Nice to meet you!

[JennyP]

My name is Jenny and I'm 28 years old. My husband Mike is 29, and just diagnosed 10 days ago. He had the left testicle removed a week ago. He's stage three, though I don't really know much about what that means. Just that it's not good, and that it's in his stomach, chest, neck, and maybe his brain. I guess chemo comes next. We've been married for three years, and together for 7.

My mother died from Hodgekins a few days after my 20th birthday, after two years of chemo and a brief remission. I was the oldest of 4 kids and Mike helped me raise my youngest sister. Mike's previous experience with cancer was more positive--- his mother is a thyroid cancer survivor and his brother is a testicular cancer survivor.

We're both terrified. We're in the process of adopting three kids, and I'm afraid of how this will rock their sense of security. It was horrifying to watch my younger siblings deal with a parent with cancer. This whole deal is scary. I keep researching tc online, and waiting for the oncologist appointment to find out what pertains to us.

Any general advice? This thing is moving so fast, it feels like my head isn't working very well.

I'm glad there is a place to talk about these things, thank you.

--jenny

[Karen]

Hi Jenny,
I'm sorry that you are facing this. He sounds quite advanced with staging and it is important that you move very, very fast with the very best. The http://tcrc.acor.org/ site has a wealth of information, a TC glossary of terms, a list of questions for the doc and a list of experts. There are 2 at UW. If you can't physically get to them you can do a consult. This is really important.

Dr Paul Lange, M.D.
Chairman, Department of Urology
University of Washington School of Medicine
Phone: (206) 543-3918
Urology Clinic Number: (206) 598-4294

Dr Daniel Lin, M.D.
Assistant Professor, Department of Urology
University of Washington School of Medicine
Phone: (206) 667-1342
Fax: (206) 667-2917
Urology Clinic Number: (206) 598-4294

Do you have the pathology report and the lab reports (CT scan, bloodwork)? If you can post that info here it would be helpful. The type and spread are inportant to know.

When is your appointment with the oncologist? I don't intend to scare you ...this is still beatable. Lance Armstrong had mets to the lungs and brain.

[dadmo]

Jenny:
Even in advanced cases this disease still has a fairly high survival rate but you will need to act fast. If at all possible get in touch with the experts that Karen listed and if that isn't possible have you local oncologist give them a call. The experts are very reachable and will work with you to beat this thing. When you get a chance to catch your breath post what you can from the pathology report,we might be able to keep you informed about what steps might be the best to take.

[dannysbrother]

Hi Jenny,

As Karen and Dadmo have stressed, it is important to move very quickly in terms of getting your husband on the right treatment regiment in the right place as soon as possible. My brother is also a stage III TC patient who is continuing to fight this disease as we speak at Sloan-Kettering Cancer Center in NY.

I hope you are able to approach the experts that Karen listed. It is definitely worth it.

I wish you and your husband the best. And I am very glad you have found this forum. There are so many here to offer support, advice and guidance.

Michael

[JennyP]

...

They scheduled us for the consult with the oncologist for the 16th, Monday. We don't have insurance, though we've turned in the application for Medicaid. Do you think those experts will still talk to us?

The ugliest part is that we literally were shopping for insurance the day before Mike's testicle swelled up. Prior to that we thought he just had a strange flu that was refusing to go away. In fact, we had just seen a doctor for antibiotics.

I'll call for the medical record info in the morning.

Thank you for your help and concern, and I'm sorry for your own situations.

[Lori]

Hi Jenny, sorry we have to meet this way, but welcome to the forum. I was here everyday (sometimes several times a day) after my husband was diagnosed stage 3. The people are wonderful here, so don't ever hesitate to share your thoughts and feelings. They are also extremely knowledgeable!

My husband's disease had spread through his adbomen, chest and neck. But he is almost a year out from treatment and doing great. Please do two things, reach out to the experts Karen provided as soon as you can and don't lose Hope.

Let us know if we can do anything.

[Margaret]

Hello Jenny, sorry about your husband but I am glad you found the forum. I can't say enough about the people here. You and your husband are in this 'family' now and we will all stand behind you and support you as long as you need us.

Even with stage three cancer, there is a lot of hope. The most important thing now is to not wait to take action. Evey day matters, heck, every hour matters. I am sorry about your insurance situation, but there is help out there and Robert is really great at finding ways to help.

I will put you and your husband in my prayers, please let us know how you are doing.

Margaret

[Already Bald]

Hi Jenny,
Don't let the insurance issue slow you down in seeking treatments- you should focus all your attention on getting in to see an expert, maybe two.
Based on your first post, it is likely that chemo will be prescribed- and it is also likely that your husband will be cured.
As Dadmo posted, let us know the details of the pathology report from the I/O.
Hang in there, and stay on top of this thing.
Best,

[JennyP]

update

The oncologist said he's stage 3c. Mike's AFP is 25,774, and I guess that's pretty bad. He suggested we do 4 cycles of PEB chemo. He scheduled us for an MRI of his brain, a chest CT, and some pulmonary thing. He said it's non-seminoma, but I don't know what that means, just that it's better to be seminoma. Mike is scheduled to have a port put in, and to start chemo on Monday, if he doesn't qualify for some sort of clinical trial in Seattle. Except I have no idea how we could live in Seattle. We're barely living here and it's way less expensive, plus we have a small support system. I guess the thing in Mike's neck is about 4cm, just from the doctor feeling it, and that's very not good.

