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Stage 1A, Grade 3, Should I get EBR ??(External Beam Radiation)

Doris_J
Posts: 6
Joined: Jul 2012

I have Stage 1A, Grade 3 endometrial cancer and must decide on treatment. My doctor told me he wants to do External Beam Radiation then Brachytherapy. I have been reading about External Beam Radiation and it seems very scary with bad side effects! Has anyone else gone this route, EBR and Brachytherapy? I don't know what to do!
Please help!

Catmalogen
Posts: 19
Joined: Jul 2012

Hi Doris, i posted for first time on this site yesterday, and got no replies :(. Read my story title under USPC discussion. I am sure if your doctors have advised external beam radiation its for a reason. I did not have it but had brachytherapy and I am graded USPC plus adenocarinoma of uterus with lymphatic involvment. My stage is IIIC. I had TAH BSO surgery and full pelvic node clearance followed by chemo then brachytherapy and I believe this route taken as I had pelvic nodes cleared. I do not understand why you have to decide on therapy..? they are the experts and should advise you what is best afterall. Good luck with all. Olivia.

nempark
Posts: 596
Joined: Apr 2010

Hi Doris: I was dx with Stage 1A grade 3 endo MMMT in 11/2009. First Onc said no Treatment necessary. Second Onc said to be on the safe side 6 treatments of chemo. I was devastated but not for one moment I hesitated. I know how much fear of the unknown this must be for you, and how scared you must feel. I felt the same way when I was dx. The other lady was right, the Doctors are the experts and they are well advanced in their treatments. I did not have radiation or the external, so I can't tell you much about it. Hopefully, some of the ladies here will give you some info. I wish you all the best and hope you make the right decisions. So many ladies here have gone through radiation and the external and did well. So can you. Be Brave and it's okay to have a second opinion. Please keep in touch. J

Doris_J
Posts: 6
Joined: Jul 2012

Thanks for the reply. I wonder why some women have chemo and others have radiation? Yes, I am scared and confused. I went out to eat this morning with friends and they were joking and laughing and all I thought was, "How can you joke around!" I find I am getting angry at people and snapping at them.

I go back to work on Wednesday (off 4 weeks for my hysterectomy)and will have to keep my feelings under control. My radiation will not start until around the 20th of August. I hope to work at least 6 hours a day then go for the radiation. The last 3 weeks I guess I could go back on short term disability if I need to.

I keep saying my mantra: Lord, keep me safe and strong (help me handle all of this).

Thanks again, Doris

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

From what I gather there's no one specific protocol. My first gyn onc recommended nothing after tah, but his partner recommended 6 chemos + external rads (no brachy). I had very few side effects from both tx (chemo was bone pain, insomnia, constipation; rad was fatigue and loose stool after 3 weeks for 3 weeks). Talk about your concerns with your radiation onc...they can be incredibly reassuring

Liz in Dallas

Doris_J
Posts: 6
Joined: Jul 2012

Hi Liz,

Has anyone told you your smile is infectious!? You make me want to smile (and I do)! I went for my final x-rays today and they have my pelvis marked up like a road map. I can now tell people that I have tattos. 3 pinpricks of blue ink! Tomorrow is the big day and I am nervous but ready to start and get it over with. My appetite has not returned since the hysterectomy so I guess the food thing should be no big deal. My friend wants to go to Red Lobster on Saturday, I'll see if I can eat. Also going to a baseball game on Saturday. Most people seem to be fine until the 2nd or 3rd week.

It is so great that this site is here!

Doris

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

You'll find the treatments anticlimactic (I hope). The hardest thing to get used to was dropping trou in a room of techs behind nothing but a washcloth. But after the first couple of times I would drop trou in public if I had to. Fatigue didn't set in for several weeks, and even then wasnt debilitating. You can do this!

Liz in Dallas

Doris_J
Posts: 6
Joined: Jul 2012

Wow, just a washcloth! I get a full robe and get to keep my shirt and socks and shoes on. The techs are very nice and at the first treatment one of the ladies placed her hand on my shoulder and said she knew this was my first treatment. That was the best help of all.

They are building a hugh new cancer center right beside where I go and I got to sign the last steel beam that they are going to attach this Monday! I am going to show my friend before we go to the baseball game tonight where I signed it.

I still feel fine and hope to be strong.

