Advice on Radiation Treatment???

[firemedic85]

Just bcame a new member and this is my first post. I will start with a little history of myself Im 41 and just had a left I/O last Wed the 10th of October at the USC Norris cancer hospital in Calif. Just recieved a call from my doctor yesterday with the pathology results he says it was cancer a pure seminoma with no signs of spread epididamis looks clean he states its a stage one. Anyhow prior to surgery I had blood work done and my AFP markers were normal 2.0 HCG negative and my LD was elevated at 292 also had a CT scan done as well which also checks out negative. My Dr recommends Radiation treatment of 3 weeks over survalince I neeed some advice to make a decision what are some of the side affects? also the Dr says it will be a very low dose. Also what would cause my LD to be elevated? one more question the Dr said he could get me the radiation treatment closer to home as I live about 2 hrs from USC the drive is not a factor how crucial is radiation if performed at anothe facility at this point I want the best treatment I can recieve? thanks to all your advice in advance I have been reading alot of posts here since last week and its been a long 2 weeks anyhow I wish the best of luck to all of us.

Art

[veryworriedmom]

Hi Art, my son was diagnosed with seminoma stage 1 end of august. the doctor reccomendeed radiation as that has been the standard of treatment for many years. In the last few years surveillance has become an alternative. We did alot of research and have read that sometimes there are incidences of secondary cancers many years later in the areas that were radiated. However, many years ago the radiation was a much higher dose and even the areas radiated were different. If you read the nccn cancer guidelines ,surveillance is now a recognized protocol for seminoma stage one. Some of the reasons to do radiation would be the size of the tumor> 4CM? if there was any spread, age of the patient. We looked at hundreds of studies and my son figured that the chance of reoocurance was probably similar to secondary cancer years down the road. The good possibility that it was cured with the surgery was the deciding factor. Surveillance protocols can be very time consuming so you have to be a good candidate and available for many appointments the first few years. He has a physical every month, markers every 2 months for the first year. Pet/Ct scans every 4 months and regular ultrasoundsThe first 2 years are intense, then the next 3years every 6 months. I think after 5 years its anually. The moderator on this site FED is closer in age to you and he is same diagnosis so I think he will be able to give you some good info as to why he did not choose radiation. I have quite a few articles on the surveillance/radiation subject I would be happy to send you. Good Luck Marion

[dadmo]

Art:
If you're going to get radiation have it close to home. The treatement facility is as important as the treatment protocol. If you trust you doctor go with the place he recommends. The choice for surveillance vs. radiation is a tough one for stage I cases. My choice would be to go into close surveillance (as long as those marker numbers come down) and save the big stuff for the future if it's needed.

[Karen]

Welcome. what size was the tumor and was there any lymphovascular invasion or rete testes invasion? With the LDH elevated I would suspect the tumor was sizeable. Please post more of the path and we can weigh in better. My husband did RT, so if you chose that road I can share some tips.

[MRMRSU]

Hi Art: Glad you found the site. I'm sorry to have to welcome you to the club, but take comfort knowing you will be in good company. USC Norris, great cancer center of excellence but not fun to get to regardless of the arteries of networking freeways. Have you been in to see Dr. Quinn??? Can't say enough good things about him...he's so good at responding to emails. We're in Orange County, about a 45-minute drive on a good day but that drive time usually doubles during the week. I have to tell you, Andy and I always said during the course of our plight that if he had to go through chemo, we would be under Dr. Quinn's care - regardless if it meant having to get a hotel room or an apartment up in Los Angeles. We never had to cross that difficult bridge, and hope never to. But if you find an oncologist closer to home that you trust, you always have the option of having that oncologist consult with USC regarding your treatments.

Can't offer you too much info on radiation therapy but there are plenty of others who will jump on this for you, so ask away. Best wishes on your upcoming decision.

[Karen]

firemedic,
In response to your PM, here are some RT tips based upon my husband's experience:

Because the effects of RT hit you about 2 hours after the zap, he scheduled his treatments for the end of the day. We went to work every day during treatment, left early, and I believe he had his zaps at 4:30 ish and then came directly home (20 min drive).

The first day at exactly 2 hours after treatment he started feeling really nauseous and just laid on the sofa until the feeling lessened (at about 10pm) then ate a light dinner. He had been given an Rx for compazine but didn't take it.

Day 2 he threw up in the evening and then took a compazine. I called the RT nurse and she said he needs to take the compazine 30 minutes before the zap, and then he can take another one 4 hrs after the first. He aslo chugged a well chilled, vintage 2005, Pepto Bismol when he needed a little more soothing.

For days 3-15 he did this and, although he said he had a "seasick" feeling all the time, he never hurled again and was enen able to sit at the dinner table and pick at some food. After his last zap we went out to dinner for Thai and champagne and he was fine, even with the spicy food.

It took about another week for his stomach to feel normal. He had no RT burns on the skin but avoided soap on his tummy just in case.

Although a lot of guys are VERY tired, he never was. Some guys need more than compazine for the tummy. It is very important that you report any discomfort to the nurse or doc and they can prescribe other meds for nausea. He had the para-aortic field so he had no bowel trobles that some get with the "dog leg" or "hockey stick" field.

Now for the reason to go with RT...he wanted to be aggressive, deal with any chance of metastesis NOW rather than be in the 20% recurrance, and he had no tolerance for the more frequent surveillance schedule and related anxiety waiting for results. We still have this now, but he goes every 3 months for markers and gets a CT every 6 months. He just wanted this over and done with. He did research the pros and cons on RT, but felt the risk of a secondary malignancy from RT was very small....whichit is...and the CTs he has would pick anything up very early.