He said Mike has a 40% chance. I'm having trouble wrapping my brain around that. I'm also having real problems staying positive.

Is this as bad as it sounds? I forgot to ask for copies of all the tests. My brain was a little foggier than usual. I have Fibromyalgia, and the normal brain fog mixed with the stress did not help me be an intelligent asker of questions. I took notes and brought my sister along for an extra set of ears though.

Wow.

So does anyone know about promising clinical trials?

[Lori]

Jenny, I know this is mind boggling and the idea of having to move to Seattle, probably not the most comforting. But you will find the strength to perservere. Have you called a specialist yet or had your doctor call a specialist? Also, did the docs run an HCG test (another tumor marker)?

I know each case is different, but I thought I'd share a bit of ours in hope that it helps. One day I was working with my husband at his business and at the end of the day he had a golf size lump on the side of his neck. It was as if one minute it wasn't there and the next it was. We went to an Urgent Care clinic and he told Jon he had a pulled muscle. Stupid us believed him, for about a week. Next stop dr and as they say the rest is history. Jon's cancer was in his stomach, chest and both sides of his neck. We knew from day one that he would need chemo and up to 3 surgeries. We chose 4 rounds of EP. After the 2nd week the oncologist demanded that we get a second opinion as he didn't think the chemo was working. The tumors were growing and the tumor markers were not coming down consistently. We went to Sloan for a second opinion and called Dr. Einhorn. Both said continue with the third round but we scheduled a third opinion appt with Dr E after the third round. At that point Jon's chances of survival went from 50% to a lot less. We would told he was chemo resistent and the only chance of survival was High Dose Chemo with Stem Cell transplant. That night was truly awful.

Well we moved to Indiana for 2 months, had HDC and the blood cancer responded to the chemo, yet the masses throughout his body continue to grow slightly. Off to chest/neck surgery then 5 weeks later the RPLND. It has been 11 months since the HDC and 8 months since the RPLND. All of Jon's checks have been clear and we pray every day for Jon's continued good health.

After that awful appt with Dr. E we both never again asked for statistics. For us it wasn't about the numbers, it was having the hope and the wherewithal to do whatever we needed to do to get Jon better!

Please continue to have Hope! Use this forum to provide information on your boyfriends disease and treatment. Let the amazing people here help you fight this. Remember that Lance Armstrong's AFP was through the roof, as I believe, others here on this sight.

One question, are the docs suggesting a clinical trial over BEP?

Good luck and please keep us posted.

[dadmo]

Jenny:
Don't focus on that 40% it's just a number whether that number was 10 or 90 you would still have the same steps to follow. Yes your husbands markers are high but we have members who's number were far worse and their still around years after treatment.
All of the scans that are being done are standard. The normal path for this disease to follow is from the testicle to the lymph nodes then lungs then brain. That’s the reason you doc wants to check those areas.
You're doing the right thing being open minded about clinical trials but you have no reason to think that the 4 rounds of BEP won't be a cure.
To star getting ready for Monday you may want to visit the place where the chemo will be give (there not that scary) and get any prescriptions you're going to need. Not all pharmacies will have everything on the shelf and it may take a day or two to fill them.
When you go back and check your notes please let us know as much information as you can about your husband case.

[Scott]

So does anyone know about promising clinical trials?

Jenny, you can contact LIVESTRONG SurvivorCare at 866-467-7205 for help locating a matching clinical trial.

We're pulling for both of you...

[Already Bald]

Jenny,
Don't despair- remember that chemo is indiscriminate, the 4 cycles of BEP will flow through every cell in his body and is the perfect coctail to kill off fast moving TC Cancer cells. Even the cells that are microscopic and can't be detected through scans.
Read Lance's book, "It's not about the Bike", and then think about what he went on to acheive.
Best to you,

[JennyP]

Today is better

Mike's HCG (?) is 62--- the doctor said it should be around 4.

The oncologist said he thought Mike was T2 M2 S3. Is that a description of the kinds of cancer? He wasn't sure yet though, he was waiting on more tests to be sure.

The pathology report says it's a mixed germ cell tumor, predominantly seminoma with a small amount of yolk sac tumor, which I'm assuming must be the part the doctor was really worried about. He talked about embryonal carcinoma.

Any suggestions on how to support Mike emotionally? He knows I'm here and that I'm up for anything, but it doesn't seem like enough. I try to ask, but he doesn't want to talk about it, or doesn't know what he needs. Any tips?

I'm halfway through the Armstrong book, and Mike is right behind me. Very inspiring and reassuring, just like everyone says. Thank you.

The oncologist let us know that the clinical trials were an option that might up Mike's chances, but that it was something he would have to decide on. He said that there are alot of amazing doctors and options in Seattle that aren't available yet here as treatment protocol.

[Scott]

The oncologist said he thought Mike was T2 M2 S3. Is that a description of the kinds of cancer?

That's staging information. See this link for details. Are you getting some help looking into clinical trials, or do you expect to start 4xBEP soon?