Thanks to all that posted back to me :)

Doris

nempark
Posts: 596
Joined: Apr 2010

Yes Doris, I know what you are talking about. I remember my family came to see me when I was dx and my husband offered them a drink, then another drink. I was mad and in a dream, when I look back it seem as though I was seeing them through a veil and in slow motion joking and laughing. But then again when I look back and being fair---Life goes on, wait and see my dear all this will be in the past. You will learn how not to be angry and you will learn that this is part of the cycle of life. Life is full of tears and laughter fortunately, we have more joy than tears. May our Great God give you the wisdom to cope with this dreaded disease and help you to take one day at a time. I also must mentioned that for a long time I was angry with my husband and prayed diligently to stop being angry and to enjoy each day and each moment. So may I suggest that you do your utmost to enjoy each moment and don't forget that you still have the wonderful privilege of being able to go back to work, some of us can't, which means that you are still blessed. Remember, no one of your work mates or your family, not even you are responsible for your illness. We all at some time or another will get sick. So do your best not to be angry. Anger will add more to your problem. Believe me when we are faced with such difficult situations you never think that you can handle it. But the Lord, does gives power beyond what is normal and help us to continue life and to cope to the best of our ability. Be well my friend, be brave.Here is a little prayer I got from the Bible that I memorized and continuously repeated during my ordeal before surgery after surgery before chem and after chemo and have made it a regular part of my morning and evening prayer and even during day or when ever I need some assurance from God. It did help me through this whole ordeal (I PROMISE YOU IT WILL DO THE SAME FOR YOU)especially when the snakes show up their ugly faces at work.
HERE IT IS IT IS FROM THE BOOK OF ISAIAH 41 VERSE 10

DO NOT BE AFRAID FOR I AM WITH YOU.
DO NOT GAZE ABOUT, FOR I AM YOUR GOD.
I WILL FORTIFY YOU, I WILL REALLY HELP YOU.
I WILL REALLY KEEP FAST HOLD OF YOU WITH MY RIGHT HAND OF RIGHTEOUSNESS. This verse helped me a lot when I was feeling angry. be well and let me know how well you are doing. j

nempark
Posts: 596
Joined: Apr 2010

Yes Doris, I know what you are talking about. I remember my family came to see me when I was dx and my husband offered them a drink, then another drink. I was mad and in a dream, when I look back it seem as though I was seeing them through a veil and in slow motion joking and laughing. But then again when I look back and being fair---Life goes on, wait and see my dear all this will be in the past. You will learn how not to be angry and you will learn that this is part of the cycle of life. Life is full of tears and laughter fortunately, we have more joy than tears. May our Great God give you the wisdom to cope with this dreaded disease and help you to take one day at a time. I also must mentioned that for a long time I was angry with my husband and prayed diligently to stop being angry and to enjoy each day and each moment. So may I suggest that you do your utmost to enjoy each moment and don't forget that you still have the wonderful privilege of being able to go back to work, some of us can't, which means that you are still blessed. Remember, no one of your work mates or your family, not even you are responsible for your illness. We all at some time or another will get sick. So do your best not to be angry. Anger will add more to your problem. Believe me when we are faced with such difficult situations you never think that you can handle it. But the Lord, does gives power beyond what is normal and help us to continue life and to cope to the best of our ability. Be well my friend, be brave.Here is a little prayer I got from the Bible that I memorized and continuously repeated during my ordeal before surgery after surgery before chem and after chemo and have made it a regular part of my morning and evening prayer and even during day or when ever I need some assurance from God. It did help me through this whole ordeal (I PROMISE YOU IT WILL DO THE SAME FOR YOU)especially when the snakes show up their ugly faces at work.
HERE IT IS IT IS FROM THE BOOK OF ISAIAH 41 VERSE 10

DO NOT BE AFRAID FOR I AM WITH YOU.
DO NOT GAZE ABOUT, FOR I AM YOUR GOD.
I WILL FORTIFY YOU, I WILL REALLY HELP YOU.
I WILL REALLY KEEP FAST HOLD OF YOU WITH MY RIGHT HAND OF RIGHTEOUSNESS. This verse helped me a lot when I was feeling angry. be well and let me know how well you are doing. j

pakb56
Posts: 141
Joined: Jan 2012

I had 6 rounds carbo taxol folowed by pelvic radiation. Side effects fromradiation were minimal except for developing a yast infection. What got me thru this was having confidence in my healthcare team and trusting they were making good treatment decisions for me. I did then and do now pray daily that the Lord guides them in making those decisions on my behalf. We are not on tthis journey alone we walk this road together following those that came before us and for those that follow us, we are hopefully providing the support and encouragment to continue on.

Take care, PAt

sleem
Posts: 92
Joined: Feb 2010

This article is not from 2012. However, it may or may not provide you a start. I'm UPSC 1A stage 3 and had the 'sandwich method'. At that time in fall of 2008 for my surgery, whether to have topical radiation Vs the cuff were having about the same success for survival for my set of circumstances. I'm not up on research right now. At that time, both my doctor and I agreed to the cuff only for me and my situation. I based my decision on all the research I did before my surgery. My doctor and the research I read had the same opinion. I'm 3 1/2 years NED. Each of us have our own story & history and vary for what is best for our circumstances. Hang in there and best wishes along your journey and in the decision you and your doctor come together for you :) :). The link is below:

From OncoLog, April-May 2010, Vol. 55, No. 4-5 Printer-friendly version

Compass, a quarterly supplement to OncoLog, discusses cancer types for which no standard treatment exists or more than one standard treatment is available. Our goal is to help readers better understand the nuances of management for such diseases and the variables that MD Anderson specialists consider when counseling patients about treatment alternatives.

