Surgery Question

[Fish]

Hey MDdad:

I'm in Howard county, if I can be of any help, let me know.

I'm glad you got the op moved up. Urologists should know better than to wait that long.

Good luck with the surgery, I'm sure you'll do fine.

[MDdad]

Thanks so much for the support everyone!

I am still waiting to get the info on my cousins as well as the info on my markers.

Karen, I will get in touch with these folks once this is over!

Already Bald: I live in Bel Air in Harford county. Is Dr. Vaughn the person to see?

[Already Bald]

Hi, MDdad, glad to see your surgery date moved forward and your warm welcome from forum members!Also, see this NCI page for more information on a familial testicular cancer study.

Very interesting read Scott, thanks for sharing.
MDdad, I also have a first cousin who was diagnosed, and successfuly cured by the I/O alone. He was 19 when he was diag, I was 39. We both had very similiar pathology, I just needed a little more treatment to get cured than he did.
I'm happy to hear that you are moving quicker now, once you get your pathology report, and post the results please.
I don't know where you live in maryland, but that is not far from PENN, and Dr. Vaughn is alwasy happy to see new patients.
(After your I/O, you really want an oncologist be your "attending").
Take it easy over the weekend, and remember- this is a highly treatable disease.

[Scott]

Hi, MDdad, glad to see your surgery date moved forward and your warm welcome from forum members!

Please let me know about the stuies regarding genetic links and TC.

Also, see this NCI page for more information on a familial testicular cancer study.

[Karen]

Good for you ...you are your own best advocate in this!!! We have members from MD so hopefully they will chime in or PM you if you want to talk.

I am very sorry about your cousin. While there is no scientific evidence YET that there is a genetic factor, there are many here with more than one family member diagnosed with this relatively rare cancer. As a scientist, my money is on a link yet to be discovered (of course as a scientist I don't have much money either ).

NCI is participating in the study, so it's in your back yard (almost) and members here are participating. I hope they chime in on this as well in you want to get involved, or contact NCI.

Genet Med. 2006 Dec;8(12):760-770.
Familial testicular cancer: Interest in genetic testing among high-risk family members.Peters JA, Vadaparampil ST, Kramer J, Moser RP, Court LJ, Loud J, Greene MH.
1 Clinical Genetics Branch (CGB), Division of Cancer Epidemiology and Genetics (DCEG), National Cancer Institute (NCI), National Institutes of Health (NIH), DHHS, Rockville, Maryland; 2 Department of Interdisciplinary Oncology, College of Medicine, University of South Florida, Tampa, Florida; 3 Division of Cancer Control and Special Populations (DCCPS), NCI, NIH, DHHS, Rockville, Maryland; 4 Currently at Caldera Pharmaceuticals, Los Alamos, New Mexico.

PURPOSE:: This study is part of an ongoing National Cancer Institute multidisciplinary, etiologically-focused, cross-sectional study of Familial Testicular Cancer (FTC). The current report targets interest in clinical genetic testing for susceptibility to FTC. METHODS:: Demographics, knowledge, health beliefs, and psychological and social factors were evaluated as covariates related to interest in genetic testing. RESULTS:: The majority (66%) of 229 participants (64 affected men, 66 unaffected men, and 99 women) from 47 multiple-case FTC families expressed interest in having a genetic test within 6 months, should such a test become available. Interest was similar among the three subgroups mentioned above. Worries about insurance discrimination based on genetic test results were associated with a significantly lower interest in testing. Alternatively, participants were more likely to be interested in genetic testing if they were younger and had higher levels of family support, a physician's recommendation supporting testing, cancer distress, and a need for information to inform the health care of their children. CONCLUSIONS:: This study reveals social and relationship factors that FTC survivors and their relatives considered important when contemplating the use of new genetic technologies. This is the first study describing hypothetical interest in genetic testing for familial testicular cancer.

[Margaret]

Welcome MDdad and great news about getting your appt. moved up. That was too long to wait. It is good news about your markers being normal, but this is still not something you want to wait around on.

I have been told by a few doctors that TC is not linked by families or by other conditions like hernias, I say that they don't always know what they are talking about. Many here have family history like you do. But that family history may have saved your life by making you more aware and more likely to be agressive about seeing a doctor.

I hope all goes well for you. My prayers and happy thoughts are with you and your family.

M

[Fed]

Just talked to the doctor's office a bit ago (raised a little H*ll), I have my surgery next Tuesday (9/11).

Stellar job! Congratulations on taking charge and moving on this quickly.

I am sorry about your cousin having had a more aggressive form of the disease. Rest assured that with proper and prompt treatment, you have an excellent chance of being cured.

