and/or further check-ups/tests, as taking both testicles out has further implications than just TRT, both physiologically and psychologically.

The way I am reading things it sounds like he wants to deal with everything on the cheap, and whilst I do appreciate that health care systems are different all over the world, saving a little money now for a lot of regret later is just not worthwhile IMHO.

[Wesmom]

wesmom

Ok...if you're in that area do you think it would be worth a trip down to IU? They're the best center of excellence in the world for TC and would definitely be worth a consultation in my opinion given that a simultaneous bilateral presentation would be extremely rare...what do others think?

He should definitely go to IU and be seen. I can't believe they didn't do blood work or a CT Scan. Waiting around is giving it time to spread.

[Dali]

I wouldn't be able to get a ride to IU, having problems as is securing a ride to the st joseph regional medical center. But anyway, I just got back from visiting my mother, and checked my mail, my appointment for the surgery came in, it also has on there a list of tests that will be done that morning: cbc w/Diff, cmp, alpha fetoprotein, and beta hcg.
As far as other tests etc go, I don't think they need to do the CT scan unless they find cancer during the surgery do they? And as far as the ultrasound, I have the "film" onhand, I can see the tumors for myself so I really don't see the need to go see other doctors for second opinions.

[CW406]

This just seems to be a rare case that some of us are expressing would warrant additional investigation PRIOR to performing surgery due to the radical nature of a bilateral orchiectomy. There is nothing invasive about these tumor marker tests or a CT and I would push to have this done BEFORE any surgery in your case. There may be abnormalities but I would just wish to consult with an expert before doing anything so drastic.