Educational Support Meeting

[dannysbrother]

Well, I was extremely disappointed to meet Bill and Nancy. Boy, were they boring.

LOL! Bill, Nancy, it was WONDERFUL to meet you both today. You guys are great! Thank you so much for lunch, we had a great time. You son is so lucky to have such caring and involved parents!

I felt like the meeting today really barely scratched the surface. Most of the time was spent explaining each case and I felt like we were just getting into some really important and insightful issues when time was up. I think this should definately be made a once or twice a month group so that patients and survivors can get more in depth with their issues, stories and concerns.

Mike (the guy we met today) was stage IIb seminoma. According to what he said, Motzer thought he was exactly borderline in terms of Chemo or Radiation Therapy. They believe the size of the tumor was ever so slightly below the mark that would indicate chemo, but definately close enough where chemo would be an acceptable option. Mike said they would watch it over the next few weeks to see which was more appropriate. Something doesn't sound right.

I think Bill and I both looked at each other and cocked our heads like confused dogs and let mike know that THE SOONER THE BETTER, DO SOMETHING! Hopefully he will contact Motzer again asap with his concerns. And Einhorn too for a second opinion.

Hope both men will find the forum!

-M

[dadmo]

This meetings at Sloan could be a great resource but as soon as the clock said "time's up" we had to leave. Nancy and I are now talking about hosting a discussion group in our home.

[Scott]

OK. First meeting August 11?

[dadmo]

In general as a community we are very much underserved even at a place like Sloan. They may have the medical portion nailed down but they have missed the mark on the effect on us as humans.

[Fed]

First to the technical question...

With regards to the seminoma patient, what am I missing? If it's pure seminoma it's radiation, if it non-seminoma or mixed it's chemo and if it's stage II you don't simply watch do you?

I can answer the seminoma component of the question, since I discussed this thoroughly with my oncologist (after all, if someone with stage I seminoma on surveillance relapses, he will be at least stage II the next time around). The NCCN guidelines state that if you are stage II, you get zapped, but at twice the dose as adjuvant radiation (35-40 Gy); however, if you are II-C (multiple nodes or nodes larger than 5 cm), an alternative treatment would be 4xEP. My oncologist told me that if someone Dx'd with stage I seminoma on surveillance ended up relapsing, he would recommend chemo because a relapse raises the possibility that lung or mediastinal mets could be in the horizon. Radiation will only treat the retroperitoneal lymph nodes, but not other places where cancer could be hiding. DFCI tends to pioneer things like these such as no RT for stage I-A patients like yours truly (after all, it is a center of excellence).

In general as a community we are very much underserved even at a place like Sloan. They may have the medical portion nailed down but they have missed the mark on the effect on us as humans.

Part of the problem is that there are very few of us. At the hospital I see postings for educational and support meetings for GI cancers, breast cancer, prostate cancer... but never for TC. The effect on humans is huge, and sometimes it is equally as hard as the physical effects. Yup, I'm up for a meeting a month from tomorrow .

[dannysbrother]

In general as a community we are very much underserved even at a place like Sloan. They may have the medical portion nailed down but they have missed the mark on the effect on us as humans.

Yes I agree.

I do have to say though that Sloan does offer this group as a free service to anyone even if not treated at Sloan and although it's not enough, at least it is a start. I know that I'm going to contact the moderators of the group at Sloan and let them know my feelings on how beneficial this group could be if it met more frequently and for a longer period of time. I feel like it is something worth the dollars needed to expand it.

-M

[dadmo]

Nancy mentioned that she may call moderator today. She wants to invite Tom and Roy on the 11th. I felt bad for Roy he got no help at all. If he can meet mom's husband (Jay), who lost both it might help him a bit. If nothing else he won't feel so alone.

[MRMRSU]

Part of the problem is that there are very few of us. At the hospital I see postings for educational and support meetings for GI cancers, breast cancer, prostate cancer... but never for TC. The effect on humans is huge, and sometimes it is equally as hard as the physical effects.