Early Uterine Papillary Serous Carcinoma
Treatment Options Tailored to Patient and Disease Characteristics

By Sunni Hosemann

http://www2.mdanderson.org/depts/oncolog/articles/10/4-5-aprmay/4-5-10-compass.html

sedonafree's picture
sedonafree
Posts: 8
Joined: Apr 2012

Hi Doris,
I was a IIIC and received radiation with cisplatin added, after I healed from surgery. I read up on the Trilogy machine, which is the best and hopefully your hospital has it. I decided to be positive, and view the machine as my "friend", not be scared, and believe in the treatment.

I received 28 sessions, lasting about 7 minutes each...during the 14th, I was feeling tired. I would get it at 10 am, come home, lay on the couch and eventually fall asleep.
By Friday, I would be the most fatigued, but then had some recovery on Sat and sunday.

During the last 8 treatments, I had to take Immodium, and then I didn't take enough, and it got away from me so I was prescribed something that was stronger, and the nurse got me through with instructions how to take the pills. It is good to call them early, rather than later when you are not sure about diarreah...spell?LOL anyway, it was finally day 28 and I was finished...

I ate 80 grams of protien every day...this is most important, because your body needs protien to heal the tissuesl...I did very well, and continued this throughout the chemos to follow. I was treated at Sloan Kettering in NJ. I can't emphasize enough how important it is to eat however many grams they advise. I am 5'9, weigh 155 and that was bout half my body weight in protein.

You can do it! I am so happy I had it.

Doris_J
Posts: 6
Joined: Jul 2012

Thanks for the advice! I am hoping to continue to work but can take FMLA if I have to. I also am getting 28 treatments with 2 or 3 internal at the end. I had my "dots" placed on me this past week. I feel more relaxed now that I did that, the people at the hopital were very nice. I am getting 3D Conformal radiation.

They are very nice at work also, letting me come in early since my treatments are mid-afternoon. After my treatments I will go home in case of side effects.

I have a friend who went through this also but when I told her I had cancer SHE cried, not me. She also started telling me how the treatments hurt for the internal brachytherapy. She then started telling me about other tests SHE had and how they hurt. I have not talked to her since but she started freaking me out so that is why I asked the question about external beam radiation.

It is bad enough having to go through this without repeatedly telling me bad things! From what I have read many women continue to work and the side effects from radiation are tolerable. I NEED POSITIVE THOUGHTS!!!!!

I will have to talk to my friend sometime again but I have decided to tell her that I don't want to talk about my treatments!

I think everyone on this site is so very brave and I wish everyone positive thoughts!!!

Doris

Pat51
Posts: 111
Joined: Feb 2011

Good luck with your treatments. I have stage 1B UPSC. I had six rounds of chemo followed by 3 brachtheraphy radiation treatments. I did have side effects from chemo, as most do. However, the radiation was not a problem. There were no side effects and it was not painful. I guess that everyone is affected differently. I finished treatment about a year ago and have been NED so far. Best of luck to you with your treatments. I hope that you breeze right through them with minimal side effects.

Pat

Susanna23
Posts: 66
Joined: Dec 2010

Dear Doris
I too was diagnosed with Stage 1a Grade 3 nearly two years ago now. Because I had uterine carcinosarcoma (MMMT) like June (Nempark) I was advised to have chemo rather than EBT or brachytherapy. I finished my six rounds of chemo in April 2011 and so far I am fine. Between my surgery and pathology analysis (where they found it was MMMT not the more common adenocarcinoma) I did research radiotherapy and thought that was what I would have but my oncologist did not recommend it and now it is being held in reserve should I be unlucky enough to have a recurrence in the pelvic area (you cannot have radiotherapy twice in the same area of your body).
Hope this helps and I wish you all the best - I certainly remember how scary this stage is - especially the mention of Grade 3 (it is two years to the day since I first noticed my post-menopausal spotting symptoms and I am extremely grateful and lucky to be here thanks to the great treatment I had here in the UK).
Please get in touch if you have more questions.
Susan (London)

Ro10's picture
Ro10
Posts: 1471
Joined: Jan 2009

Hope all goes well with you. I had 28 external radiation treatments. I had minimal side effects. Had fatigue towards the end of treatments. I also had some nausea. Most people get diarrhea, I got nausea. It is scary because you don't know what to expect. Take it a day at a time. We are here for you. In peace and caring.

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