This really is a personal choice, and one you need to weigh for yourself. Pros and cons for both RT and surveillance. Hope this helped. If you chose RT, which you say you're leaning towards, the three weeks really will be behind you quickly. Cross off the dates and plan a celebration for when you're done. With either RT or surveillance you'll be OK.

Please get ahold of the path report and post it. The size of the tumor and invasion may sway your decision.

[firemedic85]

Thanks to all

Id like to thank you all for the advice. Karen I had a very unusual ultrasound and tumor. My ultrasound was one that the DR's had never seen before initially had 4 radioligist veiw it and the chief of radiology view it at USC 2 thought it may be an infection and the other 2 felt cancer so my DR opted for a biopsy during the I/O if it was an infection he would replace the testicle if he felt it was salvageable. It turns ot it was cancer and I had 4 -5 marble shaped tumors something he has never seen that is what scares me and leans me towards the RT.

[dadmo]

I'm big on surveillance but if you have anything unusual about you case RT might be the best course of action.

[Karen]

Not to take anything away from the USC group, but if it's that unusual you may want to get a second opinion...which can be done by you or your docs. and does not necessitate a trip anywhere. Dr. Einhorn at Indiana seems to take the prize for responsiveness via e-mail.

The elevated LDH is an indication of tumor load. All all markers now normal? If you go for RT definatley get it close to home....2 hrs would be a nasty drive after a zap. Your docs should be able to advise of a facility and refer you to a radiation oncologist.

I'm a proponent of hit it fast and hit it hard. My reasoning is you're 41. Secondary malignancies, IF they occur, are most likely decades away. I hope and pray that 10 years from now the detection methond and treatment modalities will have come along enough to search and destroy anything that may crop up.

And not to throw a monkey wrench into the works. But single agent chemo (carboplatin) ias still disputed, albeit not so hotly, for early stage seminoma. Not far enough along yet for long term efficiacy and side effects, but prelimanary data looks promising.

[firemedic85]

Secondary Malignancies

Just wanted to let you all know Im about 95% sure that I will go with the RT. Karen you had mentioned that there was a chance later on this could result in a new cancer case to the radiated area what approximate % chance? thanks check your PM

[dadmo]

Paul:
The older you are the less meaning that 0.7% has. Once you get into your 60 you have a higher likelyhood of reaching your expiration date from other age related issues.

[Karen]

Art,
Did I miss one of your PMs?



Paul,
They may drive worse in RI, but nobody can flip the bird faster than a Jersey girl!

[Scott]

You've got some of the greatest stories, Chris!

[Wrighty]

Advice on Radiation Treatment???

Advice on Radiation Treatment???

This is my first post on the forum and I have some experience of radio therapy.

I am 62 years old and I had TC. It was diagnosed 28 years ago. I had an op. followed by radio therapy, no chemo.

I was under surveillance for 9 years then discharged with no more follow-up.

Seven years ago I notice some Peripheral Neuropathy like symptoms on my feet. This slowly progressed to foot drop, eversion inversion problems and gait and balance problems.

To cut a long story short it has taken numerous tests and 6 years to discover that the problem is probably due to the radio therapy I received many years ago. It would appear that the radiation can cause nodules on the cauda equina. There is little research on this however below is a link to a paper that may give some answers.

I would not dream of offering any advice on whether to go forward with radiation therapy as treatment protocols have changed since my day and I think not many people would be overly concerned with 20 /25 years down the line but the late effects of treatment may affect mobility in a progressive manner in some people later on in life.

Wrighty

Post-irradiation polyradiculopathy mimics leptomeningeal tumor on MRI
Amie W. Hsia, Jonathan S. Katz, Steven L. Hancock and Kendra Peterson
Neurology 2003;60;1694-1696

Article Abstract
Three patients with a remote history of Hodgkin’s disease treated with total or subtotal lymphoid radiation 17 to 24 years earlier developed lumbosacral polyradiculopathy associated with nodular meningeal enhancement of the conus medullaris and cauda equina on MRI. None had evidence of recurrent Hodgkin’s disease or second malignancy, and the MRI findings may be sequelae of radiation therapy.

Introduction
A pure motor flaccid paraparesis is an uncommon late complication of radiation therapy when the radiation field includes the lower spinal cord and cauda equina. This has been reported as a sequelae of testicular cancer,1-4 vertebral metastases,5 and lymphoma.6 Approximately 40 cases are described to date, typically associated with radiation doses between 4,000 and 6,000 cGy. The mean latency to symptom onset is 6 years, with a range of 4 months to 25 years.1,2 Weakness progresses for 1 to 2 years and then stabilizes.1 The presentation may be difficult to distinguish from ALS and recurrent or second malignancy.
In this setting, enhancement of the cauda equina on MRI is an infrequent radiographic finding that can help distinguish the post-irradiation syndrome from ALS.2 We present three patients, all with a remote history of radiotherapy for Hodgkin’s disease, who developed lumbosacral polyradiculopathy associated with nodular meningeal enhancement of the conus medullaris and cauda equina.

[Scott]

I am 62 years old and I had TC. It was diagnosed 28 years ago.

Welcome to the forums, Wrighty, and CONGRATULATIONS on 28 years of survivorship!!