RPLND or Surveillance?

[Don]

I would agree with surveillance also- No reason to have surgery or chemo unless absolutely needed!!!!

[Don]

DONT BE AFRAID TO GET A SECOND, THIRD, or FOURTH OPINION

Amen!!!!! It saved my life as well..........

[Aras06]

Can someone post links for me regarding harmful effects of having multiple CT scans?

[Don]

Theres really not any long term effects from ct-scans... Most of us here have had many scans with no side effects .. If anything the Contrast is the worst part which tend to give you a stomach ache and some pretty bad gas !!!!!!! I wouldn't worry to much!!!!!

[Aras06]

I'm asking because my doctor said you can get blood cancer or leukemia down the road, say 15 years, from excessive radiation exposure. And I heard each CT scan is equivalent to almost 1000 chest x-rays, so it got me worried since I'm doing surveillance.

[Karen]

I assume your surgeon and rad oncologist are from the same hospital/group? You really may want to check the specialists....my sixth sense is telling me there's a lack of experience with your current team...but hey, I'm just guessing.

You need to weigh the risks of X-ray/CAT surveillance vs. not catching a recurrence in a timely manner. Check out this post in the "research library"

http://www.hps.org/publicinformation/ate/cat5.html

[Kman99]

Aras06,

I can't provide links regarding harmful effects from multiple CT exams, but my docs have not once made the claims your docs are. It almost seems like your doc is trying to scare you out of surveillance and into surgery so he/she gets more experience with either the RPLND or L-RPLND. So, I agree with the others and suggest you try and access a TC expert as surveillance, in your situation, is definitely a viable alternative to chemo and/or surgery. As Don said, the CT contrast does do interesting things to your stomach....think of the movie Dumb and Dumber when laxative is used in a cruel, yet funny manner.

Good luck in your decision and continue to ask questions here and with your docs!

[MRM]

All radiation increases your risk of a radiation-induced cancer down the road a little bit. CTs deliver quite a bit of radiation, but they also do a lot of good if medically required. Here's some of what the U.S. Food and Drug Administration says about cancer risks from CTs:

The probability for absorbed x rays to induce cancer is thought to be very small for radiation doses of the magnitude that are associated with CT procedures. Such estimates of the cancer risk from x-ray exposure have a broad range of statistical uncertainty and there is some scientific controversy regarding the effects from very low doses...

A CT examination with an effective dose of 10 millisieverts (abbreviated mSv; 1 mSv = 1 mGy in the case of x rays.) may be associated with an increase in the possibility of fatal cancer of approximately 1 chance in 2000. This increase in the possibility of a fatal cancer from radiation can be compared to the natural incidence of fatal cancer in the U.S. population, about 1 chance in 5. In other words, for any one person the risk of radiation-induced cancer is much smaller than the natural risk of cancer. Nevertheless, this small increase in radiation-associated cancer risk for an individual can become a public health concern if large numbers of the population undergo increased numbers of CT screening procedures of uncertain benefit.


Here's the link for the rest, including estimates on total radiation exposure:

http://www.fda.gov/cdrh/ct/risks.html

[Aras06]

Just got the results from my 3rd CT scan... no enlarged lymph nodes! This is the same place where I got my 1st CT. And the radiologist here also now acknowledges that what appeared on the 1st CT is really a vein. So now everyone is in agreement. I'm so glad I got my 2nd opinion a few months back. If I didn't, I would have been on a totally different track, i.e. having RPLND done. Thanks everyone.

[Scott]

That's such great news! Congratulations!!

[tc accountant]

similar situation

I also have a .6cm enlargement in the lymph node where my right testicle drains. Yesterday my doctor told me I could either have the RPLND or surveillance he seemed to be leaning towards the surgery. I am really confident in my doctor as he performs about 100 of these a year, he said.

More surgery gets me nervous though and I was pretty set on surveillance until he started talking about long term effects of chemo if the cancer did or does spread to the lymph nodes. I was wondering what those long term effects are since I'm having trouble finding information about it on the internet. I'm 23 so this is a big issue for me and is making me lean towards the RPLND. I had a non-seminoma with 80% teratoma.

[dadmo]

Who is your doctor? With 100 RPLND's per year you must be at Sloan or IU. With 80% teratoma the odds are in your favor that the RPLND will only find teratoma and no live cancer. That's great since teratome does need to be removed. If they do find active cancer in the nodes it will take two rounds of chemo to cure you. We can get into the list of chemo side effects later but your primary concern is to get any active cancer out of your system as soon as possible. Can you share any of you lab information? You know, blood work info and staging.

[tc accountant]

I go to sloane my doctor is Dr. Scheinfeld. I have a stage 1. My AFP levels have normalized since my orchiectomy. I tried to get my lab results faxed to me today but it didn't work out (somethings wrong with my fax). I probably have to wait until Monday now. But I thought that if I had an RPLND then I wouldn't need chemo.

[dadmo]

Did Sheinfeld tell you you were stage I? If he did then he must be very confident that it's teratoma in the lymph nodes and not cancer. Traditional staging would put you in Stage II because the disease has spread beyond the testicle, which is what the enlarged lymph nodes indicate. In any event stage II is still very curable and Sheindfeld and crew are master at the art of curing tc. Nomatter what's in the lymph nodes they will need to be removed because that's the only way to remove teratoma and if that isn't removed it can give you real problems down the road. If it were cancer it would react to the chemo and you might be able to avoid the RPLND. Anyway to answer your question about chemo, if upon examination of the lymph nodes cancer is detected the standard is to give two rounds of chemo. Do you remember what the other 20% was made of.

[tc accountant]

Well he said its a grey area, because the enlargement is less than 1 cm. And there could have been an enlargement before. I don't want to get unneccesary surgery here and he said sometimes they find its benign (I think he said about 30% of the time). The pathology report says the tumor is 80% mature teratoma, and also made up of embryonal carcinoma and occasional syncytiotrophoblasts are present.