New Here-tough decision brachytherapy or full pelvic

MoeKay said:

Need More Information

Cass, it doesn't sound to me like your gyn-onc and rad-onc have provided you with all the information you need in order to be able to make a fully informed treatment decision.  What are the reasons for each recommendation?  For example, I was treated for endometrial adenocarcinoma in 1999.  I had a deeply-invasive grade 2 tumor that had invaded approximately 80% of the myometrium.   The pathologist also found extensive lymph-vascular space invasion by my tumor, and it had also invaded the lower uterine segment.  These were all risk factors for recurrence.  Both my gyn-onc and rad-onc concluded that my treatment plan should include external radiation and brachytherapy.  It's been more than 17 years since I finished treatment and I have had no bone density or fracture issues. 

If I were you, I would ask your doctors to articulate the basis for their position on pelvic radiation as well as brachytherapy.  I might also seek additional opinions to help in making the decision.  I know some women take the position that they will hold off on radiation until they have a recurrence.  In some cases, they may be able to be effectively treated at recurrence, but it's my understanding that is not always the case.  That's why I think it's very important for you get all your questions answered before you decide how to proceed. 

Best of luck to you.

i had hysterectomy on Wednesday. Type1 grade 1 >50% invasion. Recovering quickly from surgery but now scared waiting for report on lymph node involvement. Dr. says 10% chance of metastesis to lymph nodes. the last is the part that's freak get me out.

Kamushka, I'm with CheeseQueen.  I took probiotics (I was taking them prior to all this) and I think it helped with the diarrhea (very little and early on).  I will say I met with a dietician who specialized in helping cancer patients and she showed me a study of 63 women - half who took probiotics and half who did not.  The results were dramatic.  The women (it was women with cervical cancer) who did NOT take probiotics were hospitalized with dehydration and such a high rate as compared to those who WERE taking them and it was pracitcally nill.

Yes, CheeseQueen is right, the dialators can be a pain, and you get that when you have the brachytherapy, but you have to do it.  I did it (based on another woman who used to be on the boards) every day for 10 minutes.   Here I am five years out and I don't think I need it as I once did but I still have some 'pink' on the dilator.  I spoke to the onc about this and she saw a slight burn (she has seen worse!) and I told her I have to remember this is a radiation burn, not like a regular burn you might have from your stove.  

I agree with CheeseQueen, this was the decision I made for me.  Everyone has to decide what is best for them.  

NoTimeForCancer said:

I love the women here!

I love the women here!  Always helping, sharing...if you have to go through this all - it is great knowing there is such a support group.

Grade 3, Stage 1A UPSC.  I had sandwiched between 3 and 3 chemos radiation.  The radiation consisted of 25 external and 3 brachy.  

I was diagnosed differently with same path slides!!  South Florida area- paths said it was Grade 3 Stage 1A UPSC- and a cancer center mid-state where I got my valued second opinions stated it was Grade 3 Stage 2 due to cervical stroma involvement.  The Paths down here said there was no cervical involvement!!!!  I was recommended sandwich therapy 3 chemos then brachyherapy then 3 chemos but the doc at the cancer center I would lose continuity of the chemo that way - so I am doing 6 straight rounds first.  Had the first August 2.  7 hour infusion. Carboplatin-taxol.

I had full pelvic radiation after my surgery and chemo was finished.  From the moment it began I was miserable with stomach and bowel complications.  I have suffered as a result ever since.  Right now there are days when I can hardly stand the pain, and my oncologist says he has seen this many times.  He said he doesn't give anyone full pelvic, only brachy.  I remember that my gyn/onc surgeon also told me before everything that she didn't want to do it because of the side effects and that it is "statistically not proven effective in treatment".  Having seen those studies, I believe she was right.  Sadly, she allowed her team to talk her into doing it, and we proceeded with it.  Just yesterday I was looking at her team for another reason, and I noticed that the radiologist has now become the Brachy therapist!  This leads me to think they are also sliding away from the pelvic radiation.  These drs are in two different hospitals in different cities, and yet the conclusions are similar.  

My experience can be replicated all over the internet, with many people suffering from the permanent damage caused by this.  I would NEVER undergo radiatiion again, and if I could go back, I would have done more research.  As it stands, my cancer came back, or never went away, making this one of the biggest mistakes I have ever made.  The pain, should it befall you, is unbearable.  

My Onc writes a blog for MGH and the article "When Cure isn't Supposed to Look like This"  is a drs take on treatment gone bad:  http://theoncologist.alphamedpress.org/site/blog/   Just my humble opinion as well.

Hi Kathy-

I am experiencing the same thing- scar tissue as a result of the radiation (I had both FP and Brachy). The pain is a cramp-like spasm deep inside the intestine.  No touch can relieve it or reach it, and nothing that normally relieves intestinal discomfort touches it.  Not heat, cold, antacids, etc.  Tylenol and Aleve are the best remedies - how weird is that?  I saw somewhere that there is a massage group that guarantees to make it go away... but they will only work on you if you are cancer-free,  so that's out.

I am noticing that more and more drs are paying better attention to long term damage.  I asked about this, and both the Gastro and the Onc told me that there was very little that can be done about the pain.  Like you, I am experimenting with different treatments, but so far, it is a balancing act.  I want it GONE!!!!!  Just sayin'

I've had a pain in my right lower pelvic area that just keeps getting worse. It's worse when I stand for long periods. My doctor says it's scarring too. I'm getting pelvic floor PT but so far it hasn't helped this. Tylenol somewhat controls it by i dont want to take too much of it and screw up my liver and I can't take anti-inflammatories because of the Eliquis. I'll be interested in what others find helpful. 

My pain was gradual, also.  It began during radiation, eased up, then intensified, then went away, later, it returned and intensified again.  i am just getting to understand a little more about it, but not to controlling it.  Sometimes Aleve will kill it for two whole days, though, during which I am in heaven    Courage, my friends until someone can be found to help us