Got my results

[MDdad]

Just got back from the doctor. It's organ confined seminoma. It says 1.6cm in greatest dimension. Blood work results (and I hope I type this right):

hcG, Beta -9

AFP, Serum Tumor Marker -6

Can anyone make sense of this?

Doctor seemed very optimistic and seemed with radiation I'll be fine.

Next step is the cat scan then to the onocologist for radiation.

As I said before, this board has been a wealth of info and it's good to read and talk to people who have been in the same situation.

[Fed]

So far, so good. The HCG is a tad high, but it should normalize gradually. Adjuvant radiation is a perfectly good course for the treatment of stage I seminoma. Many guys here have undergone that, so feel free to ask any questions regarding the future steps. Best of luck with the recovery,

[fuse929]

Glad to hear about the promising diagnosis! Keep us updated with your CT and Xray results. If you haven't already, be sure to discuss the possibility of surveillance with your team as well. You will get different opinions from different people, but it is nice to know your options, even if you have already set your mind on a specific treatment plan.

[Fish]

Congratulations on getting the IO out of the way. You might want to consider discussing surveillence with your oncologist if your CT scan is clear. While radiation is still considered standard for stage I seminoma, surveillence is gaining acceptance. You do have to commit to a more rigid follow up series of test however -- generally ct scans and or chest x-rays every 3-4 months for years 1-3, then every 6 months for years 4-7, then yearly, through 10 years. Some guys find this schedule stressful and would rather have radiation, just in case a few cancer cells are in the abdominal lymph nodes. Other guys don't want to get radiation since there is an 80% (or better in some cases) chance that they were cured by the IO, and thus the radiation exposure is not necessary.

Discuss the possibilities with you oncologist. I went to my oncologist fully expecting to get irradiated, and both he and a radiation oncologist recommended surveillence.

Ultimately it might come down to the decision you feel most comfortable with. Both choices are good options.

[veryworriedmom]

MD dad, we are in Maryland too. My son was recently diagnosed with seminoma. On the good advice of this forum it was suggested because of his age and tumor size we get second pathology done. Is it possible for you to do that since there is no down side? most hospitals see very few cases of TC, another center who sees more should confirm.
As Fish mentioned surveillance is gaining more acceptance in pure seminoma. we were told if that is the option then the first year involves CT scan/pet every 2 months and every 4 in the second year. Also regular markers. Please discuss these options with your Doctor. This forum is a great resource and very supportive. Good Luck

[Karen]

Is the BHCG before the I/O or after? If after, how many days after and what was it pre-I/O?

[fuse929]

the first year involves CT scan/pet every 2 months and every 4 in the second year

I would get that checked out.....I was a 1A seminoma and initially I thought I was to have CT scans every 2 months for the first year as well, but actually it was a CT scan two months after my I/O, and then every four months after that. Six CT scans in one year is a significant amount of radiation that can be avoided.

[veryworriedmom]

fuse, your correct it did sound like a lot in one year but he had the first CT scan on Sept.6th and oncologist ordered another PET/Ct for this friday. Im fairly sure he said every 2 months for the first 2 years but we see him again next week and I will ask him to go over the surveillance protocols if that is opted over radiation.Maybe the tumor size had something to do with it? VWM

[fuse929]

VWM,

If you haven't already, I would suggest that you take a look at this document (specifically pages 2-4). It gives the general trends associated with TC and surveillance, radiation, chemo, etc. Possibly print out the seminoma pages and take it with you when you sit down with your doctor next, if only just to see what he has to say......it recommends CT every 3-4 months at most for stage 1 seminoma. As you said before, though, the size of the tumor may be the reason he wants to be extra vigilant with the CTs.

http://www.nccn.org/professionals/p.../testicular.pdf

[MDdad]

Hello All,

Been a while since I posted. Things are looking great so far. I was off on my tumor markers in my original post. They were not as high as I had posted, they were "spot on" as my English friend says! I read and translated the results wrong, I posted the accepted high end on both numbers.

Also, my CT scan showed no signs of the cancer spreading (just got the results this past Tuesday ---- major relief)!

I discussed 3 options with my oncologist:

1. Surveillance (with a rigid check up schedule with CT's) She said there was a 20% chance of cancer ever reoccurring with this method.

2. Radiation for 3 weeks (M-F) -- a 5% chance of cancer reoccurring.

3. A one time mega dose of chemo that she said was equivalent to 3 weeks of radiation. A relatively new method that has proven effective, but she felt that there was not enough history for her to give me her total backing on this treatment.

After talking with several folks who have sought radiation and surveillance and after some careful thought and reflection of the advice given by the members of this board, I decided that radiation is the best option for me. I start it the second week of October.

I hear the side effects vary with each person. Any thing major I should look out for?


veryworriedmom: My oncologist is located at the Lombardi Comprehensive Cancer Center at Georgetown. If you'd like her name feel free to send me a PM.

