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I’ve had plenty of labs to confirm afp returning to normal but this was my first CT since the partial I/O and local radiation.
My wife Sara doesn’t read this stuff but she gets a huge Thank You. I’ve been a bit jumpy the last couple of weeks in anticipation and she has been incredible. Also thank you to everyone here at the forum.
My onc spoke to Einhorn and confirmed we are starting again with year 1 nccn surveillance protocol. Piece of cake.
My primary goal was to avoid HRT...for the rest of my life and for all of the reasons Scott listed. Fertility was not an issue. We have 2 incredible boys. Also the process of HRT isn't all that appealing to me, shots, gel, yuck
There are worse things than TRT so we were always prepared to do the full I/O and TRT if needed. If the MD couldn't get clear margins, if blood flow was compromised or if something just didn't look right we wanted the surgeon to take the whole thing. We prepared for that possibility by getting testosterone levels done before surgery. This might make it easier to zero in on my natural levels should we need TRT. They came back on the low side of normal but it's tough to say if the testicle can really do its job with a tumor growing in it?
At some point down the road I may still need TRT. It's not clear if the damage will affect the testicle long term.
Today, having 80% of 1 testicle is no different than having 1, or 2. I consider myself fortunate.
Besides the psychological effect, the main physical effect is the body's loss of its testosterone factory. With both testicles gone, testosterone replacement therapy is required for the rest of your life. Too little testosterone may cause fatigue, depression, hot flashes, osteoporosis, and loss of libido.
Question?
Please do not take this wrong I am kinda uninformed about alot of this cancer stuff but--
I am not sure why saving the testical is so important. I would feel better if any tissue that had cancer was removed from my body. Of course, I am not the one that is going through the procedure.
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I had my left testical removed and have really experienced very little problems. Does removing both testicals create a serious problem? What side effect would a person experience?
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I just feel like any tissue that had cancer would be better off removed from my body. And if I had it to do over again I would request my lumph nodes to be removed instead of the chemo supposely killing the cancer cells.
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Again do not take this like I am half-baked or something, I just really do not know and am trying to learn.
thanks!
Spoke to the radiation onc during a follow up the other day and looked at a more recent article that clarified some things.
The article, Partial orchidectomy for malignancy with consideration of carcinoma in situ Jan Feb 2006, described that CIS / ITGN is found contralaterally about 5% of the time and that CIS leads to invasive carcinoma within 5 years 50% of the time.
So it seems that approximately 2.5% of the TC population would be at risk of getting TC twice? Of course I probably shouldn’t do that with the numbers.
Anyway, the article also describes that when CIS is present, local radiation therapy is recommended; this retains potency but destroys fertility.
Also mentioned that some are treating with chemo (specifics not stated) in an attempt to preserve both potency and fertility. But the unwritten suggestion might be that it is not yet proven as effective. Lastly it is important to know that the partial I/O in not practical for every case.
I was also curious about the non-seminoma / radiation connection. Both Dr Bihrle and Dr Einhorn stressed the importance of radiation for the testicle as part of the organ sparing procedure. We referenced an article from Germany titled Organ sparing surgery for malignant germ cell tumor of the testis. The docs also described that although radiation is not as effective for a non-seminoma as chemo the chemo is less effective in the testicle itself because of the "sanctuary" of the testicle. Similar to the blood-brain barrier.
Pathology did show lymphovascular invasion and the radiation oncologist expected we would treat the first echelon of lymph nodes. Indiana said no. Radiation would be for the testicle only. Any spread to the nodes would be treated separate with BEP and or RPLND.
This second diagnosis was September 12, 2006 after clean labs and CT August 21, 2006. My Hematology Oncologist expected we would do 1-2 BEP based on the path report. Again, Indiana said no. It appears (and I’m guessing) Indiana has some level of comfort with the recent August CT and with the fact AFP returned to normal after the I/O. For now – no BEP.
Next CT is December 18 so jingle bells – no balls about it.
Thanks for sharing your story. And, congratulations on your successful treatment!
Hopefully I will never need it, but you provided some great information on the partial I/O option for a second TC - when it might be an option and the need to call in the experts because many local urologists might not be comfortable with it.
I find that knowledge can be comforting - that knowing the options and what might happen helps me not worry about the "what if's" as much. I have printed your post and placed it in my TC file. Thanks again for sharing.
Welcome, Rover! I'm glad you "uncloaked." Thanks for sharing your very interesting story. Do you have more details about why radiation was appropriate? You don't usually hear about that with non-seminoma, but this is clearly not a "usual" situation.
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