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Post hysterectomy radiation Post hysterectomy radiation

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  #1  
Unread 04-23-2011, 12:50 PM
Post hysterectomy radiation

Hi everyone!

I am 4 weeks post op and just found out that my doctor wants me to do 6 weeks of radiation. I am very scared of this!! i did the whole looking online at possible side effects and EEEK! it makes me sad that my doctor left my ovaries so that I would have normal hormone functiion and now they are going to get fried! I am worried about possible permanent damage to my bladder and the wonderful side effect of diarrhea. Also trerrifying is the more rare issue of fistula. And what is to become of my vagina? Will it fare ok in all of this??? Ugh. I like the idea of radiation cutting my chances of cancer coming back by two-thirds... but I am so scared.

Does anyone out there have a story of tolerating radiation well or at least having evrything recover and go back to normal?? I so hope so!!! But I am a realist... so I am interested in any and all radiation experiences. Just really hoping there is a story that will offer some light into my doomy head.

Also interested in ideas/insights into how to support my body, bladder, etc. while going through this.

Love~light~healing... Valentina
  #2  
Unread 04-23-2011, 02:12 PM
Re: Radiation Fears

I finished external radiation on March 23, 2011.

Having external rads is like having an x-ray. You have to lay still and the machine points at you and gives you rads. In my case, they blasted me from four different directions 90 degrees apart. No pain during treatment.

You can read my posts when I was having my rads for when I had what side effect, but I remember the last two weeks of treatment and the first two weeks after treatment were very hard: I was constipated and had diarrhea simultaneously, plus my hemorrhoids were swollen and inflamed and HORRIBLY PAINFUL. I was also very tired during this same time.

If you have hemorrhoids, I would advise starting to use Prep H before you have your first treatment and throughout treatment. Apply liberally after every treatment and after every BM even if you have no symptoms. I had no hemorrhoid symptoms until suddenly one day they were a MAJOR OWIE!

Keep in mind you can't have any lotions, Prep H, etc. within 3 hours of treatment (check with your doc because this may vary from doc to doc and patient to patient).

Citrucel caplets, Playtex wipes, and Pyridium were (and the first two still are) my friends. If the Pyridium wears off before time for the next dose, divide the dose and take it every 4 hours. It's very important to keep ahead of pain in the urethra and butt, as playing catch-up means you suffer while you wait for stuff to work. Charmin sensitive with ALOE was and still is my friend, too.

I have had vaginal (dryness and I can't get the dialator "up there" (maybe scar tissue), and continued bowel issues (hemorrhoids still hurt if I eat the wrong thing; sudden need to urinate and/or defecate, plus diarrhea and constipation... I have had a few accidents),, . But, I expect things to get better down the road. It is already better than it was...

I had a little nausea, but it usually only lasted 10-20 minutes and it normally happened about an hour after treatment. Every once in awhile, I still feel nauseaus, but it's not horrible, and eating a little easy-to-digest carb usually helps.

If you are working during radiation, try to get your schedule set so you go to treatment right after work so you have maximum recovery/rest/sleep time before going back to work. I worked as a police officer and radiation didn't make me miss any work, but had I not been able to work 3rd shift and do radiation early in the morning, I would have missed work, especially during the last two weeks of treatment and the first two weeks after.

Listen to your gyn onc, rad onc, rad onc RN, and rad onc techs... they have ways to help you manage side effects. This is very doable, even though it can get a little rough.

God's blessings and good luck!
  #3  
Unread 04-23-2011, 04:21 PM
Re: Post hysterectomy radiation

I scared the crap out of myself by looking up the side effects of radiation. I almost backed out of doing it.

It was nowhere near as bad as I imagined. From what I understand, the machines they have today are far more precise about getting the radiation where it's supposed to be so there's less damage to surrounding organs. One of the big tips they gave me was to have a full bladder - the bladder acts as a balloon that lifts everything out of the way.

The treatments themselves were fast and painless. I live near the cancer center - I could drive down there, get my treatment and be home within half an hour. The radiation therapists were so supportive - I kind of looked forward to going in every day. They all gave me hugs after my last treatment.

I didn't have any side effects until about treatment 10, and then it was just mild diarrhea. Immodium and being careful about what I ate took care of that. I got two very mild burns on my hips - hardly noticeable at all.

The worst side effect I had was burning with urination. It was so bad I cried every time I had to go. A lot of people don't have problems with that.

I finished rad in December. The bladder issue started getting better within a few days and cleared up completely within 2 weeks. It's a distant memory now - I probably would've forgotten in completely if I quit posting about it.

I had some fatigue for about a month or two after but I think that was as much or more from chemo than rad.

All in all, going through treatment was better than all the extra anxiety I'd have if I hadn't done it. Like you said - it makes the chances of no recurrence much better.
  #4  
Unread 04-24-2011, 08:42 PM
Re: Post hysterectomy radiation

Thank you so much for your replies. I was REALLY hoping to hear a story about the body returning to normal... and alas! Here it is!! I don't expect dealing with cancer stuff to be a picnic, but it would be nice to have a bright shiny light waiting for me at the end of my six week journey. So thank you very much.
  #5  
Unread 04-25-2011, 07:30 AM
Re: Post hysterectomy radiation

Well, there's some good news to the fact that you aren't hearing about positive radiation experiences....it means those women have all moved on in life and don't visit the forums very often. There are MANY women that made it through treatments with minimal side effects.

