Pure Seminoma

[ssavino]

My Husband's pathology came back as a pure seminoma with no invasion anywhere. Doctor is reccomending radiation. We are in process of getting second opinions. For those of you who have had this and had Radiation how was the therapy and are you glad thats the route you took. Were there any major downsides to Radiation?
Thank you in advance.
Sarah

[rjs]

From your post, it looks like your husband and I matched diagnosis and age. I took the radiation route and felt really good about it. My Oncologist did offer an option to me of following a strict surveilliance schedule, but for me the best route was to take all the steps I could now to prevent any recurrence. Many will post here with all types of percentages (all favorable) about which way to go. In the end, the percentages drove me crazy since I had already fallen into the percentage who got cancer in the first place. With pure seminoma you have the benefit of choice and knowing that either choice offers a good outcome. So it boils down to what you feel most comfortable doing.

The treatment itself was easy. Lasted almost 4 weeks and the sessions were less than 15 minutes which included set-up on the machine. Side effects included heavy fatigue (which set in over time), constant nausea, and slight redness on the radiated area of the stomach and back. I never got sick to my stomach, but some do. And I also never needed nausea medication, but that was offered to me. The fatigue was the hardest part, but I took it easy, rested and had some of my best sleeps ever during those weeks. I found the best thing for nausea was to eat something (slowly) and it seemed to help settle things.

I am now 18 months out from diagnosis and feeling very good about everything. No lingering side effects. Continue to be cancer free. And life is back to normal. (Or a new normal as some would say once they get through this) One note, if you are looking to have children, make sure you seek consultation on having the shield added during the treatment. They can place a shield over the remaining testicle during the actual session to prevent some scatter radiation. You may also want to consider banking sperm as a precaution or at least testing to see what his counts currently are. Some TC patients have low counts or are infertile and do not know it. SO knowing before treatment is important to help make decisions. I opted to bank as a precaution since if you fall into the wrong percentage and the scatter radiation causes you to lose fertility then there is no going back. The odds are low for fertility issues, but I always err on the side of caution.

Good luck and keep asking questions.

-rs

[Michael112]

The growing trend on this board is survalience for stage 1 seminoma.
Although its more a personal decision then a medical decision.

Basicly theres only a 20% chance of needing it, survalience vs RT does not effect long term prognosis. In the case that down the road spread does pop up 5 in 6 cases will be salvaged with radiation and the other will need chemo therapy.

The reason doctors love RT is because it gives the patient a chance to put the cancer behind them, they can also say, "theres 98% chance ur cured and even if your not, we will cure you then, enjoy your life, your very lucky."

I felt a lot of pressure from a couple of my doctors to have radiation, but now I can turn around and say its simply not an option for me as I have a court case infront of me wich will go on for 6 months - 2 years, I wouldnt want to vomit inside the court room, or go on the witness stand suffering fatigue as it will screw the case up.

[djmac]

Hi Michael,

The effects of nausea should only happen during the radiation, and maybe for a little while afterwards from what I understand.

Regards,

djm

[Sans rt1]

If your husband's pathology showed no invasion, and his CT was clean, then surveillance is a reasonable choice. It means you don't get treated if you don't need to.

But, you need to be the kind of person that will stay current with all follow-up visits (not just initially, but for the long term), and are the type that will not worry excessively about the uncertainty (I guess it is up to 20% chance recurrence, drops to probably less than 5% with treatment - if it comes back in the abdominal lymph nodes, which is the most likely area, it usually can be treated with RT, but a little larger dose over more days and probably would be the dog-leg rather than the para-aortic only). I considered the single dose carbplatin, but what I read showed similar success rate and similar risks, but less long-term monitoring data.

I had a fairly large tumor with invasion, so felt the chances were even higher and chose RT. A reasonable choice for me - and it would be for your husband too. During my RT, I was able to work, but chose shorter days, and rested a lot. A little queasy during the whole thing, but never sick - I never took any anti-nausea drugs though.

