Newbie intro (spouse)

[blinktwice4u]

Hello to all,

I'm the wife of a 40-something y.o. guy who has recently been diagnosed with TC (pure seminoma) and who has already had a left I/O. Primary tumor in testicle removed > 4cm. Markers not elevated at time before surgery done a couple of weeks ago. Subsequent CT scan and chest x-ray show some nodules in both the abdomen (< 2cm) and in each lung (< 1cm). Current assumption is my husband's TC is Stage III, and we are preparing for chemo treatment. Scheduled to see oncologist at nearest major medical center and go from there.

Dh and I are parents to a young child.

I have been reading through various threads and find this forum to be very informative and helpful. I especially found helpful reading the one thread with experiences from wives/gf/mothers/other female friends etc. Thank you to these women who shared in depth their experiences with having a loved one battling TC.

Being not just a wife to a man with TC but also the mother of a young child, I have multiple concerns running through my mind at this time. I know that TC is highly curable even at Stage III Seminoma, and I pray for the chemo to "do it's thing," and will support my husband to that end. Yet I also realize that things don't always go as planned either. I have other family members who have battled cancer... some successfully and one who died from it. So although I am not a pessimist here by any means, I do possess a realistic outlook that embraces the positive and yet is preparing to accept the realities that cancer brings. And given that my husband and I have a young child yet to raise, I have concerns surrounding this child's care going forward, in addition to the pressing concerns I have in caring for my husband at this time.

Unfortunately, it looks like we discovered my dh's TC sometime after it began, as evidenced by a primary tumor of the size which was removed in his I/O. Further, my dh at his initial doctor's visit presenting symptoms of an enlarged testicle with some tenderness was misdiagnosed as having an infection and took two rounds of antiobiotics which obviously did not address the problem being TC. This was done earlier this year. My dh was delayed in seeing a urologist for several months, and in hindsight, he should have gone straight to a urologist. So I'm dealing with some anger over this delay and misdiagnosis. Yet what's done is done and we simply have to proceed from where things are at presently, and I don't wish to project any kind of anger or disappointment onto my dh because that does no good for him going forward. Fortunately, I have a very close friend and confidante with whom I can "vent" and deal with my emotions over things, rather than keep such bottled up inside and run the risk of inadvertedly directing at my spouse unproductively.

In addition to these emotions, I have some very practical concerns regarding the impact this will have on our finances going forward. Many unknowns here as we do not yet know the extent of treatment my dh will need going forward. Fortunately we do have insurance but even with it, we will be incuring out-of-pocket expenses that I know will add up. Is anyone here willing to share just how much their treatment has cost them so far? I would greatly appreciate getting some kind of handle on the recent costs of chemo (could be 3 or 4x) and the followup beyond.

Again, thanks in advance for reading my post and any advice or information you can provide is greatly appreciated. blink

[IowaBrian]

Welcome
All I can say is that you have to look forward can't think what if you got to the doctor did your part now treatment will start. I know it is hard to be positive sometimes but you can't expect it to be great everyday just have to work with it and move forward get the treatment out of the way and things will be fine.
As for what it cost it depends on your insurance out of pocket most are if you stay in the network you have maybe a 90-10 split up to the max out of pocket for the year. Now co-pays like a 20.00 co pay to see the doctor doesn't count towards out of pocket most of the time.
So far with visit to fam doc, ultrasound, vist to URO before surgery, ct and xray bloodwork before surgery, the surgery, visit to the cancer doc 3 to 4 hours for first visit, another ct ordered by cancer doc to look a little higher, 2 or 3 visits to the URO post surgery for follow up, another Ultrasound to look at remaining man parts , monthly visits to the cancer center for chest xray and blood work and doc visit. Another CT 3 months post surgery. My out of pocket on the 90-10 split is at about 1500.00. Now with my plan if i need chemo it is 20.00 co-pay per visit and the rest is paid for. If you do it in the hospital you might be subject to the 90-10 split which would be more up to your max out of pocket.
I will gather up my EOB's and post some numbers as to what the charges were, what insurance paid and what I had to pay. I can't say too much 1500.00 to stay alive is a small price to pay. I know if your husband works for large company Livestrong has some options to help out with the cost of treatment.
Feel free to email if you have any questions. Best thing to do is get a copy of the policy from HR to see what it says.
Remember that the hospitals will work with you on payment most of the time it is at ZERO interest so you pay 50.00 or 100.00 a month and pay off the bill that way you just need to call the billing dept and talk to them about the options, be honest with them and they will work with you most of the time. They want the money direct they have to give a collection company a % to get it back so that does them no good if you are willing to pay as much as you can to them direct.
Hope this helps
Brian

[huckchef]

i can't relate to your chemo cost but do you know what your "out-of-pocket" expense will be for major medical. this cost will be all you pay plus your deductible once it has been met within the year. you can get this from your insurer. my "out-of-pocket was i think $2000.00. So I only paid my deductible plus the 2g the first year for my major medical. i hope this helps. my thoughts and prayers are with you and your family!
Brian

[Kman99]

Hi blinks. I'm very sorry for what you and your dh are going through. I wish things were better for you both, but having that positive attitude will help. You should also know, that your dh's condition remains very treatable and curable. Don't forget that! And please, don't hesitate to ask more questions. We're here to help.

In fact, many here have been in your shoes, but also having that friend to talk to and vent, cry, etc with is very important. I can only speak from a TC survivor standpoint, with no children, but the emotions you are feeling are very normal!

TC is extremely rare in relation to other cancers. Your anger issue is unfortunately very common. With relatively few cases of TC/year, very few general physicians and urologists see a TC case. This results in many being misdiagnosed. This happened to me, so I can relate to what you are feeling. So, it's very important to try and get your dh to see docs with TC experience! Hopefully, there are qualified TC docs in your area. If not, getting a 2nd opinion from one of the centers is another route you should consider.

http://tcrc.acor.org/experts.html

I have been lucky so far and have not had to endure chemo. I did attached a weblink below that has some information on what to expect on costs. I am sure others will chime in with the level of expenses they have incurred.

http://tcrc.acor.org/costs.html

I hope this helps and please update us on how the meeting goes with the oncologist.

[Fish]

Hello:

Sorry to hear of your husbands TC, just remember seminoma is very treatable/curable.

I can't speak to the cost of chemo, but my CT scans of chest/abdomen/pelvis cost about $2500. Because I stay "in network" they lower the cost to $800, and I pay 10% ($80). My catastrophic out of pocket is $4000/year. The closest I came was $3000. But it's very policy dependant.


Best wishes.