The surgery is quite simple, takes about an hour, and is usually outpatient. No heavy lifting, and keep frozen peas handy for the swelling. Use the painkillers as needed, but try to wean yourself off them gradually (you don't want to be constipated). Each day will be better than the last.

Best of luck, and keep the questions coming.

[fuse929]

That is excellent that you got the appointment moved up......my urologist tried to schedule me for a week after my ultrasound and I didn't leave the office until he agreed to do it the next day.

It is promising that you have negative tumor markers. There is a good chance that if it is a cancerous mass, it may be a seminoma, which is a slower growing and less aggressive form of TC.

If you have any questions about what to expect from the I/O (how to prepare, how long to expect to be in bed, etc) don't be afraid to ask. We have a ton of members with a wealth of information to share.

Bobby

[MDdad]

Thanks for the fast replies! Just talked to the doctor's office a bit ago (raised a little H*ll), I have my surgery next Tuesday (9/11). Not as soon as I'd like, but way better then October and not bad considering how long I waited and it's only two weeks after my original visit with the urologist (and the follow up meeting wasn't until yesterday). I tend to think the receptionsist may not have felt the urgency in this -- just a guess, or they do so much of this they go through the motions so to speak.

Karen, you asked:

"So the markers for B-HCG and AFP were normal? What size is the mass on the ultrasound? If you can tell us what part of the world you're in other members may be able to PM you with names of Docs they know and trust.

Out of curiosity, what types of TC did your cousins have? First cousins? Same side of family? There are studies looking at genetic links for TC you may want to get involved in....others here are."

I was told the markers were negative (as in normal). I need to call and get the actual readings. I went in kind of unknowing and should have been getting copies of the info (I found this site last night, read it for about 2 hours).

I'll have an answer tonight on the types of TC my cousins had. I can tell you one had a slow growth cancer while the other had a very aggressive cancer. Unfortunately my cousin with the aggressive cancer is no longer with us.

I live in Maryland. Please let me know about the stuies regarding genetic links and TC.

Thanks again everyone.

[dadmo]

MDdad:
Welcome and holy cow 6 weeks( I didn't want to say **** with a new guy). As the others have said a new urologist is in order. He may be a great guy but if he gets this part wrong what else will he screw up.

[Already Bald]

Why not go to an expert now??
Take a look at this link:

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

You canc all the office closest to you and have them copied on the US report and labs?
We would all have liked to have our IO done by an expert, but we usually find these sites post IO.
Best,

[Fed]

I concur with Karen 100%. I've harped on this issue before, and it still confounds me: why do some docs think that and I/O can be delayed if one shows no tumor markers, but there is clear evidence of a solid mass in a testicle?! Don't these guys know that there are other, more aggressive tumors (embryonal carcinoma, for example) that sometimes don't produce any markers? They should all know by now that no markers does not necessarily mean seminoma. GRRRRRRR!!!

OK, now that I have gotten off my chest, I can give you the welcome to the Forum . I've heard of 1-2 week waits for an I/O, but 6 weeks? Dude, you need to find yourself another doc FAST. This surgery is quite simple, and time is of the essence.

We're here to help out (and we'll vent along with you, as you can see above ). Cheers,

[IowaBrian]

Surgery should be tomorrow not next month I would pressure the doctor if he still says next month find another doctor.
Good Luck
Brian

[Karen]

Welcome! I suggest that you get the labs and and scan films and hightail it to another urologist. That is a totally unacceptable time to wait for a relatively quick surgical procedure.

So the markers for B-HCG and AFP were normal? What size is the mass on the ultrasound? If you can tell us what part of the world you're in other members may be able to PM you with names of Docs they know and trust.

Out of curiosity, what types of TC did your cousins have? First cousins? Same side of family? There are studies looking at genetic links for TC you may want to get involved in....others here are.

Keep us posted and we'll walk you to the finish line with this!

[MDdad]

Hello to all here. First a very impressive and compassionate board!

I have been having pain for about 3 months in one of my testicles. I finally went last week to get it checked (yep, I know I waited like a dummy). I had blood work and a sonogram done. Went to the doctor yesterday for a follow up (9/5/07) the blood work came back negative, but the sonogram reveiled a "mass" in the painful testicle. The Dr. suggested to have the testicle removed because of potential TC and the fact the 2 of my cousins had testicles removed for TC.

I called this morning to set up an appointment for the procedure and was blown away that I was offered October 16 or the 24th. I want to have this removed early next week at the latest. I asked to have the doctor call me, but I'm kind of freaking out now and I'm not sure what to do. Should I call another docotor ASAP to set something up? Should I call the local hosptal? Kind of at a loss any suggestions would be greatly appreciated.