Follow-up protocol

[tlh]

Can anyone shed any light on the more favorable or preferred follow up protocol for Stage 1 seminoma treated with adjuvant RT? The following are the protocols listed in the TCRC:

Clinical Stage I Seminoma - Treated with Adjuvant Radiation

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


OHSU protocol
Year 1: Tumor Markers and Chest X-ray done every 2 months
Year 2: Tumor Markers and Chest X-ray done every 4 months
Years 3-5: Tumor Markers and Chest X-ray done every 6 months
After Year 5: Tumor Markers and Chest X-ray done once a year

However, the NCCN protocol is somewhat similar, but it calls for annual CT scans. The Radiation Therapy I underwent included the "dogleg" field. The reason I ask is I get markers and chest x-rays and a physical exam (by urologist and also exam by primary care phys and radiation oncologist) every 4 months which seems to be a combination of the two listed on the TCRC. I would rather not have the CTs unless someone thinks it is absolutely necessary. I've already undergone more radiation in my life than what I am comfortable with.

Any thoughts on this? Thanks.

[Sans rt1]

You raise a good question. The NCCN guidelines say only pelvic CT for those that had paraortic only RT, not the dogleg. From what I understand, if you have the dogleg, your pelvic lymph nodes (at least on that side) were treated. I do not remember seeing in any of my reading whether the pelvic lymph nodes on the other side could see mets, but I don't think that is the typical path. So, if you radiated your pelvic lymph nodes, the next place it would usually show up would be covered by your chest X-ray, so pelvic CT is not very valuable.

Definitely discuss it with your doctor, but you are right to try to avoid unnecessary CT's when possible.

[tlh]

Sans,

Thanks for the input. I also didn't find anything to suggest the mets would cross over to the other side. I was also under the impression that the CT was for the pelvic lymph nodes, which, in my case, were zapped.

[tlh]

Follow-up question

Can anyone enlighten me on the spread path/pattern for Seminoma? The reason I ask is it seems that there is more than one person on the forum who is having an unusually difficult time with killing seminoma. I go for blood work and chest x-rays every 4 months. However, my concern is that if seminoma goes to the abdominal lymph nodes first before the lungs, then this obviously isn't going to be caught by a chest x-ray or blood markers for that matter since mine have always been normal.

My reasons for this post are because I am tired of feeling like a hypochondriac. I was diagnosed with Seminoma Stage 1,(tumor 1cm x 1cm) no lymph invasion, tumor confined to testicle. All markers were normal and the post-orch CT scan showed no spread. I opted for the adjuvant RT and was given the "hockey stick/dogleg" RT. I have followed the blood work and chest x-rays every 4 months without fail and everything has been normal. However, ever since radiation I have "sore" areas (skin soreness-very topical, not a deep pain at all) around my belly button and abdomen. Sometimes I think that I am just looking for problems and keep poking and prodding until something hurts. When I mentioned this to my Urologist and Rad Onc they thought this could be surface nerve or muscle injury from the RT. My urologist assured me that if I had enlarged lymph nodes (abdominal) they would be much further back toward my kidneys or spine and wouldn't cause surface soreness like I described. He also told me the fact that I sit hunched over a keyboard for 6-8 hours a day coupled with the fact I have put on 20 pounds in the last year doesn't do my stomach muscles any good either. I am tired of running to the doctor or freaking out every time I get a sniffle or something on my body hurts or aches. I just wanted to find out if I am following the best course of surveillance or if I should be getting scans of my abdomen for topical skin soreness? Like I said in my earlier post, I've already taken more radiation then I ever wanted to. Thanks for listening/reading the rant of a person that freaks out over every pain now and any thoughts on this would be appreciated.

[Sans rt1]

tlh - -

I hear you. I have been there done that. I think it is the normal part of working yourself through being a TC survivor. The good news is that you caught yours early, and received an aggressive treatment, so you are almost certainly cured. It is the 'almost' that gets you. A few percentage chance it will come back is just not good enough.

From what I read (I did a lot of research when I developed lower back about 4 months after finishing RT), and read that there is a pattern to the spread for seminoma - but there are exceptions. I also read that it is highly unlikely to get a recurrence in the lymph nodes that have been treated - but there is that slight chance. Most likely next place would be the lungs - which is why the Xray for followups. There are also those times where it shows up in some other wierd places - that my doctor described to me as all being related to the path your testes took when they moved through your body when you were forming in your mother's womb (I guess they start somewhere up next to where your brain started), I was told the Xray covers a lot of these places. I was also told that the radiation treatment will do all kinds of damage to the tissues in the area - most will heal quickly, but that the nerves can take some time and to expect occasional wierd sensations, that should lessen over time. The most common sign of a recurrence is lower back ache - due to enlarged lymph nodes - I think the followup would be expected to catch anything in the lungs. I also read that those rare recurrences that show up elsewhere in the body are usually not caught until they are fairly advanced - but even then there is good success with treatment.

