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Brachytherapy

Phyllis1
Posts: 2
Joined: Jul 2017

 I had a complete hysterectomy two weeks ago for endometrial cancer it was a grade one stage to it was more than halfway through the lining and started to get to the top of the cervix  The recommendation from the oncologist and from the tumor board is 25 external beam radiation treatments followed by three Brachtherapy. That we all begin one month from now so that I have time to recover from my surgery  The doctor said fatigue and diarrhea would probably be the side effects from the external radiation. She said in 16 years of practice she's only had three patients who are unable to do the Brachtherapy. She said that I would then have to use dilators as you can imagine this is my first appointment with her I had a lot of questions and I was sitting there in tears for most of the appointment I thought I'd have the surgery everything will be fine and that would be it just go on and live my life  now when I go online and see what has to be done with the dilators I am more than afraid of those three treatments and having to have this aftercare that I must do for life  I have read were other people say they're in pain it was the most difficult thing they've had to do and I'm afraid this is all being done so that if there are any cancer cells left behind the radiation pills them and prevent a recurrence but yet I still have to see her every three months for the first year and then it goes down to twice a year and then to once a year well if they really believe that this would take care of the problem then why would you need to see them so very many times it's just so confusing  and so overwhelming if anyone out there has gone through this BRACHTHERAPY please let me know your experience she told me to not go on the Internet to not look at sites because everyone's experience is different I find it difficult to believe that internal radiation wouldn't cause side effects when in fact  scar issue is with the side effect would be is it painful what goes on please help thank you ladies 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1619
Joined: Jun 2015

https://csn.cancer.org/node/296985

Phyllis, just wanted to welcome you to the board and share the above link with you. It has loads of information about radiation treatment with discussions from several of us on this board. So sorry you had to find us but I'm glad you did. You will find lots of support and answers from the many wonderful ladies that come here. Please come back and let us know how you are doing.

Love and Hugs,

Cindi

ps - For me, brachytherapy was the easiest part of my frontline treatment. If you are sensitive, they can apply lidocaine to your vagina prior to inserting the rod and you won't feel a thing. Post treatment may bring you some slight burning but nothing that really hurts. While the dialators are annoying, they really are not a big deal. I have been using them for 1.5 years now and am mostly good about doing the required 2 Xs per week for 10 minutes. So far, so good for me.

CheeseQueen57's picture
CheeseQueen57
Posts: 890
Joined: Feb 2016

Phyllis. So sorry you have to go through this. But we have all been there. And you're right. Everyone's experience is different. I can only tell you mine. I had Stage 3c, Grade 3 endometrial cancer. Hysterectomy followed by 14 out of 18 weeks of chemo. I had a stroke that ended my chemo. I had 28 days of external radiation which was mentally more difficult for me than chemo. I had a lot of nausea because I had to have the radiation high because of one lymph node. The combo of radiation and probably steroids during chemo caused an insufficiency fracture of my sacrum.   I also had 3 sessions of internal therapy. The after effects I've suffered are frequent bladder infections and burning (which I think I've solved with vitamin e suppositories). I am plagued with very tight pelvic muscles for which I am seeking pelvic floor physical therapy and I hate the dilator!   All this has made sex totally impossible and I'm not sure that will ever improve but I'm working on it. 

I don't say this to scare you. You may not have any problems. The point is that you must do anything you can right now to SAVE YOUR LIFE! Your best chance is to prevent a reoccurrence. If it comes back, it's harder to treat. No matter what side effects you suffer you have to have the perspective that it's better than being dead. That's my opinion 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1619
Joined: Jun 2015

Cheese, Just wanted to mention that I also got the vitamin e suppositories after the discussion we had several weeks ago. I had some itching after sex or using the dialator that I never gave a thought to. But, after reading the positives on the e, decided to try it. What a difference that made!  I hope you find relief and healing so that things get easier for you. Since I had issues prior to all of this, I come from a different perspective. Finding lidocaine (from my radiologist) made sex without pain for me possible. So, I guess I am not the best one to assess brachy from an impact perspective. I think I have a love/hate relationship with the dialator. I don't like doing it, but I'm happy to have it done (always dread doing it for some reason) so that I maintain a healthy vagina. And, it doesn't  hurt me,  so that isn't an excuse I can get away with not to do it. lol

Love and Hugs,

Cindi

MAbound
Posts: 990
Joined: Jun 2016

Was the cancer penetration greater than 50% in the lining (endometrium) or myometrium (uterine muscle)?