Its those of us that have long-term issues that continue seeking support and advice from the forums. So yes, most of our responses will carry long-term effects warnings. But if you look at the positive note in this...we're still alive to complain about long-term effects!

Going in with a full bladder helped me. I had a variety of digestive issues and went on a high-carb/low residue diet for a few years. I did have some scarring to my bladder, but that side effects from that have been controlled with Detrol. And I'm happy to report the further from treatment I get the more improvement I see. Instead of taking the Detrol daily I'm not taking it once every 2-3 days. I've even been considering going to just a few times a week to see how things go.

Immodium will help. Gatorade will help. A low residue (fiber) diet will help too. I had a terrible time with fatigue. I think part of that was due to not being able to eat (the body need fuel and I ran it on empty the whole time--such a mistake!) I spent a lot of time resting/sleeping.

Remember, treatments are just 6 weeks, and in return you are getting added insurance for your life. While those 6 weeks may be difficult at times, it will end. And you will get better. And life will go on.
  #6  
Unread 04-25-2011, 03:13 PM
Re: Post hysterectomy radiation

Hi Valentina - I have some long-term side effects from rads and surgery, but if faced with the decision to do it again, I'd say "yes" all over again. I had to have it to increase my odds of being here today, and I'm glad I did. I'm alive; I'm healthy; I'm happy.

Please know that the side effects some of us have are not common among all of us. Good luck making your decision!
  #7  
Unread 05-13-2011, 02:45 AM
Re: Post hysterectomy radiation

Thank you all for your replies. means so much. The saga continues. I just found out that I have to do 3 weeks of internal radiation after the 5 1/2 weeks of external. I am really scared of this. For some reason, (naiveté) I believed that there might be a possibility of saving an ovary, but I am now informed that they will both be damaged by radiation. So, hoping to hear from anybody that would like to share about internal rad and forced menopause. I am worried about the side effects of treatment, my sex life after treatment and any advice on how help my body go through all of this gracefully. And... what is menopause really like? My dr. says that they don't like to prescribe hormones anymore due to breast cancer risks. Has anybody gone through this naturally with too many issues? I'm so scared of all these changes.
  #8  
Unread 05-13-2011, 09:19 AM
Re: Post hysterectomy radiation

Valentina, I was 28 when I started my cancer experience and ended up in treatment-related menopause as well. My doctor tried moving my ovaries during surgery. We tried birth control to keep them "quiet" during the post-op treatments...but neither attempt at saving them worked.

When I started having what I referred to as "warm flushes", mood swings (I was ready to tear my co-workers eyes because he said hello to me lol), and severe chocolate cravings I called my doc. She ordered an FHS (or FSH-I get the letters confused) test to check hormone levels. I was at a 50-55 I believe. Anything over 30 is considered menopause. She started me on an oral HRT and it worked wonders.

Cervical cancer isn't related to estrogen, so most cc patients do fine with HRT. However, this is based upon each individual's medical history. If you have a family history of breast or ovarian cancer that would definitely be cause for concern. There are pros to having estrogen, but you have to weigh those pros/cons for yourself, based upon your particular case, age, history, etc.
  #9  
Unread 05-13-2011, 11:16 AM
Re: Post hysterectomy radiation

I had my ovaries taken during surgery. I was 49 (almost 50) and perimenopausal at the time. The first couple of months weren't too bad - fat cells store estrogen and I have plenty of those so it helped cushion the blow.

About 3 months after surgery, my hormone levels crashed. I went from feeling normal one day to extreme mood swings and extreme dryness the next. It hurt just walking or sitting down. I used Astroglide to keep things moist and my doctor temporarily put me on an antidepressant that was supposed to help the mood swings and the dryness. I had really bad hot flashes and night sweats and insomnia for awhile.

After a few months, things leveled off. My moods are back to normal - in fact better because I had PMS-type problems before menopause. The dryness is better and I only occasionally have a hot flash.

You weren't naive to hope to save an ovary. It was worth trying.
  #10  
Unread 05-15-2011, 03:42 AM
Re: Post hysterectomy radiation

Thank you ladies. It is so amazing to be able to connect with others that have been through it. My friends and family are amazing, but they really don't understand. It feels so good to be able to hear from women like yourselves, that have walked the line. It is also very inspiring to imagine you ladies being done with treatment... I can't wait until that is my reality. I am so scared of treatment and all the side effects that I may have to endure, but even more scared of not having the beautiful experience of living my life anymore. Soooooooo... bring it on I guess. If you ladies could do it, so can I. Another thing I've been struggling with is this mysterious possibility of the radiation causing secondary cancers. Does anybody have thoughts on the matter? I know all of my messages have been kind of doomy... the truth is, I am still really deep into my fear stage of this process. I do feel like I am getting closer to accepting what lies ahead, but boy... this is such an intense emotional roller coaster. Again, thank you beautiful ladies for reaching out... it means the world to me right now.
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