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New Here-tough decision brachytherapy or full pelvic

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

I was diagnosed with Grade 2 endometrial cancer and had a complete hysterectomy in Dec. After the surgery they staged it as IIIC1. I had 1 lymph node out of 8 positive (they removed the one during surgery) they said the tumor invades to the connective tissue of the cervix but does not extend beyond uterus. I have had 2 cycles of carboplatin/Paclitaxel and have 4 to go. My oncology gynecologist had planned vaginal cuff brachytheraphy 3-5 treatments. When I met with the radiologist, he wanted to plan on 20 treatments of the full pelvic area. Since they do not agree on it, they are leaving it up to me. My first instinct is to do the brachytheraphy due to the less toxicity and side affects. Has anyone else had to make this decision? I only know of 1 other person in my local area that has the same cancer, and she had both done because her doctors said she needed both. Any input would be appreciated.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

to the club no one wants to belong to.  It is a good place to come for advice, support and information.  You have a hard d ciion to make.  I had 28 external and two brachytherapy treatments.  That is what my gyro-oncologist and my radiologist recommended.  At the time I went with that because that is what they said I should do to treat this rollercoaster ride I found my self on.  Now I know a lot more and I still would have gone the same route.  I,would have and still will do what ever my doctors recommen, first because I have the utmost confidence in them and second I want to give myself the best chance,that I can.  I did not find either treatment hard.  The external did give me diahrea, but that was controlled with making Imodium my new best friend.  I also had some fatigue, but I worked full time teaching,first and second graders and did not have to take any time off.  The brachytherapy may have been a little embareasing, but the easiest part of this whole thing.  No side effects at all for me.  I do have some things going on that I think are long term side effects from the external radiatio.  The large bones in your pelvis is where a lot of your blood is made, and I had a lot of trouble with blood counts after radiation.  I also ended up with a stress fracture and insufficiency  fractures in my pelvis.  Now I have problems with my SI joint.  May not be, but I am blaming the radiation.  Knowing this now, I would still do the radiation.  I can live with those for a long time, Cancer maybe not so much.

Hugs and prayers, Lou Ann

 

 

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

Thank you for your input! It is a hard decision. The long term affects are my main concern.

janaes
Posts: 800
Joined: May 2016

Im so sorry you have to make such a hard desision.  Cancer desions are really hard.  Take the time you need to figure it out for your self.  I had to decide between bracytherapy and external radiation.  I decided on just bracytherapy  because i already had a diferent cancer over 20 years ago and had alot of radiation close to the same area.  My doctor didnt even want to do external radiation because i already had radiation close to there.  My stage was 2 and it was grade 3.  I was diagnosed with MMMT uterine cancer back in May of last year.  Some others  might have decided external radiation for my cancer but because i had cancer before I think that was my reason behind no external radiation. Good luck in your desision

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

Thank you for your reply. I wish there was some stats or clinical trials to read about, but ours is not a well studied kind it seems.

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

I'm so sorry that this is a hard decision for you. I like Lou Ann had both external and brachytherapy along with the chemotherapy. I am 3C-3, so I too was willing to do anything to help my chances in defeating the cancer. So far so good for me. I do have some bowel problems, but nothing too severe. My treatments ended in June and so far I'm clear. Please keep us posted on you decision and how you are doing. We are all here for you.

Nellasing
Posts: 529
Joined: Oct 2016

These decisions don't seem to get any easier all along the way.  I don't have your exact cancer.  I am Grade 3a Stage 3 Endometrial Adenocarcinoma.  I had 6 rounds carbo/taxol and the gyn/onc wanted me to do brachytherapy as insurance on the cuff but the rad/onc wanted me to do 6 1/2 wks -daily full radiation.  It was very hard to decide and I went back and forth and read a lot on here and in the end decided that I did not want to do either.  Prayers are you consider your options and gather information.  (((HUGS)))

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

You are where I was a little over a year ago, except that my cancer was Grade 3, Stage IIIC2.  I had opinions from my gyn/onc, and two radiologists within my medical group. They didn't agree.  I then went before a panel of two more medical oncologists, two more radiologists, and another gyn/onc, hoping for some sort of consensus.  There was none.  Some things to consider are how likely is your type and stage of cancer to recur locally as opposed to distantly?  If it tends to recur locally, then pelvic radiation might be something to consider.  If it tends to recur distantly, then things aren't so clear cut. Also, if you do have pelvic radiation, they can design to plan to encompass the vaginal cuff so that you don't have to have both pelvic and brachytherapy.  