Knowing the difference is important to your decision because penetration of the muscle as opposed to the lining greater than 50% and cervical involvement and/or origination of the cancer in the lower uterus are factors that up the risk for recurrence even with a lower grade/stage of cancer. It is why the radiation they are recommending for you is considered the standard of care when those factors are present. Lymph node involvement is also a factor, but it doesn't sound like you have that issue.

Lower Uterine/Cervical involvement ups the risk that cancer cells were shed into the vaginal cuff area and may not have been removed by surgery alone. The radiation is an insurance policy that increases your odds of remaining NED, but unfortunately does not guarantee cure. I think that uncertainty and the risks of Pelvic Radiation Disease is why we are all question the risk/benefit of subjecting ourselves to it when it's recommended for our treatment plan. What you read on the internet about Pelvic Radiation Disease is truly hair raising stuff and I don't blame your doctors for cautioning you against reading it. You have to remember it's like all of the drug commercials you hear on TV. They are giving you all of the possibles, but it doesn't mean that you'll necessarily experience them.

There are different types of delivery methods for radiation that are available and you should try to familiarize yourself with them so that you can ask your radiation oncologist what he plans to use on you and why. There's EBRT (external beam radiation therapy); Brachtherapy (internal); IMRT (intensity-modulated radiation therapy), IGRT (Image Guided Radiation Therapy); RAPIDARC (Volumetric Modulated Arc Therapy); Respiratory Gating; SRS (Stereotactic Radiosurgery..used for brain cancer); SBRT (Stereotactic Body Radiotherapy), 3D-CRT; Electron Beam Therapy (used for skin lesions and cancer node sites); and fractionation.

Not all kinds delivery methods are available at all radiation centers or are appropriate for all types of cancers or are covered by insurance. I would have preferred the IGRT, but it's exponentially more complicated to deliver and therefore more expensive and wasn't covered by my insurance. The 3D-CRT is very similar and the closest alternative to that.

I had whole pelvic radiation using 3D-CRT (conformal radiation therapy) that spared surrounding organs to the extent possible by shaping the rays to a narrower area and had an external vaginal "boost" rather than brachytherapy. My understanding is that the two achieve the same effect but the brachytherapy is delivered internally while the boost is given externally. The worst side effect for me has been constipation rather than diarrhea like the majority seem to experience.  I finished RT last December and it's still an issue, but I'm coping with it relatively well and that actually may be residual nerve damage from the chemo and the radiation just exacerbated it.

Two things that seem to help a lot of us during radiation is being sure to drink plenty of water daily and taking a good probiotic like Culturelle. Other than that, there'll probably be fatigue and diarrhea or constipation and that varys in degree from individual to individual. Plan to give yourself time to rest. It seemed like my blood work (RBC, WBC, etc.) took longer to recover from radiation than it did for chemo; that may account for the fatigue. 

Good luck with what you have facing you, I know it's scary thinking of the possible risks of the RT, but you have to weigh those against the risks factors for recurrence that you know you have. Now is the best opportunity you have for a cure; this cancer is a lot harder to get rid of if it comes back so you want to give yourself the best chance possible.

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

my cancer was 3C and i had both external and internal radiation as well as 6 rounds of chemo. Like MAbound I also have constipation with all my treatments ending June 2016. So far so good for me as my scan showed all clear last July. For me brachytherapy was painful and I must admit part of my problem was I did not have a pleasant or caring radiology oncologist. I use the dialator but not as often as I should. My husband and I have not been having sex. He has prostate cancer. Keep in mind as others have said everyone's experience is different. I am very happy to be alive.

Donna Faye's picture
Donna Faye
Posts: 373
Joined: Jan 2017

Phyliss, I breezed through 5 brachys - not one side effect! However, I credit it all to my radiation oncologist and his staff. His mom was a RO and she certainly taught him well. Talk to your provider and be honest about all your fears. If he/she is worth their salt, they will guide you through it. I had a terrible experience with the oncology group with my chemo so was not going to do the brachy, but one hour with my RO and I went for it. I hope the same for you.

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

PHyllis, like the others have said, brachytherapy is really easy.   You don't feel nothing.   Yes, you are supposed to use the dialator several times a week or be active in "other" ways.   I didn't like the dialator and I wasn't active.   It is only most recently that I have been getting some late long side effects from the brachythereapy.    Please note that it took over 9 years for anything to appear.   And of course it was all due to scarring.   I am almost 12 years out from my initial diagnosis.  I am currently undergoing acupuncture and surprisingly it is helping to lessen my recent pain from scarring.   

Kathy

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