RT has its side effects, and long term risks as well, which must weigh in the decision. Am I happy with my choice? Yes and no. I think I made a reasonable decision, I am confident I am cured, but 6 months out I am experiencing a mild side-effect (I am told that some adhesions have formed in the muscles and connective tissues in my lower back - the result of scarring from the RT. It is only a mild discomfort - and once I found it was not a symptom of a recurrence - I can live with it and hopefully it will get better with time and some physical therapy. Also, I am told it is a very, very rare side effect - some people are prone to scaring, but most are not).

Good luck to you and your husband - he will be cure - and most likely already is.

[clyde_on]

From TCRC

all you need to know,



Seminoma

Why should you choose surveillance?

You want to avoid any unnecessary radiation. Some studies have shown that this type of radiation will increase your risk of getting another cancer by as much as 4%. You feel that you'd rather not get the treatment unless you know you actually need it.
Your odds of recurrence are lower than normal (For example, the tumor was smaller than 4cm, you are more than 35 years old, and the tumor showed no evidence of vascular invasion), and you do not want to put yourself through any further treatment without knowing that it is actually necessary.
You would rather think that you have been cured than know you have been radiated.
You can live with the idea that some cancer might still be in there, but radiation, and maybe chemotherapy will act as your safety net if it ever comes back.
You believe that you could stick to the surveillance schedule without much problem. (In other words, you don't travel a lot and you will not try to put off seeing the doctor.)
You believe that you have already been cured, and you do not want to put yourself through any further treatment without evidence that it is actually needed.
You are not comfortable with the expertise or quality of the radiation oncologist or radiation equipment available to you.
You are interested in having a baby NOW, and you want to try to do it the old fashioned way.
You are interested in conceiving a baby in the next year or two, and you do not want to worry about the effects of radiation on your sperm.
Your odds of being cured are the same as if you chose any other treatment, so why not minimize the immediate pain and take your chances later?
Your job, finances or personal life would be more convenient if you waited until another time to be treated. In other words, you can handle getting treatment, but now is not a good time. (For example, if your wife just had a baby or you are nearing the end of school.)
This is an unusual one, but important. If this is your second time around with seminoma and you have had prior radiation, surveillance is pretty much your best option.

Why should you NOT choose surveillance?

You cannot live with the idea that there might be cancer growing inside of you while you sit idly by and do "nothing." In other words, to be sure, now.
Your odds of recurrence are much higher than normal, (For example, the tumor was larger than 4cm, you are less than 35 years old, and the tumor showed evidence of vascular invasion) and you'd like to do whatever you can to avoid chemotherapy.
You ignored that lump for a long time, and in spite of what you have been told, you have a hard time believing that you caught it before it spread.
You do not have easy access to a hospital with a CT scanner.
Your job or personality make it difficult to ensure that you would stay on the strict surveillance schedule.
Your job, finances or personal life would be more convenient if you got the whole thing out of way now. In other words, you can handle getting treatment now, but waiting and possibly getting it at some random time in the future may not work out. (For example, if your wife is going to have a baby in the near future, you might not want to have to worry about going through treatments at an inopportune time.)
Your job or hobby (scuba diver, jet pilot, for example) would be adversely affected by the side effects of chemotherapy, and you want to do whatever you can to avoid it.


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It is possible that there may be some financial concerns that might sway you one way or the other. Clearly, it is cheaper in the very short run to go with surveillance. However, those CT scans all add up, and over the next 2-5 years surveillance may actually cost more than treatment (I'm really not sure about this). Similarly, if you are uninsured and you can get someone to pay for treatment now, then it might make sense to do it now since that option may disappear as time goes by. Alternatively, you might not have insurance now, but you might expect that you will be able to get coverage within a year. Obviously this is a difficult problem, and I'm not sure I have really helped much. I would tend to advise people to separate their finances from the decision if that is at all possible.

OK, you've done your reading, grilled your doctor, and surveillance is the path you've chosen--what else do you need to do?


Follow Up, Follow UP, FOLLOW UP!!!

[Rob2time]

Well, I had radiation in 1973, and went 33 years without any problems. There isn't anyway to know whether that would have happened without the therapy, but I suspect it would not have.

My wife and I had a daughter in 1981, so radiation doesn't mean that can't happen either.

I made the decision to have radiation, so for what it is worth, especially with modern technology, I'd recommend your husband really consider taking the treatment.