This probably does not make you feel much better, but what your doctors are telling you is true - the symptoms would typically be in your back, not the area you are feeling it.

As for myself, I developed a wierd pressure feeling and ache in my lower back - almost like someone had put something in my lower pack. Because lower back ache is definitely a symptom of recurrence, I became totally freaked out. My oncologist agreed with my concern and ordered all kinds of scans and tests - but it all checked out clear. To date, none of my doctors will commit to actually saying it is a side-effect from the radiation treatment "because the dosage I had was so low", but they acknowledge it might be might be a rare case of "radiation-incuded fibrosis" or scar tissue and adhesions in my lower back. After bugging the doctors I finally got them to give me some recommendations that might help: take 2 advil 3 times per day for 3 weeks (standard treatment for inflamation), exercise to strenthen my "core", lose some weight (I had also packed on some weight since my diagnosis), and if that did not help perhaps some physical therapy - but in the end I might just have to live with it and accept it as an outcome of my treatment. Over the past 2+ months I have followed the plan - but it has not helped the back much if at all. So, I will be pushing for some physical therapy in the near future. But one thing I can say is that the exercise and getting back into shape has really made me feel much better overall - both physically and mentally, so there is something to be said about that.

Anyway, I would recommend that you listen to your doctors and try to relax about it all. And I know that you will still worry about it coming back, but hopefully you will over time be able to come to terms with it. Also, putting your spare energy into getting back into shape instead of worrying about every ache and pain might help - It has for me .

[tlh]

Sans,

I literally feel your pain about doctors not committing to any rad damage because of the low dosage. I got to experience very mild radiation induced proctitis that comes and goes and may have to live with forever. Anyway, thanks for the response. I'm sure you understand that these replies mean so much more when they come from someone who actually went through this. I will give the workout routine a shot. If nothing else I'll be in better shape. Thanks again.

[tlh]

adhesions

Sans,

Did your doctor ever mention the word "adhesions"? I found some articles that say that adhesions can occur on organs and/or muscles at or near the site of radiation therapy. These adhesions can be painful and restrictive. I only ask because some of the soreness and pain that I was talking about seems to be because my stomach muscles always seem tight. If I stretch my arms straight up and start bending backwards if feels as if my stomach muscles have no flexibility. Also, when my stomach is full (after eating, drinking, etc) my ab muscles feel especially tight and this is when I notice the sore feeling on the surface of my stomach/ab area. I think I will mention this to my doc at my next follow-up. Anyone else know anything on this? Thanks.

[Sans rt1]

tlh - -

Yes, when all this started, my oncologist said clearly "this could well be scar tissue and adhesions" . Although now he has changed his tune and doesn't think so any more - but can't give me any reason for his changing his mind. When I was describing my back discomfort to my GP, he without any hesitation or prompting, stated that it sure sounded like radiation induced fibrosis - which would be scar tissue and adhesions produced by radiation therapy.

The kind of feeling you mention of tightness and no flexibility is really how my back feels. I really have not noticed anything other than minor sensations and feelings in my abs, but yes, there are some - it just feels a little different, which I figure is probably nerve damage that will take some time to regenerate. I did receive a private message from one other member that has had strange feelings and numbness in his back following RT, so there are probably others are out there that have experienced something like this.

You should discuss this with your doctor, and I would be interested to hear what yours has to say. When I did my internet search I did find similar references to scarring of organs - not so much muscles. I did find one massage therapy site that had mention of deep tissue massage for muscle adhesions caused by radiation therapy. I also found sites talking about vitamin e /drug therapies, but that sounded like something that you had to do forever, and there could be side effects.

So, for me I will be talking in the near future with my GP further about my back to see if he will refer me for physical therapy. He had asked me to give the exercise to strengthen my core muscles a chance. I have been doing it and definitely seeing results as far as muscle definition and tone and weight loss, and overall I do feel better, but no improvement at all in my back. He had stated that what I am experienceing did not seem like a strain, and agreed it was a little too coincidental that it is oddly isolated to the exact area of my radiation pattern (plus he has been my GP for over 10 years, so he knows I am not a hypocontriac). So, I will hopefully try some physical therapy to get some relief (heat and ultrasonic treatments, targeted massage and focused exercise). And, it is just a bothersome side-effect - if I end up having to live with it, I can, but don't want to unless I have to.

Let me know what you find out.