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Andy, I am curious as to why they recommended RT plus Carboplatin for you at the time of your reoccurrence - this combination of RT plus chemo doesn't seem to be a 'standard' protocol for seminoma here in the U.S. Where was your reoccurrence, in the lymph nodes only or (also) in the lungs or any other organs? How large were the masses they found with your reoccurrence ?
I'm not really sure to be honest.. I asked and researched it at the time and it seemed that there was some research that had been done in the UK but not enough for it to be accepted as a standard protocol, I am under Prof Horwich at the Royal Marsden in the UK and as far as I know he is one of the leading lights in TC in the UK. The recurrence was in a lymph node and was just over 1cm, I think their thinking was that the RT plus one dose of carbo was making doubly sure - i couldn't see any harm in it so went along with it! not sure if this is the best way to be! As for still having CT scans, again I'm not really sure, it seems that at The Royal Marsden they now seem to be extra vigilant, the consultant was saying to me that the CT will show any other abnormalities cancerous or otherwise and then also I think in a year they are going to do a general health check on me, including things like cholesterol, organ functions etc etc, again I am sort of just going along with it as I can't see it being too bad a thing..
cbuysse,
Congrats on putting the RT behind you, moving on and feeling great! Keep us posted on your follow ups! Health and happiness going forward///Karen.
Well I went ahead with the Radiation and it is over. It was such a toss up as to whether I should do it or not or not that in the end for me it came down to my wife and children. I have four young children and a very worried wife and I didn't want to put her through surveillance or a possible reoccurrence. Had I been single with only me to think of I may have leaned the other way it was that close of a decision. It has been two weeks since I wrapped up the Rad and I am feeling great.
Andy, I am curious as to why they recommended RT plus Carboplatin for you at the time of your reoccurrence - this combination of RT plus chemo doesn't seem to be a 'standard' protocol for seminoma here in the U.S. Where was your reoccurrence, in the lymph nodes only or (also) in the lungs or any other organs? How large were the masses they found with your reoccurrence ?
The TCRC information about surveillance after treatment says, "Our surveillance protocols do not call for abdominal CT scans post RPLND or post radiation. Studies have shown that the odds of a recurrence in the retroperitoneum are very small following these therapies, and these odds do not justify the use of a CT scan."
Karen, that's good to know. My urologist said no need for CT scans at all after RT, which may be part of the reason why he recommends RT over surveillance, but I thought it would be risky to not do any CT's anymore after RT.
My husband's post RT follow ups are every three months for the first 4 years with a physical exam and markers each visit, ab/pelvic CAT every 6 months and chest x-ray once a year.
i had radiation and they still did ab/pelvis scans on me each time for the first year or so. i think i had a chest/ab/pelvis scan done only once after treatment but several chest x-rays. now i just have chest x-rays from here on out with tumor markers.
not sure if my experience will actually help with any decisions partly because I am in the UK and my treatment was a bit different.
Like you I was diagnosed with pure seminoma <4cm (i think it was about 2) when they suggested surveillance v rad treatment we thought long & hard about it but in the end chose surveillance as it seemed that if I did have a classic recurrence i would have basically the same treatment as I would have had if i didn't choose surveillance albeit a higher dose of rad.
When a year later I did get the recurrence I had 15 days of rad + 1 dose of carbo - I'm not trying to suggest that because I got a recurrence everyone in my situation should immediatley go for radiation treatment, it was just bad luck that i happened to be one of the 30%.. i don't really regret going the surveillance route really it was just like delaying the radiation treatment for a year.. the chemo was a bit of a suprise but one dose was ok
I feel now that I have had the best chance of clearing it without having to endure anything too heavy. One thing, I was told after the CT scan that I had after the treatment that I wouldn't be having anymore scans, but a year later they had changed their surveillance protocol again and I'm now back on 6 monthly CT scans - I haven't really got to the bottom of why, its not anything particular to me, its what they do for all people in my situation now at The Royal Marsden..
Sorry, this probably hasn't helped make the decision any easier, as all have said there is no right or wrong answer..
Hi cbuysse, have you made a decision meanwhile between radiation and surveillance? I am curious as I am still trying to finda good answer (or criteria for it) myself ...
The biggest difference between pure surveillence and follow-ups after radiation treatment is the frequency of visits and the types of tests run. Make sure you research the treatment protocols on this site for the typical follow-up schedules. I chose the radiation path b/c I did not want to face the uncertainty of the monthly exams and for me the radiation route offered me the most comfort. But with a diagnosis of seminoma the good news is that you have choices and they all offer a very high percentage of success. Study all the choices, ask lots of questions and choose what is best for you.
Surveillance is required with or without the radiation therapy. One difference is that you don't need abdominal CT scans if you go with radiation, as the likelihood of recurrence in the radiated area is nil.
I am exactly in the same boat as of today. I just got my pathology report after having my orchiectomy last Friday. Also Classic Seminoma in three separate nodules ranging from 0.4 to 1.8cm in the right testis. Doctor recommended radiation. My question is even if I do radiation for a month, do I still need to go under surveillance afterwards as if I didn't opt for radiation? If so, then it seems that surveillance is in both pictures and that it just seems that radiation is thrown in as a means to try to decrease the long-term possibility of a recurrence.
While I haven't been able to find statistics, it's my understanding that a recurrence of seminoma in the retroperitoneal lymph nodes of less than 3 cm is typically treated with radiation therapy, while larger nodes or spread to other parts of the body are treated with chemotherapy instead. by Scott
Scott's information is basically what I was told when I was faced with this choice 2.5 years ago.
I chose surveillance.
Low risk factors for recurrence of seminoma
1. age > 35
2. no angiolymphatic invasion
3. tumor size < 4 cm
I met all three of these low risk factors, but ultimately, my decision came down the the fact that there was no evidence of cancer in my body after the I/O, and before I exposed myself to radiation, i had to KNOW it was necessary.
It's not an easy decision and if you go the surveillance route you have to ABSOLUTELY stick to your schedule for testing.
While I haven't been able to find statistics, it's my understanding that a recurrence of seminoma in the retroperitoneal lymph nodes of less than 3 cm is typically treated with radiation therapy, while larger nodes or spread to other parts of the body are treated with chemotherapy instead.
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