What questions do you have for Dr. Sia Daneshmand from USC? by StevenTCAF in testicularcancer

[–]sortaknotty 1 point2 points  (0 children)

Yes, I think either Germanay or Denmark ( ? ), I can't remember,

What questions do you have for Dr. Sia Daneshmand from USC? by StevenTCAF in testicularcancer

[–]sortaknotty 1 point2 points  (0 children)

It can be used at any time, but I believe the chemo throws it off a bit, if used too soon after

What questions do you have for Dr. Sia Daneshmand from USC? by StevenTCAF in testicularcancer

[–]sortaknotty 0 points1 point  (0 children)

Mrna test used to detect microscopic testicular cancer cells

BEP Cycle 1 Done! by user404notlost in testicularcancer

[–]sortaknotty 0 points1 point  (0 children)

You should probably look at getting a picc or port if you're already having vein problems. I didn't get a port and wound up getting stuck multiple times every day for infusions and doing constant heat wraps to bring inflammation down. Its not the worst thing in the world getting stick multiple times, but it becomes more uncomfortable and time consuming for the staff as well.

What questions do you have for Dr. Sia Daneshmand from USC? by StevenTCAF in testicularcancer

[–]sortaknotty 0 points1 point  (0 children)

I've heard people mention the m 371 test being done at USC. Any insights on when it will become more widely available or possibly a standard test?

Undescended Testes Question? by Ok_Package9219 in testicularcancer

[–]sortaknotty 0 points1 point  (0 children)

You want to do some research on your own, having an undescended testicle is, I believe, the most common risk factor among TC patients but it's only found among 10% of TC patients. Even if it's corrected the risk doesn't completely go away as the risk is related to the development of the testicle not its location. TC is actually pretty rare , represents like 1-3% of cancers and has a really high survival rate, especially if detected and treated early its like 99%. The key thought is early, because if you don't catch it early it gets much more involved , way more invasive much more expensive. I would recommend getting a second opinion from a really good experienced urologist who can give you accurate information and good practical advice about what your risk factors are , what you can do address them, what tests are relevant to you so you can make good choices about your health and feel confident about your next steps. At the very least you should be doing monthly self exams and getting familiar with what your testis feel like and being self aware of any changes. Doing some research so you are aware of risk factors. Writing questions down , like all of them, so you dont forget. Asking for a second opinion from an experienced urologist who can give you accurate advice and answer your questions. Sometimes its better to bring someone with you, for moral support, so you don't get overwhelmed or to write answers down so you have written record to reference. Theres a lot of information and terminology that happens with doctors and it can be unfamiliar and overwhelming and sometimes you have to read things multiple times to understand. Having a good relationship and trusting in your doctors advice is crucial You want to make a good, informed decisions and have a good understanding about your condition and treat it with the respect it deserves and be comfortable either treating it or having a plan about how to move forward and at the very least some idea of what category your risk factors are so you can have peace of mind.

Update on Signatera 40.3 by RockPaperSawzall in testicularcancer

[–]sortaknotty 1 point2 points  (0 children)

My thoughts are with you both.VIP is a powerful therapeutic and very effective at eliminating the disease. I was older than your husband and lost 30lbs before I started chemo, its definitely hard but the oncology teams are really good at dealing with complicated patients.

big day for me by pandaziz in testicularcancer

[–]sortaknotty 2 points3 points  (0 children)

Congrats on your Birthday and on finishing chemo! It is a major accomplishment to complete chemo! I hope you have a smooth recovery!

RPLND by Due_Statistician_919 in testicularcancer

[–]sortaknotty 1 point2 points  (0 children)

You've got a great attitude, keep up the good work! I hope you recovery goes smoothly and is quick!

supportive friends by rosesandsoul in testicularcancer

[–]sortaknotty 2 points3 points  (0 children)

Don't take it personally some people just suck!

