Radiation Yes or No?

chrissymae39

Hi all, Yesterday, I had my two week check-up after surgery (radical vulvectomy with lymp node removal) to see how things are healing and discuss results of lymph node biopsies. Things are healing well but results and recommendation of further treatment were unexpected and a little unsettling. Doctor said she got clear margins around tumor, lymph nodes from right side were all clear, she removed 11 lymph nodes from the left side and one was positive for cancer BUT she doesn't feel radiation is going to be needed at this time. This was confusing to me because I thought if cancer was found in nodes then next step is radiation.....but she said because she got a large sample and it was contained within only one node she felt radiation wasn't needed. Anyone else have this experience? What do you all think about this?

 

shamayim

I would research it

What do the NCCN guidelines say is protocol?  Then read any studies or trials on the subject you can find to answer your question.  The problem is rare cancer information is hard to come by.....  Radiation is very destructive on delicate tissues so if it isnt necessary I would not do it.   I had anal cancer which is also rare, but not as rare as yours , so you may have to take the lead on this one.  Sorry I cant be of more help....but it sounds like you are being your own advocate.  Dont be afraid to ask her details and what exactly she is basing her decision on.... Sometimes Doctors expect you to take their word for it, but I prefer a reason, statistics, previous cases, and outcomes and their philosophy about treatment.   Often times that is enough because they know more than I ever will on the subject, but I like to also independently come around to the same conclusion as they do so I am good with the decisions.  

NoTimeForCancer

I am glad shamayim answered. 

I am glad shamayim answered.  I am a visitor from the uterine board and just wanted to add get a second opinion, or third if you have to.  Also, I don't want to assume you are working with a gynecologic oncologist, and you might be, but I always like to ask.  Be sure you are happy with what is being done - or not in this case.

chrissymae39

shamayim said:

I would research it

What do the NCCN guidelines say is protocol?  Then read any studies or trials on the subject you can find to answer your question.  The problem is rare cancer information is hard to come by.....  Radiation is very destructive on delicate tissues so if it isnt necessary I would not do it.   I had anal cancer which is also rare, but not as rare as yours , so you may have to take the lead on this one.  Sorry I cant be of more help....but it sounds like you are being your own advocate.  Dont be afraid to ask her details and what exactly she is basing her decision on.... Sometimes Doctors expect you to take their word for it, but I prefer a reason, statistics, previous cases, and outcomes and their philosophy about treatment.   Often times that is enough because they know more than I ever will on the subject, but I like to also independently come around to the same conclusion as they do so I am good with the decisions.  

I read the article

I read the article summarizing the research done that the doctor referenced when telling me her recommended course of action.  The study says if two or more lymph nodes are involved then radiation therapy has a positive effect on the outcome.  However, there is no evidence that with one or none nodes involved that radiation improves the outcome.  At my most recent follow up I asked since we didn't take out all of my lymph nodes wasn't it possibel there was still one in there that might be cancerous in which case then we have two or more involved and I should do radiation.  She said that becasue of which lymph node that tested positive she wasn't concerend enough to do any further testing.  She said there are two layers of lymph nodes a first layer and a deeper second layer.  The one that tested positive was in the outer layer.  She said also the lympahtic system in the pelvic region drains linerlay so  if you have lymph node A, B, and C and B is positive then you would expect a or c to be positive and if they were not you wouldn't expect d to be positive......  I guess I was just hoping someone else was faced with the same decision I was faced with and had a postitive outcome to share.  Researching and askign the doctor questions doesn't really settle my mind any or help me with decision making....I am choosing to follow the advice of the doctor at this point in time but still concerned that it might not be the right decision.  The problem is I have no way of seeing into the future to know for sure if it is the right long term decision.....it is the right for now decision.

chrissymae39

NoTimeForCancer said:

I am glad shamayim answered. 

I am glad shamayim answered.  I am a visitor from the uterine board and just wanted to add get a second opinion, or third if you have to.  Also, I don't want to assume you are working with a gynecologic oncologist, and you might be, but I always like to ask.  Be sure you are happy with what is being done - or not in this case.

I am working with a gyn

I am working with a gyn/oncologist.  She works as a part of a team of several gyn/oncologists.  She said she had a team meeting with the other doctros regadring my case and they all agreed that no radiation at this point in time was a viable course of action.  She said that she will monitor me every three months and that things aren't likely to go from treatable to untreatable in a three month period which is why she is again suggesting the wait and watch approach rather than straight to radiation at this point in time.

abrub

Also learn the side effects/repercussions from radiation

You need to balance the value to you versus the negatives.  For me, with a tumor in vaginal tissue which was removed, but some random cancer cells remain, I opted against radiation (brachytherapy.)  The benefit was a total unknown - it could kill the cancer cells, but might not, but in my case, the way that they'd have to do the radiation would probably ruin my vagina for its "fun" aspects.  It might also cause permanent bowel problems because the area in question is so close to my colon.  I opted out.  I'm living for quality of life, not quantity.

These are very personal decisions, but they don't always give you all the answers.  The dr with the brachytherapy glossed over the negatives, as if they weren't important (while acknowledging that this therapy hadn't been used for my particular cancer type before.)  The value wasn't there for me.

chrissymae39

abrub said:

Also learn the side effects/repercussions from radiation

You need to balance the value to you versus the negatives.  For me, with a tumor in vaginal tissue which was removed, but some random cancer cells remain, I opted against radiation (brachytherapy.)  The benefit was a total unknown - it could kill the cancer cells, but might not, but in my case, the way that they'd have to do the radiation would probably ruin my vagina for its "fun" aspects.  It might also cause permanent bowel problems because the area in question is so close to my colon.  I opted out.  I'm living for quality of life, not quantity.

These are very personal decisions, but they don't always give you all the answers.  The dr with the brachytherapy glossed over the negatives, as if they weren't important (while acknowledging that this therapy hadn't been used for my particular cancer type before.)  The value wasn't there for me.

Abrub I have a spinal cord

Abrub I have a spinal cord injury due to a car accident when I was 18.  So, the negative aspects of radiation that effect the vagina and bowels aren't as much of a deternat as they would be for someone who has normal sensation and function.  I have been dealing with a no fun vagina and bowel issues for 22 years.  :-(   Maybe that is why I feel uneasy about opting out of radiation because I have less to lose and possibly more to gain.  There is still the unpleasantness of going through radiation, the possibility of developing lymphodema, and radiation brings on the possibiilty of higher risk for other cancers.  I guess I am just hanging onto my normal as long as I can and hoping for the best.  Still, I worry that I will regret it later.