 In my case, after much research and input, it seemed that in my case, pelvic radiation would prevent local recurrence, but did not affect the overall survival rate.  I decided to do brachytherapy only.  If it recurred in the pelvic area, then I could still have radiation.  Someone else in my situation could well have made a different decision looking at the same information.

My whole decision making process, along with a lot of input from the wonderful ladies on this site, is documented in this thread:

http://csn.cancer.org/node/299071

You'll see different opinions and experiences there, and I think it reflects the wide range of recommendations.  One of the toughest things about this disease is finding out how much responsibility you have for deciding on your own treatment.  In the final analysis, you have to make the decision that feels right for you.

MAbound
Posts: 1123
Joined: Jun 2016

When I was wrestling with the same decision and freaking out about it last summer I learned which criteria mattered the most in tipping the scales either towards pelvic radiation or waiting for a possible recurrence before proceeding. The thread where I got a lot a great help here was titled "Still terrified" around August or September of 2016.

To put what I learned in a nutshell: You would benefit from pelvic radiation if your pathology results show one or more of the following: 50% or greater myometrial invasion, cancer originating in the lower uterine segment rather than higher up in the fundus (i.e. closer to or including the neck of the uterus and/or extending down towards the cervix; lymphovascular involvement; 

The way pelvic radiation is delivered really makes a big difference to how it impacts you. Some have RT prior to surgery or chemo, some have it sandwiched midway during chemo, and some, like me, have it after chemo. My doctor wanted it after chemo because he felt the radiation does some damage to pelvic blood vessels and that would impact delivery of the chemo drugs in the pelvis. There really doesn't seem to be much agreement out there on when it's the best time to have it. More important than the when, I think, is the how. I was offered 3D-CRT (3 dimensional-conformal RT) that shapes the delivery of radiation to avoid organs such as the bladder, urethra, colon, etc. to the extent possible to minimize long term side effects. Drinking a lot and taking a probiotic helps too. Diarrhea and/or constipation are an issue for most during treatment and potentially for a while after, but is generally easily managed.

I also had a "vaginal boost" after the pelvic RT which is basically the same as brachy, just delivered externally instead. You and I are pretty close as far as pathology, so it all depends on whether or not you'd sleep easier having done all you could do vs. taking a chance and waiting for a recurrence to have something to aim the radiation at. It's a tough decision with no guarantees no matter what you decide. 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

And I had both external and internal as my doctors recommended. I had it after chemo. I too like LouAnn had insufficiency fracture of pelvis but doctors claim it was not due to radiation. My bones were not in good shape before this adventure. I've got some bladder issues but these should pass. I would do the radiation again for I feel it gave me best chance for survival. I have 6 month scan tomorrow. Fingers crossed. 

MAbound
Posts: 1123
Joined: Jun 2016

I'll be crossing my fingers, eyes, and toes for you! 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2888
Joined: Mar 2013

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.  

bocabird
Posts: 4
Joined: Jun 2017

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.

MoeKay
Posts: 333
Joined: Feb 2004

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.

MAbound
Posts: 1123
Joined: Jun 2016

Maureen iterates of very good point in the last paragraph. It bears weighinh into the decision that treating recurrence is iffier than curing it the first time around. Cancer cells mutate and what worked before may not be an option for treating a recurrence. That's one of the reasons I decided to do all that I could rather than waiting for something to aim the radiation at. I really didn't want to, but now that it's behind me I have no regrets. 

ssjdant
Posts: 14
Joined: Mar 2017

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.

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

I am so glad I found this group! You all are very helpful and encouraging. I appreciate your input! I have sent my onc/gyn and the onc/rad a list of questions, my gyn has responded but the radiologist hasn't. I am still leaning towards the brachytherapy only, but we will see if the radiologist answers my questions too.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Cass83, I guess the good news is that once you decide on a treatment, you will likely still have the other treatment available to you if you need it in the future. Good luck to you and keep us updated on how you're doing. Kim

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

That's what I am thinking too. I am leaning towards the brachytherapy for now. Then if it comes back in the future, then I could do the external pelvic area.

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

My gyne/onc and my rad/onc didn't agree.  My gyne/onc wanted me to have pelvic radiation and brachytherapy.  My rad/onc said no to the pelvic radiation because of my already very scarred insides.  He indicated that the pelvic radiation would cause more problems than not having it done.  I did have the brachythereapy which 10 years later caused blockage in my left ureter.