Hi guys! I've been keeping tabs on this post since I first saw it...we wish we lived in the East Coast to be able to join you at meetings like this. Despite the short timeframe for the meeting at Sloan, it was nice to see that they had anything like it to begin with for TC. I agree with Fed that it has to do with the fact that there are so few...TC represents such a small percentage of cancers so sadly it doesn't get the proper attention. It's the same way, if not worse here in California. Back to the discussion Boyce started on another thread about most people's attitudes...we got a lot of these: "Oh, what kind of cancer does he have? Oh, that's so curable." And yes the success-story numbers are good, but comments like that downplay the mental and physical toll testicular cancer takes on guys and their loved ones.

Hoping that you can convince the moderators at Sloan for more frequent meetings...and we'll keep our fingers crossed for something similar soon in the West Coast.

[drom]

We would love to see more of these meetings, Kim (my wife) and I would love to go. Alex (our son who had TC) isn't wild about going yet but he still needs time.

We would go.

Domenic

[Mom]

Dadmo, it would be nice to hook up with Roy. There is no reason at all that he can't live a very wonderful, fulfilling life having lost both testicles. Actually, other than the children issue, with the right dosage and delivery system of TRT, he should not feel any difference. It does take awhile to get everything right, but once that is done, he will be fine. It is very disturbing to think he might be suffering for no reason, and suffering he is with no TRT. Hope you can get him to come on the 11th or let Jay have a private telcon with him. Dianne

[dadmo]

He's tried several different HRT and none have really seemed to do the trick. He said the mood swings are tough on his wife and his step-children. The social worker recommended counseling, which he has been to with his wife, but he recognizes that it’s him and not her and when his meds aren't right he's not a nice person. He was really searching for something he just couldn't get at this meeting. He’s also never met with anyone who has lost both so he feels very alone.

[Mom]

The mood swings are horrible and I am not sure they even recognize they are going through them at the time. The wife and kids sure know. One other thing, I do not allow gin in the house.

[dadmo]

Sept. 25th Educational Support

On July 10th Memorial Sloan Kettering Cancer Center will be conducting a one and a half hour Educational Support Meeting for people effected by Testicular Cancer. Nancy and I are planning on being there.

Here's the info

Testicular Cancer
Tuesday September 25, 2007
3:00 PM to 4:30 PM

Type:
Educational Support Meeting

Presentation:
Meeting for Testicular Cancer Survivors

Summary:
This is a diagnosis-specific meeting that is co-led by social workers and nurses, and is tailored to give people an opportunity to work on adjustment to life after treatment. This may include changes in physical functioning, appearance, and lifestyle, altered self-image, fatigue, isolation, and concerns about the future. Participants are encouraged to share concerns while gathering medical and rehabilitation information from healthcare staff.

Sponsor:
Post-Treatment Resource Program

Speaker(s):
Richard Glassman, LCSW
MaryAnn Carousso, NP

Audience:
This program is for men who have had testicular cancer. No observers, please, without prior approval.

Location:
Rockefeller Research Laboratories - Room 118
430 East 67th Street
(between York & First Avenues)
New York, New York 10021

Contact:
You must register to attend, please call 212-717-3527.
For further information, please call Richard Glassman, 646-422-4658.

Phone:
212-717-3527

E-mail:
[email protected]

[Bart]

Hey man,

Thanks a ton for offering! A topic i've been wondering about is the long term prognosis of people diagnosed with TC who also present microlithiasis of the testicle(s) at the time of diagnosis. I've read that there may be connections between microlithiasis and TC, and also that microlithiasis is bilateral is 80% of cases. My questions is if microlithiasis significantly increases the chance of getting TC in the remaining testicle, and if so, what are the statistics. E-A-G-L-E-S EAGLES!

Bobby

Wondering if anyone got some answers to Bobby's questions.

[Scott]

My questions is if microlithiasis significantly increases the chance of getting TC in the remaining testicle, and if so, what are the statistics.

The only information I've read on this topic says that only a small percentage (maybe 2-3%) of men with microlithiasis develop malignancy. I believe it's worth keeping an eye on, but I wouldn't say that it significantly increases the odds of a second testicular cancer.