Hey everyone, new to this, but been lurking for a bit. I had surgery about 3 weeks ago to have the left guy removed and just met with Cancer Center yesterday. Blood and CT scans suggest that nothing has spread, but they did mention that the tumor was growing differently and was growing outside of the testicle. I chatted with medical oncologist, director of urology, and radiologist about what options are next. All recommended surveillance, but also gave the option of one dose of carboplatin. Surveillance sounds great, but I'm having a hard time accepting that...I know it's only a 10-20% chance of coming back, but reducing that down to only 5% with one dose of carboplatin sounds nice. The idea of risking that and ending up have it spread and doing full rounds of chemo kinda freaks me out. Anyone been through a similar situation? How did you base your decision? Side effects from one dose of carboplatin?
Surveillance or Carboplatin?
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5% is a heck of a lot better odds than 10-20. I decided on survallence and still ended up going thru hell and back. Its a personal choice but looking back i wish i would have done the 1 injection vs survallance. Might have saved me a whole lot of pain down the road.
But keep in mind nothing is s sure thing and what it comes down to is what makes you comfortable with what ever choice you decide.Jan 2012- U/S mass in Left testicle
Feb 2012- I/O performed to remove cancer
Mar 1,2012- pathology pure seminoma
Mar 7, 2012 PET SCAN stage IIa
April 2012 Mayo clinic carbolite.
May 2012 carbolite failed, started BEP x3
August 7th 2012- BEP complete
April 2013 CT/PET show relapse
May 2013 RPLND
Aug 2013 Relapse again Started VIeP x2
Oct 2013 HDC AUTOLOGOUS
Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
Feb 2014 confirmed false positive all clear FINALLY !
Jan 2015 1 year cancer free Pet/CT scan
Jan 2016 2 years cancer free "Pet/CT scan
Jan 2017 3 years cancer free "Pet/CT scan
Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays
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And then waaaaayyyy some. 3 x BEP, relapsed. RPLND,relapsed. 3 x VIeP relapsed. Then finally 2 HDC " high dose chemo with 2 stem cell replacement and now i am coming up in 5 yrs remissionJan 2012- U/S mass in Left testicle
Feb 2012- I/O performed to remove cancer
Mar 1,2012- pathology pure seminoma
Mar 7, 2012 PET SCAN stage IIa
April 2012 Mayo clinic carbolite.
May 2012 carbolite failed, started BEP x3
August 7th 2012- BEP complete
April 2013 CT/PET show relapse
May 2013 RPLND
Aug 2013 Relapse again Started VIeP x2
Oct 2013 HDC AUTOLOGOUS
Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
Feb 2014 confirmed false positive all clear FINALLY !
Jan 2015 1 year cancer free Pet/CT scan
Jan 2016 2 years cancer free "Pet/CT scan
Jan 2017 3 years cancer free "Pet/CT scan
Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays
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I had a similar situation. Stage IA pure Seminoma under 2cm and no RTI. Doctor gave me the same choice. I chose surveillance because even with Carboplatin you will need CT Scan so you are not sparing your body from radiation etc. The doc mentioned that they mostly do Carboplatin for people they are worried will not stick with the surveillance regimen (skip CT Scan for instance). If you are OK getting a CT Scan every 3 month + blood test, the outcome is the same 99% cure. Now I must say the week prior the CT Scan is HELL. I can't sleep. I feel I have every symptom etc.. If you are anxious like me, maybe carbo will get you to sleep better. Just don't forget carboplatin could have an impact on your long term health as well. It's not a simple medicine. Both choices are FINE.
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