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

I had 28 external treatments and 3 brachys. I was not really asked to make a choice because of the aggressive form of cancer I had and high number of positive lymph nodes (25). The external radiation seems to have done its job, since I was cancer-free at the end of treatment. So I'm glad I had the radiation even though that may be the cause of some of the side effects I'm having now, such as low blood and potassium levels. 

Kamushka
Posts: 22
Joined: Feb 2017

I am more worried about the fecal leakage...diarrhea...bladder leakage and damage.....did you have that....if I can ask such a personal question. With my husband's four year battle with rectal cancer and wearing a bag with an eliostomy (much different than a colostomy) the quality of life for him is still not great....but I'm burning more candles and have air fresheners in every room.....so the house smells better! 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

i had 28 external and 3 internal treatments. I took Culturelle probiotic and didn't have any diarrhea but for a few weeks after I took Immodium because of a little bowel urgency, but the Imodium solved the problem and I'm not bothered by it now (my treatment ended in October). I am having some bladder issues (burning, sloughing off of cells leading to more risk of infections) but working on resolving that now. They really don't think my fracture was related to the radiation but could have been related to the steroid use with chemo. You do have to regularly use the  vaginal dilator after radiation treatment which is kind of a hassle.  But all of this is worth it if it saves your life.  I'm still pretty deconditioned but I'm going to start physical therapy next week  

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2888
Joined: Mar 2013

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.  

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

I have decided on the 3 brachytherapy. I have 2 more chemo treatments left and then we will do the brachytheraphy after that. Thanks for the suggestions and comments, they really helped!

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

I did the 3 brachytherapy after the chemo. No side affects, no problems. Follow up a month later showed my CA125 down to 3.6 and my physical exam was normal.

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Grade 2 Stage 3a Endometrial Adenocarcinoma.   I was to get the Taxol/Carbo but had a reaction to Taxol so changed to Gemzar/Carbo.   My gyne/onc wanted pelvic radiation and brachytherapy.  However, my radiologist/oncologist said just brachy because the risks for me having pelvic outweighed any benefit of receiving radiation treatment.  

What that meant is they did not know what the long-term effect of the pelvic radiation.  And because I was already so scarred up, that getting more scarred from the radiation would have been detrimental to me.   Therefore, I only got brachytherapy.   That was in 2006.

I did have side effect from the brachytherapy 8 years later wherein I developed hydrouteronephrosis in my left ureter.   I had to have a stent in and eventually had reimplantment surgery but all is well.  I hope this helps.

Kathy

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

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.

 

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

henhill:

What type of pain are you having.   The last two months I am now in constant pain.  I only had brachytherapy as my radiologist/oncologist indicated that the pelvic radiation risks outweighed any benefits, although my gyne/onc wanted me too.   Now here I am with all this pain and two years ago I had a ureter blockage from the brachythereapy which I had reimplanted into my bladder to that I didn't have to keep getting stent changes every 3 months.   My recent doctor indicated that brachytherapy or radiation therapy causes inflammation.   This inflammation isn't the same as the inflammation you get in joints, etc.   This inflammation consists of clusters of scar tissues which antiinflammatories don't work on.   They are just now finding out what the long term effects are of radiation.

Just for the record, I have just begun acupuncture.   And it has helped.   I haven't had the severe attacks since I began the acupuncture.   I will get my 4th treatment Tuesday.   I figured I would try this first instead of going to the pain clinic.  I still am taking motrin or tylenol daily but only once a day.

P.S.  Besides the scar tissue, I do have several soft tissue masses which are pressing on parts of my pelvic area.

I feel for you as I know how unbearable this can be at times.   

Wishing you a pain-free day.

Kathy

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

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'

Nellasing
Posts: 529
Joined: Oct 2016

Have you or Kathy tried Pelvic Floor Therapy?  They might be able to offer you some relief?  (((HUGS)))

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Thanks for your reply.  Sometimes you can feel so alone because no one understands.   I have pain in my rectum and almost like menstral cramping in my bladder area.  Then when its real bad it is in my left hip and lower back.   I have also now started to get left leg numbness but my recent doctorr indicated that was nothing to worry about.  I am so like you.  I just want it GONE also.   I had one day and it was like "Wow!  no pain and I had energy and felt good.  It only made me realize exactly how much pain I am in almost every day now.    My gyne/onc also gave me a script for a abdominal massage also.   How can a stomach massage get deep inside your body?

I just recently had my gallbladder removed via robotic and they had to make an extra hole because of my scarring.   If I come across anything that helps I will let you know.

Kathy

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

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. 

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

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  Innocent  Courage, my friends until someone can be found to help us

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