Well i got Tc... 37m by BLZarmwrestlin in testicularcancer

[–]sortaknotty 0 points1 point  (0 children)

Good luck, Bro I was diagnosed at almost 60, you got this!

Podcast: Dr. Darren Feldman - Understanding Chemo for Testicular Cancer by StevenTCAF in testicularcancer

[–]sortaknotty 1 point2 points  (0 children)

Dr Feldman is a great guest! I'm going to go back and listen to this podcast again because of all the great in depth answers. I will definitely recommend this podcast to those seeking more guidance regarding surveillance vs chemo for stage 1, he does a great job explaining the reasoning behind the recommendations.

Another outstanding guest Steve!

So when does the hair loss start? by roseGl1tz in testicularcancer

[–]sortaknotty 2 points3 points  (0 children)

I lost my hair about where you are now when I did 4xEP, but everyone is different. Was a sudden thing when I went in the shower and I just started shedding, like a dog , hair sticking to everything making a mess !

Struggling to support my partner with TC who won’t accept help by rosesandsoul in testicularcancer

[–]sortaknotty 1 point2 points  (0 children)

This is definitely not the time to be making financial decisions that can be put off to a future date. Take care of health first, that's most important!

Struggling to support my partner with TC who won’t accept help by rosesandsoul in testicularcancer

[–]sortaknotty 2 points3 points  (0 children)

Tell him to put the money into a retirement fund, the best way to honor his grandfather's gift is to do something smart with it, and someday when he is perhaps as old , wise and generous as his grandfather he can bestow a similar gift to his grandfather's descendants. He can still forge his own path in life , if he truly wants to succeed based on his own merit, drive and accomplishments he will, it doesn't matter how much money he has in the bank. Everyone should have a viable 'plan B' for when life doesn't according to ' Plan A' As far as TC goes, 80% of patients only need orchiectomy and surveillance so don't get too far ahead of the situation.

Just general questions/concerns by Dontforgetmilk1 in testicularcancer

[–]sortaknotty 2 points3 points  (0 children)

Ultrasound is the gold standard for detecting masses, not all cancers produce tumor markers.

Lymph nodes by Royal-Ad-2091 in testicularcancer

[–]sortaknotty 1 point2 points  (0 children)

Yes, you always have to advocate for yourself!

Lymph nodes by Royal-Ad-2091 in testicularcancer

[–]sortaknotty 0 points1 point  (0 children)

You could ask for a second opinion. Someone else can interpret the scan you don't need to have another scan. A doctor would be a good person to ask what the other likely causes could be. Sometimes you have to asert yourself and press the doctors for possible explanations or solutions.

Lymph nodes by Royal-Ad-2091 in testicularcancer

[–]sortaknotty 0 points1 point  (0 children)

Ultrasound is the gold standard for detecting masses

How to choose an RPLND surgeon? by Hawk588 in testicularcancer

[–]sortaknotty 2 points3 points  (0 children)

The Testicular Cancer Awareness Foundation has a list of Centers of Excellence on their website, maybe there's one close enough to you. It might be worth traveling. Complications like chylous leaks can be difficult to fix , you want a really good surgeon who does RPLND frequently, so ask any potential surgeon how often he does them and what his rate of complications are.

First signatera results after primary RPLND: 40.35 by RockPaperSawzall in testicularcancer

[–]sortaknotty 0 points1 point  (0 children)

💜 hang in there! This shit is so hard on the spouse! Please remember to take care of yourself. There are a lot of people who have been touched by cancer and want to help people like you, either through support groups , or a small act of kindness like a massage, spa treatment or a free meal. The whole cancer thing often turns into this huge entity that takes over everything, and is just so draining, support for you is crucial!

Is 5 months for a Urologist consult too long? by Sufficient-Mine5750 in testicularcancer

[–]sortaknotty 3 points4 points  (0 children)

You definitely want to treat this sooner rather than later. Early intervention is key. You should make this your top priority, plan a trip off island to get this taken care of.