[Sans rt1]

I assume you are having the para-aortic only radiation, or will it be the "dogleg"? Both are still done, but most go for the para-aortic only, which does not treat the pelvic nodes on the side of your I/O. The overall radiation is less and the possible bowel problems are reduced - plus the radiation oncologist can design a radiation pattern that does not cover the prostate and bladder (this allows radiation to be an option for you in the future, if heaven forbid, you ever need it in those areas). The other main difference is that your follow-up protocol for para-aortic will include a yearly pelvic CT for the first few years, whereas it would not for the dogleg pattern.

Hopefully you will be one of the many that breeze through RT with little side effects. Fatigue and nausea seem to be the most common effects - and I had both. For the entire duration of the RT and for a couple of weeks afterwards, I was just dragging and tired easily. My nausea was really only queasiness, and I never took any meds - but others have and swear by them. Remember to eat well and drink lots of fluids. Your body is stressed during RT, and you need to allow it to heal. You may have some food aversions during your treatment, but after it is over those will go away.

Even if you are tired during your RT, make it a point to do some light exercise - including mild stretching of the abs and back in the RT pattern - to keep the muscles moving. I developed back issues afterwards, that most do not experience, but a few others have also reported. They most likely result from nerve damage (that hopefully will regenerate over time) and the rare (because of the low dosage of radiation) development of scar tissue/adhesions. I really think if I had made it a point to do more exercise and stretching during and in the weeks following my RT, I may have minimized this effect.

Good luck to you.

[MDdad]

Sans rt1:

I'm taking it the "dogleg" is what my oncologist refferred to as the "hockey stick"? If they are one in the same that is what I am scheduled for.

Now I am wondering about para-aortic radiation. This was not discussed with me. I guess I should read up on it and call my doctor about it. I was also informed that I would have 2 yearly pelvic CT's after the "hockey stick" radiation was over. Does this seem normal?

I'm a bit confused, are you saying that if I have the dogleg/hockey stick radiation, does this mean I cannot have radiation if needed in the future for bladder or prostrate problems?

Thanks for the info on the side effects. I think I can handle it fine. And hey, some food aversions wouldn't do me any harm for a while

[Sans rt1]

I did not mean to cause you any confusion. I assume that since you have a date for your RT to begin, you have consulted with the radiation oncologist, in addition to the medical oncologist. The radiation oncologist should be able to better explain the pros and cons of each radiation pattern. Neither ever offered me the hocky-stick pattern - they told me that studies had shown overall recurrence rate with the PA pattern was only slightly higher than the hockey-stick. It was the radiation oncologist that told me that one of the benefits of the PA pattern was that he could design the pattern to catch the lymph nodes where most recurrences would occur, minimize radiation exposure, and avoid the other major organs - which seemed a selling point to me. And I did ask specifically about future radiation treatment options, and the radiation oncologist assured me that the pattern I had would allow for future radiation treatment to the prostate if ever that was needed.

But, many rad oncs still do the hocky-stick pattern - which I think is a more conservative treatment pattern as it treats all of the lymph nodes in the drainage pattern from your TC side. But, it would probably be worth asking your oncologist or radiation oncologist about it, just to make sure you understand all of the pros and cons of each pattern. I guess the good news is that both have a proven success rate.

As far as the follow-up CT's go, it sounds like your oncologist plans to be conservative. My oncologist recommended an annual pelvic CT for 3 years after the PA pattern. From what I read from the NCCN guidelines, that with the hockey stick pattern they do not automatically recommend CT's as part of the followup protocol

http://www.nccn.org/professionals/physician_gls/PDF/testicular.pdf

All that said, I go in for my annual CT this Friday, and my oncologist wrote the lab orders for an abdominal and pelvic CT - with a note that he wanted to do a conservative scan to ease my concerns that my back issues could be masking symptoms.

[tlh]

MDdad,

I was in the same boat (Stage 1 Seminoma) and I opted for the RT. It was three weeks--5days a week. Like Sans, I didn't need to take anything for the queasiness. For me it just wasn't really that bad. I did however get tired during and a for a few weeks after. It took awhile for the stamina to come back. I got the "hockey stick" field like they discussed with you. I guess it's just a matter of preference for the rad onc. My follow up schedule pretty much follows the Princess Margaret Hospital protocol at this link:

http://tcrc.acor.org/whatnow.html

Princess Margaret Hospital Protocol

* Years 1-3: Tumor Markers done every 4 months (for the first 2 years only)
Chest X-ray done every 8 months
Physical exam done every 4 months
* Years 4-7: No Tumor Markers required
Chest X-ray done once a year
Physical exam done every 6 months
* Years 8-10: No Tumor Markers required
Chest X-ray done once a year
Physical exam done once a year

I get the blood work and the chest x-rays, but so far the docs don't seem to think the ct scans are worth additional radiation exposure. It doesn't appear that there is any one set in stone protocol. A lot of it is up to you and your doc. I'm of the opinion the less radiation I'm exposed to now the better.

Good luck with the RT. I'm sure you'll do just fine. Keep us posted and let us know if you need anything.

TLH